Meniere’s disease is a disorder of the inner ear that can lead to dizzy spells (vertigo) and hearing loss. In most cases, Meniere’s disease affects only one ear. Meniere’s disease can occur at any age, but it usually starts between young and middle-aged adulthood. https://g.co/kgs/8CVygr
One of the things I always wanted to do from the time I was a small child was write an autobiography. I’m not sure why this was, maybe it was my fascination with reading and my exposure to the autobiographies of Winston Churchill & Bertrand Russell at a young age, but it was something I always wanted to do myself and never managed to do.
Writing an autobiography in longhand was never even a consideration. Dysgraphia saw to that long before I even knew I had it. Writing in a computer interface is magnatudes easier for me, something I utilized to increase my production on the job in earlier years. But being able to work more at architectural design was the other reason that writing an autobiography never materialized until recently.
I was many things before I was afflicted with Meniere’s. A father. A husband. One of a number of siblings; the oldest after our brother was killed in a motorcycle crash at the age of 21. Four of us grew up together, with a fifth who was raised almost as an only child because of the complexities of modern marriage.
I was also an architect for a brief time.
It’s what I knew I wanted to do from when I was a child. I would explore construction sites every time I stumbled across them (still do if I have someone with me to watch my back) built structures with wooden blocks to test them, then carefully disassemble the failed structures to see what caused the failure. Dreamed of being an archaeologist long before the name Indiana Jones was a thing. All things constructed by humans fascinated me. I would disassemble broken electronics just so I could see what secrets were inside them. I wanted to know how everything worked.
It was a drafting class I took in high school as a senior that gave me an avenue into my chosen profession. It had never occurred to me that everything man built had to be documented first. This is true even today, especially today, with the ease of design using computer assisted drafting. Even simple projects benefit from time spent designing in advance of construction or fabrication. Every piece of furniture purchased at IKEA has a set of documents to illustrate it’s assemblage; and every page of those documents has to be created by somebody. The illustrations have to be crafted by somebody with an eye for what perspective will best show how the assembly occurs.
I was one of those people. I took great pride in my documents. While my name isn’t on any assembly documents for furniture, I did do a stint in a cabinet shop. I worked for a civil engineer for a brief period. I learned how to pace out yards with reasonable accuracy while carrying a large load of sensitive equipment. But my love was for buildings first and foremost, so the majority of the work I took on was for home designers, builders and architects. I had a hand in the renovation of the main building for Zilker Gardens here in Austin (my favorite project) I worked on several school buildings. I designed several parking garages. I researched and documented every door in the Motorola MOS 13 building project. Fifty-four(ish) details in all, just for the doors, including a faraday cage isolation room and an explosion-proof door for hazardous storage.
It takes a college degree to become an architect these days. If you want to be a structural engineer it takes a degree and 10 years of apprenticeship. I couldn’t afford college without work, so I took classes for drafting from a local trade school, and eventually ended up moving my family to Austin to be near a university with an architecture program.
When the Wife got pregnant, I gave up the idea of college and taught myself enough architecture to pass the exam, then worked for architecture firms long enough to qualify to take the exam. This was the apprenticeship approach to earning a professional license, a common practice in years gone by. For centuries apprenticeship was the only way to earn the right to call yourself an engineer or an architect, and Texas was one of the last states to allow this form of professional training.
I just made it in under the wire, having to retake the only portion of the exam I failed after the new rules went into effect. Funny thing was, I figured out that I had failed that portion of the exam while reviewing my work walking to the car after the exam ended. It took 6 months for the state to inform me of this fact, and by the time I went back in to retake the exam the next year it was given on computers instead of requiring applicants to draw everything by hand.
That was how fast computer assisted drawing (CAD) took over the architecture field. I was being told “we’ll never have computers drawing for us” by architects in the field one year, and knowing not one but three different CAD programs within the next 3 to 5 years, and the test to become an architect only offered on the computer shortly after that.
Architecture is a high-pressure field. Lots of time stress. Computers being introduced to the design process increased the time pressure by an order of magnitude, at least. I always worked long days (10 hours at the shortest) but with CAD the effort to produce drawings became something that could not be easily substantiated until the end of the process and all of the drawings were printed for approval.
Before CAD every drawing was physical and took up space in a drawer somewhere. Every floor plan comprised of multiple sheets of Mylar or vellum, vacuum compressed and reproduced before being sent on for printing. Drawing production was an expensive process that you didn’t embark on before getting the design of the building pretty thoroughly mapped out. You wanted as few changes as possible to show up after you started the production documents phase of process.
After the introduction of CAD into architecture, the design phase began to merge with the production phase. With CAD, designs that looked ready-to-build could be produced (given setup time to produce templates) in a matter of minutes, not months. You want to increase the size of the building? No problem. Redesign the entire exterior while the building is under construction? Can do (did do) this erosion of the design phase continued until the design of a project began to be something that was almost an afterthought and not a deliberative phase that could take longer than construction itself if it was done right.
There was an insiders joke about scope-creep that was almost meaningless by the time I left my job drafting architecture projects; scope-creep being the tendency to keep piling new things into a project, without ever admitting that you are increasing the work performed by the design professional and the construction firm. When we changed to computer files from physical documents, scope-creep became almost impossible to document, since no record of a change existed beyond the date-stamp on the drawing files or taking the time to compare documents line by line to catch the changes. With thousands of pages to look over in larger document sets, this is a process that almost never catches all the changes.
A consequence of this increased workload is that the days for production staff, people like me, got longer. I went from working 50 hours a week to routinely working in the neighborhood of 80 hours a week. Sometimes much more in one week (114 I think is my record) if that week contained a deadline near the end of it. Pulling an all-nighter became a thing outside of college, as some of my college educated co-workers noted. The stress becomes more intense, as the pressure to produce mounts.
That’s when the symptoms started. The loss of hearing came first, long before the other symptoms. Every Spring and every Fall since 1987, I’d suffer migraines and feel pressure in my ears that I couldn’t get rid of. In the late 90’s I started getting feelings of dizziness and disorientation to go with the ear pressure. The tinnitus started to be an everyday thing, not just a Spring/Fall thing. In 2001 the vertigo and the resultant days of brain fogginess started to be a regular occurance. I was so blindsided by this betrayal by my own body that I probably even started hallucinating external causes for my problems. The menieres was so bad at my last job that there was not a single week where I wasn’t out for at least a day with vertigo. Sometimes two or three days. I was able to be commended for producing an entire project’s documents in a single day and get fired for being sick too much all within the same eight month period. That was the functional end of my architectural working life.
Because my internal balance mechanisms were misfiring so often my body re-circuited my brain, bypassing those faulty balance indicators. There is no other way to describe what has happened to me. I trained myself consciously and subconsciously to ignore certain sensory inputs. I no longer suffer from motion sickness while traveling in a car; when, before, I could not read or even close my eyes in a vehicle without getting queasy. Now I don’t even notice I’m moving if I’m not looking out the window to see it.
I lost a key portion of my architectural talent in that process. I lost my ability to map space internally. This was a skill I developed from coping with dysgraphia, an ability to retain and synthesize data without having to write it down first. Most people cannot do this but I could and I demonstrated it repeatedly. This skill was how I managed to design things entirely in my head and on the computer. I could picture all of a construction project in my head just by studying design sketches and assembling the pieces that would go into creating each and every detail of the project. I could even tell you exactly what tool in which CAD package that you would need to use to achieve the drawing you wanted to create.
Gone now. All gone now. I can’t find my way across town without a map these days, much less be able to effortlessly visualize a construction project. I doubt that the talent I need to create construction drawings will ever come back. I’m starting to accept this, although I don’t know what I will do now that I’m not a CAD guru any longer.
Being out of work, my daily routine since 2005, has been a mixed bag of experiences. I’ve been able to watch my son grow up, something I missed when my daughter was a child. I was almost never at home when she was awake and spent most of my time with her rocking her back to sleep in the middle of the night. The major reduction in stress levels means I can go an entire month without a vertigo attack, which is a huge blessing from where I’m sitting. Treating the remaining symptoms is more about establishing healthy behavioral patterns than it is about anything else. Eating, sleeping and exercising all in their appropriate quantities.
Having time to fill and not much ability to do more than type on a keyboard has afforded me a chance to at least approximate one of the other lifelong goals of mine. You are reading a portion of it. I hope it was enjoyable.
I’ve been meaning to write this post for years. When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said “you should write this all down so that other people can find out how this is done. I’ll even refer my clients to it” (I’m going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.
A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don’t know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.
…and it all started with the lack of a US birth certificate. Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.
I gave up working very grudgingly. I had been out of work for months before my last official full time job. I worked some contracts in those months, but mostly I just looked for work and wished I could get hired on somewhere. This lack of full time employment went on for almost a year, maybe more than a year, and then I was offered two jobs simultaneously. There was a job available for me in Las Vegas that would have required me to move the whole family (I’m actually glad I didn’t take that one now) and the other job was here in Austin, working for an architect who was adamant he needed me. He said he knew what I was good at, was aware of what my health was like and needed me to save his business (his words) So I agreed to go work for him and turned down the job in Las Vegas that was offering more money.
I spent eight months working at my last full time job. Less time than I spent trying to find that job. Eight months of learning another CAD system (I think that’s 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible. The coup-de-gras for this whole endeavor was producing finish-out drawings for an office space in less than a day, just to demonstrate how the process could be completed quickly.
That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, all while suffering with weekly active vertigo and the accompanying brain fog that slows mental processes (a side effect of the vertigo) I spent months finishing the modeling and documentation on the building that was my primary responsibility, when that project probably should have been finished in weeks. That fumble that I couldn’t explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.
Unemployed, February 19, 2005. I was literally hopeless at that point. The months of contract work that I had engaged in before that final full time job had taught me that I wasn’t as good at my job as I remembered being. The two or three part-time contracts I got after that last full time job simply underscored this fact. I was failing to do the work required because I could no longer picture the construction in my head as I had done previously, the mental trick that allowed me to do the job that I wanted to do was getting harder and harder to grasp.
I didn’t know what else I could do, and the bills kept coming in, my health care incurring mounting costs of its own on top of everything else. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was something I could get. Something to keep the roof over my family’s heads. Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I’d give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.
