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.
Three days ago I looked at the front page of this blog. The last article written is still the February 2016 primary piece Who Gives a Shit About Iowa? Have I not written anything since then? WTF?
I’ve had several interesting conversations since writing that piece. I’ve had two or three good ideas (one of which will be applied to the next chapter of EPHN if I ever get around to completing the one I’m working on) None of the stuff I come up with gets beyond notes phase. None of it gets beyond notes phase because essentially, I have no brain. The problem I’m having is one of the symptoms of Meniere’s, one that half the medical community says isn’t real. Those of us who have Meniere’s know differently. We call it brain fog. I’m struggling with it right now, so please bear with me.
I’m trying to write today even though I have trouble forming basic thoughts because this is yet another part of the disease that plagues my every moment, and I don’t really bother to talk about it to anyone outside the wife, the daughter and the son.
Brain fog. It’s like the insides of my head are full of cotton wool. Like the frontal lobes of my brain (had to look that up, sadly) have electrical current running through them, and conscious thought is elusive. Just beyond reach. Most frequently brought on by vertigo attacks, it can show up without notice any time the pressure in the ears change, the tinnitus changes, the headaches start or stop. You name it. I think I had a vertigo attack while sleeping last night because I went to bed early and dizzy. I woke up the drooling genius searching for keys on his keyboard that I am now.
When I woke up seven hours ago I thought about writing this piece. Clever ideas about what to say, ideas about how to express myself floated in one side of my head and out the other. They are lost to me now. I keep hearing the voice of the antagonist from Spock’s Brain“I put the teacher on my head” a frequent joke around the house when one of us is forgetful.
But it really isn’t a joke when I feel this way. Ah, to have access to a device that would put the knowledge back in my head. To restore the mental acuity that I usually take for granted but is so lacking now (took a full 30 seconds to come up with the word acuity) I’m torn between stomping my feet in mock anger “brain and brain, what is brain?” or just going with the flow and embracing the silence.
The above is another inside joke around this house, as frequently referenced as Spock’s Brain. At least Earth Girls are Easy was meant to be funny. If only I was blond and female I could make vapid work for me. Guys without brains or muscle aren’t of much use. The Wife is blond and generally smarter than me when I’m like this. Some would tell you she is always smarter. Can’t argue with that right now.
So I’m going back to my marathon of Better Call Saul. I’ve been meaning to watch that anyway, and it is complex enough that I actually have to watch it or I’ll miss something, unlike most television. Finished the Expanse yesterday and there won’t be new Walking Dead till Sunday. I’ll find something else to watch when I finish that. Hopefully this fog will pass soon and I’ll have something more substantive to say.
All about Meniere’s Disease. Updated periodically.
There is a page on the blog that discusses the subject of Meniere’s in a more leisurely fashion than this article about symptoms and treatments is going to allow. Please click on this link if you feel like you want to know more about the subject than this article for fellow sufferers is going to tell you.
I want to cut through the noise of what everyone else is telling you about their opinions and their magic elixirs. I’m just going tell you about the experience I have with Meniere’s and how I deal with treatment for myself, trying to follow the best experimental standards that a suffering individual can manage. With any luck you’ll recognize symptoms and treatment options that appeal to you while reading this.
There are four main symptoms that point towards the possibility of Meniere’s Disease. They are:
Only an otolaryngologist (ENT) can diagnose you with Meniere’s. Go see one if you haven’t yet. Go see a second one if you have and you still have questions. A good diagnostician will want to run many different tests to rule out other causes. I’ll mention a few of them next.
The doctor will likely order an MRI or magnetic resonance imaging test first. That is, if they don’t go straight in and start with hearing test that produces an audiogram. A lot of ENT’s have audiologists in-house and just conduct hearing tests as part of the routine for people with hearing complaints. The MRI will tell them if there is anything structurally wrong with the brain or if there is anything noticeable about the shape of your skull or inner ear that might signal a problem.
If the MRI doesn’t show anything you will occasionally be asked to sit for an electroencephalography (EEG, not to be confused with ECoG) brainwave test, just to verify normal brain function. The MRI and EEG together rule out brain-caused symptoms.
