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.

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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.

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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.

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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

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.

Pain God

Someone that I was chatting with used the phrase pain god to describe the supreme deity that dealt out his pain to him. I was not sure whether to laugh or cry at the phrase pain god. That god? That God you can prove exists, unlike all the other gods people talk about and believe in.

There was this time I was arrested:

I was out late, it was a busy night, the inspection sticker was a year out of date and the cop thought I was giving him sass when he flagged me down. It was two Austin bicycle cops in their ridiculous spandex outfits talking to two or three other cops that they’d just quelled a riot with, just standing on the side of the road. It’s dark, it’s just after midnight on a Friday in downtown Austin.

The Austin Film Festival is going on all over the city. These police were hyped up on adrenaline because of the riot they just broke up and the massive traffic snarls from the city-wide event. One cop spots the out of date sticker as he is scanning vehicles, joking about breaking heads with his buddies. He pulls out his flashlight, walks over to were I’m sitting in traffic and proceeds to harass me about the sticker.

It’s a rural Texas tradition to ignore your state inspection sticker. Who cares? Only the state cares, and rural Texas sneers at Austin and state government in general. Texas government has to enforce the safety laws they enact, and they did this by creating an inspection sticker that you had to jump through separate hoops to get in addition to the hoops you jump through to get your state tags.

When you are driving around on your own ranch or in the small towns that dot the wide expanse of Texas, you never see state actors that can give you crap about the sticker on your windshield. You just see local cops that you probably know by name, and they give you a warning and you go get your stupid sticker that doesn’t take into account the quality of the roads (or lack of roads) that you drive on in your daily life.

Then you move to the big city and suddenly being a scofflaw like everyone else out in the countryside is a problem that could cost you your life. The harassing police officer and three of his buddies pulled me out of the car and proceeded to sit on my back while they cuffed my hands. Then they arrested me and hauled me off to the drunk tank to spend some quality time negotiating with my Pain God.

Piriformis Syndrome causes me to be in constant pain while sitting; and being yanked out of my car and sat on aggravated that little problem. Have you ever seen a drunk tank at a city or county lockup? The one in Austin has concrete floors and baby-blue colored foam benches facing a TV covered in mesh that obscures the screen. The volume is so low on the TV that it is an annoying almost-audible whisper, not unlike the whispering among your fellow prisoners in the drunk tank.

You have to sit there until they process you and you can be released. Sometimes the sitting lasts for days. Sitting, not standing, not moving around at all. Without moving except to go in to the provided toilet room, also painted baby blue like the other walls in the tank. A baby blue that was probably calming some twenty or so years ago when the walls were painted, long before the accumulated puke and other bodily fluids mottled the color into something approaching a childhood nightmare. The toilet was a room that you’d rather not go into in the first place.

So I sat there. I sat unmoving in that one place for about 14 hours, in excruciating pain the entire time I was there. No one in authority was even the slightest bit interested in my pain or helping me with it. In extremis, I decided to take a crash course on meditating. I would meditate on the qualia of my pain all through those long hours of torture.

Staring at the floor through my tented fingers, elbows braced on knees, I contemplated the pain. I didn’t drink anything, didn’t use the restroom. I couldn’t have used the restroom even if I had needed to go desperately. It would have taken a catheter to get any body fluids out of me, I was that paranoid of being ambushed. Of being watched. I just sat and focused on the pain. I traced it up my leg to my lower back and then I became one with the agony. I inflicted my pain and endured my pain and I was my pain.

When The Wife figured out I had been arrested… As I mention in the linked article, I was where I was with a car in the state that one was in because I needed to pick her up and would never have been downtown in the first place without her need to be rescued. She was never rescued because the police decided she didn’t need rescuing. It was more important to punish the scofflaw for his out of date inspection sticker.

That one phone call thing? It’s complete bullshit in most of Texas. You can call if you’re calling a landline. If you’re calling a cellphone you have to give the private contractor that provides phone service to the jail a credit card number to charge for the call, and you better have that number memorized because you don’t have your wallet in jail to get access to the card itself. If you’ve done that homework ahead of time, you can call. If you haven’t done that homework you don’t get to make your one phone call.

So when The Wife finally got home and found I wasn’t there, when she figured out that my cellphone still working meant I probably wasn’t dead in a ditch somewhere. When she remembered that there had been a riot downtown that night and wondered if I had been caught up in that, she came down to the jail and rescued me before I died of renal failure. That is, she came to rescue me after she had gotten a ride back downtown to get her car the next day, there being no way to get anywhere or do anything until morning the next day.

I think I was probably more glad to see her that morning than I had ever been before or since. So yeah. I’ve met the Pain God. I was him for a day. I would prefer not to be him again.

if you are not worthy of trust as police, as leaders, as the press, then you must be held to account by those whose confidence you have betrayed.

Stonekettle

Warning Signs of Vertigo?

Doc diagnosed me with cervical vertigo

I had to look up Cervical Vertigo. I didn’t find an article I liked until I went looking on the VeDA website. I like the tone of that article. In all my time of suffering, even with my long history of vehicular accidents, no one even mentioned that neck posture could be a cause of my symptoms.

I was surprised by this finding. More surprised than you might be reading this here. I tend to think I have everything that I read about. The Wife says this makes me a hypochondriac, I think this means that I’m an empathetic person. I’m going to stick with my assessment of the situation.

The questioner went on to ask about warning signs of oncoming vertigo. That is an interesting question, in and of itself. There aren’t always warning signs. Sometimes you turn your head the wrong way to fast. Sometimes you look out the side window of the car and the sympathetic parts of your brain wiring turn that motion into rotational vertigo. Sometimes watching a movie can set it off:

Sometimes there are warning signs. Visual migraines, or a change in perception of the light around me is one I’ve started noticing lately. A change in tinnitus pitch or intensity almost always signals something more severe is in the wings. I almost always take something when I notice this. Being proactive in treatment is how you avoid a full-blown attack. Historically I would notice a taste in the mouth. A metallic or saccharine flavor. If I noticed that I would also take something, generally something more dramatic than the Guaifenesin that I would take for changes in my tinnitus. Something like Xanax, which I try not to take too often. It is too habit forming to indulge in needlessly.

In the end, paying attention to what your body is telling you is the only way to be on top of your symptoms and preventing the worst of them. I wish all of you luck in your own treatment regimens.

reddit

Meniere’s Severity?

Someone over on Reddit/Meniere’s asked the question:

Does severity increase over time?

Since people are getting a diagnosis earlier these days, the symptoms will continue to manifest in greater severity until you reach whatever plateau your symptoms will top out at; unless you find a treatment that sends Meniere’s into remission. Makes it seem to disappear, like a cancer sometimes does.

Had I been diagnosed back in the 1980’s when my symptoms first appeared, I would have had a diagnosis for a disease that slowly got worse over the next twenty years until it turned me into a couch dweller that suffered vertigo near-constantly, for years. So, yes, the severity can increase over time. That doesn’t mean that it will increase.

As it is, I kick myself for not being honest with the doctors and demanding some kind of a diagnosis sooner. Had I started betahistine back in the eighties (the treatment that seems to work for me now) I might have been able to continue working far longer. The symptoms probably wouldn’t have been as severe. The plateau could have been much lower.

With remission, the symptoms disappear for years at a time. The people lucky enough to experience that bliss would tell you Meniere’s doesn’t get more severe. I would have liked to have had their experience, rather than mine. Newly diagnosed people may well have that experience. I hope that they do.