Meniere’s Testing

Back at the dawn of my personal Meniere’s experiences, I had been having what I saw as seasonal afflictions of tinnitus and ear pressure that I treated with Sudafed Non-Drying Sinus, an over the counter allergy medication. 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 (the first time that wasn’t related to drinking far too many shots of liquor) 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’m seeing a new ENT these days and they’ve decided that some essential tests were missed in my original diagnosis. I don’t know why they are questioning the diagnosis now but I’m not hostile to finding an alternative explanation and treatment for my symptoms, either.

The test that they currently want to run is an Electrocochleography (ECOG/ECOCHG) I’ve never had an ECOCHG before and was confused when the subject first came up in the Meniere’s subreddit because they 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. Par for the course.

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. I was curious enough to initially agree to undergo the test when it was suggested. However, I’m beginning to have second thoughts on the subject.

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 this is true in spite of there being any 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 positive results for me aside from just basic rest and exercise. This has to mean something.

Biting the Hand That Feeds You

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.

Human Barometer

This study provides the strongest evidence to date that changes in atmospheric pressure and humidity are associated with symptom exacerbation in MD. 

Otology & Neurotology

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:

barometricpressure.app – Austin – March 17, 2022

Relapse? Resurgence?

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.

reddit

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.

Riddick, Pitch Black

Tell the universe to fuck off and get back up and live anyway. It’s the best answer to the pain.

Meniere’s COVID First Timers

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.

nih.gov

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.

nih.gov

reddit

It’s been well established that COVID has effects on organs throughout the body. It would be surprising if it didn’t also affect eyes and ears:

The virus may also able to get into the body through the eyes, studies suggest—either from eye rubbing and the direct transfer of tears or from respiratory droplets that happen to land on the eye.

Over the pandemic’s first year and a half, accumulated data have established that about 11 percent of people with COVID develop some kind of eye issue, according to a review of multiple studies.

scientificamerican.com

reddit

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.

Continue reading “Meniere’s COVID First Timers”

Medicine & Chronic Illness

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.

reddit.com/r/Menieres

A Cure For What Ails Me

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.

Continue reading “A Cure For What Ails Me”

Sudafed Non-drying Sinus

Ear fullness is one of the first symptoms that most Meniere’s sufferers notice. It was the symptom that drove me to provoke my first vertigo spell back in 1984. I have a specific treatment regimen for ear fullness because I was certain that my symptoms were caused by allergies when this all started. 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 back in 1984ish.

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.

The government finds a thing that it decides it needs to stamp out so that the citizenry will be safe from the indulgences that average people just seem to be drawn to, and it declares war on that thing and drives it underground. First it was opium, then there was marijuana, cocaine, etcetera, etcetera, ad nauseum. The government never asked why its citizens needed to escape the confines of their own intolerable lives, they just kept screwing down the lid on the insane war on drugs, tighter and tighter.

Then the government came for my essential medicines, demonizing them as drugs in the process. All medicines are drugs, just as all drugs are medicines. It is a distinction without a difference. I wrote about the subject on the blog at the time, but there was no stopping the juggernaut once it was in motion. The medicine that I relied on simply disappeared in the drive to end the meth epidemic, the exact same tactic the government has utilized previously and has never been successful before. If you want illegal drugs you can get them, you just have to pay more for them and risk going to jail for having them. The drugs are still out there and they are more attractive to the adults and children who have figured out that all the fun stuff is stuff that they are told that they can’t do.

As I have said many times over the years, we have to stop demonizing mind-altering drugs and recognize why and how mind-altering is the right thing to pursue. Regulate those industries set up to facilitate the exploration that fully half of the population will feel they need to do. Until we do this we will never even understand what it is we think we are fighting in the first place. But that is beside the point of this article.

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.

Booster Vertigo

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.

reddit

Brain Fog 2

I went to see my Otolaryngologist (an Ear, Nose & Throat doctor or ENT) yesterday. I had an emergency work-in appointment for the afternoon. The Wife drove herself to her cardio rehabilitation appointment in the morning, the second time she has driven herself since she had open-heart surgery in July. I’ve been driving her three times a week to that appointment over the months since, and the strain of being there for her over the course of those months has finally taken a toll on me.

Last Wednesday I started experiencing rotational vertigo. It persisted through the day, no matter how hard I tried to tamp it down. I finally gave up and took Xanax to quell it, but then I started feeling nauseous and so had to add a Phenergan to the mix to keep myself from hugging the commode for a few hours while the room continued to spin. Needless to say, I slept the sleep of the dead for about twelve hours.

When I woke up the next morning I could tell that my hearing had altered. I couldn’t say how, but I knew it was different. I was having a hard time focusing too. Muddy thoughts, muddy feelings, muddy existence. I struggled through the day, not feeling myself at all. The Wife got clearance from her heart surgeon so that she could drive herself to her appointment on Friday, just in case; and indeed I was hardly capable of driving on Friday when I woke up. I did manage to get to McDonald’s and back for breakfast, but the habit of ordering coffee with my morning cheeseless McMuffin that I had developed over the course of the few months I had spent chauffeuring the Wife to her rehab appointments finally bit back, and the caffeine from the coffee started up another round of vertigo that lasted into Saturday.

Brain fog on Saturday. Brain fog on Sunday. Barely able to discern what it was I was thinking at any given moment. On the upside, my re-emerged symptoms gave me time to play World of Warcraft for the first time in over a month; but on the downside none of the many other things that I had been putting off for months seemed possible. I was finally able to do some technical work late Sunday night, but that just exposed me to one of my known allergic reactions (dust) which then triggered symptoms again.

At my Monday ENT appointment the audiologist determined that I had lost another 10% of hearing from my left ear. Had it been the right ear, I would have let them give me an intratympanic injection of steroids to try to preserve the hearing. My right ear is my only remaining connection to the normal hearing world. The left ear losing another 10% puts it just under half as effective as a normal ear. Not enough to worry about, from my perspective. I went home with a prescription for oral steroids, which I don’t intend to take.

There is a new weather front rolling into Austin as I type this. I can feel my thoughts slowly draining away as the pressure changes and my tinnitus worsens. It’s time to leash the dog and go for a walk before the storm hits. Maybe I’ll watch a familiar movie or play some more Warcraft tonight. It will be something to look forward to at least. There doesn’t appear to be a lot of writing or thinking for me in the near future.