When I’m questioned about why I’m retired already, or when someone airs doubts like, “Are you really disabled?“ the subject of Meniere’s disease is bound to surface. It is bound to surface because Meniere’s disease is the answer to both questions. If you just stumbled across this article on my blog and want to know “What is Meniere’s disease?” I can understand that feeling. I’d never heard of it before its symptoms wrecked my life.
Here is Wikipedia’s introduction of the subject:
Ménière’s disease (MD) is a disorder of the inner ear that is characterized by episodes of feeling like the world is spinning (vertigo), ringing in the ears (tinnitus), hearing loss, and a fullness in the ear. Typically only one ear is affected, at least initially; however, over time both ears may become involved. Episodes generally last from 20 minutes to a few hours. The time between episodes varies. Over time the hearing loss and ringing in the ears may become constant.
The cause of Ménière’s disease is unclear but likely involves both genetic and environmental factors. A number of theories exist for why it occurs including constrictions in blood vessels, viral infections, and autoimmune reactions. About 10% of cases run in families. Symptoms are believed to occur as the result of increased fluid build up in the labyrinth of the inner ear. Diagnosis is based on the symptoms and frequently a hearing test.
Wikipedia, the free encyclopedia
That description matches up to my experiences. I’ll take that as a working definition for the subject of Meniere’s disease. Feel free to read the rest of the referenced article if you need to know more. That handles the basic introductions, for anyone who might need basic introductions. If you are a fellow sufferer and I sent you here to read this, The rest of this page is for you. I want to answer your questions. That is why I wrote this story. That is why I maintain this page and my treatment article with my current experiences.
I was a hardcore individualist for decades. I prided myself on knowing how to make things from scratch; knowing the ins and outs of the most rudimentary technologies an individual can master. I did this just in case I was ever alone and without the necessities we take for granted, especially today. I treasured this hard-won knowledge. It was my zombie plan before there was a thing called a zombie plan. I’d been collecting that information with just such an apocalyptic scenario in mind since the mid seventies. Between Soylent Green, Planet of the Apes and Logan’s Run, was there much hope left for the future? Even Star Trek predicted eugenics wars and near extinction in the time between the 1960’s and the future where we could cross interstellar space in the blink of an eye. The apocalypse everyone expected thankfully never came, but I did meet some interesting people in different survivalist circles as the years progressed from the 1970’s to the 1990’s.
Then came the Fall. Or was it a Spring? Seasonal allergy humor, never mind. Then came the vertigo. That’s what happened. Then came the vertigo, and everything changed. In order to avoid the TL;DR’s, here’s a link to my treatment article:
That article goes straight to listing symptoms and then describing the treatments that I have tried and and the treatments that I have stuck with for the long haul that is all chronic illness. If you need quick answers, read that article first. I’m sorry that you suffer with me. I wish it were otherwise.
The questions about Meniere’s and my relationship with Meniere’s usually come in two forms. “What symptoms do you have?” or “Does this sound like Meniere’s?” is asked most frequently because Meniere’s has no etiology, no known cause. It is diagnosed by noting symptoms and ruling out known causes which might or might not have treatments of their own.
Most doctors do not know what constitutes Meniere’s and many people diagnosed with it could have an incorrect diagnosis from a well-meaning but poorly informed doctor. Most sufferers just want to know what is causing their symptoms and how to make them stop. The symptoms of Meniere’s are described and the sequence in which they manifested for me are laid out in the treatment article.
The other question I get a lot is “what do you do to combat Menieres?” This question is usually asked because, rather than there being no information available on the subject of Meniere’s online, there is a lot of contradictory information about the subject from a myriad of sources; from both non-profit assistance groups and from for-profit websites peddling their own wares. While I mention some treatments here, the treatment article is where I spell out everything I’ve tried as best I can remember it.
This page represents a collection of memories dredged up over years of introspection on the subject of what is wrong with me. I’ve come to find out that there is a lot wrong with me, so here is a narrative version of my life events from the perspective of how all these events stacked up to permanent disability due to Meniere’s.
Vertiginous Shakubuku
I had taken off early from work to go get my children from school. It had been a fairly hectic day and I was frazzled and the traffic was the usual Austin stop and go parking lot all the way across town to pick up my daughter from her school. Then I drove back across town through the same traffic to pick up my son from his day care.
We had all just gotten back in the car. I had strapped my son in the child seat, made sure my daughter was buckled into the passenger seat and gotten in the car myself. Visions of which kind of food we’d get on the way home were being discussed when the world came unstuck and started to spin around my head.
This wasn’t my first bought of rotational vertigo. It wasn’t even my second, which had mercifully happened when the Wife was present and could watch over me while I suffered through the symptom that rightfully makes Meniere’s disease a disability. It isn’t the ear pressure, which is maddening. It isn’t the tinnitus, which hammers the brain constantly but can be tuned out if you know how. It isn’t even the progressive deafness which takes years to manifest.
No, the thing that makes Meniere’s Meniere’s is the unpredictable onset of rotational vertigo, and the invalid state that it leaves the sufferer in for the hours or days that it can last. I had nothing to alleviate the rotational vertigo with me in the car. At that point in time I had no idea how to treat it other than to hug the toilet and throw up until it passed.