The first thing you need to know about applying for disability is that you have to have doctors on your side in order for the application to be successful. You have to have a medical finding in writing. A statement from a medical professional that you have an illness which is covered as a disability. Luckily for me Meniere’s is one of those illnesses, and I had an ENT who was happy to backup my disability claim. So we filled out the government application forms, got the statement from my doctor, and then we filed all the documents and waited.
You do a lot of waiting when dealing with the government. Every time I mention filing or documents, you should understand that at least a month goes by before there is a response. That is if you are lucky. If you aren’t lucky they lose your paperwork and you have to refile and wait another month (that happened more than once) It’s also worth noting that every single application for disability will be denied the first time. So if you don’t intend to appeal, don’t even start.
The first application was denied (of course) So we appealed. That appeal was denied. On second appeal, we had to go before the administrative law judge. So I got all dressed up and went to that hearing, prepared to throw up on the judge if I needed to. That appeal was also denied (I probably should have thrown up on him) This was the point when I realized that what I needed wasn’t just an advocate for my Social Security disability claim. I needed an attorney, because the advocate I had just shrugged and told me he tried. Trying was not enough, in my book. I was owed disability and my family had to have income, one way or the other.
If you are thinking of pursuing a disability claim, start by getting an attorney on your side and save yourself some time. That should probably be the first thing to know, but it was the second thing for me. My new found attorney and I started another application through the process. This second application had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through, just like the last one.
We appealed. The appeal was denied. We appealed again. Then one day (months later) much like any other day in the life of the average chronic illness sufferer, desperate, feeling alone, feeling like the world just wants you to die quietly somewhere, my attorney called. She said “the Meniere’s isn’t enough by itself. We can’t get approved with just the Meniere’s.” She paused for a bit. “Do you think you are depressed?”
Am I depressed? Well, I couldn’t very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) the only other alternative to disability if I wanted to see my family fed. Feeling suicidal is a red flag for depression, so I admitted to her that I was struggling with just a little bit of depression. The entire tone of the conversation changed. She said something like that will make it much easier for me and got back to work on my case.
I had almost given up the faint hope that disability would offer when the approval for my claim finally came through. After two years of applications, denials and appeals, I was approved for disability payments. Just in time too, because we had scraped out the last of our savings and were in the process of hocking valuable items in order to get the bills paid that month.
The citizenship problem (2008)
There was just one problem, though. One tiny little hitch. Hardly worth the bother, really. See here, Ray Anthony Steele, you aren’t a U.S. citizen.
Excuse me? I’ve paid taxes my entire working life, starting at age sixteen. I’ve never failed to file, and I’ve never failed to pay. I even paid taxes twice in some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party. I’ve paid my dues for 30 years. I think I’m a member of this club, this club called the United States, and I would be seen that way by the government except for one tiny little problem.
When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box “US citizen” is checked. This is of paramount importance.
I was born overseas to parents who were in the military, stationed overseas. The hospital on the base where my parents were stationed didn’t have the ability to handle a premature birth, and I was early according to the doctor’s charts. So my mom went to where the premature birth care was, a hospital off-base that wasn’t considered part of US territory. All US military bases are considered part of the United States, just as all embassies are considered part of the country they represent. I wasn’t born on the base, I was born in England, at the hospital my mom had been sent to by the military doctors. As a consequence of this little snafu, I have dual citizenship. I’m a limey (it explains my love of a cuppa) as well as a US citizen. I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.
When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate. They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all. It’s a problem because that little notation on my Social Security record means I can’t claim benefits from the US government. So the government’s response to this was to say “so long Mr. Steele, don’t let the door hit you on the ass on the way out.” It matters not at all that taxes are deducted from our paychecks every time we earn a wage. It doesn’t matter that both our parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form. Believe it or not, this is the truth. If you aren’t a citizen, you can’t claim benefits because foreigners can not qualify for benefits even if they pay taxes here.
According to the computers at the Social Security Administration, I wasn’t a citizen. We had stumbled across this fact earlier in the process and when it was noticed by the Social Security representative who filed my paperwork I was assured that if the claim was validated, the citizenship problem wouldn’t be an issue. I believe the phrase not a problem was repeated then, too. Except it was. Because my birth certificate is British. Very clearly British and not American. What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. This was a piece of paper I didn’t have.
At this point I started talking to immigration attorneys. Immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I’m not even sure immigration attorneys know. I did find out that the specific document I needed was called a Council Record. If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.
A Council Record is an obscure reference for those who aren’t up on all this legal mumbo-jumbo. I’ll try my best to clear up the confusion here. The council (or counsel) in question in this instance is the United States ambassador to England and the United Kingdom. He is the councilor that has jurisdiction over births and deaths in the country that he is ambassador to, ergo Council Record. If you were born overseas you should have a document like the one above that says you were born to US citizens overseas. That is your US birth certificate, for all intents and purposes. Hang on to that document if you run across it. It is your lifeline to access government services.
I didn’t have a council record. I had never seen said document before. I had no idea what it looked like, so I started talking to relatives. I talked to my mom first. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn’t find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960’s. So I went back to the immigration attorney. He told me it was possible to request a copy of the passport, if I was listed on the passport.
So I found that form. I filled it out, got it notarized and sent it in. Then I waited. And waited. And waited. I waited a long time, longer than any of the other times I waited on a government response through this entire multi-year process. The State department eventually did find and mail the passport record back to me, a lucky break at last, and I was able to use that record to apply for my own passport. That passport made me a citizen. After forty years of productive life in the US listed as a non-citizen, I officially became a citizen just to get disability benefits. There is some humor in there somewhere, I’m sure.
…and The government said congratulations citizen. Here’s your first check.
I looked at the check and said “Hang on now. This check is for one month.” I’ve been working on this process for nearly 4 years now. Am I not owed disability since the date of my first application? “Well, yes” the government said. “That would be true if you had been a citizen when you first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen.” Once again, Mr. Steele, have a nice day, don’t let the door hit you on the ass on your way out.
Nothing doing. I am not giving up now. Four years I’ve been at this. Four fucking years. I’m not stopping till I get my four years of blood back. At this point I’m trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk. I have this passport because my mother brought me back to the US on her passport back in the 1960’s. That passport from the 1960’s makes me a citizen. A citizen for my whole fucking life. It says so right on this document.
…and the government replies, “Well, that might be true, but that just means your mother was a citizen and she brought you home with her. Was your father a citizen?”
Was my father a citizen? Was my father a citizen?Well, he was in the United States military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don’t want any foreigners fighting in our ranks or having sex with our women, that would be unthinkable.
I don’t know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. He never replied to the invitation, has never attempted to get in touch with me at any point during my life. For all I knew he didn’t even care if I was alive or not. I was raised by two different men instead of by my biological father and both of them tried to be dad and failed in various ways. I have never seen a page of correspondence from my biological father anywhere in any record that I kept or my mother kept. He’s a cipher to me. A complete unknown. I wouldn’t know where to even contact him at this point. I don’t know if he is still alive (not sure if I care either) I’m sure he had a Social Security number, I’m sure he was a citizen. I’m sure he has a military record. I have no idea how that information is dredged up without contacting his family, which had also been tried previously and ended in failure.
So I asked the Social Security administration if they knew how to find his number, how to track down his military record. I started putting out feelers, once again trying to get that information, looking for his family to contact. However, the Social Security administration came up with the information all by themselves. Proving once and for all (for me anyway) that they aren’t all demons placed here on Earth just to torment us average folk. They attached his file to mine and approved the back payments without my having to do the costly and time consuming legwork of tracking down my father and armwrestling him mano-a-mano for his Social Security number.
After that. After the years of fighting. After the many setbacks. After the successful conclusion of the application and subsequent reversal of the judgement that I was not a citizen. There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments, and so they should give me money rather than try to take money away from me to pay my attorney. But, I was a citizen and I was getting the disability that I had dutifully paid for all my life. My children had a home. We had food on the table. I was satisfied.
Then my dad died. The man who tried hardest to be dad, to care. The man I could rely on even though he wasn’t married to my mom anymore. Jack Steele, the man whose name I carry with pride, died. A decade of battle with cancer was finally over. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not my genes. I loved him. I loved his family and their history. I was very sad to see him go.
While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it’s confusing) she was suddenly struck with a memory. When they were going through the attic at gramma’s house preparing it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn’t know if it was important but she thought I’d want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?
That’s it. That’s my disability story finally written. I should probably see if I can track down the document numbers for the documents I submitted, just for clarity’s sake. But right now I just want to step back and admire the fact that I’ve written this damn thing. It took me long enough. Longer than it took to get my disability approved? Just about.
All about Meniere’s Disease. Updated periodically.
There is a page on the blog that discusses the subject of Meniere’s in a more leisurely fashion than this article about symptoms and treatments is going to allow. Please click on this link if you feel like you want to know more about the subject than this article for fellow sufferers is going to tell you.
I want to cut through the noise of what everyone else is telling you about their opinions and their magic elixirs. I’m just going tell you about the experience I have with Meniere’s and how I deal with treatment for myself, trying to follow the best experimental standards that a suffering individual can manage. With any luck you’ll recognize symptoms and treatment options that appeal to you while reading this.
There are four main symptoms that point towards the possibility of Meniere’s Disease. They are:
Only an otolaryngologist (ENT) can diagnose you with Meniere’s. Go see one if you haven’t yet. Go see a second one if you still have questions after seeing the first one. A good diagnostician will want to run many different tests to rule out other causes. I’ve had quite a bit of experience with those.
Audiogram. Most ENT’s have audiologists in-house and conduct hearing tests as part of the routine for people with hearing complaints.
Videonystagmography (VNG) – This test can take many forms and comprise a battery of related tests. If they make you look to the left and right at an object, that’s a VNG test.
Electronystagmography (ENG) – Caloric stimulation with electrodes attached to the head. Essentially this will be the same battery of tests that would comprise a VNG but digitally recorded with the attached electrodes. Caloric stimulation can induce vertigo so just be prepared for that.
Video Head Impulse Test (vHIT) – This test was originally a bedside test (HIT) involving sudden movements of the head and observed related eye movements. The introduction of digital recording of the results of this test has produced a set of standard responses that the individual can be gauged against.
Vestibular evoked myogenic potential (VEMP) – This test generates the same kind of information that caloric stimulation will produce but do it directly with sounds in the ear producing muscular movements that can be recorded electronically.