You will be asked to go through some form of videonystagmography (VNG) test. This test can take many forms. If they make you look to the left and right at an object, that’s a VNG test. The doctor may also want to do caloric stimulation and/or electronystagmography to see if the nystagmus shows up under nerve stimulation. Caloric stimulation can induce vertigo so just be prepared for that. There is a new test called Vestibular evoked myogenic potential (VEMP) that they may also utilize. It seems pretty harmless but would generate the same kind of information that caloric stimulation will give them, but do it directly with sounds in the ear.
Rumor has it there is another new test. I’d never heard of it before the 2021 upsurge in traffic on r/Menieres. This one is called electrocochleography (ECochG) I kept wondering how so many people newly diagnosed with Meniere’s had their skulls opened so that they could have electrodes placed on their brains, what an ECoG is. The ECochG if done right is only slightly less invasive than opening up the skull and placing electrodes on the brain. I doubt all the people claiming to have had an ECoG when they meant ECochG had the procedure described as being the standard test. They probably had the probe in the ear canal variation. The test is probably for the same signal that caloric stimulation tests for. Most doctors will also probably not have the new test yet, especially if it duplicates the results that can be obtained by electronystagmography.
I’ve endured both types of caloric stimulation including once with the headband mentioned in the electronystagmography article. These tests demonstrate a physical connection to the symptoms you are having. None of them will tell you that you have Meniere’s. They will tell the doctors that the symptoms you are complaining of are real, and that is all the tests can show.
None of these tests will rule out Autoimmune Inner Ear Disease, which is treatable and causes symptoms similar to Meniere’s disease. That takes a blood test. You can get more blood tests to check for related autoimmune causes, but those causes are not treatable yet or even necessarily positively linked to Meniere’s-like symptoms.
Do not despair yet. Your symptoms can also be caused by Benign Paroxysmal Positional Vertigo, which is very easily treated. A good ENT will do a quick movement test to check for that while you are in their office. There is also the possibility that you have a misalignment of the jaw. A temporomandibular joint disorder can also cause similar vertigo symptoms.
If you’ve got all those symptoms, explored all those other options, seen two ENTs and nobody can tell you what you have then I’m sorry. The rest of this article is for you.
I haven’t done a thorough reporting of symptoms at any point during the life of this blog. I haven’t talked much about the disease at all since I first started writing a public diary back in 2005, and that first entry was a compilation of entries made on other forums over the course of several years. I avoid thinking about my disability, a feeling most sufferers probably share. It’s uncomfortable to acknowledge such a fundamental difference from everyone else.
Starting in the year 2002, I began to be subject to regular bouts of rotational vertigo that hit me without warning. These weren’t my first encounters with this particular symptom, but it was the first time that a discernable pattern emerged from the noise of my everyday life. My first vertigo attack occurred as a single incident many years earlier, probably sometime in 1984. In that instance I triggered the vertigo myself by accident while trying to clear the pressure in my left ear. I had just started noticing this discomfort, this feeling that my inner ear was swelling up, pressing against the skull from inside the skull, as far as I could tell. I was sitting in the shower in an apartment that I shared with a fellow draftsman. Sitting with my painful ear directly under the hot stream of water in a desperate attempt to make what I thought was a blockage in the ear pass down through the eustachian tube. When the pressure finally eased in the ear, the blockage apparently cleared, I found that I was lying down in the shower and so dizzy that I couldn’t walk. I crawled to the bed and got in it, afraid that I might have done myself permanent damage. When I woke up the next day I felt tired but no worse for wear overall. Best of all the ear pressure seemed to be gone.
Pressure in the inner ear is generally referred to as ear fullness by sufferers, and it is frequently the first symptom that most sufferers experience, usually accompanied with tinnitus. It was my first symptom, as I detail in the Meniere’s story page.
When I first started having the subsequent and almost regular vertigo spells, they seemed to be related to my seasonal allergies and those times of the year (spring and fall) when my allergies had always bugged me. And when I say always, I mean always. As far back as I can remember, I have had allergies. I was treated with allergy shots back in the early seventies. I had recurring sinus and ear infections because of these allergies when I was a child. Allergies that I started associating with the annoying pressure in the ear. Distortion of the hearing in the ear that made enjoying any kind of music nearly impossible for weeks and then months at a time. All of these symptoms progressed slowly from year to year. Each Spring longer spans without music, each Fall more trips to the doctor demanding some kind of treatment for the discomfort. And then, as I said, came the regular bouts of vertigo in 2002.