I couldn’t do either of those things because we were miles away from home, in the car, with my children relying on me for their survival. I sent my daughter back into the school to see if she could use the phone, but the doors were all locked and the teachers were all gone for the day. I didn’t have a cellphone because we couldn’t afford one.
I had only sporadically worked since the rotational vertigo had re-emerged from whichever nightmare closet it had retreated to after showing itself to me that Spring of 1984 when my ears first started to act up, in what seemed like another lifetime ago. Now it was 2003, 18 years later, married with children and lives other than my own to worry about.
Had it just been me in the car I would have tried to drive home anyway. Being debilitated had never stopped me from driving before. I remember one truly stupid morning driving home from the club blind drunk, vomiting out the open driver’s door while the vehicle moved pilotless down the roadway. How I managed not to be killed or to kill anybody else that night is a mystery to me. I needed to be somewhere else and so I went. Being drunk had never stopped anyone I had known from driving before. I had role models to blame for my reckless behavior that night, even if I was technically an adult at the time.
A lifetime later, trapped in the car with two children whose lives meant more to me than my own, I wouldn’t willingly risk their lives on my invalid state of existence. So we waited. It was summer in Texas so we sat there with the engine running in the car and the air conditioner blowing full blast on my face while I stared fixedly at a screw head in the interior finish of my car. I can remember the greyish-tan color of the plastic and the black philips screw-head as vividly as if I had seen them yesterday; and I sold that car fifteen years ago.
This went on for about two hours. After that time, with little let up in the vertigo and no convenient police cars to flag down, I got my daughter to play lookout for me. I would creep forward to an intersection and wait for her to tell me it was clear. Luckily there was little traffic on the side roads between where we were and where the house was, so I just went block by block until we got back to the house, where I promptly went to the bathroom and started throwing up.
A friend bought a cellphone for me the next day and demanded I allow her to pay for it. I started carrying meclizine around with me. When that proved to not be enough I got valium and promethazine and had to use them and the cellphone pretty regularly to keep the nausea to a minimum and to call people to get me home. To get my children home. Then I stopped working and things got a lot easier to deal with even if paying for the things life required got quite a bit harder.
I’ll never forget that day, though. How helpless I felt. How dreadfully wrong everything could have gone. Its one of those life-scarring events that keeps me from working to this very day, and that day was about twenty years ago as of this writing.
That was my wakeup call, my shakubuku moment (Grosse Pointe Blank) that was the moment that I realized that I didn’t know anything and that if I didn’t alter my understanding of the world around me, it was going to kill me and my children and there was nothing I could do to stop it. That was the beginning of my story of coping with Meniere’s, even if it wasn’t the beginning of the actual story.
Let’s tick off the numbers from the top, shall we?
My First ACE
I was born overseas just outside of the Air Force Base my mother and father were shipped to, just North of London, England. The base didn’t have neonatal facilities, but the nearby hospital did, so my mom was bundled in an ambulance and ferried to the nearest neonatal unit where the nurses somehow managed to give me a herpes virus during the delivery (my first gift. Thanks!) Mom swore to her dying day that she never had the virus, so it had to be the nurses who gave it to me.
Six months after I was born my mother and father were divorced. A year after I was born my Mom was remarried and we were living with her new husband’s parents in his hometown in Kansas. I had three half-siblings from that marriage and the baggage that comes from being the adopted child.
I was sickly as a baby. Mother told me more than once that I cried incessantly and that she didn’t know what to do with me for the first few months of my life. She also told me that I was given a Spanish-speaking nanny (as was tradition in the social status she and my father had occupied in Britain at that time) and that I responded to the words she said to me in Spanish as if I understood what they meant. I have often wondered what those and other early childhood experiences did to color the rest of my life.
Vestibular Distress
I am laying on the ground with the world spinning around me. I grip the earth with my hands, the grass blades poking me between my fingers, but the sky continues its kaleidoscopic whirl over my head. My stomach knots into a hard ball and I vomit onto the earth under my cheek. Failure.
I’ve failed again. I’m not tough enough. I’m not strong enough. I’m never going to be good enough. I can’t even handle riding on a merry-go-round much less do anything more important in my young life.
I must have been seven or eight at the time, although this was an experience repeated many times, so it is hard to separate one memory of nausea from the thousands of other memories of nausea. Spinning rides predominate amusement parks and playgrounds across the United States and probably all across the world. Tilt-a-Whirl. Teacups. These amusements have almost never been amusing to me.
I laughed along with the other children when we would go to these places. I pretended not to be sickened by the spinning that took forever to stop in my head. You play along, as a child. You don’t want to be the spoilsport. The stick in the mud. You don’t want to be teased for being different, so you conform to the norms expected of you and never question why they are norms if you can’t achieve them. You pretend not to be ill, until you can’t pretend anymore.
