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

I’m still seeing a lot of questions about ear fullness on Meniere’s Reddit.

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.

Continue reading “Sudafed Non-drying Sinus”

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.

Ear Fullness

Ear fullness is a common complaint among Meniere’s sufferers. It is one of the key indicators of Meniere’s along with a specific kind of hearing loss and vertigo attacks. What it feels like is hard to describe.

If you have ever flown in a plane or gone up in a tall building, climbed a mountain or gone down to the seashore from a high elevation, you have likely had a feeling of pressure inside your head. A pressure that is directly behind the ear canal. Frequent travelers know the feeling and what to do about it. Pulling on an earlobe, working the temporomandibular joint (TMJ) by shifting the jaw back and forth until the ear pops, chewing gum, etc. There are many ways to get the canals behind your ear, the eustachian tubes, to clear so that the pressure in the inner ear becomes equal to the pressure on the outside of your ear and the discomfort goes away.

Ear fullness is like that, but not like that. Imagine that kind of discomfort elevated to a level of pain that is very hard to ignore, and then imagine that you can’t get the pain that feels like it is right behind your eardrum to go away no matter how hard you chew gum, work your jaw, etc. This pain goes on for days, sometimes for weeks.

You can’t get the pain to go away, the pressure to equalize, because the pain doesn’t come from a pressure imbalance behind the eardrum. It comes from the fluid-filled chambers of the inner ear itself, the cochlea, and the fluid imbalance that produces all the other symptoms of Meniere’s disease.

The first time the ear fullness presented itself, I sat in the shower for an hour or more trying to make what I thought was a plugged eustachian tube clear itself. Instead I induced a multi-day vertigo spell by rupturing one of the vessels in the cochlea of my left ear. As you can probably imagine, I don’t recommend that form of treatment.

The next time ear fullness presented itself a few years later, I had to resist the temptation to gouge the ear out with a sharp implement. I understandably didn’t want to look like Vincent Van Gogh, who might very well have suffered from a similar affliction. I had access to a sauna at the time and I spent far too many hours sitting in it just hoping that the pain would ease off. Ease off just a little.

The pressure never did ease off. The sauna did do wonders for clearing my sinuses, though.

There is no known way to reduce this pressure in the ear. It is possible that early treatment with intratympanic injections of steroids can reduce the pressure and prevent hearing loss in a newly affected ear, but it is not a universally successful treatment, and it carries potential hazards that make it an undesirable treatment for routine incidents of pain. Hazards like permanent deafness and severe instances of vertigo.

What long term treatment of the symptom looks like remains an unanswered question for me. I haven’t found anything that will work long term for ear pressure aside from surgery. Endolymphatic shunt surgery should work to ease the pressure and not destroy the hearing mechanism but I need to look into that more than I have before I decide whether it is worth pursuing. In the meantime I try to limit my self-medicating doses to really bad days and to not let the symptoms get so bad that they reduce my quality of life. It’s a balancing act.

I’ve been having ear pressure problems myself lately. I took a dose of guaifenesin/pseudoephedrine yesterday. The pressure is down to manageable levels today but I took another dose anyway. If tomorrow is the same I’ll stop for a few days and see what happens next. This is what self-managed chronic illness is like.

I did a little shuffling of the last few paragraphs of this article and the Sudafed article. I’m still pissed about them coming after my allergy medications.