A fresh appeal appeared on the Meniere’s subreddit today. EECOG came back inconclusive. Am I missing something? A long and winding appeal for feedback. Something I see on the sub pretty much every day. Generally I’m not in the mood to spend time writing to newbs who could just as well have read the wiki on the subject that is pinned to the top of the sub. But I was feeling generous this afternoon. The Wife is bedridden and I feel like I should do more but can’t, so I spent a few minutes writing something that I felt was generic enough to be broadly appealing but specific enough to point them in the right direction.
No one knows what you are going through aside from you and no one can tell you how or even if what you are going through is going to change or progress. There is very little understanding of what it is that makes the symptoms that we suffer from appear, or what even causes them. As I point out in the first paragraphs here:
There are many different possible causes of the symptoms. You might try looking into TMJ disease. It may be something that a vestibular physical therapist can help you with. I’m with you on not spending time chasing the chimera of natural/holistic/placebo cures. If there is a cause then there is a real medical and/or therapeutic solution to the problem. It’s just a matter of relentlessly tracking down the cause of the problem and then addressing it properly.
I’ve been after that cause myself for most of my life. The problem never even had a name for me until 2003 and I still don’t know what the cause of my symptoms is. But I know pretty well what makes the symptoms worse now. I know when I need to medicate and when I should let someone else do the driving. That’s a step up from my low point. Here’s my story:
I would have been better served to just go walk the dog rather than to write anything at all. If I had read the username attached to that falsely ignorant appeal I would have known that it was someone I’ve run across before. Someone who really didn’t want informed answers just a pawn they could toy with and that would fawn over them and hold their hands for a nice feel-good session.
This was the second time they informed me that I was doing a disservice to the group by trying to help people with real answers to their real problems and that I needed to butt out of the convenient attention trap that they had laid. They beat me to the punch and blocked me right after the snarky reply. Time to go walk the dog. He at least appreciates the little attention I give him.
A hat/tip is due to the blog Meniere’s and Me for bringing this finding to my attention. The Wife has called me her human barometer since I was first diagnosed with Meniere’s. I try to laugh with her when she says it.
This was first published on August 30, 2019. I’m going to try to remember to move this post up when the conditions reoccur. We’ll see how that works out. The next time I thought to do this was March 17, 2022. It definitely wasn’t the next time it happened, it’s just the next time that it’s been quite this bad:
Back at the beginning of January I noticed that I would go for a walk and then spend two days fighting to breath even with the allergy treatments I habitually take during heightened allergy periods. I could handle the difficulty breathing, I’ve dealt with allergies all my life and with the limited lung capacity that borderline asthma gifted me with at birth.
Then the two-day migraines started, and that was a deal breaker as far as outside exercise goes. I’ve been walking outside so often over the last few years that I have gotten out of the habit of using the treadmill; aside from which the dog sits on the floor next to the treadmill and glares at me while I walk on it, incensed that I would have the gall to exercise without him. So I’ve been cooling my heels indoors for a bit, avoiding the wrath of the dog. His plaintive looks when we don’t go outside and exercise are hard enough to bear.
I’ve been suspecting that I was becoming allergic to Juniper pollen for several years now. It never has come up as red flag allergy in previous skin tests that I’ve submitted to, but the lungs don’t lie. Juniper/Cedar pollen has been phenomenally high this year (Jan 10, Cedar 2,937 gr/m3) starting right about the time that I started having difficulty breathing and suffering from prolonged migraine headaches.
Austinites know what Cedar Fever is:
McGreevy said early Texas pioneers first called ashe juniper trees “cedar” because of its similarities to Eastern red cedar, but neither tree is truly a cedar tree. “When the Europeans first came here (to the New World) and they encountered our Eastern red cedar, they called it cedar because of its aroma.”
So I ordered some N95 masks that I really couldn’t afford to wear regularly and started wearing a mask while walking again just to see if that helped. The migraines did go away eventually, but the breathing hasn’t gotten much better. I need to talk to an allergist again just to see if there is anything else I can do aside from not go outside, but I have little doubt in my mind that it is the Ashe Juniper that is causing my symptoms. Why? Because I did a little impromptu experimentation yesterday.