None of these tests by themselves will tell you that you have Meniere’s, although several of them taken together can produce a diagnosis of Meniere’s. However, Meniere’s is a diagnosis of exclusion; a set of symptoms with no known attributable cause, possibly more of a syndrome than a disease. These tests will tell the doctors that the symptoms you are complaining of are real and how they are related to different parts of the vestibular system of the body. They won’t necessarily inform you or your doctors on the most effective treatment.
None of these tests will rule out Autoimmune Inner Ear Disease, which is treatable and causes symptoms similar to Meniere’s disease. That takes a blood test. You can get more blood tests to check for related autoimmune causes, but those causes are not treatable yet or even necessarily positively linked to Meniere’s-like symptoms.
The CT scan and the VEMP will point fingers at problems like superior semicircular canal dehiscence (missing or abnormally thin bone structure over the inner ear canals) and other bone issues that can probably be corrected with surgery.
Do not despair yet. Your symptoms can also be caused by Benign Paroxysmal Positional Vertigo, which is very easily treated. A good ENT will do a quick movement test to check for that while you are in their office. There is also the possibility that you have a misalignment of the jaw. A temporomandibular joint disorder can cause vertigo symptoms similar to Meniere’s.
If you’ve got all those symptoms, explored all those other options, seen two ENTs and nobody can tell you what you have then I’m sorry. The rest of this article is for you.
I had not done a thorough reporting of symptoms before this (frequently updated) entry to the blog. I haven’t talked much about Meniere’s at all since I first started writing a public diary back in 2005, and that first entry was a compilation of entries made on other forums over the course of several years. I avoid thinking about my disability, a feeling most sufferers probably share. It’s uncomfortable to acknowledge such a fundamental difference from everyone around you.
Starting in 2001-2, I began to be subject to regular bouts of rotational vertigo that hit me without warning. These weren’t my first encounters with this particular symptom, but it was the first time that a discernable pattern emerged from the noise of my everyday life. My first vertigo attack occurred as a single incident many years earlier, probably sometime in 1984. In that instance I triggered the vertigo myself by accident while trying to clear the pressure in my left ear. I had just started noticing this discomfort, this feeling that my inner ear was swelling up, pressing against the skull from inside the skull, as far as I could tell. When the pressure finally eased in the ear, the blockage apparently cleared, I found that I was so dizzy that I couldn’t walk. I crawled to bed and got in it, afraid that I might have done myself permanent damage. When I woke up the next day I felt tired but no worse for wear overall. Best of all the ear pressure seemed to be gone for several months after that.
Pressure in the inner ear is generally referred to as ear fullness by sufferers, and it is frequently the first symptom that most sufferers experience, usually accompanied with tinnitus. It was my first symptom, as I detail in the Meniere’s story page.
When I first started having the subsequent and almost regular vertigo spells, they seemed to be related to my seasonal allergies and those times of the year (spring and fall) when my allergies had always bugged me. And when I say always, I mean always. As far back as I can remember, I have had allergies. I was treated with allergy shots back in the early seventies. I had recurring sinus and ear infections because of these allergies when I was a child. Allergies that I started associating with the annoying pressure in the ear. Distortion of the hearing in the ear that made enjoying any kind of music nearly impossible for weeks and then months at a time. All of these symptoms progressed slowly from year to year. Each Spring longer spans without music, each Fall more trips to the doctor demanding some kind of treatment for the discomfort. And then, as I said, came the regular bouts of vertigo in 2002.
As time progressed the vertigo spells became more generalized and could be brought on by high pressure weather, or just by turning my head the wrong way. These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and frequently caused me to miss two days of work. Towards the end of my work life I was getting vertigo about once a week, making my average work week 3 days long. This kind of attendance pattern does not produce enough work for most employers. I was definitely not working enough to satisfy the architect I was working for then. Consequently I was fired from my last job for being sick too much, even though I accepted the job with the stipulation that I was frequently ill and had only been on the job for eight months.
It was at that low point, unemployed, cash strapped and suffering near-constant vertigo that I sought and was granted disability. Now that I am on disability and free to manage stress for myself, I count myself lucky if I can go a month or two without vertigo. Some years are better than that, some years are worse. You play the hand you are dealt, a mantra I’ve relied on all my life. This is what I have to work with, I will make the best of it that I can.
However, the vertigo is just the most visible symptom of the disease. I have all of the usual symptoms. Almost as debilitating as the vertigo is the constant tinnitus, a ringing/whining/whistling in the ears which comes close to drowning out normal conversation and makes concentration very difficult. The tinnitus never stops. Sometimes it is loud, sometimes it is soft, and sometimes it causes the affected ear to amplify what little sound it hears, a condition known as hyperacusis, making even the smallest of sounds painful and sending me into a room by myself so that I can keep things as quiet as possible.
Then there is the pressure in the ear that I mentioned previously. Like the tinnitus this varies in discomfort, sometimes a nagging ache, other times a stabbing pain as if some fluid containing vessel in the ear is about to burst. The pressure in the ear is often a precursor to vertigo. If I get a metallic taste in the mouth with a sudden surge of pressure, I hit the medication immediately. Paying attention to how I’m feeling on any given day is how I’ve managed to keep the vertigo to a minimum through the years of disability.
I have slight dizziness and disorientation almost constantly. (constant symptoms carry their own associated risks) Disorientation brings on the brain fog on bad days, more pronounced after vertigo attacks. There are good days and bad days, but turning corners always carries the risk of colliding with objects I know are there and thought I would miss. The last symptom that I can tie to Meniere’s is a seriously vicious migraine headache. In 2014 I was getting them about every 4 days, but a trip to the GP where I finally admitted the headaches were that frequent got me a daily script that has reduced the migraines to something I only enjoy during allergy seasons.
On February 9th of 2018 at 6:30 in the morning I went bilateral with Meniere’s. Bilateral Meniere’s means I have identifiable hearing loss in both ears. I know the exact time that I went bilateral because that was the moment when my mother was dying in my arms. Trauma? Stress? Yeah, there was a bit of that. Two of my biggest triggers for bringing on the symptoms of Meniere’s. When I went to see the ENT later that week, she wanted to make sure that what was occurring was not something they could treat, so I went to visit a rheumatologist to insure that what I was suffering from was not autoimmune inner ear disease. A few blood tests later and that was ruled out. Sadly, I still have Meniere’s. Damn.
Going bilateral has meant that I have more frequent bouts of vertigo again just as I did when I was first diagnosed back in 2003. The years of experience with this disease have made the trials of bilateral Meniere’s easier to deal with, but the symptoms take their toll no matter how well you can cope with them.
My ENT informed me in 2015 that the hearing in my first affected ear (left ear) is about half of what it should be and is still getting worse. That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms. There are a couple of interventions available to me, but neither of them offer better than 60% chance of long-term relief, so I’m not jumping up and down to have any of them done. Gentamicin injection into the cochlea is the procedure he wanted me to do. I will not be doing this procedure unless the vertigo gets worse; as in, as bad as it was when I was a working stiff. There is also a surgical procedure or two that will interrupt the signals from the affected ear. Those procedures will make you completely deaf in one ear, and the Gentamicin can also make you deaf if not done properly. This is too much risk for too little reward based on the situation I am currently in.
Additionally, going bilateral ruled out doing any of these procedures unless deemed medically necessary. The chance of going completely deaf is a risk that you want to avoid if at all possible and with both ears affected this becomes a possible outcome that you should work to avoid. Going bilateral also increased the disorientation, so I started seeing a therapist that specialized in treating that specific problem:
I’ve only had two surgeries in my life. When I was a child I had my tonsils removed. It was a common practice back then (1973) for children having extreme allergic reactions and associated throat swelling to have their tonsils taken out. I wasn’t even the only one in my class in the small town I grew up in to have had this procedure performed on them. Most recently (2003) I had a procedure done that corrected a deviated septum and reduced the turbinates in the sinuses. Since allergies were so bad for me as a child, and allergies seemed to be a big trigger early on in the progression of my Meniere’s, it seemed like a logical step to see if fixing the breathing problems might not alleviate the Meniere’s symptoms. Sadly this has not turned out to be the case, but has apparently reduced my allergies and the number of sinus infections I have to suffer through. I will never forget the first time I went swimming after the surgery and got water in my sinuses. Before the surgery it was a major struggle to get the sinuses to clear. After the surgery I just tipped my head forward and the water ran out. “so that’s what working sinuses are like!” I exclaimed to the disgust of all present.
There are many behavioral approaches to treating Meniere’s. This is especially true since there are no cures and no known causes for the disease. This means that most sufferers cobble together a mish-mash of dieting and homemade concoctions that they swear by. If it eases their symptoms then it really doesn’t matter to me if their relief is scientifically verifiable or not. For me personally, I like the agnostic approach of a proper scientist.
I have tried most of the alternative medical treatments that I didn’t deem outright dangerous to try. Essential oils. Myriads of supplements. I tried far too many different things to name here, even if I could remember them all, and I’m pretty sure I can’t. Mom was into alternative medicine and she would show up every few months with some new thing or other for me to try. I dutifully tried them all, to no real effect. It was at about this time that I started to question why I took things like daily vitamins. One by one I discontinued the various supplements I was taking until I had discarded them all as producing no noticeable effect. I even stopped taking vitamins for about two years until I started developing unusual skin problems. I don’t know which vitamin I’m low on, but chewing a daily gummy does seem to keep the skin working like it is supposed to, so I keep taking them. One of these days I’ll remember to ask the dermatologist which vitamin I might be needing, then the vitamins will be one more prescription, just like everything else I take.
I will mention John of Ohio (JOH) here, although I may move the subject to its own article someday if I feel that it is warranted. JOH, for those who haven’t run across it, is a particular supplement/dietary regimen that many Menierians swear by. I’m not one of those people. As the paragraph above this should illustrate, I don’t put stock in supplements. In the US, supplements are not subject to regulation, and so consequently there is no verification that whatever ingredient is claimed to be in whatever it is they are selling you is actually in there. So taking any supplement can be a wasted effort if not an active harm. Use them with caution.
But the JOH regimen specifies that you have to take exactly what it says, and you have to do it as a routine. The insistence that the regimen only works if you follow it precisely is a hallmark of snake-oil salesmen, and was consequently a red flag for me. I have tried l-lysine, even mega doses of l-lysine and vitamin C. I’ve taken so much vitamin C in the past that I have given myself diarrhea, a welcome occurrence for someone who has had Irritable Bowel Syndrome (IBS-C. C being constipation) for pretty much their entire life and not realized it. The various parts of the regimen tried separately produced no noticable results for me (other than the diarrhea) so I saw little reason to take the time to go through the ritual of doing all of them exactly as prescribed by JOH. Consequently I can’t rule out its effectiveness, but I’ll stick to what works for me anyway.