As time progressed the vertigo spells became more generalized and could be brought on by high pressure weather, or just by turning my head the wrong way. These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and frequently caused me to miss two days of work. Towards the end of my work life I was getting vertigo about once a week, making my average work week 3 days long. This kind of attendance pattern does not produce enough work for most employers. I was definitely not working enough to satisfy the architect I was working for then. Consequently I was fired from my last job for being sick too much, even though I accepted the job with the stipulation that I was frequently ill and had only been on the job for eight months.
It was at that low point, unemployed, cash strapped and suffering near-constant vertigo that I sought and was granted disability. Now that I am on disability and free to manage stress for myself, I count myself lucky if I can go a month or two without vertigo. Some years are better than that, some years are worse. You play the hand you are dealt, a mantra I’ve relied on all my life. This is what I have to work with, I will make the best of it that I can.
However, the vertigo is just the most visible symptom of the disease. I have all of the usual symptoms. Almost as debilitating as the vertigo is the constant tinnitus, a ringing/whining/whistling in the ears which comes close to drowning out normal conversation and makes concentration very difficult. The tinnitus never stops. Sometimes it is loud, sometimes it is soft, and sometimes it causes the affected ear to amplify what little sound it hears, a condition known as hyperacusis, making even the smallest of sounds painful and sending me into a room by myself so that I can keep things as quiet as possible.
Then there is the pressure in the ear that I mentioned previously. Like the tinnitus this varies in discomfort, sometimes a nagging ache, other times a stabbing pain as if some fluid containing vessel in the ear is about to burst. The pressure in the ear is often a precursor to vertigo. If I get a metallic taste in the mouth with a sudden surge of pressure, I hit the medication immediately. Paying attention to how I’m feeling on any given day is how I’ve managed to keep the vertigo to a minimum through the years of disability.
I have slight dizziness and disorientation almost constantly. (constant symptoms carry their own associated risks) Disorientation brings on the brain fog on bad days, more pronounced after vertigo attacks. There are good days and bad days, but turning corners always carries the risk of colliding with objects I know are there and thought I would miss. The last symptom that I can tie to Meniere’s is a seriously vicious migraine headache. In 2014 I was getting them about every 4 days, but a trip to the GP where I finally admitted the headaches were that frequent got me a daily script that has reduced the migraines to something I only enjoy during allergy seasons.
On February 9th of 2018 at 6:30 in the morning I went bilateral with Meniere’s. Bilateral Meniere’s means I have identifiable hearing loss in both ears. I know the exact time that I went bilateral because that was the moment when my mother was dying in my arms. Trauma? Stress? Yeah, there was a bit of that. Two of my biggest triggers for bringing on the symptoms of Meniere’s. When I went to see the ENT later that week, she wanted to make sure that what was occurring was not something they could treat, so I went to visit a rheumatologist to insure that what I was suffering from was not autoimmune inner ear disease. A few blood tests later and that was ruled out. Sadly, I still have Meniere’s. Damn.
Going bilateral has meant that I have more frequent bouts of vertigo again just as I did when I was first diagnosed back in 2003. The years of experience with this disease have made the trials of bilateral Meniere’s easier to deal with, but the symptoms take their toll no matter how well you can cope with them.
My ENT informed me in 2015 that the hearing in my first affected ear (left ear) is about half of what it should be and is still getting worse. That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms. There are a couple of interventions available to me, but neither of them offer better than 60% chance of long-term relief, so I’m not jumping up and down to have any of them done. Gentamicin injection into the cochlea is the procedure he wanted me to do. I will not be doing this procedure unless the vertigo gets worse; as in, as bad as it was when I was a working stiff. There is also a surgical procedure or two that will interrupt the signals from the affected ear. Those procedures will make you completely deaf in one ear, and the Gentamicin can also make you deaf if not done properly. This is too much risk for too little reward based on the situation I am currently in.