I had to drive the Wife to get scoped at the hospital. Yes, the dreaded cameras plugged into every orifice routine that we older people seem to have to endure with ever-increasing frequency was her Monday appointment. With Austin still being on high COVID alert, the hospitals swamped, it was an all-day affair for me waiting on her to be done and driven back home. At least I didn’t have to endure the prep and the procedure. Small mercies.
There is an excellent exercise trail that runs next to the hospital so I put on my walking shoes and set out for a 2 mile aimless ramble just to kill some time and get out of the car. As I was admiring the landscape and inspecting the visible architecture I noticed a smell. What was that smell? Like a cleaning solution. Pinesol? I looked up and there was an Ashe Juniper right over my head, dusting the trail with its spores, and I didn’t have my mask on.
I hurriedly slipped on the mask cursing myself for not having thought to put it on previously, but I knew that I would have a result to the question of Cedar Fever or not very soon. Today, with my lungs filled with sandpaper once again I can say emphatically, it’s definitely Cedar Fever.
It’s on the verge of May and my chest is still congested. It’s going to be a bad allergy year this year.
Migraines are kicking my ass. Have been kicking my ass for all of January so far. At least it’s not rotational vertigo, that is even harder to manage. I’ve gone through this sort of thing several times since 2003. I think I’ve got the pattern down and then, Wham! It hits me again. Migraines. Tinnitus. Vertigo. Then I reassess and I get back up and try again. Get back up and try again as soon as you are able. That is the hard part.
I’ve been puttering around the house for the last month. Every time I go out for a walk I get a migraine. I’m pretty sure it’s Austin’s notorious cedar fever that is getting me now, which is weird since I didn’t have a cedar allergy last time I checked. I got new masks to see if it filtered enough of the pollen, but no. So I’m stuck cooling my heels indoors for the duration. I’m about to start chewing on the furniture.
The belief that you have found the pattern is where the error lies. That you were actually symptom free for the span between attacks. Little things pop up, but they are little things, things you can cope with. You can cope with them until you can’t, and then you start trying to see what you did wrong. You didn’t do anything wrong, you have a chronic illness.
It isn’t karma or luck or moxie or mojo or any other version of magical thinking. Your physical form torments you because it is flawed in some undefinable way and it’s not your fault it’s just how you were made. This is categorically unfair and it is proof that the universe and unjust and unfair. That there is no god and if there is one he is a sadistic bastard.
Got it all wrong, holy man. I absolutely believe in God… And I absolutely hate the fucker.
There has been research that points to SARS-Cov2 being found in the inner ear and Meniere’s symptoms being caused by the infection. I ran across a few articles on the NIH website discussing this potential problem:
A higher incidence of MD first diagnosis was calculated during COVID-19 pandemic; furthermore, MD patients presented with more vertigo attacks and higher DHI values. These could be associated with the higher state anxiety during COVID-19 pandemic.
The researchers identified ten patients with COVID-19 who developed hearing loss after infection. The hearing loss ranged from mild to profound. Nine of the patients also experienced tinnitus, a ringing or buzzing noise in one or both ears. Six patients experienced vertigo, a sudden spinning sensation. The timing of symptom onset suggested a correlation between COVID-19 infection and hearing loss.
Oh, great. This probably explains the influx of new people to the r/Meniere’s sub looking for answers. I was wondering where all the new traffic was coming from. Welcome, friends. Come on in and have a seat. We’ll prepare a cup of hot green tea and then we can talk a bit. You don’t like tea? I’m sorry. You probably should try learning to do without caffeine though. Why? Oh, we’ll get to that don’t you worry.
Meniere’s has no known cause. If your symptoms can be traced to a cause then you technically don’t have Meniere’s anymore. You’ve got whatever that other thing is called instead. It is the nature of the disease that finding a cause for some group of sufferers removes them from the pool who don’t have an explanation for their symptoms. There is no official procedure for this getting done, it is simply the way these things work out on the ground, where people like you and me and everyone reading this simply have to cope with our daily challenges. It’s all most of us can do.