Probably the single most beneficial behavioral thing I’ve done aside from sleeping more and getting the CPAP is I stopped sleeping on a flat surface. I always try to sleep with my head elevated. A touring musician who is a fellow sufferer (I wish I could remember her name) suggested sleeping with the head elevated because fluids tend to pool in low areas of the body. I don’t know how true that is, but it does seem to help. I tried wedging the head of the bed up, and that seemed to produce even better results than just stacking up pillows. Unfortunately the wife hates the heads-up sleep position, so I begged an adjustable bed from a friend who had one in storage. I’ve been sleeping on that bed ever since, and I credit it with reducing most of the ear fullness that I used to experience while trying to sleep. If you don’t believe me, try it. It really can help.
I walk everyday, or as close to everyday as I can manage, regular exercise (sadly) being another facet of stress reduction. Walking puts me afoul of my allergies for almost anything that grows, so I have to do some of it indoors on a treadmill. I prefer to be outside whenever I can manage it, so allergy medications are something I tend to take frequently. My asthma treatments have replaced some of my allergy treatments, having now be diagnosed as a borderline asthmatic. These are the kinds of things you discover as an adult when your parents didn’t believe in doctors.
There doesn’t appear to be any real treatments for the tinnitus. Mostly it is a matter of enduring the constant sound which does contribute to the brain fog, or masking the sound with other sounds. I find Rainymood, suggested by a redditer, works best for days when the tinnitus is incredibly annoying. Most other days I just endure the constant barrage. You can train yourself to ignore the sounds using various methods that you may or may not find useful. I’ve never stumbled across anything that worked for me, and there have been many promises made over the years to reduce your tinnitus! promises that remain unfulfilled.
I have the least to say about tinnitus, I think, because hearing loss and the accompanying tinnitus stole my enjoyment of music from me. When the songs stopped sounding good in my ears, I simply stopped listening to them. I think that has been one of the hardest things to cope with, almost as hard as not being able to work. Music defined my life, as it seems to do for most people. My music appreciation stopped in 1999. I can’t recall a single new artist that I have followed since Prince. That, in music years, is several lifetimes.
I was already avoiding salt because of a hypertension diagnosis, and my hypertension medication contains a diuretic which was the first medication suggested by my ENT. Salt can increase blood pressure which increases stress. Stress is a major trigger. Caffeine is something I try to avoid because it disturbs my sleep, not just because it makes me dizzy. Caffeine can also increase stress. Anything dietary that causes stress can cause Meniere’s symptoms, so just avoiding things you think cause you stress can make your symptoms seem less noticeable. Don’t rock the boat and it won’t capsize. this, as usual, is easier said than done.
Other than avoiding salt and caffeine as much as possible, I don’t really follow any other dietary restrictions or fads. I live in the South so everything comes fried, which I’m then compelled to avoid because of cholesterol concerns (hypertension) the resultant impact of culture and health problems produces a tofu eater in the land of chicken fried steak, but then all of Austin is a little bit weird like that.
On top of the diuretic/hypertension medication mentioned previously, I take a variety of additional drugs both prescription and over the counter. If the affected ear is bothering me and I don’t have vertigo yet, I take pseudoephedrine & guaifenesin together (an ode to my magical green gel caps. -ed.) this combination is usually effective at reducing ear fullness. If my allergies are acting up, I add fexofenadine or loratadine. As of 2018 I have a prescription for azelastine that I find works wonders for the allergies. Using azelastine daily has caused me to almost stop taking pseudoephedrine, something the cardiologist has been trying to get me off of for years. If the migraine is kicking in, I take prescription doses of ibuprofen and acetaminophen together. A daily prescription for amitriptyline has removed my need of other painkillers almost completely. I only take my megadoses of painkillers and allergy medication now on the really bad days, days when I’ve done something stupid like carry 40 lbs. of dog food or gone for a walk on a high allergy day without a mask on.
During the exploratory phase of coping with this condition, I convinced my doctor to prescribe a round of acyclovir just to see if it had any effect. I have suffered from lip sores since birth (the signature symptom of a herpes infection) so I figured that acyclovir was worth trying. Acyclovir had no effect on any of my Meniere’s symptoms, so I discontinued using it after the original course of treatment. The lip sores have been absent for years until just last week (August 2019) when I had a flare-up. So maybe the acyclovir worked for those but nothing else.
Vertigo, the most debilitating symptom, deserves it’s own heading. This is a key point in understanding Meniere’s and its treatment; nearly all the procedures recommended by doctors are designed to stop the vertigo. The vertigo is thought to originate within the labyrinth of the inner ear, so most treatments are centered around that part of the body. From the most drastic to the least invasive, nearly all of the surgical treatments silence the affected ear, permanently. Some of the less invasive will leave you with some hearing in the ear, but their efficacy is highly questionable.
Endolymphatic shunt surgery should work to ease ear pressure and not destroy the hearing mechanism and might even prevent rotational vertigo, but I need to look into that more than I have before I decide whether it is worth pursuing.
Vertigo treatment for me started with meclizine (Dramamine) This is what I took in 2003 when I was first diagnosed. I have stopped taking this medication because I could still feel the vertigo while taking it, which hyped up my anxiety about the symptom. If I feel vertigo starting and if I can’t make it recede by focusing on a still object, I take a Xanax. If I’m having an active vertigo attack and it has already made me nauseous, I take promethazine. I haven’t had much need for promethazine since being given a prescription for Xanax because it seems to relieve the anxiety of the attack, causing the sensation of spinning to recede, which keeps the nausea at bay. I stopped taking Valium because it stopped making me sleep. Also, the government doesn’t want someone to have prescriptions for both Xanax and Valium anymore. Too dangerous. Most of those drugs require prescriptions in the US and are controlled substances which makes them much harder to get.
Flying is the fun part. I have to be medicated to fly. I used to take promethazine and Valium just to be able to board a plane and not panic. The last few times the Xanax alone has been enough of a treatment to keep the vertigo at bay. I have to have supervision while taking this medication because Xanax makes me a bit fearless (anxiety reducer) while not actually giving me any better balance. I’m just an accident waiting to happen then, but at least I can sit through a flight without freaking out at every movement, getting queasy and vertiginous.
I have another secret weapon for managing flying. Cinnamon chewing gum. I always travel with a pack of gum. I have always chewed gum while flying since I first went up in a Cessna with my dad as a child. If your ears bother you because of pressure, chew gum. Far more useful than earplugs.
I heard about Serc or Betahistine from Menierians in online forums years ago. This is a drug commonly prescribed for dizziness and specifically prescribed for Meniere’s disease in the UK and a good portion of Europe. I was initially dubious that the drug would have any effect since it had been trialed in the US previously and found to be no better than placebo at preventing Meniere’s symptoms.
In the summer of 2017 my ENT’s office took on a new doctor and I was referred to her for my annual Meniere’s symptom review and prescription renewal. She suggested a trial of betahistine during my first consultation with her. As I established earlier in the text, I don’t reject any suggested treatment out of hand (any treatment that isn’t damaging or potentially life threatening. I could tell you stories but I won’t. Not here, anyway) I decided to give Betahistine a try. The drug is not available in the US under its European brand name, Serc. It has to be compounded, and as a consequence of this it isn’t on the average health insurance formulary. This makes betahistine more expensive to take and harder to get, but at least it was legal for me to try it.
I started off by taking 8 mg of betahistine three times a day. Three months later we bumped the dosage up to 16 mg three times a day and I have been taking the same dosage ever since. While I can’t say it is doing everything I had hoped for, it is doing something. My head seems clearer, my concentration sharper. The tinnitus continues unabated but the ear fullness is less noticeable. I still get occasional bouts of vertigo but they seem to last for shorter durations.
Intratympanic Steroid Injection
In the Spring of 2018 I started getting steroid injections in my ears. Most frequently this has been the left ear, although I have had injections in both of them over the past nine months. Intratympanic injections were originally suggested as a possible remedy to the hearing loss in the right ear immediately following the diagnosis of bilateral Meniere’s earlier that Winter. The hearing test following the right ear injection didn’t show any major improvement, but I was impressed with the pressure relief that I got from the injection in the right ear. I was so impressed that I insisted the doctor inject the left ear just to see if it produced any noticeable effect there. It did, and I have had her inject the ear a few more times since then due to repeated battles with vertigo and/or pressure in the ear.
My last injection (December 28th, 2018) illustrated the downside of this treatment for me in pretty stark terms. You are not supposed to swallow if you can help it for the first few hours after getting an injection. You shouldn’t attempt to pop your ears or force air into your eustachian tubes (this is a frequent habit with Menierians when they are trying to get the pressure off of an affected ear) for several days, and really shouldn’t even use straws or swallow hard for that period of time.
Well, I screwed that up about ten hours after the injection and somehow got air up in the ear and that caused the ear to pop, pulling the injected fluid in the middle ear down through the Eustachian tube. What followed was about three days of bedridden vertigo and constant medication. I was feeling normal again a week later, at least what passes for normal these days. The pressure remained off the ear for awhile but still returns periodically.
The world doesn’t turn inside out when I put pressure on the eardrum from outside anymore. So the injection did what I wanted it to do, even though I screwed up the post-treatment regimen. I haven’t noticed that symptom since that last injection and the subsequent return to a dose Guaifenesin when I notice the ear pressure.
I had the ENT puzzled with that symptom, something I’d never noticed before myself. When the left ear is acting up and I don’t self-medicate, I can stick my finger in the ear and wiggle it, and my body feels like it changes shape. It feels like my right shoulder is getting longer and my right leg/hip is moving. It’s the weirdest damned thing I’ve ever felt, and I’ve only started noticing it since altering my allergy regimen.
Guaifenesin when the pressure increases, less invasive than putting a tube in the eardrum just to see if that took the pressure off the eardrum. That was the other suggestion offered, even though the eardrum does not appear to be under pressure. I may try that treatment at some point in the future. It is reversible, so isn’t something I will have to live with forever once done. Test and retest. Check and verify. It gets tedious, but it’s the only way to know for certain what works and what doesn’t.