That is pretty much the story of my life. From my earliest memories until my later years, I can’t spin in place or watch anything spinning without getting a sympathetic spin in my stomach. It is mesmerizing and nauseating at the same time. I can’t walk a straight line or balance on a balance beam. I injured myself any number of times on trampolines before learning that I really just needed to stay clear of them. The same with diving into the water. Anything more than just pointing the head down in midair and hitting the water is too much body positioning to keep track of for me. I have no idea how many times I’ve spun or which side is up if I try to do anything more than point at the water during a dive. I have no idea if I’m balanced or not. No idea how to stop the internal spinning once it has started.
I am a constant victim of my vestibular system. I have been almost since the day I was born.
Deadly Allergies
In 1974 my tonsils tried to kill me by strangulation and so my parents found a surgeon to cut them out. This was merely a pause in the lifelong battle I’ve waged with allergies, a battle with my own immune system. The surgery marks my earliest memory of hospitals. Of medical care. My throat hurt for a long time after that, but I didn’t care because I got milkshakes for meals while I healed. As many as I wanted.
Ear infections were a common thing. I learned through repetition to let my mother know when my hearing changed, when my ears started hurting. The doctor’s office, dentist’s office and the hospital were less than a block away from our home in that small town. The county hospital shared the same alleyway with my home, with the emergency entrance at the end of the muddy alleyway behind the next-door neighbor’s house. I don’t recall a single time that the emergency entrance was used at the hospital, although I’m sure my memory is in error. We went up it more than once since it was the closest entrance to the house.
I played in the mud of that alleyway for many years. I rode my bike through the potholes in the dirt track every summer that I lived there. Rode that same bike to the county pool that was two blocks away as often as I could. I would have lived in that pool if I could have figured out how to sleep there. However, frequent trips to the pool lead to frequent sinus infections and being banned from the pool for weeks at a time, so I had to make sure to get the water to drain out of my sinuses every time I went swimming, a miserable process of laying my face on the hot concrete at just this particular angle, so that the water could be coaxed into leaving the tied up passages in my head.
Belief
Then there was the effect of Christian Science on my family. I’ve struggled with where and when to mention this little gem of understanding, because mentioning it is fraught with tons of angst and potential explosive feedback. But understanding how I got to 40 without a diagnosis of Meniere’s, how I’ve never been diagnosed with dysgraphia even though I have had all the symptoms of it for the entirety of my life is a direct result of my mother’s early childhood indoctrination into Christian Science. Because of this fact, Christian Science has to be discussed here as part of this story.
Christian Scientists aren’t scientists; they pray to Jesus to cure what ails them. Jesus is their science, and they exercise their science in prayer rooms across the US. They still do this all across America to this day. When a child dies from lack of medical care, and the state where that child dies cannot prosecute the child’s parents, the law that allows this was lobbied for by the followers of Mary Baker Eddy, the founder of Christian Science. My mom and her immediate family were members of this belief.
Her distrust of doctors and medicine lead directly to her demise on February 9th of 2018. One of the mantras she took to her grave was doctors don’t know anything. It was her most repeated comment over the last months of her life, as doctor after doctor told her she had cancer and needed chemotherapy. You couldn’t dissuade her of this or of anything else she believed at any point in her life.
This is a hallmark of of humanity, the willful ignorance of the masses and the individual. If you think you can change the average person’s mind you simply don’t know what you are thinking. People stake their survival on believing things and this means sticking to those beliefs in spite of every bit of evidence to the contrary. My mother survived to the age of 77 and raised four children to adulthood based on her doing exactly what she deemed best at the time; and you won’t convince someone who has lived successfully by their own judgement for 70 years and more that what they believe is wrong.
If you are a Christian Scientist you don’t take drugs. You don’t see doctors, and if that religious upbringing was all there was to my mother’s belief, I think she would probably have gotten over it eventually. However, over the course of her life she was nearly killed by well-meaning doctors more than once. All her life she’d been told gibberish by people who should have known better, so she knew that people believed insane things and discounted what other people told her almost by rote. She knew what she knew, but that left her vulnerable to the things she thought she knew but was wrong about.
Mom seemed to understand the value of modern medicine and never hesitated to get me antibiotics to treat the frequent illnesses that I had as a child. But then she also swore by homeopathic remedies and left me at a Pox Party once in the seventies. She never stopped believing that doctors were pulling a scam on the sick. It all had to be a scam, somehow. She was never clear on how or why; but it was a scam, she was sure of it. She became a nurse as a way of getting near the sick people that doctors were seeing, trying to help them by steering them away from modern medicine and into naturopathy.
She never stopped believing that people would get better on their own if they just lived a better life, ate better food, got the right kind of nutrition. It was the failure of this belief, that healthy living was all you needed to keep from getting cancer that killed her a decade early. Had she not had encounters with believing doctors who proposed treatments that proved to be near-fatal, treatments that were fatal to her mother. Treatments that decreased the quality of life for the patients she tended. Patients that died anyway. Had she not watched time and again as things were labeled bad be relabeled good with more study and more time. Had she had different experiences with the medical community, she might have said yes to the promising new cancer treatment the doctors wanted her to try. The same treatment that saved president Carter’s life. But she didn’t have those experiences, and so she didn’t get to live that extra decade.
I chose to be at her side through the hospice care that became inevitable as soon as she declined to have her cancer treated. Every night for a little over a week I sat with her, listening to her breath and writing on my laptop. My Meniere’s symptoms spread to my good ear as she lay dying in my arms that morning on February 9, 2018. I further destroyed my own health with the stress of caring for her in her last days.