Additionally, going bilateral ruled out doing any of these procedures unless deemed medically necessary. The chance of going completely deaf is a risk that you want to avoid if at all possible and with both ears affected this becomes a possible outcome that you should work to avoid. Going bilateral also increased the disorientation, so I started seeing a therapist that specialized in treating that specific problem:
I’ve only had two surgeries in my life. When I was a child I had my tonsils removed. It was a common practice back then (1973) for children having extreme allergic reactions and associated throat swelling to have their tonsils taken out. I wasn’t even the only one in my class in the small town I grew up in to have had this procedure performed on them. Most recently (2003) I had a procedure done that corrected a deviated septum and reduced the turbinates in the sinuses. Since allergies were so bad for me as a child, and allergies seemed to be a big trigger early on in the progression of my Meniere’s, it seemed like a logical step to see if fixing the breathing problems might not alleviate the Meniere’s symptoms. Sadly this has not turned out to be the case, but has apparently reduced my allergies and the number of sinus infections I have to suffer through. I will never forget the first time I went swimming after the surgery and got water in my sinuses. Before the surgery it was a major struggle to get the sinuses to clear. After the surgery I just tipped my head forward and the water ran out. “so that’s what working sinuses are like!” I exclaimed to the disgust of all present.
There are many behavioral approaches to treating Meniere’s. This is especially true since there are no cures and no known causes for the disease. This means that most sufferers cobble together a mish-mash of dieting and homemade concoctions that they swear by. If it eases their symptoms then it really doesn’t matter to me if their relief is scientifically verifiable or not. For me personally, I like the agnostic approach of a proper scientist.
I have tried most of the alternative medical treatments that I didn’t deem outright dangerous to try. Essential oils. Myriads of supplements. I tried far too many different things to name here, even if I could remember them all, and I’m pretty sure I can’t. Mom was into alternative medicine and she would show up every few months with some new thing or other for me to try. I dutifully tried them all, to no real effect. It was at about this time that I started to question why I took things like daily vitamins. One by one I discontinued the various supplements I was taking until I had discarded them all as producing no noticeable effect. I even stopped taking vitamins for about two years until I started developing unusual skin problems. I don’t know which vitamin I’m low on, but chewing a daily gummy does seem to keep the skin working like it is supposed to, so I keep taking them. One of these days I’ll remember to ask the dermatologist which vitamin I might be needing, then the vitamins will be one more prescription, just like everything else I take.
I will mention John of Ohio (JOH) here, although I may move the subject to its own article someday if I feel that it is warranted. JOH, for those who haven’t run across it, is a particular supplement/dietary regimen that many Menierians swear by. I’m not one of those people. As the paragraph above this should illustrate, I don’t put stock in supplements. In the US, supplements are not subject to regulation, and so consequently there is no verification that whatever ingredient is claimed to be in whatever it is they are selling you is actually in there. So taking any supplement can be a wasted effort if not an active harm. Use them with caution.
But the JOH regimen specifies that you have to take exactly what it says, and you have to do it as a routine. The insistence that the regimen only works if you follow it precisely is a hallmark of snake-oil salesmen, and was consequently a red flag for me. I have tried l-lysine, even mega doses of l-lysine and vitamin C. I’ve taken so much vitamin C in the past that I have given myself diarrhea, a welcome occurrence for someone who has had Irritable Bowel Syndrome (IBS-C. C being constipation) for pretty much their entire life and not realized it. The various parts of the regimen tried separately produced no noticable results for me (other than the diarrhea) so I saw little reason to take the time to go through the ritual of doing all of them exactly as prescribed by JOH. Consequently I can’t rule out its effectiveness, but I’ll stick to what works for me anyway.
Probably the single most beneficial behavioral thing I’ve done aside from sleeping more and getting the CPAP is I stopped sleeping on a flat surface. I always try to sleep with my head elevated. A touring musician who is a fellow sufferer (I wish I could remember her name) suggested sleeping with the head elevated because fluids tend to pool in low areas of the body. I don’t know how true that is, but it does seem to help. I tried wedging the head of the bed up, and that seemed to produce even better results than just stacking up pillows. Unfortunately the wife hates the heads-up sleep position, so I begged an adjustable bed from a friend who had one in storage. I’ve been sleeping on that bed ever since, and I credit it with reducing most of the ear fullness that I used to experience while trying to sleep. If you don’t believe me, try it. It really can help.
