Treating Meniere's & Its Symptoms

I get this sort of question a lot "what do you do to combat Menieres?" or "What symptoms do you have?" The latter is asked because not everyone diagnosed with Meniere's actually has all the symptoms associated with the disease. The former is usually asked because; rather than there being no information available on the subject online, there is a lot of contradictory information from a myriad of sources.

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.

When I was a working stiff, starting about 2002, I would be subject to bouts of rotational vertigo that came on quite suddenly.  At first they seemed to be related to allergies and those times of year (spring and fall) but as time progressed they 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 is not enough work for the average boss to accept. Definitely not enough work in 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.

Now that I am on disability and free to manage stress for myself, I'm lucky if I can go a month or two without vertigo which I consider a huge success.

But 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 hyperacusismaking 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. 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 that goes with it, 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.

The ENT has informed me that hearing in my affected ear (left ear) is about half of what it should be.  That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms.  There are a couple of options 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 my left ear permanently silenced.

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 for children having extreme allergic reaction and throat swelling. Most recently 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 I've suffered with for all of my life might not alleviate some of the worst symptoms of the Meniere's. Sadly, the procedure had no noticeable effect on Meniere's symptoms, but has apparently reduced my allergic reactions 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 light 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.  Last year 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.

Treating Meniere's runs something like this for me.  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 flat. I tried mounding pillows on the suggestion of touring musician who is a fellow sufferer, and that seemed to help.  Then I tried wedging up the head of the bed 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, sorry to say. Mostly it is a matter of enduring the constant sound (that 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.

If the ear is bugging me and I don't have vertigo yet, I take pseudoephedrine/guaifenesin, that usually reduces the pressure. If 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 it stops me from drowning) If the migraine is kicking in, I take prescription doses of ibuprofen and acetaminophen together. I recently got a prescription for amitriptyline which I find removes my need of other painkillers almost completely. 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.

Avoiding salt was something I was already doing for hypertension, and my hypertension medication contains a diuretic, which was the first medication suggested by my ENT.  I haven't really noticed any dietary triggers, to be honest.  Caffeine I avoid because it keeps me awake, not because it makes me dizzy.  I know many sufferers have found they have dietary triggers though, so I felt it was worth noting diet as part of this blog entry.

Vertigo treatment starts with meclizine (dramamine) which is what I normally take. Serc or betahistine isn't anything my doctors have ever recommended but is apparently common in Britain. It's results with Meniere's symptoms is decidedly open to question. However if you don't get the results you want with one drug, try another and another if necessary.

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 the vertigo has already made me nauseous, I take phenergan. If the vertigo doesn't respond to the meclizine (which happens) 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 phenergan and valium, but my ENT gave me a prescription for xanax the last time I flew.  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.

That and gum.  I always travel with a pack of gum. 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 make a lot of drug recommendations in this blog entry.  Having suggested drugs for various treatments, I really should also offer the following caution; 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 trigger and then doing your best to avoid it. 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.

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.  Things that I thought were real turned out to be delusion. 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, permanently.

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 one 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.

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