My Second, Third & Fourth ACE
Dysgraphia separated me from my peers at the very beginning of school. The simple fact that I could not write things on the board, demonstrate knowledge to satisfy the class, made me different from the rest of the children:
The teachers demanded I conform to accepted behavioral norms, and then punished me for my failures in various cruel ways that lingered for years afterwards, things that I go into in more depth in the above linked article. All of my time in school in that small Kansas town is colored with the torment that I endured there.
The torment only ended when Mom divorced her second husband, a lifelong alcoholic, and married a third husband that drug us all to Texas where he promptly got drunk, whored around and made a general nuisance of himself. By general nuisance I mean physically assaulting me, belittling all of us for our failures, and being so unpleasant to be around that I would actively try to be anywhere he wasn’t for most of the time that mother was married to him. He wanted me to conform and be like him, which was a thing I would never consciously do, would never give him the satisfaction of doing for him.
It wasn’t long until she divorced him too and she never took on another companion for the rest of her life, to her own personal detriment. Her loneliness tormented me, but there was nothing that I could do for her. I could not be her companion, I was her son.
School in Texas was itself a whole new form of torture, but at least the children were not set on me by the teachers at any point during my years in school here. Don’t expect me to thank you for that, Texas.
Head Injury
While out on the playground between classes in my 8th grade year, I was struck on the head by a survey stake that was tossed in the air by a fellow classmate. It weighed a decent amount, being made of 1 x 2 treated yellow pine and not the trash 1/4″ wood sticks that surveyors use these days. I lost consciousness and woke up shooting blood out of my head. They stopped the bleeding and put four stiches in my scalp.
I have a visible white scar on the spot to this day. Yeah, that was a fun experience. It was also on the right side of my head and not the left side, so probably not a large factor in my early left-ear dominated Meniere’s symptoms. Still, it bears mentioning since head injuries can be the cause of vestibular disfunction.
First Vertigo Experience
It was the muffling of sound that I noticed first, like I had a blown speaker in my head instead of in my car. This started in 1983-4 while I was living in Abilene, Texas. I didn’t know what was happening to me. I was in my 20’s and deeply into music. If it wasn’t the constant ringing, then it was the echo chamber effect, a distortion of sound that occasionally made conversation difficult. Allergies, I thought. Allergies that are making my ears give me problems. I tried everything to get rid of the pressure that I felt in my ears, especially the left one.
That first Spring in Abilene, after a disastrous series of relationships ended and I lost my first architecture job (the reason I moved to Abilene in the first place) I was out driving around in my car listening to music and I noticed that there was a buzzing in my left ear. I didn’t hear much of anything when the music was turned off, but when the music was on, the sound was wrong. High volume or low volume, the music just didn’t sound right. This went on for a few days and it was about to drive me nuts. Just enough pressure behind the eardrum to be noticeable, and just enough distortion in the music to be annoying.
I couldn’t clear the pressure by working the temporomandibular joint as I had done in the past when atmospheric pressure changes created a similar feeling behind the ears, so I got undressed and sat in the tub with the shower pouring the hottest water I could stand straight down on my upraised left ear. I figured I’d use the heat like a heating pad to drive the infection or fluid down out of that side of my head. I let the shower drum on that side of my head for about an hour or so or at least until the hot water ran out. I did this two or three days in a row. I know it was more than once because I recall my roommate getting pissed at me for using up all the hot water.
My roommate was a fellow draftsman at the design firm I had briefly worked at. Both he and my employer were baffled by how long it took me to draw anything by hand. My employer was only paying me minimum wage ($3.85 and hour) so it wasn’t like he was investing a huge fortune in my time at the drafting table. The other draftsman and I didn’t share many musical interests but we did share an interest in movies. When I was suddenly unemployed he took pity on me and offered his spare room to me until I worked things out. What I did was find a job in a bar, my old stand-by. I started coming in late at night smelling of alcohol and cigarettes, making noise on nights when he had to be up early for work. Then there was this thing with there being no hot water in the morning. It was almost the last straw for him.
The last time I tried this technique of running hot water on my pressured ear, I finally got it to release. When that pressure came off it was like a hammer hit me on the side of my head. I was horizontal in the tub with the water hitting me in the face when I came to. I guess I passed out for minute. The tub was spinning around me. I had to feel my way up to the shower handles to turn the water off, and then I slithered out of the tub on my belly and then managed to get up on my hands and knees. Walking was simply not possible.
I crawled to my bed and leveraged myself into it, hoping the vertigo would pass. I slept for at least a day after that event, and the roommate wanted me gone not too long after that. There was clearly something wrong with me and he wanted no part of it. He told me as much at the time. The garishness of the apartment still flashes in my mind as I think back to that place in Abilene. Freaky 70’s design colors.
Architecture
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) when I was drafting, 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. It was harder to justify overtime under those conditions.
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 project pretty thoroughly mapped out. You wanted as few changes as possible to show up after you started the production documents phase of the 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? We can do that (I did do that) 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 (114 hours 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 mounted.
