It’s pronounced TIN-ni-tus because it is persistent tones heard in the ear when no environmental sounds are present. It’s not pronounced tin-NYE-tus because, if it were, your tin would be inflamed.
Tin smelters (Or cats. -ed.) can have tin-NYE-tus. The rest of us have TIN-ni-tus. There are many different causes of the sounds we refer to as tinnitus:
Noise-induced hearing loss
Ear and sinus infections
Diseases of the heart or blood vessels
Ménière’s disease
Brain tumors
Hormonal changes in women
Thyroid abnormalities
Although we hear tinnitus in our ears, its source is really in the networks of brain cells (what scientists call neural circuits) that make sense of the sounds our ears hear. A way to think about tinnitus is that it often begins in the ear, but it continues in the brain.
Scientists still haven’t agreed upon what happens in the brain to create the illusion of sound when there is none. Some think that tinnitus is similar to chronic pain syndrome, in which the pain persists even after a wound or broken bone has healed.
Tinnitus could be the result of the brain’s neural circuits trying to adapt to the loss of sensory hair cells by turning up the sensitivity to sound. This would explain why some people with tinnitus are oversensitive to loud noise.
Tinnitus also could be the result of neural circuits thrown out of balance when damage in the inner ear changes signaling activity in the auditory cortex, the part of the brain that processes sound. Or it could be the result of abnormal interactions between neural circuits. The neural circuits involved in hearing aren’t solely dedicated to processing sound. They also communicate with other parts of the brain, such as the limbic region, which regulates mood and emotion.
The most likely reason for Meniere’s patients to suffer from tinnitus is damage to the mechanisms of the inner ear that transmit sound. Endolymph (the fluid in the inner ear itself) becomes pressurized (hydrops) and the pressure damages the nerve endings there. Consequently you get a ever-increasing sound footprint in your brain that you have to listen around in order to hear anything.
There is no known treatment for tinnitus. There are methods to train yourself to ignore it, and there are ways to masque it, but the ringing is something you learn to live with one way or another. People will try to sell you on treatments. My advice is to save your money.
The trick is to train yourself not to listen to the sounds the tinnitus makes. After as many years as I’ve suffered with this I think I can say pretty authoritatively that not listening to it, reducing it’s importance, even meditating on it to become one with it, is how to cope with it. I definitely don’t listen to it.
Rainymood or some other white noise generator works best when the tinnitus gets painful or impossible to ignore. I’m particularly fond of the sound of the warp engines from Star Trek the Next Generation. There are several multi hour versions of the sounds on YouTube.
My tinnitus is basically a ringing that seems to constantly vary in strength and pitch and be in varying tones simultaneously. It fluctuates from day to day, hour to hour. It is the sound of buzzing or ringing. I can hear my heartbeat in it. It seems to reflect environmental noise, so loud places are intolerable for long periods. Ear plugs are a godsend when hyperacusis sets in.
Hyperacusis is basically an audio migraine. All sounds, even quiet sounds, can be painful. Wearing earplugs is about the only way to deal with it successfully and ear plugs can aggravate other types of tinnitus. Hyperacusis can be so bad that the sound of your own breathing can set it off.
Hyperacusis should wind down like the more traditional migraine does. They don’t know what causes any of the things they call migraines, and that is the biggest problem with them. Some part of the brain is misinterpreting the signals that it’s receiving and you get audio problems, vision problems, skin sensitivity problems or vertigo.
I wonder what the more modern epilepsy treatments would do for it? In any case, I won’t be getting normal hearing aids if I ever end up needing them because I have a tendency to experience hyperacusis since developing Meniere’s and amplifying the sound in my ear is simply going to send me to my office to hide more frequently, not get me out among people more often.
SBUTTs are benign and common among most people. I’m still looking at the literature on the subject, but I see little to be concerned about in it even if it occurs frequently.
I get these at weird times. Possibly more frequently than I did before, but also possibly not. I haven’t noticed that they are linked to spells of vertigo or hearing loss myself, although the sudden spikes that disappear do make me worry about an attack. The worry is probably more of a concern than the SBUTT should be. Worry and street go hand in hand and stress is a major trigger.
If you run the slider up and down on this Tone Generator you can find which specific tones that you can or cannot hear. I get a distinct doppler effect as the tone pass through ranges that I can’t hear in one ear or the other. Bit of a freaky experience.
If you want to understand what the effects of hearing loss or tinnitus sounds like to others, hear-it.org has a list of sound files that approximates them. I can’t judge the accuracy since I can’t hear them normally anyway.
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.
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.
Symptoms.
There are four main symptoms that point towards the possibility of Meniere’s Disease. They are:
Ear Fullness. Your ear feels like it is swelling up inside.
Hearing Loss. Meniere’s disease produces hearing loss in a predictable range.
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 still have questions after seeing the first one. A good diagnostician will want to run many different tests to rule out other causes. I’ve had quite a bit of experience with those.
Audiogram. Most ENT’s have audiologists in-house and conduct hearing tests as part of the routine for people with hearing complaints.
Videonystagmography (VNG) – This test can take many forms and comprise a battery of related tests. If they make you look to the left and right at an object, that’s a VNG test.
Electronystagmography (ENG) – Caloric stimulation with electrodes attached to the head. Essentially this will be the same battery of tests that would comprise a VNG but digitally recorded with the attached electrodes. Caloric stimulation can induce vertigo so just be prepared for that.
Video Head Impulse Test (vHIT) – This test was originally a bedside test (HIT) involving sudden movements of the head and observed related eye movements. The introduction of digital recording of the results of this test has produced a set of standard responses that the individual can be gauged against.
Electrocochleography (ECOG/ECOCHG) – This test records nerve signals in the inner ear with electrodes placed on the skull and in the ears.
Vestibular evoked myogenic potential (VEMP) – This test generates the same kind of information that caloric stimulation will produce but do it directly with sounds in the ear producing muscular movements that can be recorded electronically.
None of these tests by themselves will tell you that you have Meniere’s, although several of them taken together can produce a diagnosis of Meniere’s. However, Meniere’s is a diagnosis of exclusion; a set of symptoms with no known attributable cause, possibly more of a syndrome than a disease. These tests will tell the doctors that the symptoms you are complaining of are real and how they are related to different parts of the vestibular system of the body. They won’t necessarily inform you or your doctors on the most effective treatment.
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.
The CT scan and the VEMP will point fingers at problems like superior semicircular canal dehiscence (missing or abnormally thin bone structure over the inner ear canals) and other bone issues that can probably be corrected with surgery.
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 cause vertigo symptoms similar to Meniere’s.
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 had not done a thorough reporting of symptoms before this (frequently updated) entry to the blog. I haven’t talked much about Meniere’s 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 around you.
Starting in 2001-2, 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. When the pressure finally eased in the ear, the blockage apparently cleared, I found that I was so dizzy that I couldn’t walk. I crawled to 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 for several months after that.
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.
Treatment.
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.
Behavior
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.
Diet
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.
Medication
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 Treatment
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.
Betahistine
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
Waiting my ten minutes
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.
Marijuana
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.
Edit History
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
May 27, 2022 – Pulled out the EEG paragraph and consolidated the ECOGCH, ECOG kerfuffle into a few concise paragraphs.
July 14, 2022 – Reworked the entire testing section and created the testing article. H/t to r/Menieres, Gigertiger and EkkoMusic for bringing the new tests to my attention.