Don’t snicker there in the back. I can hear you. Marijuana has some kind of effect on the fluids inside the eye, which is why Glaucoma was the only disease that had treatment with Marijuana approved before the latest moves to legalize it as a useful drug. Since it is a fluidic imbalance in the inner ear that is the suspected culprit for Meniere’s symptoms, it is quite plausible that Marijuana will help some people with those symptoms. I have tried it. It did nothing for me other than get me high, just like I remembered it doing when I was a teenager. I no longer want to be high, I just want to feel normal. The mantra of all chronic illness sufferers.
A Word of Caution. A Word of Hope.
I make a lot of drug recommendations in this article. Having suggested drugs for various treatments, I really should also offer the following caution; these drugs all have different effects for different people, and this fact can not be overstressed. These medicines work for me and I’m thankful that they do. Don’t treat your conditions without at least consulting with a physician first. I say this not only out of personal concern for sufferers, but also because documenting treatments and their effects is how science-based medicine is achieved. If treatments are not tested and documented, then there is no record of what has worked previously that others can consult.
Don’t take more of a medication than your physician prescribes just to see if that has a noticeable effect. I’ve had several sufferers over the years insist that what I needed was to take more of whatever it was they insisted worked for them. Prescription doses are set at the levels they are for good reasons. The difference between a medicine and a lethal poison usually comes down to dosage. Water can kill you if you drink too much of it. More of something is frequently not the answer to the problems that ail you.
Treating Meniere’s means finding your triggers and then doing your best to avoid them. My triggers seem to be stress or allergy related. It will be a trial and error process finding what will work for you. Here’s hoping it takes less than a decade for you to find your feet again. It will happen, it just takes time. If you find that a drug I suggest doesn’t work for you, try a different one. Keep working at it till you find a solution that works for you and then stick to it. The important part is to not give up.
I used to consult my personal oracle when I thought about trying something new. My oracle was the Meniere’s Disease Information Center. Unfortunately my oracle went offline several years ago. Archive.org has it preserved in amber for new visitors to see, but it isn’t the same as being able to track treatment trends in real time.
Reading through those preserved pages, it becomes clear that most sufferers will try anything to stop the vertigo. Page after page of the most far-fetched ideas about what might stop the vertigo.
If you’ve ever been afflicted with rotational vertigo and can imagine that sensation continuing for hours and days at a time, you would understand why sufferers are willing to try anything to make it stop. Try anything, even drugging themselves to unconsciousness for days at a time to avoid the symptom. Unconsciousness is a mercy when consciousness is a never-ending torment of spinning. Spinning without end. Don’t let this disease kill you. Don’t let it win. Don’t hide from life for fear of that next attack.
If you are reading this because you to have Meniere’s, then I am truly sorry. I have often said that I wouldn’t wish this disease on my worst enemy. Being disabled has made me question many of the beliefs that got me through life before I was struck down by Meniere’s. Most of the things that I thought were real as a healthy person turned out to be delusion once I became chronically ill. Problems that I thought were paramount when I was healthy now seem trivial. Services that I complained about paying for are now essential to me and my family’s survival. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting access to this kind of insight. Ways that don’t rob you of hope, of purpose. What can feel like forever, from the inside.
I miss architecture and drafting nearly every day. Those were my purposes in life prior to this debilitating disease. More than a decade later, I still have dreams involving architecture. Admittedly, the last dream involved all my drafting tools being ruined because they had been piled in a trailer for ten years, but still the dreams persist. I have them almost nightly, reliving events from my productive past only to wake up to the reality I face now.
So if you are a fellow sufferer, please know you have my utmost support. We all need people we can rely on now, because there are times when we really are helpless and won’t survive without them. While that has always been true of everybody, most people go through their lives never admitting this fact. Cherish those around you who are there when you need them. That is what it truly means to be human.
This is a periodically updated post, completely different from most of the other posts on this blog. The content of this post will and has changed as my experiences and treatment have changed. As of the addition of the edit history, I had made several periodic updates. (here’s a snapshot of the original article from 2015 on the Wayback Machine) Most of those updates were minimal tweaks due to my personal dissatisfaction with cludgy wording, or meanings that I don’t think I made clear in my first attempt at documenting symptoms and treatment. I added the section about chewing gum. I added the section noting there were no known effective treatments for tinnitus. I think those were the most intensive change prior to this edit. However, this edit will alter several points of the post so I deemed it prudent to document what I’m about to change:
August 6th, 2017. I am doing my first major alteration of the content and intent of this post. I’m adding headers to separate information. I added the recollection of my first vertigo spell, having dredged that memory up from somewhere. Tinnitus stole my music was added. I have revised the section on dietary habits radically. I discounted what I considered to be an obsession that most Menierians have about watching their diets in the original version. There are scientifically valid reasons to restrict your diet, and I was wrong to discount this fact (apologies offered where needed) so I altered the text to fit my current understanding. I am adding some verbiage about Betahistine (Serc) since I am now taking that drug and finding it effective. I changed Phenergan to Promethazine because that is the name the reference site uses. A general reorganization of information into coherent sections was a part of this edit as well as the specific changes mentioned. I hope the content is easier to absorb than it was before.
July 30th, 2018 – I added the paragraph describing how I went bilateral.
December 29th, 2018 – Migration to WordPress. General format changes. Additional history added concerning allergies and their linkage to Meniere’s symptoms and a reworking of the entire introductory section including the addition of an intro for non-sufferers. Edited in the switch to Loratadine and Azelastine for allergies. Added a section for the steroid injections started this year.
August 23, 2019. Added a paragraph about Acyclovir. Added guaifenesin test result. Pulled drop attack reference because of confusion on the subject. To have a drop attack is to drop to the floor. It was described to me as being almost like a fainting spell but still being fully conscious. It wasn’t so much like vertigo as it was like discovering that up was sideways and so down is where gravity places you. It is a vestibular problem similar to vertigo, and yet not vertigo. That isn’t what I’ve been experiencing. Reference removed. Corrected some links. Added caution about seeing a doctor and overdosing. Added JOH and IBS-C paragraphs.
July 2, 2020. Migration to new website. Slight word edits in opening paragraphs. Corrected all links to point to new website.
December 22, 2020 – Added reference to asthma and its related article. Added link to vestibular physical therapy article. Added a parenthetical that links to the anemia article.
May 1, 2021 – Added a paragraph about Marijuana.
October 24, 2021 – Added text and links for ear fullness article.
December 21, 2021 – Moved introductory section of the article to the new Meniere’s Story page. This streamlines the article back to it’s intended purpose, listing symptoms and treatments.
January 6-11, 2022 – Added symptom list and test list, reorganized symptom section. Minor verbiage tweak to the treatment section and to the opening section of the Meniere’s story page. Added link to Sudafed Non-Drying Sinus article, added parts of its text to the page. Featured image changed to wikimedia.org/Vincent van Gogh self portrait
May 27, 2022 – Pulled out the EEG paragraph and consolidated the ECOGCH, ECOG kerfuffle into a few concise paragraphs.
July 14, 2022 – Reworked the entire testing section and created the testing article. H/t to r/Menieres, Gigertiger and EkkoMusic for bringing the new tests to my attention.
I recently wrote a novella (so the wife says) about my 5 years playing World of Warcraft trying to complete a quest I set for myself. However, there is (at least) one other thing I did forget to mention. Gameplay in the world is generally pretty predictable, except at certain times of the year when world events occur, or on the odd years when a patch is released.
The first year I played was the release of Wrath of the Lich King, and the world event for Hallow’s End that year was marked by rolling hordes of zombies in all the cities, and mayhem that kept us lows (players who didn’t have characters at max level. Level 70 at that time) from getting anything done. A world event and a expansion pack release event rolled together, or so it felt at the time.
I remember walking one of my ‘toons into Ironforge and wondering where all the guards were, why was there smoke in the air…? Suddenly, in the distance, movement in the smoke. Players?
Every freaking NPC for the city had been turned into zombies by players who had been infected by the undead plague. It’s funny now in retrospect, but I had things to do in the cities, unlike max level characters. I was quite annoyed at the time. My toons took to sleeping in trees outside the cities until the the patch event had passed.
There was a Jackalope over the bar in the local beer hall in the Kansas town I grew up in. My dad used to love to tell stories about hunting Jackalopes, to which all his friends (who were in on the joke) would lovingly add details. I can’t speak for the other children, but I was fascinated by this cryptozoological problem. I would go looking for Jackalopes while wandering the fields near my house. Unsurprisingly I never did find one, not until I started playing around at Brewfest. The purpose of Brewfest was to get your character blind drunk; or rather, the program responded (and still does, to some extent) to each beer you drank by making the screen images progressively fuzzier, distorting perspectives into tunnel vision. Also, after you’ve drank about three strong drinks, invisible creatures started to appear. Little horned rabbits with wings. At first I thought I was seeing things. I really did feel like I was drunk (still do, sometimes. I blame the Meniere’s) and where did those creatures come from?
They were labeled Wild Wolpertinger in the game. Researching the name, I discovered that Jackalopes and Wolpertingers are related, related by beer. Wolpertingers are commonly found on display in taverns in the Bavarian region of Germany, and Jackalopes seem to be found in German settled areas of the American Southwest, also to be found in taverns there. I had discovered a long drinking tradition, the telling of tall tales while indulging in the spirits at the local drinking hole. My father, whose mother was of German descent, was simply carrying on the tradition.
The first year I played, you couldn’t catch Wild Wolpertingers, but you could purchase a pet one with tickets (and your pet is invisible to everyone but you. Unless they are drunk) You can catch them now, just like you could when the event first started, but that year you couldn’t. I had to have one, so Tharthurm and I spent some quality hours working at Brewfest to get tickets for the Wolpertinger. Even took some tourist shots with the local guardsmen.
It was the event of Brewfest, combined with this whole new world to explore, that made me fall in love with the game.
It was after getting the pet (the pet that no one can see but me) and having it summoned pretty consistently for months, that I began to identify with the Wolpertinger; after all, it and I were the only consistent things across the various characters I played, and the other players couldn’t see either of us. So I started using it as my avatar across many boards and platforms I post in, using the cryptozoological beast to represent me. I commissioned a piece of artfrom an artist I know so that I wouldn’t have to violate Blizzard’s copyright to it’s own game images. Hers looks better than theirs, anyway.