The bandaid problem is why people reject modern medicine and decry big pharma as creating classes of people who are shackled to thier treatments, instead of finding a cure. They don’t understand that manufacturers largely serve the demands of consumers. Big pharma would love to drive demand the way that conspiracy fantasist have nightmares about, but individuals are fickle and hard to predict. It is very tempting to point to people just wanting an answer and to be made comfortable afterwards as not understanding what could actually be possible with real answers and real cures. But they hurt and they are confused, and they just want to stop hurting. To have that answer.
Doctors are stuffy. Their education and experience lead them to be more confident in their methods and results than they should be, and patients not getting better is a challenge to everything that they believe in. It isn’t their fault, but like everyone else that fails at their goals, they think it is.
There is always room for improvement and this goes double for medicine’s approach to the chronically ill. They need to admit up front that they can’t cure us, yes. However, most people’s ideas about alternative medicine and treatment are ritualistic at best and actively harmful at worst.
My mother insisted I needed to ingest diatomaceous earth for my stomach problems. Her alternative medicine research had lead her to this conclusion. Her research method? Put the treatment in the patient’s hand and measure the strength in that arm. This is a common practice in alternative medicine and that’s just one example. I have dozens of examples of alternative medicine craziness that I’ve just never published stories about.
Nothing that alternative medicine has ever suggested to me, none of the home remedies I’ve ever tried have done more for me than my own dogged trial and error run through every medicine available over the counter. My willingness to try new prescriptions.
I’ll take stuffy doctors over pseudo-science any day. I just change doctors if I feel the one I’m seeing isn’t taking me seriously. For me, dentistry is just this side of quackery anyway. Temporomandibular joint disorder is a thing though. So I will give that diagnosis a wide latitude for the sake of those who find relief in treatment for it.
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.
I have answered several questions over the last few months since the government (outside of Texas) started mandating COVID vaccination and recommending that everyone get a booster shot six months after initial vaccination. Questions from fellow Meniere’s sufferers who are concerned about having a rotational vertigo attack following vaccination. I have a quick answer for all of them. All of you.
It is entirely possible that the stress of any vaccination could trigger a vertigo spell. You should be prepared for this if vertigo is a thing that you have ever experienced. Stress can cause vertigo. Be prepared.
Most vaccinations cause mild vertigo for me. I accept this fact and move on. I get the vaccinations anyway, even with the added vertigo and associated other ill-feelings. I do this because the stress of illness also gives me vertigo.
I get vertigo when I go for a long walk and provoke an allergy attack, of course getting sick gives me vertigo. The vertigo I get from a cold or the flu? That vertigo is worse than what the vaccination makes me suffer through. I’d rather not have that so vaccination is a no-brainer for me. Just looking at the big picture.
He was known as Bunk to friends and family and he carried that nickname all his life. He earned that name fair and square at a very early age by retorting “that’s a load of bunk ” after being told something that he thought was bullshit. Bullshit was the kind of word he would reserve for private reflections on the bunk he encountered, but he knew bullshit when he smelled it all the same. You don’t have to be offensive in your rejection of other’s ideas. It was enough to simply dispute them, and he did that with emphasis.
He was a science man through and through. If you could prove a thing through trial and error, then that thing was a true thing and he stuck with it. His family grew to accept his judgements after awhile. What he said proved to be the thing that needed doing so often that most of them rarely bothered to disagree with him publicly. Sometimes when they encountered problems in their own lives and he wasn’t there to ask, they would even quietly ask themselves “What Would Bunk Do?”
He grew set in his ways, like most of us do as we get older, certain of many things that could not be proven. More and more of them as time went on. Not all experts are wise, and not all wise men are experts. The doctors that advised his last cancer treatment were of the first variety, and neither he nor they thought to look for men of the second variety to double-check their diagnosis. Blind faith in the practitioners of science can kill you just as surely as blind faith in anything else will.
The moral of this story is to always ask for a second opinion if not a third opinion and a forth one if necessary. Do not ask to find an opinion you agree with. Ask to find one that you disagree with, and then figure out why the disagreement exists. New technology can be a weapon when wielded by the wrong hands. Make sure you understand how it works, or at least that the experts you rely on understand it.