Every Spring and every Fall since that first vertigo event in 1984, 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 occurrence. The Meniere’s 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.
Magical Green Gel Caps
I have a specific treatment regimen for ear fullness because I was certain that my symptoms were caused by allergies back in the 1980’s when this all started for me. I tried and then discarded every single allergy treatment commonly on the market between the years of 1984 and 2003, and the only real symptom that I had to judge effectiveness against in those years was ear fullness and sinus pressure. At some point after we moved to Austin the Wife and I settled on the medication that we decided worked best, and that was Sudafed Non-drying Sinus.
They were magical green gel caps to me. I would take those things every day, several times a day for months at a time. If I had them I could operate reasonably smoothly on a day-to-day basis during the bad months, before the weekly vertigo started to knock me on my ass. The gel caps were made up of the two drugs, guaifenesin and pseudoephedrine and I could buy them over the counter anywhere in the United States. They were my lifeline, they allowed me to pretend that I could live a normal life for about half of the year, every year after my first vertigo spell.
Then the US decided to declare war on pseudoephedrine. It was a bad drug. You used it to make street meth and red-blooded Americans had to stomp out meth availability across the United States. This was par for the course for United States drug policy.
After the decision to demonize my allergy medication, there was a shakeup of the industry in general. Guaifenesin stopped being cheap and readily available, much like pseudoephedrine. Mucinex still acts like it is all things guaifenesin. I won’t touch the stuff and only buy generic guaifenesin. Sudafed started peddling a different medicine than their trademark suggested and to this day hawks their wares in methods that border on fraudulent. As with most things that you want to purchase for the most reasonable cost, know what the generic name of the thing is and look for that thing.
So I started buying the tablets separately, generic pseudoephedrine and generic guaifenesin in as great a quantity as I was allowed to purchase at one time. As the years went by and other health concerns emerged, I started to have doubts about continuing the use of my beloved Sudafed ne pseudoephedrine. Then life happened and my treatment regimen changed again. I was diagnosed with Meniere’s and I began to experiment with a lot of different, more potent treatments, just to see if I could live some kind of a normal life.
I do know that guaifenesin does something for ear pressure, and I established this through direct experimentation. When I became bilateral (Meniere’s in both ears) after the death of my mother and agreed to undergo intratympanic steroid injections to stave off hearing loss in the newly affected ear, the treatment also relieved the ear pressure for several months running. I was so relieved by the lack of pressure on the right side of my head that I asked to have the injections in the left ear as well. The treatment worked and I was pain free for the first time in years.
I didn’t see the point of continuing to self-medicate with pseudoephedrine & guaifenesin if the ear pressure was no longer a problem and I stopped taking them because of this. Six months passed. I woke up one day with returned ear pressure. I tolerated it for quite awhile thinking it would ease off eventually, but I started to notice that the left ear was sensitive in some very new and odd ways.
If I plugged the ear with a fingertip and wiggled it around my body felt like it changed shape. It felt like my right shoulder was getting longer and my right leg/hip was moving. It was the weirdest damned thing I’d ever felt and I’d only started noticing it since altering my allergy regimen.
So I went back to get another steroid injection, and I screwed that one up by swallowing the wrong way. After nearly a week bedridden with vertigo from that experience, I decided that self-medicating with guaifenesin was preferable if it worked to stop the pressure and other vestibular oddities. After just a few doses of guaifenesin, the ear pressure was off and the world didn’t turn inside out when I put pressure on the eardrum. I haven’t noticed that symptom since that last injection and the subsequent return to a dose guaifenesin when I notice the ear pressure.
With a nod to the concerns of my cardiologist I have forgone continuing the use of pseudoephedrine unless I simply can’t breath through my sinuses at night. Guaifenesin will remain in my treatment regimen, though. I can’t take the weirdness of my body changing shape when I rub my ears. I’m sure most sufferers would agree with that.
Testing For What’s Wrong
When the vertigo started to present itself along with the tinnitus and the ear pressure, which is also when I started to notice permanent changes in my hearing, I had no treatment options that I could fall back on because the nausea and the vertigo of spinning was something that I had merely endured as a child. That kind of vertigo was something that you braced yourself to endure until it passed; which was generally less than an hour’s time, sometimes even less than a minute. I had never experienced an extended bout of vertigo like the ones that started to take over my life back in 2001-3 when my life took a left-turn into the land of near-permanent spinning.
The first time that I spent the night on the bathroom floor suffering from vertigo; spinning, vomiting and then unconscious, I made an appointment with an otolaryngologist (ENT) and asked open questions about what these seemingly-related symptoms meant, rather than assuming that they were just allergies or some other thing that I could easily treat with over the counter medication.
The second ENT gave me my first caloric stimulation test, warm and cold water in the ears. Light bars on the wall that I was supposed to track. They couldn’t tell me what was wrong with me, but even this inconclusive attempt at an assessment was better than the first ENT that I saw. That guy told me I was mental and needed a psychiatrist. That might have been a true observation at the time, but I wasn’t there for advice on my mental makeup. I was there to stop the vertigo and nothing more or less than that.