That is where I am today. Represented on the internet by a cryptid that my dad used to tell great stories about, and that I rediscovered in a game I just happened to be playing because a friend asked for a favor. If you play WoW and haven’t taken time to get your What a Long, Strange Trip It’s Beenachievement, You are missing out on one of the more interesting parts of the game. You should at least try Ram Racing. Do it now, because Brewfest is here!
First the praise, now the criticism. Three years ago the designers at Blizzard got lazy and they gave up offering new mugs (the in-game collectable for this event) and at the same time disabled a handy feature of the game for new players. The old mugs were a useable item, and gave a buff which was useful in game. Rather than scale the buff for new releases of the game, they simply replaced the real mugs with a magically refilling baby bottle that does nothing. Bring back the mugs! Bring back the buffs! (this is true of Hallow’s End candy as well) Update the gear drops for mid-xp and end of xp events, for crying out loud! Make it desirable to do the events, so that people will do them.
The toons don’t get blind drunk killing Dark Irons anymore. I get it, we want to be sensitive to people who don’t approve of drinking to excess, but it’s a game for crying out loud. I still go around killing everything that moves in the game, and I don’t feel the urge to do that in real life. I also understand that players become ill watching the drunken graphics. Me too. It would be nice to be able to just kill the visual effect with an easily findable toggle when it gets to be too much. But that is aside from the point of drinking beer and throwing mugs to down the Dark Irons. What are we saving the kegs for anyway since they can’t be used to refill mugs? See the first critique.
Finally, let’s admit the game has changed. Pandaren should be top brewers, not Ogres. Ogres make some nasty strong drinks, but Pandaren have turned brewing into a lifestyle. They should not be relegated to a booth in the corner quietly selling also items that have no bearing on the event itself. None of my Pandaren will even go to the event until they are properly represented as the best brewers on Azeroth. Call it a protest. The rest of them will be there, though.
Editor’s note, 2019. They included some long-needed changes in the world event this year, including taking away barking for the Ogres in the city. They haven’t admitted that Pandarens are the kings of brew and food, but then I’m pretty sure the Dwarves (not to mention Orcs) would throw down over the Pandaren thinking they knew how to drink better than Dwarves do.
There is a battleground in there somewhere. Get on it, Blizzard.
There is an added event, an eating contest that features a unique in-game toy as a prize, but I didn’t try too hard to win it this year. There was a crush around the booth every time I wandered into Brewfest this year.
Back on September 2, 2008 a good friend of mine asked a favor of me. Really, it was probably the only favor he ever asked of me, and to me it seemed like such a small thing, I didn’t see any reason why I couldn’t help him. He’d been playing World of Warcraft for a few years at that point, and he was having trouble getting groups together to complete content; not to mention that they were giving away mounts for recruiting friends, and they were really sweet Zhevras.
I had played Blizzard games many times over the years (I would have said I preferred the Real Time Strategy games if you asked me) I liked playing head to head with family, a pastime (and a blog article I’ve been working on) that went back years. Diablo II was a favorite in the house and when World of Warcraft was announced at the end of Warcraft III I hoped it would be something like that game in execution. The cheapskate that I am refused to even entertain the idea of paying for a game on a monthly basis, so I dismissed it as a possibility even if it was something I might like.
A few years later, and a lot more time on my hands spent indoors fighting the symptoms of Meniere’s, made the idea of spending a few dollars a month for game access seem like a bargain. I’d be doing my friend a favor, and I had already asked him to shave my head earlier that year as a symbol of support for his going through chemotherapy again. A request to join him in a game I secretly wanted to play anyway was easy in comparison.
So we started playing. Almost from the beginning I got off on the wrong foot in the game. I had no idea that the two factions could not talk to each other or play together. I created Horde toons (a Tauren Warrior & Undead Warlock) on a server he was playing as Alliance (in fact, he only played Alliance) so he had to make new toons to play with me. My daughter only wanted to play Night Elves (her favorite race from WC3) and she had already created a toon on another server that I just had to join her in playing. Being fond of Rogues from Diablo, I created a NElf Rogue (female, of course. All rogues are female) to play alongside her druid. I quickly created a whole slew of NElf characters with the intention of playing all classes as NElf, only to discover that not all classes could be played in all races. That lead to the Gnome mage Brenelbur and his evil warlock twin, but that was when the plan got out of control.
I hatched a scheme to level one toon (character) of each class, and I would do this for both factions, with a genuine attempt to play all races and both sexes for each race with at least one toon. When I mapped this all out, there were nine classes, which Blizzard expanded to ten with Wrath of the Lich King and eleven with Mists of Pandaria. There were also fewer races, with Worgen and Goblins being added as playable races in Cataclysm (Draenei &Blood Elves having been added in Burning Crusade, along with Alliance Shaman and Horde Paladins. I started playing at the end of this expansion of the game) so I had to skip a few race/sex combinations. This was made easier on the alliance side, because I saw no need to play humans in a fantasy game. I could play that in real life by turning off the computer.
When I started this quest, this scheme of mine, I really thought it would be no sweat to complete. A few months playing, and all done. Then the new classes and races were added, and the levels increased, and I began to wonder if I had even been sane when I came up with this crazy idea.
With the announcement of the release of Warlords of Draenorin November 2013, I knew the time to finish this quest of mine was now or never. Ten more levels on 22 toons would probably be more than I was interested in doing, and I really didn’t want to fail. So, earlier today (August 14th, 2014) I finally leveled my twenty-second toon to endgame, level ninety. A birthday present for myself, and a nice way to close out the favor I started for a dear friend whologged offa few years after we started playing. I’d like to offer a heartfelt thanks to Bear, wherever he is, for making me take up this silly game. I think it has kept me sane, if this is sanity.
One of the things that has improved over the years I’ve played this game has been the website. The last time I tried to do a toons & servers update, I had to clip photos from screenshots for each toon. This version may be more boring to read, because I won’t be adding photos for all twenty-two toons, but it will be significantly easier to write. The links for each name will lead to the stat page for each of my toons. Better than clipped art, it is proof that the toon exists and represents an example of how it is set up, and what it looks like currently.
My main Horde toons are still on Terenas, although the server is really a backwater in the game and it limits my ability to play content that is limited to the home server. Blizzard has been working to combine servers and content, so this might not be a problem much longer. Of course, I could just level new toons on other servers, and that process technically has already begun. However, these are the eleven I count as main Horde:
Olaventa – OrcShaman (Herbalism, Inscription) from the lowly also-ran who started out as a male with a different name, this toon has graduated into becoming my raider. Shaman are excellent healers, and when your secondary talent is Elemental (not as much DPS as enhancement, but respectable) you can essentially use the same gear to level as damage & healing and not feel that you are letting anyone down by doing so. Olaventa as a character had a serious crush on Thrall when he was warchief of the horde. She’s not forgiven him yet for leaving us with Garrosh as a leader. My scribes both wanted the Loremaster title, so they each completed every quest for their faction up to Mists of Pandaria. This toon has also completed all the quests for that Expansion, making her the most played, most experienced toon that I have.
Uroga –OrcHunter (Skinning, Leatherworking) Both my hunters I play just for fun. I collect pets with them, and not much else, although their professions are part of my overall scheme to explore different class/prof combinations.
Rakudaga – TrollDruid (Herbalism, Alchemy) I deleted the character I started with this name and created a new one of the same name (the name fit a Troll better anyway) for the new racial combination of Troll/Druid that was offered in Cataclysm. Druids are my second favorite class after shaman these days, and some of the best tanks in the game. Still, I don’t tank with them, I take the same minimalist tack with them as with other classes, combining balance and restoration which allows me to double up gear for leveling. I used to hate male Trolls in game until Mists of Pandaria and Vol’Jin. Now I’m starting to like them.
Rasmuerta – TrollDeath Knight (Mining, Blacksmithing)I’ve had a problem motivating myself to play Death Knights after Wrath of the Lich King. I mean, what is their motivation as characters? “OK, life (or death) goals achieved, now what?” Still, they remain one of my favorite classes, and the only class I’m comfortable tanking with.
Tanath – Blood ElfMage (Mining, Jewelcrafting) My only Blood Elf. I just couldn’t get into the story behind the Blood Elves. They remain my least favorite race in the game, weirdly. They are amongst the most frequently played by other players. Mage is one of my favorite classes, but this mage doesn’t get played very often. Just enough to get her to level 90.
Creavishop– UndeadWarlock (Tailoring, Enchanting) The third toon I ever made, and still my secondary raider for this server, because he is my enchanter and I’m always looking for materials for his work. Warlocks are liberating to play. Demon summoners and associated with evil in the lore for the game, they remain essential for any well-rounded raid group. Still making containers for all the toons on the server, and not getting enough gold for his work as far as he is concerned. His plans to take over the world are taking longer than he thought.
Eugennah – UndeadRogue (Mining, Engineering)Rogues, which were amongst my most looked-forward-to classes to play, have not turned out to be one of my favorite classes. Now that locks have been removed from regular game play (no more keyring) their essential role in-game has been left behind. Pick-pocketing isn’t nearly as much fun as it used to be, with more and more NPC’s in game reporting back as having no pockets to pick. Bummer. Eugennah hates her bony elbows and knees, and doesn’t like Undercity at all. She took over Engineering from Uroga so I could see how that might assist a Rogue in play. Her survivability in encounters seems better than Eieloris, my other Rogue.
Raspallia – TaurenPaladin (Blacksmithing, Jewelcrafting) This toon was created as an experiment testing out the benefits of combining creation professions and their extra-beneficial perks. I also discovered the joy of PvP healing as a Holy Paladin. There really isn’t a better class to play as healer in a PvP situation, and survivability for this paladin is much better than the other Paladin who combines Blacksmithing and Mining. Those perks are rumored to be disappearing in the next expansion pack.
Tharthurm – TaurenPriest (Tailoring, Alchemy) Tharthurm was the name of my first toon; but I really wanted my warriors for both factions to be small females, so the Tauren warrior was deleted, and I gave his name and look to the priest that I could make as a Tauren for the first time in Cataclysm. Tauren are my favorite race, in theory. In practice I don’t like the movements that Blizzard created for the models. I want to like and play them, here’s hoping the improved modeling in Warlords will make that more pleasant.