I walk everyday, or as close to everyday as I can manage, regular exercise (sadly) being another facet of stress reduction. Walking puts me afoul of my allergies for almost anything that grows, so I have to do some of it indoors on a treadmill. I prefer to be outside whenever I can manage it, so allergy medications are something I tend to take frequently. My asthma treatments have replaced some of my allergy treatments, having now be diagnosed as a borderline asthmatic. These are the kinds of things you discover as an adult when your parents didn’t believe in doctors.
There doesn’t appear to be any real treatments for the tinnitus. Mostly it is a matter of enduring the constant sound which does contribute to the brain fog, or masking the sound with other sounds. I find Rainymood, suggested by a redditer, works best for days when the tinnitus is incredibly annoying. Most other days I just endure the constant barrage. You can train yourself to ignore the sounds using various methods that you may or may not find useful. I’ve never stumbled across anything that worked for me, and there have been many promises made over the years to reduce your tinnitus! promises that remain unfulfilled.
I have the least to say about tinnitus, I think, because hearing loss and the accompanying tinnitus stole my enjoyment of music from me. When the songs stopped sounding good in my ears, I simply stopped listening to them. I think that has been one of the hardest things to cope with, almost as hard as not being able to work. Music defined my life, as it seems to do for most people. My music appreciation stopped in 1999. I can’t recall a single new artist that I have followed since Prince. That, in music years, is several lifetimes.
I was already avoiding salt because of a hypertension diagnosis, and my hypertension medication contains a diuretic which was the first medication suggested by my ENT. Salt can increase blood pressure which increases stress. Stress is a major trigger. Caffeine is something I try to avoid because it disturbs my sleep, not just because it makes me dizzy. Caffeine can also increase stress. Anything dietary that causes stress can cause Meniere’s symptoms, so just avoiding things you think cause you stress can make your symptoms seem less noticeable. Don’t rock the boat and it won’t capsize. this, as usual, is easier said than done.
Other than avoiding salt and caffeine as much as possible, I don’t really follow any other dietary restrictions or fads. I live in the South so everything comes fried, which I’m then compelled to avoid because of cholesterol concerns (hypertension) the resultant impact of culture and health problems produces a tofu eater in the land of chicken fried steak, but then all of Austin is a little bit weird like that.
On top of the diuretic/hypertension medication mentioned previously, I take a variety of additional drugs both prescription and over the counter. If the affected ear is bothering me and I don’t have vertigo yet, I take pseudoephedrine & guaifenesin together (an ode to my magical green gel caps. -ed.) this combination is usually effective at reducing ear fullness. If my allergies are acting up, I add fexofenadine or loratadine. As of 2018 I have a prescription for azelastine that I find works wonders for the allergies. Using azelastine daily has caused me to almost stop taking pseudoephedrine, something the cardiologist has been trying to get me off of for years. If the migraine is kicking in, I take prescription doses of ibuprofen and acetaminophen together. A daily prescription for amitriptyline has removed my need of other painkillers almost completely. I only take my megadoses of painkillers and allergy medication now on the really bad days, days when I’ve done something stupid like carry 40 lbs. of dog food or gone for a walk on a high allergy day without a mask on.
During the exploratory phase of coping with this condition, I convinced my doctor to prescribe a round of acyclovir just to see if it had any effect. I have suffered from lip sores since birth (the signature symptom of a herpes infection) so I figured that acyclovir was worth trying. Acyclovir had no effect on any of my Meniere’s symptoms, so I discontinued using it after the original course of treatment. The lip sores have been absent for years until just last week (August 2019) when I had a flare-up. So maybe the acyclovir worked for those but nothing else.
Vertigo, the most debilitating symptom, deserves it’s own heading. This is a key point in understanding Meniere’s and its treatment; nearly all the procedures recommended by doctors are designed to stop the vertigo. The vertigo is thought to originate within the labyrinth of the inner ear, so most treatments are centered around that part of the body. From the most drastic to the least invasive, nearly all of the surgical treatments silence the affected ear, permanently. Some of the less invasive will leave you with some hearing in the ear, but their efficacy is highly questionable.