The third ENT gave me my first thorough battery of tests (thank you Dr. Thompson) Electronystagmography (ENG) and caloric stimulation, this time with hot and cold air. I have had audiograms run on my hearing for most of my life because of my frequent childhood ear and sinus infections. This was the first time that they showed me the results for one. There was a noticeable drop in the hearing in the left ear. That ENT first said the word Meniere’s to me.
Several of the ENTs I saw over the time I spent trying to figure out where the vertigo came from performed various versions of videonystagmography (VNG) and head-impulse tests (HIT) although they never explained what it was they were looking for until long after I had the Meniere’s diagnosis and I started asking tougher questions of everyone around me.
I’ve had several CAT scans over the years, the most recent one was run specifically to rule out superior semicircular canal dehiscence (missing or abnormally thin bone structure over the inner ear canals) I’ve also had several MRIs or magnetic resonance imaging tests run over the years. The brain looks good. The problem is in the ears.
I was briefly seeing a new ENT and they decided that some essential tests were missed in my original diagnosis. I’m not hostile to finding an alternative explanation and treatment for my symptoms, so I didn’t dismiss their theories out of hand. I probably should have.
They wanted to run an Electrocochleography (ECOG/ECOCHG) I’d never had an ECOCHG before and was confused when the subject first came up in the Meniere’s subreddit a few years earlier because the redditors kept calling it an ECoG; which is a widely-known experimental procedure involving placing electrodes directly on the brain. I couldn’t imagine how it could be a common test conducted on patients suffering acute vertigo. As it turns out I was right, but for the wrong reason.
Once that confusion was cleared up on my part I was curious to know what that test was like and what it might show for me. When it was suggested I should get the test I was tempted, but then I thought better of it and went seeking a second opinion. I don’t think that much can be revealed from an ECOCHG now aside from ruling out a Meniere’s diagnosis, something that will not get me any closer to the kinds of answer that I as a sufferer will find helpful. I don’t really care what you call this collective group of symptoms, what I want to find is a cause and through that discovery find a more useful treatment.
From the very beginning of my symptoms I have been convinced that there is an autoimmune-caused quotient of the overall problem. While I have had several blood tests to rule out autoimmune inner ear disease (AIED) and other commonly known autoimmune issues that can cause the symptoms I have, none of them have come up as positive and so none of them have produced results that I found useful.
I remain convinced that there is an autoimmune-related cause for my symptoms in spite of there being no evidence to back up this belief of mine. Betahistine and guaifenesin added to the treatments that I already undergo for hypertension seem to be the most useful medications at preventing ear pressure and vertigo. I can’t get past these facts. An allergy treatment and the most common Meniere’s treatment in the world are the two drugs that produce the best results for me aside from just basic rest and exercise. This has to mean something.
Life-Altering
At the height of my architectural abilities I could construct entire projects in my mind and then retain them long enough to get the bare bones onto paper. I did this even better when I learned to computer draft and could bypass the dysgraphia by going straight to the design surface in the machine. The machine that could rapidly echo what was inside my head without the difficulty of trying to make hands do things they didn’t want to do. I could keyboard in coordinates faster than the machine could keep up with in the early years. I never needed a map even though I loved paper maps, because I could picture the roads and topography in my head without ever having driven to a particular spot.
Then one day I couldn’t do it anymore. It wasn’t sudden, though. I had to write things down in my day planner or I would forget them. I had to start carrying a day planner and that should have been my first red flag. I was an early adopter of Palm devices (the first real smartphone) specifically because I could bypass the physical act of writing in order to get my thoughts somewhere where they wouldn’t disappear. I started taking reams of notes electronically, something I had never had to do before. When I went in for training for my architectural exam I recorded every minute of the material because I knew I’d need to review it or I wouldn’t remember; this from a guy who never studied for a test at any point during his school years. I either knew something, or I didn’t know it. If I didn’t know it, it simply took listening to someone talk about it to learn it. Until that wasn’t enough and I had to preserve the knowledge some other way. I got my architect’s license and the respect that comes with it, but I knew that something was changing about me and I couldn’t quite put my finger on what it was.
Then I had my second vertigo attack, the one I start this page with. The scarring event that altered my life forever. After staring at that screw head for two hours and then having to rely on my twelve-year-old co-pilot to help me bring us home safely, I spent a lot of quality time examining how and why I ended up where I was. Where I am.
The worst part of this disease, Meniere’s disease, is that it stole my trick from me. I cannot visualize data the way I used to. I can’t map routes anymore. In my head I see a straight line from turn to turn with two fixed endpoints. Where I am to where I’m going. If I don’t have navigation running on my smartphone I will get lost even if I’ve been to that place dozens of times. It is a struggle even to remember basic concepts on bad days. I don’t trust myself driving because I don’t feel like the world outside the windows is real anymore. I’m still fascinated by structures, but I have to be in them to make sense of them now. I now have to check my notes before taking notes because half the time I’ve already taken those notes and I’ve just forgotten that I took them.
I would get angry, but the only person to be angry at is me, and that doesn’t help anything. My last temp job was a disaster for me. I could barely complete editing projects that had been assigned to me. I just couldn’t focus anymore. I had to apologize to my friend who had talked his employer into contracting with me, and then bail out of the contract. It was the end of my architectural working life.
