Let me tell you about my Meniere’s, since I haven’t done a thorough reporting of symptoms (ever) and really haven’t talked about the disease since I first started this blog in 2005.
Starting about 2002, I would be subject to regular bouts of rotational vertigo that came on quite suddenly. My first vertigo attack occurred as a single incident many years earlier, probably sometime in 1984. That instance I triggered myself by accident while trying to clear pressure in my left ear that I had just started noticing. I was sitting in a hot shower in an attempt to make the blockage in the ear pass, and when it finally did I found 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, but woke up the next day feeling tired but no worse for wear overall. Best of all the ear pressure seemed to be gone, which lead to subsequent years of sitting in hot rooms including a sauna a few times, trying desperately to relieve the pressure in my head.
When I first started having subsequent and almost regular vertigo spells, they seemed to be related to allergies and those times of year (spring and fall) when my allergies had always bugged me, also accompanied by the annoying pressure in the ear. As time progressed the vertigo spells became more generalized and could be brought on by high pressure weather, or just turning my head the wrong way. These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and 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 in length. This kind of attendance pattern does not produce enough work for most employers. I was definitely not working enough for an architecture environment. 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.
The vertigo is just the most visible symptom of the disease. Almost as debilitating is the constant tinnitus, 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. Which brings me to…
The Ear, Nose and Throat doctor (ENT) informed me in 2015 that the hearing in my 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. This is not happening unless the vertigo gets worse. There is also a surgical procedure or two that will interrupt the signals from the affected ear. Those will make you completely deaf in one ear, and the Gentamicin can also make you deaf if not done properly. Too much risk for too little reward based on the situation I am currently in.
I’ve only had two surgeries in my life. When I was a small child I had my tonsils removed. It was a common practice back then (1973) for children having extreme allergic reaction and throat swelling. 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 them 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 amusement of all present.
I have slight dizziness and disorientation almost constantly. 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.
This is how I treat my Meniere’s disease. Behaviorally, I avoid stress and allergens as often as I can. That means getting enough sleep first and foremost, since stress is directly related to the amount of sleep that you get versus how much you need. This is one of the hardest things to do in this culture, the US culture, justify getting a full night’s sleep. Never mind a full night, I frequently can and do sleep for longer than 12 hours. I have found that 8 hours is more than enough if I can get them from 10 pm to 6 am, but the problem is getting to bed before midnight (as I’m sure most people will agree) and staying asleep for the full 8 hours.
Probably the single most beneficial thing I’ve done aside from sleeping more is to stop sleeping on a flat surface. I tried mounding pillows under my back on the suggestion of a touring musician who is a fellow sufferer, and that seemed to help. Then I tried wedging up the head of the bed up by about 6 inches, and that seemed to produce even better results. 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 inner-ear pressure 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.
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 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.
Dietary habits are a frequent topic with Menierians. 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. Easier said than done.
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, this combination is usually effective at reducing ear pressure. If my allergies are acting up, I add Fexofenadine (most people prefer Loratadine. I find it dries the sinuses too much unless it is ragweed season; then the extra drying stops me from drowning) 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 in the last few years. I only take them 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.
Vertigo treatment started with Meclizine (Dramamine) which is what I took in 2003 when I was first diagnosed. A few years ago I heard about Serc or Betahistine from Menierians in online forums. This is a drug commonly prescribed for dizziness and specifically prescribed for Meniere’s 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.
This summer (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. Not being one to reject any suggested treatment out of hand, a treatment that wasn’t damaging or potentially life threatening, I decided to give it a try. Betahistine is not available in the US from your ordinary pharmacy. It has to be compounded and consequently isn’t on the average health insurance formulary. This makes it more expensive to take and harder to get, but at least it was legal for me to try it. As of this writing I have completed the 90 day trial of the drug and while I can’t say it is doing everything I hoped for, it is doing something. Whatever it’s doing, it’s doing it enough that I agreed to continue taking it daily for the next year, upping the frequency to three times a day. My head seems clearer, my concentration sharper. The tinnitus continues unabated but the ear pressure is less noticeable. I still get occasional bouts of vertigo but they seem to last for shorter durations.
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.
Reading through the treatment page on Meniere’s Disease Information Center website, it becomes very clear that most sufferers will try anything to stop the vertigo. If you’ve ever been afflicted with a Drop Attack from 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.
If I have vertigo and it has already made me nauseous, I take Promethazine. If the vertigo doesn’t respond to the Meclizine (Which happens. Frequently) then I take Valium to let me sleep or Xanax to relieve the anxiety of the attack, which generally leads to sleep (all three require prescriptions in the US) Unconsciousness is a mercy when consciousness is a never-ending torment of spinning. Spinning without end.
Flying is the fun part. I have to be medicated to fly. I used to take Promethazine and Valium, but Xanax alone is sometimes enough of a treatment to keep the vertigo at bay. I much prefer the Xanax because I don’t sleep, but I have to have supervision because it makes me a bit fearless, while not actually giving me better balance. Just an accident waiting to happen then, but at least I can sit through the 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.
A word of caution. I make a lot of drug recommendations in this blog entry. 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. 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.
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 my assumptions. 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 now seem trivial. Services I complained about paying for are now essential. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting this 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 change as my experiences and treatment change. As of the addition of this, the edit history heading, I have made several periodic updates, most of those have been 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.
Today, August 6th, 2017. I am doing my first major alteration of the content and intent of this post. I’m adding a few headers to separate information. I added the recollection of my first vertigo spell, having dredged that memory up from somewhere. I can still vividly picture the inside of that Abilene apartment, almost like a nightmare. Tinnitus stole my music was added. I have revised the section on dietary habits radically. I poo-pooed the obsession 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, 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. Feedback welcome!