Endolymphatic shunt surgery should work to ease ear pressure and not destroy the hearing mechanism and might even prevent rotational vertigo, but I need to look into that more than I have before I decide whether it is worth pursuing.
Vertigo treatment for me started with meclizine (Dramamine) This is what I took in 2003 when I was first diagnosed. I have stopped taking this medication because I could still feel the vertigo while taking it, which hyped up my anxiety about the symptom. If I feel vertigo starting and if I can’t make it recede by focusing on a still object, I take a Xanax. If I’m having an active vertigo attack and it has already made me nauseous, I take promethazine. I haven’t had much need for promethazine since being given a prescription for Xanax because it seems to relieve the anxiety of the attack, causing the sensation of spinning to recede, which keeps the nausea at bay. I stopped taking Valium because it stopped making me sleep. Also, the government doesn’t want someone to have prescriptions for both Xanax and Valium anymore. Too dangerous. Most of those drugs require prescriptions in the US and are controlled substances which makes them much harder to get.
Flying is the fun part. I have to be medicated to fly. I used to take promethazine and Valium just to be able to board a plane and not panic. The last few times the Xanax alone has been enough of a treatment to keep the vertigo at bay. I have to have supervision while taking this medication because Xanax makes me a bit fearless (anxiety reducer) while not actually giving me any better balance. I’m just an accident waiting to happen then, but at least I can sit through a flight without freaking out at every movement, getting queasy and vertiginous.
I have another secret weapon for managing flying. Cinnamon chewing gum. I always travel with a pack of gum. I have always chewed gum while flying since I first went up in a Cessna with my dad as a child. If your ears bother you because of pressure, chew gum. Far more useful than earplugs.
I heard about Serc or Betahistine from Menierians in online forums years ago. This is a drug commonly prescribed for dizziness and specifically prescribed for Meniere’s disease in the UK and a good portion of Europe. I was initially dubious that the drug would have any effect since it had been trialed in the US previously and found to be no better than placebo at preventing Meniere’s symptoms.
In the summer of 2017 my ENT’s office took on a new doctor and I was referred to her for my annual Meniere’s symptom review and prescription renewal. She suggested a trial of betahistine during my first consultation with her. As I established earlier in the text, I don’t reject any suggested treatment out of hand (any treatment that isn’t damaging or potentially life threatening. I could tell you stories but I won’t. Not here, anyway) I decided to give Betahistine a try. The drug is not available in the US under its European brand name, Serc. It has to be compounded, and as a consequence of this it isn’t on the average health insurance formulary. This makes betahistine more expensive to take and harder to get, but at least it was legal for me to try it.
I started off by taking 8 mg of betahistine three times a day. Three months later we bumped the dosage up to 16 mg three times a day and I have been taking the same dosage ever since. While I can’t say it is doing everything I had hoped for, it is doing something. My head seems clearer, my concentration sharper. The tinnitus continues unabated but the ear fullness is less noticeable. I still get occasional bouts of vertigo but they seem to last for shorter durations.
Intratympanic Steroid Injection
In the Spring of 2018 I started getting steroid injections in my ears. Most frequently this has been the left ear, although I have had injections in both of them over the past nine months. Intratympanic injections were originally suggested as a possible remedy to the hearing loss in the right ear immediately following the diagnosis of bilateral Meniere’s earlier that Winter. The hearing test following the right ear injection didn’t show any major improvement, but I was impressed with the pressure relief that I got from the injection in the right ear. I was so impressed that I insisted the doctor inject the left ear just to see if it produced any noticeable effect there. It did, and I have had her inject the ear a few more times since then due to repeated battles with vertigo and/or pressure in the ear.
My last injection (December 28th, 2018) illustrated the downside of this treatment for me in pretty stark terms. You are not supposed to swallow if you can help it for the first few hours after getting an injection. You shouldn’t attempt to pop your ears or force air into your eustachian tubes (this is a frequent habit with Menierians when they are trying to get the pressure off of an affected ear) for several days, and really shouldn’t even use straws or swallow hard for that period of time.