I had to file for disability:
I didn’t manage to get approved for disability until 2008, and then didn’t get the back-owed benefits until 2009. Five years, start to finish. Five years of clinging to the house I had managed to purchase, the first house I’ve lived in that was owned by my family since we left Kansas for the last time. The financial pressures tear at your mind in ways that the physical disability doesn’t.
It is simple cruelty to inflict additional suffering on people who are already clinging desperately to the last vestiges of their dignity. If you want these people to die admit it, at least to yourself, but don’t force more suffering on them. It makes you less of a person when you do that.
I couldn’t work outside the house under those conditions, and what work I could do was very limited. No one understands how impossible rotational vertigo is to deal with unless they are suffering from it themselves. Everyone thinks they can grasp what it is like, but they can’t unless they have experienced it. Time and again I’ve had people come to me after suffering from vertigo for the first time and say “I don’t know how you deal with that all the time.” Luckily it isn’t all the time. I’d have been dead years ago if the vertigo was inescapable. I could escape it, at least briefly, long enough to give me hope for the future.
I was crippled mentally for years because of the symptoms. The constant barrage of sound from tinnitus. The unrelenting ear pressure that required me to dose myself with antihistamines, expectorants and decongestants. The vertigo that had me on Meclizine for a decade before I was prescribed Xanax. All of this combined to afflict me with impenetrable brain fog that lasted for months.
The dysfunction in my internal balance mechanisms caused my brain to re-wire itself; in other words, the dysfunction forced me to retrain the way I do everything. There is no other way to describe what has happened to me since diagnosis. However, it was the Betahistine prescription that turned everything around for me. I had tried everything else except surgery, and I didn’t want someone to start cutting on me again unless I had tried everything else first. The treatment article I linked at the beginning goes through the various treatments I tried before settling on Betahistine as a last resort. Betahistine had no evidence to back up its use as a treatment for Meniere’s, but then Meniere’s itself has no known cause. So I finally ran out of other options and started taking Betahistine in a last ditch effort to avoid surgery.
It worked far better than I had any right to hope for. My mind slowly cleared for the first time in a decade or more. I trained myself consciously and subconsciously to ignore certain sensory inputs over the years since the symptoms started to appear, and that kept me from spiraling too far down into depression. With the addition of Betahistine I was able to organize complex thoughts again. I could start a real writing project like this one has been.
The ability to retain and synthesize data without having to write it down first is still gone though. 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, much less be able to effortlessly visualize a construction project. I doubt that the talent I need to rapidly 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. Maybe I can be a writer? Maybe?
I used to get carsick all the time. If I wasn’t looking forward at all times, I would get nauseous fairly quickly. I still need to look forward if I don’t want to get vertigo. Any observed motion outside the window can cause vertigo. However. If I’m looking down at my lap and can’t see movement? I don’t get carsick any longer. I do get vertigo when I look back out the windshield and see that I’m moving. That still happens but it passes pretty quickly. I’m just so used to blocking motion signals that I no longer get carsick. If I sleep in the car I don’t get motion sickness any more, another change from previous decades of riding in a car as a passenger.
Driving is still a problem, and I avoid it if I can. Driving puts me into sensory overload pretty quickly, burning up all my mental resources and leaving me with little to work with after I get back home. I’ve never liked driving and now I have a reason not to drive. I’m going to take it and use it to its fullest extent. If I can walk where I need to go, I will. Walking is a blessing and should be done frequently when symptoms allow.
n=1 Or Personal Experience Only
My long-term differences from other people my age have made me wonder just how much of this disease is part of my physical nature. Was Meniere’s disease always something I was going to wrestle with no matter what I did over the course of my life? Was suffering from decades of rotational vertigo and near-constant muzzy-headedness my unavoidable destiny?
I never bothered to be truthful with doctors until I started suffering from chronic illness. I was never truthful because I knew they would hesitate to give me the antibiotics I thought I needed for my ear infections. I was never truthful because my mother had trained me from my earliest memories never to trust a doctor’s opinion through her religious conditioning. I don’t want to turn around now and blame them for not knowing I had a problem when I know I had never been honest about the symptoms in the first place.
Then the doctors stopped giving me the antibiotics that I wanted. I kept having to find a new doctor to get a prescription, and the resultant struggle with finding doctors just added to my stress load and made my symptoms that much more painful. My experience dealing with doctors who didn’t recognize the complaint and symptoms as being anything they could treat conditioned me as well. Since I knew I had an ear infection I would simply lie about the symptoms in order to get the antibiotics I thought I needed. When the symptoms only lasted a week, the length of antibiotic treatment, I was fooled into believing the treatment remedied the problem. When the symptoms started lasting longer, and I demanded more antibiotics, that was when the doctors started questioning my conviction about what was wrong.
It all came to a head after 2001 when I started having symptoms for months at a time in the Spring and Fall, and had no idea why I was unable to walk unassisted and was throwing up from the vertigo several times a month during those periods. I started to question my own sanity, seeing ghosts and contemplating demonic possession, contemplating suicide. I was pretty close to losing everything when I gave up and started looking for specialists and explaining my actual symptoms and not the rote I had memorized to get the wrong treatment. I started being honest with the people my mother told me to lie to, so that I might be able to find some relief.