Bunk died in 1997 and so was spared from the insanity that has plagued this country he loved so much since that time. Still, I have little doubt that he would have declared today’s COVID vaccine hesitation a load of bunk given the situation we are in today. The science denial has gotten too obvious on its face. Its adherents too strident in their denial. The costs to the country and to the world are too high to not concede that vaccination is the way out of this mess.
I got my COVID booster shot today. I got my first dose as soon as the vaccine was available:
I had my doubts about mRNA vaccines at first. I had even more doubts that a vaccine created by Donald Trump’s (lack of an) administration could possibly create anything that worked.
It wasn’t until Dr. Fauci accepted the vaccine that I knew it was probably safe and that I could accept it for myself. I got second and third and forth opinions, too. Then I got my vaccination and tried to pretend that the world would go back to normal.
Unfortunately the Trumpists whose God-Emperor had decreed that the vaccines be made won’t allow themselves to be vaccinated because he also said the pandemic was a hoax and that the virus was no different than influenza or a cold. This is demonstrably untrue.
That all kinds of other treatments work against this hoax virus better than vaccines do. Why you need a treatment for a hoax is beyond me, but that hasn’t stopped dozens if not hundreds of people from poisoning themselves with the fake treatments that these con artists that work for and off of Trump are selling.
Six months have gone by since I got my first shot, which makes me eligible to get my booster shot.
This is the way immunology works. Some people get break-through infections after being vaccinated. This is what the percentage means when they say that a vaccine is XX% effective. the Pfizer and Moderna vaccines were 90% effective against the SARS2 virus that was circulating a year ago. They are both going to be less effective against the mutations that are currently circulating.
Why? Because the unvaccinated give the virus a chance to bypass the protection a vaccine offers by carrying their mutations near the vaccinated and thereby giving the virus a chance to test itself against the vaccine. Each new infection of a vaccinated person brings us one step closer to a new virus that can bypass the therapies completely, and then we will be back to square one again. Locked in our houses and hoping that something will happen that will release us from this hell that science denial has brought on us.
I’m beginning to doubt that we deserve to be saved from our own stupidity. But I got my booster anyway because there is still a chance that we might beat this thing. If we grow up. If we accept that science is real. If we ensure that the virus can’t spread by making everyone on the planet get their vaccinations.
Don’t tell me you are afraid of needles because you can’t be more afraid of them than I am (see the vaccination article) Don’t tell me that you don’t believe in vaccines or that this is all political bullshit. Science is real and people are really dying. Bunk would say “get your shots” in spite of the fact that some other sciences in today’s world would give him reason to question their veracity. Vaccinations are proven technology and they work if you get them. So get them so we can put this pandemic behind us. Please?
And someone wrote new words to an old hymn, and crowds sang it for the weeks it took to end the rotten regime. “Bring out your dead, there is no need for shame. Show every face and let us hear each name. Better to know, how many we have lost…than lie and say that no such deaths have cost…”
The pandemic has cost more than 793,000 American lives to date and we can’t afford to allow the unvaccinated to continue to help this illness spread and mutate. The vaccine has been cleared for almost all ages, all health conditions and is by far safer than risking the effects of the disease. The Winter holidays are happening as I write this. Prove that you love your family by ensuring their best possible chances of health and prosperity in the new year by being vaccinated and making sure your family is vaccinated.
Tell that uncle or aunt, grandmother, grandfather or even young nieces nephews and cousins. Tell them to get vaccinated or they are not welcome at family gatherings. I’ve listened to dozens of podcasts and read dozens of news stories about how to thread the conflicts of this time we find ourselves in. I don’t understand why opening the conversation with the truth is a bad thing. “Get vaccinated or don’t come to my home. Get vaccinated or I won’t go to your home.” This strikes me as a completely reasonable position to take, especially if you know that there are going to be people who could die from airborne diseases at the family gathering. State the rule clearly and right up front. Claiming any excuse to not be vaccinated is just a load of bunk.