Well, I screwed that up about ten hours after the injection and somehow got air up in the ear and that caused the ear to pop, pulling the injected fluid in the middle ear down through the Eustachian tube. What followed was about three days of bedridden vertigo and constant medication. I was feeling normal again a week later, at least what passes for normal these days. The pressure remained off the ear for awhile but still returns periodically.
The world doesn’t turn inside out when I put pressure on the eardrum from outside anymore. So the injection did what I wanted it to do, even though I screwed up the post-treatment regimen. I haven’t noticed that symptom since that last injection and the subsequent return to a dose Guaifenesin when I notice the ear pressure.
I had the ENT puzzled with that symptom, something I’d never noticed before myself. When the left ear is acting up and I don’t self-medicate, I can stick my finger in the ear and wiggle it, and my body feels like it changes shape. It feels like my right shoulder is getting longer and my right leg/hip is moving. It’s the weirdest damned thing I’ve ever felt, and I’ve only started noticing it since altering my allergy regimen.
Guaifenesin when the pressure increases, less invasive than putting a tube in the eardrum just to see if that took the pressure off the eardrum. That was the other suggestion offered, even though the eardrum does not appear to be under pressure. I may try that treatment at some point in the future. It is reversible, so isn’t something I will have to live with forever once done. Test and retest. Check and verify. It gets tedious, but it’s the only way to know for certain what works and what doesn’t.
Don’t snicker there in the back. I can hear you. Marijuana has some kind of effect on the fluids inside the eye, which is why Glaucoma was the only disease that had treatment with Marijuana approved before the latest moves to legalize it as a useful drug. Since it is a fluidic imbalance in the inner ear that is the suspected culprit for Meniere’s symptoms, it is quite plausible that Marijuana will help some people with those symptoms. I have tried it. It did nothing for me other than get me high, just like I remembered it doing when I was a teenager. I no longer want to be high, I just want to feel normal. The mantra of all chronic illness sufferers.
A Word of Caution. A Word of Hope.
I make a lot of drug recommendations in this article. Having suggested drugs for various treatments, I really should also offer the following caution; these drugs all have different effects for different people, and this fact can not be overstressed. These medicines work for me and I’m thankful that they do. Don’t treat your conditions without at least consulting with a physician first. I say this not only out of personal concern for sufferers, but also because documenting treatments and their effects is how science-based medicine is achieved. If treatments are not tested and documented, then there is no record of what has worked previously that others can consult.
Don’t take more of a medication than your physician prescribes just to see if that has a noticeable effect. I’ve had several sufferers over the years insist that what I needed was to take more of whatever it was they insisted worked for them. Prescription doses are set at the levels they are for good reasons. The difference between a medicine and a lethal poison usually comes down to dosage. Water can kill you if you drink too much of it. More of something is frequently not the answer to the problems that ail you.
Treating Meniere’s means finding your triggers and then doing your best to avoid them. My triggers seem to be stress or allergy related. It will be a trial and error process finding what will work for you. Here’s hoping it takes less than a decade for you to find your feet again. It will happen, it just takes time. If you find that a drug I suggest doesn’t work for you, try a different one. Keep working at it till you find a solution that works for you and then stick to it. The important part is to not give up.
I used to consult my personal oracle when I thought about trying something new. My oracle was the Meniere’s Disease Information Center. Unfortunately my oracle went offline several years ago. Archive.org has it preserved in amber for new visitors to see, but it isn’t the same as being able to track treatment trends in real time.
Reading through those preserved pages, it becomes clear that most sufferers will try anything to stop the vertigo. Page after page of the most far-fetched ideas about what might stop the vertigo.
If you’ve ever been afflicted with rotational vertigo and can imagine that sensation continuing for hours and days at a time, you would understand why sufferers are willing to try anything to make it stop. Try anything, even drugging themselves to unconsciousness for days at a time to avoid the symptom. Unconsciousness is a mercy when consciousness is a never-ending torment of spinning. Spinning without end. Don’t let this disease kill you. Don’t let it win. Don’t hide from life for fear of that next attack.