Rastarsha – GoblinWarrior (Mining, Engineering) The addition of Goblins as a playable race created a quandary and a opportunity for me. I could finally actually have a Goblin engineer and could have a warrior on the horde side that would echo the stature of my alliance warrior. But I had to delete my first toon to do it, and I had to decide on either female or male, since I couldn’t do both. Pigtails decided me, although you can’t see them on this toon. Goblins, like Gnomes, are amusing. That is why you play them.
Jainrasig – PandarenMonk (Skinning, Leatherworking) All my monks are Pandas, and all of them are named Jain. There was a Bodhisattva of a similar name, and what Firefly fan can resist naming a character Jayne? RAS is for me. I’ve looked forward to playing as a Panda since I first started playing World of Warcraft, having loved the heroic character that was available in WC3. They took long enough to give them too us. The Pandaren lore is some of best World of Warcraft, in my opinion. I’m going to miss playing Mists of Pandaria come November.
Muradin server was home for several years, even though I started out playing on Terenas. Because my family and friends were playing Alliance, my toons there were developed much faster than the Horde toons. We found a welcoming guild on the server named “of the Emerald Dream” and were happy there until one of the raid healers took exception to my allowing my daughter to play the game while she was still drugged from having her wisdom teeth out (of all the things to pick a fight over) so we left and created our own guild, which I still run (on several servers, just not very successfully) even though I’m almost the only player left in the guild, now. Frosty Wyrm Riders is max level (25) on Muradin, I just don’t raid with that guild.
Tarashal –Night ElfDruid (Herbalism, Alchemy) This is the toon I keep coming back to. I started out focused in Mists of Pandaria with my Horde toons, determined to level and raid first as Horde with my adopted guild there. Before the year was out I was no longer raiding with them although still in the guild, three different raid teams having formed and dissolved in the process. Raiding in Mists is far harder than any other expansion pack, and this has shown through in the rapid dissolution of formerly sound raiding teams that had lasted through Wrath and Cataclysm. Even the raiding guild that I was part of on this server lost several players we had relied on for years. Because I had started out with a different guild and faction, this toon did not make it into the raiding group which is most advanced in the content for this expansion. Still, he has the best gear of any of my toons, and has completed more of the content than any other toon except for Olaventa.
Eieloris – Night ElfRogue (Skinning, Leatherworking) With her fondness for Dwarves, which she deems “Just the right height”, Eieloris still has more ‘backstory’ than any of my other toons. That only matters to me in the end; still, I really do enjoy playing this toon and would play her more if I hadn’t discovered how much I like to PvP heal as a Paladin.
Rasputing – DraeneiPaladin (Mining, Blacksmithing) Also the name of my Monk character in Diablo III, the Wife named this toon when I created it, the first in a long line of RAS characters. I really didn’t like Paladins at all until this expansion pack, and it was only when I took the Tauren Paladin into Battlegrounds that I discovered how much fun it was to PvP heal as one. By that point I had leveled this toon to 90, and he had a hard time getting the gear he needed to match her in PvP. Now that they are almost equal, I really can see a benefit in combining creation professions as I did with her. I’ll have to wait and see what Blizzard does with Professions in the next expansion. Draenei are, in my opinion, the only good thing introduced in Burning Crusade; I tend to skip that entire area of the game when I level characters (easily achieved by taking up archeology at level 60) but the Draenei move the way the Tauren should move.
Raslinda – DraeneiShaman (Mining, Jewelcrafting) I try to remind myself that the game is fantasy when presented with differences between the sexes like are present in the male and female Draenei. Split hooves vs. solid hooves? Looks more feminine, only represents a million years or so of evolution. She does look good moving, and the action animations for the female Draenei are some of my favorites.
Rasmortis – WorgenDeath Knight (Jewelcrafting, Blacksmithing) Worgen represent the race I’m most ambivalent about. I like the animations, but I never understood why they had to be added to the Alliance, other than as a race to balance out adding Goblins to the Horde. Having said that, adding them gave me an excuse to change Mortis from human, so there went my only human character. I really do like the way he looks in his black PvP armor transmog. If I had more time, I’d play this class more often.
Hellice – WorgenWarlock (Tailoring, Alchemy) This is actually my second Worgen Warlock named Hellice. I leveled one to 85 for my son at the end of Cataclysm, and gave it to him as a present. I like the name, icy-damnation. Perfect for a warlock. This was the last toon to level to 90, because she had to start from one at the same time as my Pandas, and they were going to be leveled before she was. Warlocks are just fun. That’s all there is to it. Mind if I suck out your soul and use it as a weapon on you? Doesn’t matter, she’ll do it anyway. Worgen are damned to start with, that is the nature of their affliction. Why not warlock as well?
Juverna – DwarfHunter (Mining, Engineering)Named for Ireland; he, like my Horde hunter just collects pets. I know, I know, they are great DPS machines in this version of the game. I don’t care, hunters are solitary. That is why their best friends are animals.
Keslingra – DwarfPriest (Herbalism, Inscription) Just between you and me, this toon I specifically made to resemble the wife, giving her the red hair I know she really keeps hidden under the blonde; and I say that just because when she reads this she’ll be furious and there’s nothing I enjoy more than having her angry at me. This toon taught me the value of playing a priest, which I never expected to enjoy playing. Shadow Priest has finally turned into a DPS specification worthy of the designation, and priest healers are the strongest healers in the game. Since she is also a scribe, that means I completely every quest with her for the Loremaster title just as I did with Olaventa. Lots of experience playing this toon. She is the current guild master for Frosty Wyrm Riders.
Brenelbur – GnomeMage (Tailoring, Enchanting) This was my fifth toon created (after Tarashal) and I blame/credit him with starting me off on this crazy venture. He wanted to be a NElf and I resisted changing him to one after that race/class combo became available; but it was the frustration of not being able to make NElf mages that set me on the course of approaching the game the way I have. He is my secondary raider on Muradin (enchanting materials, yet again) and the character I play most often after the druid and shaman. Still love the Gnome laugh after all these years. Joke all you want about Gnome punting, after taking this mage into battlegrounds recently, I have to say that mages have a ridiculous ability to keep other players frozen almost indefinitely. Try punting me when you are frozen in place, you big green monster. I’ll just laugh and blink away.
Rasmillia – GnomeWarrior (Mining, Engineering) Watching making of documentaries for films that I’m a fan of, I hear comments like “it was my favorite scene, but it just didn’t make it to the cut” a lot. This toon started out as a male named for one of my favorite SF characters. But he needed to be a she, and she had to have a different name. I should have just duped the name Rastarsha, but I stole Starsha from a guildmate and I didn’t want to go flouncing around her server with her name tacked on to one of my toons; so millia for warrior (Milly for short) never mind that another guild mate now has a toon named Milly. I think she’ll understand. I really, really wanted her to have the pink pigtails. That was a must; that and dual wielding two-handed weapons. I admit it, I am easily amused.
Jainrasig – PandarenMonk (Skinning, Leatherworking)Yeah, same class/profession combination as my other Monk, breaking my changing pattern. I really hadn’t expected to have an eleventh class to have to deal with. When it came down to brass tacks, they both needed to make their own leveling gear, so they both ended up as skinning leatherworkers. The daily quest that is available to Monks makes leveling much faster. The Monk class itself is quite different from the other classes. I can’t say I know what I think of it yet; which is too bad, because it will be different soon. Classes always change with each expansion.
I will really miss Pandaria, even though I haven’t enjoyed raiding through it very much. Chen Stormstout was my go to hero for Warcraft III. If I could hire him in a map, he was on my team. His quests in the Valley of the Four Winds are essential for anyone who wants to immerse themselves in the lore of Warcraft. Unfortunately they have taken out the additional quests relating to him that were part of intermediate expansion content; but that is why it is important to play through the game as it is offered, and not as it exists as preserved as part of future content. I do wonder how they will include Garrosh in quest lines that used to rely on him, since he will no longer be the warchief of the horde after this expansion. A good portion of those quests will have to be truncated, or they will simply be left alone to stick out like sore thumbs calling attention to content that should have been updated but was not.
It has been a fun five plus years playing the game so far. I have been invited to the beta for Warlords of Draenor and have done some minor fiddling with it, but I really wanted to hit this milestone before allowing myself to be diverted. The long quest has been completed. On to the next one.
After I had leveled 22 toon through the expansion that followed Mists of Pandaria; and after I had quit playing World of Warcraft for an entire year as a protest against the way the developers were manipulating the player base with their programming shortcut of adding and removing flying from the game with each expansion; I decided to change the way that I would play World of Warcraft. If I was going to continue playing the game I was not going to be leveling any more toons than were absolutely essential to provide the support I needed to continue raiding and not burning out while raiding.
To that end, I deleted all but four of my Horde toons and moved the remaining four to Nordrassil, a shared server with Muradin. The Terenas server that they had been on was later added to the group of servers that makes up the Muradin server, so I could have left my toons on Terenas and still been on the same server as my Alliance toons. But I wanted a clean break from the server and the negative experiences I had on Terenas trying to raid with Crimson Retribution and other raiding guilds there. So in the end, I don’t regret spending the cash it took to move those four toons. I definitely don’t regret deleting any of them. I contemplate deleting more toons every time I start to obsess about playing all the toons I have left all the time through everything.
I deleted several Alliance toons as part of the process of forcing myself to change the habits of play that I had found so chafing while playing Warlords of Draenor. I have pointed the links that used to to go toons that no longer exist to the new toons location on Nordrassil, and removed the links for the ones that simply no longer exist. My experience of returning to World of Warcraft with the 8.3 release of Legion was interesting in several ways, and a let down in others. I was not able to catch up to my friends on Muradin until the Battle for Azeroth expansion went live, and because of my experience of missing out on raiding through Legion, I decided to just purchase Shadowlands and roll with the changes this time. I think it was the right move, even though the content is still not quite what I would call satisfying. The guilds I created are populated only by me and the ghosts of the friends who used to play but are either not with us anymore, or are playing other games now. World of Warcraft is not what it was, but then nothing remains the same in this world, especially not the games we play.
We have World of Warcraft Classic now; but much like Coke Classic when compared to the memories of those green glass bottle sodas of yesteryear, it isn’t the same experience as it was playing the game back in 2008. The expansion I miss the most is Wrath of the Lich King, not classic World of Warcraft, and I know that there is no returning to that time because the people will not be the same people they were when Wrath of the Lich King was all the rage, and everyone was playing the game. There are new games and new people and frankly it is only a matter of time before I move to a new game and meet new people. That time is not yet now.