Even then it took three different otolaryngologists before I found one that suggested I had a disease that wasn’t psychological. I’ve heard that dozens if not hundreds of times now, “it’s all in your head.” When the ENT told me this, I wanted to respond “Yes, yes it is. That is why I came to see you.” I restrained myself given my history of honesty with medical professionals.
Chronic illness is with you for the rest of your life unless they find a cause and a cure. Unless you get a relapse. It’s best to maximize coping strategies and store up your reserves by getting as much rest as you can daily. This allows you to do more things on the days you feel better.
I have resisted doing anything that couldn’t be reversed just because someone said it might work. The problem with it might work is it might also make the whole situation worse.
I used to go to a chiropractor religiously before I had Meniere’s. Chiropractic treatment had been blessed relief after a car crash that left me unable to move my head for a few days. But after the last Chiropractor I was seeing told me he could cure Meniere’s, and then proceeded to tug on my ear trying to make it pop like a joint would, I decided that maybe I should stick to real medical professionals from then on.
The downside of chiropractic treatment can be much worse than just worse. Neck manipulation can kill you if they do it wrong; aside from which, the parts of the ear that control balance are inside your skull and so no amount of manipulation outside the skull will change the position of those bones. No amount of neck manipulation will change your ears directly.
The frequently applied technique of puncturing the eardrum to relieve pressure, even the application of a pressure equalization machine to the tube they put in the ear (the Meniett device) does not affect the parts of the inner ear that are actually sending the pressure signals in Meniere’s sufferers:
There is far too much woo in the world. Just sorting through the claims from people who swore they could help me, but turned out to be bupkis, took several years. I’ve tried vitamin therapies, essential oils, supplements and just about every kind of snake oil I’ve stumbled across over the span of years I’ve tried treating this chronic illness. In the end nothing helps more than reducing stress, getting exercise and getting more sleep.
I heard of Betahistine, or rather, I heard of Serc within a few years of being diagnosed with Meniere’s. I initially dismissed it as a treatment because there was no hard evidence that it worked in clinical trials. Never mind that I then went on to try all the snake oil I mentioned, treatments that have never been submitted to clinical trials let alone failed to produce positive evidence during them.
After taking every supplement you probably can think of to mention for well over two years, I took the time to test them for effects. So I stopped taking them one at a time just to see if the symptoms got worse or not. I stopped taking high doses of vitamin B, C, E, D. Stopped taking Gingko Biloba, L-Lysine, etc., etc., ad nauseum. No increase in symptoms.
I even stopped taking my daily regular vitamin, Guaifenesin and Pseudoephedrine. I started taking them again because I noticed physical effects and Meniere’s symptoms again after stopping them. The over the counter allergy medications I take much more sporadically now than I used to, all because I don’t take them unless allergy symptoms or migraines or Meniere’s symptoms threaten to ruin my quality of life.
As I was discarding all the snake oil that my mother had convinced me would help me, I changed otolaryngologists and my new doctor just asked me during one visit, “Have you ever tried Betahistine?” Which was weird, because I was thinking of asking her about it during the visit.
Betahistine changed my life and that’s not an overstatement. The real contest for life improvement is a toss up between the CPAP machine that I was prescribed to help me sleep, and the Betahistine that I started about a year later. Nothing else has made as much of an impact on the quality of my life as those two changes have made. The improvement in sleep restored my mood, and the Betahistine restored my mental acuity. At least, that is how I would describe it. If you haven’t given Betahistine a try, I can’t state strongly enough how urgent it is to at least give it a try before moving on to something else. Don’t be like me and wait a decade before trying it in desperation.
The Betahistine continues to keep the major vertigo spells at bay. I still get the occasional brief moment of lightheadedness and spinning, but if I take a few minutes to orient myself with concentrated focus on a still point, I can make the vertigo recede. Usually. Sometimes I need a Xanax, but that’s down to once a month or so.
When mental focus evades me these days (brain fog) I give up and play my MMO of choice, World of Warcraft. I don’t want to lose myself in games again as I did when I first went on disability, when I had nothing real to do with my time aside from the odd bit of housework I felt up to.
I wish there was an easy way to separate this emotion from that emotion. To be able to say “ah this is from you disability and that is from your mother’s death” and then I could deal with one or the other emotional blockage more cleanly. But I can’t tell if the depression I’m feeling is a return to more severe Meniere’s symptoms or the lingering after effects of the death of a loved one, the mourning of the loss of my abilities or a change in the weather or season. It’s all a crap shoot, emotionally.
If the answers you are looking for aren’t here, I’m sorry. Try one of the linked articles. Try looking at the articles listed under the category Meniere’s. Ask me a question directly (about page) Do not despair. Do not let depression win. Rage against the dying of the light. That is what it means to live on.
This page is a work in progress and as such is subject to frequent changes. Like the treatment article that spawned this trip down memory lane, this will expand based on my experiences up to the present day and the bits of memory that come floating back to the surface that day. The treatment article has an edit history appended at the bottom and most changes to both of them will be listed there as they occur.