If you are reading this because you to have Meniere’s, then I am truly sorry. I have often said that I wouldn’t wish this disease on my worst enemy. Being disabled has made me question many of the beliefs that got me through life before I was struck down by Meniere’s. Most of the things that I thought were real as a healthy person turned out to be delusion once I became chronically ill. Problems that I thought were paramount when I was healthy now seem trivial. Services that I complained about paying for are now essential to me and my family’s survival. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting access to this kind of insight. Ways that don’t rob you of hope, of purpose. What can feel like forever, from the inside.
I miss architecture and drafting nearly every day. Those were my purposes in life prior to this debilitating disease. More than a decade later, I still have dreams involving architecture. Admittedly, the last dream involved all my drafting tools being ruined because they had been piled in a trailer for ten years, but still the dreams persist. I have them almost nightly, reliving events from my productive past only to wake up to the reality I face now.
So if you are a fellow sufferer, please know you have my utmost support. We all need people we can rely on now, because there are times when we really are helpless and won’t survive without them. While that has always been true of everybody, most people go through their lives never admitting this fact. Cherish those around you who are there when you need them. That is what it truly means to be human.
This is a periodically updated post, completely different from most of the other posts on this blog. The content of this post will and has changed as my experiences and treatment have changed. As of the addition of the edit history, I had made several periodic updates. (here’s a snapshot of the original article from 2015 on the Wayback Machine) Most of those updates were minimal tweaks due to my personal dissatisfaction with cludgy wording, or meanings that I don’t think I made clear in my first attempt at documenting symptoms and treatment. I added the section about chewing gum. I added the section noting there were no known effective treatments for tinnitus. I think those were the most intensive change prior to this edit. However, this edit will alter several points of the post so I deemed it prudent to document what I’m about to change:
August 6th, 2017. I am doing my first major alteration of the content and intent of this post. I’m adding headers to separate information. I added the recollection of my first vertigo spell, having dredged that memory up from somewhere. Tinnitus stole my music was added. I have revised the section on dietary habits radically. I discounted what I considered to be an obsession that most Menierians have about watching their diets in the original version. There are scientifically valid reasons to restrict your diet, and I was wrong to discount this fact (apologies offered where needed) so I altered the text to fit my current understanding. I am adding some verbiage about Betahistine (Serc) since I am now taking that drug and finding it effective. I changed Phenergan to Promethazine because that is the name the reference site uses. A general reorganization of information into coherent sections was a part of this edit as well as the specific changes mentioned. I hope the content is easier to absorb than it was before.
July 30th, 2018 – I added the paragraph describing how I went bilateral.
December 29th, 2018 – Migration to WordPress. General format changes. Additional history added concerning allergies and their linkage to Meniere’s symptoms and a reworking of the entire introductory section including the addition of an intro for non-sufferers. Edited in the switch to Loratadine and Azelastine for allergies. Added a section for the steroid injections started this year.
August 23, 2019. Added a paragraph about Acyclovir. Added guaifenesin test result. Pulled drop attack reference because of confusion on the subject. To have a drop attack is to drop to the floor. It was described to me as being almost like a fainting spell but still being fully conscious. It wasn’t so much like vertigo as it was like discovering that up was sideways and so down is where gravity places you. It is a vestibular problem similar to vertigo, and yet not vertigo. That isn’t what I’ve been experiencing. Reference removed. Corrected some links. Added caution about seeing a doctor and overdosing. Added JOH and IBS-C paragraphs.
July 2, 2020. Migration to new website. Slight word edits in opening paragraphs. Corrected all links to point to new website.
December 22, 2020 – Added reference to asthma and its related article. Added link to vestibular physical therapy article. Added a parenthetical that links to the anemia article.
May 1, 2021 – Added a paragraph about Marijuana.
October 24, 2021 – Added text and links for ear fullness article.
December 21, 2021 – Moved introductory section of the article to the new Meniere’s Story page. This streamlines the article back to it’s intended purpose, listing symptoms and treatments.
January 6-11, 2022 – Added symptom list and test list, reorganized symptom section. Minor verbiage tweak to the treatment section and to the opening section of the Meniere’s story page. Added link to Sudafed Non-Drying Sinus article, added parts of its text to the page. Featured image changed to wikimedia.org/Vincent van Gogh self portrait