The story about the GyroStim and the sports writer promoting it struck a chord with me. As a long time Meniere’s sufferer, I’ve seen a ton of these kind of devices promoted to me as a ‘cure’ for what ails me. The people who do this kind of thing, the “Chiropractic-Neurologist” in this story, are amongst the cruelest predators you will ever meet, because when you have a disease for which there is no cure, you will do almost anything, pay for almost anything, to make the suffering stop. They bank on the victims desperation, KNOWING that if they have money, they’ll buy the fakery, just to experience that moment of hope that things will get better.
It’s almost enough to make one wish that hell existed, just so these types of people will be punished for their trickery in a proper fashion. I know that the courts are no remedy for this, unfortunately. I offer a heartfelt thanks to Dr. Steve Novella for fighting the good fight on this subject.
Your family went on a holiday, and you are the one who has all the back pain. That kind of stuff happens to me all the time. Other people can go on a holiday, have fun,come back somewhat tired but okay. But you and me practically die if we try to even enjoy ourselves one bit.
A friend with a chronic illness.
I get stir crazy sitting around the house. I just want to go somewhere and get out. This neurosis of mine drives The Wife nuts in turn, because she’s out all day and just wants to relax. She suggested that I go with her to pick the children up from her mother’s, a trip of more than eight hours in the car each way, and I balk at the thought of all the pain the car trip will cause.
I don’t know what it is that causes my back, hip and leg pain, but it is one of the contributing factors to my disability. I cannot sit in a regular chair for more than an hour without being in pretty intense pain down the back side of my left leg. Sitting in a car for any length of time can cause the pain to expand from the back of the leg to both hip joints and my lower back. Frequently, exiting the vehicle is a rather lengthy process of re-establishing feeling in my legs and relieving the pressure points in my back. Then it is a process of several minutes of determined walking to work out the pains in the hips.
I felt I needed to go with her anyway. The Mother-in-law was watching the kids, and she was going on her Alaska cruise the day after we left her house. It was a rare chance to tell her to have a good time in person, see the kids for the first time in a few weeks and get out of the house.
The first day of driving went pretty good. I drove for about 4 hours, stopping every hour to walk around. After I started hurting so bad I couldn’t concentrate on the road properly, I handed the wheel over to The Wife and just tried to cope. When we got to Mom’s house, I was so sick from being in pain that I could barely manage a “hi and good luck,” ate a little something to buffer the pain medication (even though I wasn’t hungry) and fell promptly asleep.
The trip back home the next day was torture. I woke up in pain from the stiff mattress. The car was so painful that I handed over the wheel within the first hour. I basically stood on the floorboard, forcing my lower back into the seat (which seems to shift the pain, making it more manageable) for the entire trip. I’ve been back for two days, and I’m just now feeling like myself again. I hadn’t noticed the tiredness until this trip. I’ve slept 10+ hours every night since we got back, and I’m still exhausted. What a vacation.
Do people ever accuse you of ‘faking it’? I get that all the time.
Question from a fellow sufferer
The Wife used to give me trouble about my allergies because I missed a lot of work. We live in Austin and as the locals will all tell you If you don’t have allergies, live here five years and you will. She developed allergies a few years ago and she has apologized for harassing me about missing work for allergic symptoms ever since.
My sibs on the other hand wouldn’t be so direct as to tell me to my face that I am faking it, they just don’t invite me to do much since I applied for disability. One of my sisters accused The Wife of faking her nightshade allergy a few years ago because we wouldn’t go eat where she wanted to eat. We still haven’t forgiven her for that. You can choose your friends, but you only wish you could choose your family.
I haven’t written about my disability for quite awhile now (although I started the blog with that subject) It’s been almost two years. I’d just as soon not discuss something that has negatively impacted pretty much every (waking or sleeping) moment of my life since it manifested itself. if I spent as much time discussing it as it’s presence in my life would seem to warrant, I wouldn’t talk about much else.
Added to the daily dizziness and tinnitus from Meniere’s, there is the Piriformis syndrome that makes any form of sitting an exercise in slow torture. Then there’s the constant mold allergies (thanks, Austin) which also acts as a trigger for the Meniere’s. I could go on, but I won’t.
I have been attempting to get an acknowledgment of this disability from the U.S. government for about two and a half years now. I haven’t mentioned that at all, because I didn’t want to have to explain myself to people who inevitably would strike an attitude; like this one displayed by a relative in response to my thrashing single payer health care systems in general, and Hillary Care in particular:
I guess what disturbs me most is that you say you are libertarian, but you are also trying to get the government to give you a free ride. This doesn’t make sense to me. Which way do you want it? No government involvement in personal business, or do you want the government to pay you for being ill? Can’t have it both ways.
Cats out of the bag now, I think it’s time to have this conversation.
…Starting with the accusation of wanting a free ride. What an interesting way of describing an agreement between two parties, where one party pays into a ‘fund’ for all of his working life, and the other party promises to compensate the first in the event of disability and old age. In case there is any confusion here, I’m the party of the first part, and the U.S. government is the party of the second part.
I have diligently paid all my taxes over the years, including the 17% social security tax (half paid by my employers) which supposedly funds an account with my name on it, to be paid out in the event of disability and/or old age. That account has been funded to an excess of $40,000, money paid in good faith, based on the promise to provide a safety net for me if I ever become disabled or reach retirement age.
I have been released from two jobs now because of ill health. Employers do not want my services any longer. I spend every day combating the symptoms of the various ills that plague me, and it doesn’t leave me with much in the way of productive time; and my lack of employment denies me access to health care insurance, the only way that most of the treatments (surgery) can be afforded (whether they actually work or not) I don’t know how else to define ‘disabled’.
So here I am. I am disabled and the government has taken more than $40,000 from me over the course of my working life, with the promise to compensate me. I’m asking them to fulfill a contract. I’m asking them to provide the vaunted safety net that all the Democrats talk about.
After more than two years of fighting over this issue, I’m still just as without a safety net as I was at the beginning, even though all the doctors I’ve been to see confirm that I am disabled. (or at least that I do indeed suffer from the ills described) Two applications, three appeals, extra medical costs, etc. What do I have to show for it so far? Ridicule from an administrative law judge (I’m convinced that he refused to feel compassion for another white guy who clearly just needs to get back to work. White guys can’t be disabled, you know) and from former friends and family; and not much else.
Who’s getting the free ride? Sounds like the government from this end. Their actions clearly show that they’d prefer I dropped dead on the job before age 70 (which is when they are required by law to start paying me. Not the oft referenced 65 that the current retirees qualify for. How much longer will those younger than me have to work? 75? 80? Perhaps until they drop dead as well) rather than pay me anything at all; much less concede to something that trained medical professionals have stated is fact.
This is the reality of any government program; and it is precisely what it will be like to have government provided health care, which is nothing more than a government sponsored welfare program in which everyone is required to participate. Single payer health care under the U.S. Government will function in a manner indistinguishable from the Social Security system. The thought of this should scare anyone.
Now, if you go back and read some of my posts on the subject of Social Security, I’m sure that it will become crystal clear just how much of my money is waiting for me to need it; that number is somewhere in the range of zero. But we aren’t talking about the reality of U.S. government fiscal policy here, we’re talking about government programs that exist (whether I want them to or not) funded with tax dollars extracted at gunpoint from my paycheck. Programs which the government and it’s supporters insist are fully funded, and aren’t in crisis. I’m asking them to put their money where their mouth is. Provide that ballyhooed safety net, show me the money.
I don’t want it both ways; I want it to be one way. Either government programs work, and I get paid for being disabled (which I am) or government programs don’t work, and we run like hell from proposals to expand the size and scope of government to incorporate more of the health care system. Either there’s something wrong with taking money from the government for any reason (old age, disability, HEALTH CARE, corporate welfare, etc) or there isn’t any reason to not take what’s offered to you; and since most of my detractors will gladly accept their retirement money if they live that long (much less agitate for Hillary Care) I don’t think they are the ones who get to cast the first stone.
I see myself as beholden to pursue the disability claim given as I am disabled, and the government insists that it’s programs are there to help me; even if I only prove the opposing point, that government programs don’t work. So far, they aren’t looking very helpful.
I did get approved for disability a few months after this was written. It took an additional year of fighting to get the back benefits that I was owed, an arcane process that should not be anywhere near as time consuming and heartless as it is. I’m still not certain, even ten years later, that they didn’t stiff my attorney. That is the nature of government guarantees. What is guaranteed is that you will have to fight for your benefits.
Having said that, and now getting the benefits I was owed, I have to admit that aside from the fact that the fight was stupid long and completely pointless, government programs do actually work. Having been forced to acknowledge the error in my ideology, it is time to revise the ideology. Consequently I’ve stopped calling myself a libertarian. I would also like to state that Hillary Care would have been a better system than the one that was put in place by the Democrats under President Obama.
Health is not a commodity. We need to stop treating it like it is one.
As usual. Another week has passed, and I still haven’t worked up a decent blog entry. Took a stab at one tonight, only to draw the conclusion that the thoughts I want to express are still half-baked.
“they’re always half-baked!”
I may not be the most prolific blogger on the planet, but I get there in the end argument wise. Or at least that’s what I keep telling myself.
So, while I have 50 odd unfinished blog entries in the queue, at least I can say “I’ve got the Christmas decorations boxed and put up in record time, for this household.” No need to pretend the twinkle lights on the back porch are actually there for ambiance this summer…
Driving While Vertiginous. Which is something I try to avoid.
I hate talking about the Menieres, but it bears mentioning once again (for record keeping purposes, at least) because today I realized that I’m unable to make left turns in heavy traffic. The necessity to move the head back and forth to check both directions of traffic always sets up a momentary disorientation; requiring that I hesitate just long enough for my head to clear that I tend to loose my chance to turn. I’ve gotten used to making 4 rights where possible, just to avoid a left turn. I noticed today (I had to get out and deliver things for a friend) that I have certain places I can comfortably get to, and certain routes that I will take. But if it requires long periods on the freeway (most times even getting on the freeway) lane changes, or left turns in high traffic, I probably either won’t go or will get someone else to drive. It’s too dangerous, in my opinion.
As someone who once drove 8 hours a day, 5 days a week testing tires (in any weather) for a living, I find it quite weird to not be willing to get in the car and drive.
(minor vertigo, major headaches all this week. I blame the allergies)Rev. 03/07/22