I have unilateral (in one ear only) Meniere's Disease in my left ear. I had my first Meniere's (Meniere's is referred to as MM from now on, not MD, because then you'd think I was talking about a doctor :-) attack in November of 2000. I had severe rotational vertigo for about 6 hours and vomited so hard and so often that my eyes turned red due to blown blood vessels.
What causes Meniere's Disease? Read this link for an excellent summary. It is my own feeling that I have traditional endolymphatic hydrops - but that is just a guess.
About every 4 or so months after that I would have another bout of attacks, they usually only lasted one day, but sometimes more. In late 2001 tinnitus and accompanying gradual hearing loss began.
In 2002 I began getting allergy shots to desensitize myself to allergy, since it seemed that allergies made my symptoms worse. This is now a fairly common treatment to try and control MM symptoms, or at least reduce them in MM patients who have allergies. (See Dr J Derebery's study on this treatment).
As many MM patients do, I went into remission for a year and a half. I DO NOT know if the allergy treatments helped cause my remission, but it seems likely they at least helped. There is no proof of that though.
In 2004 my symptoms starting coming back more frequently. In August of '04 and then again in December of '04/Jan '05 I had very severe attacks with accompanying rotational vertigo, and nystagmus of the eyes. My hearing continued to decline in my left ear and is currently at about a 50% loss.
After the attacks in Jan I became sicker on a baseline basis. In other words I am now at least a little dizzy every day. I am having light to moderate attacks more often. These attacks do not disable me too badly and do not have rotational vertigo, but they are very very uncomfortable (imagine spinning around 15 or 20 times and then trying to walk a 1/2 mile. That is how it feels for hours at a time) and they make walking difficult.
For the last year and a half I have not been on allergy shots because I moved to California and left my regular doctor in Portland, OR where I am from. As allergens have become frequent in the last two weeks I am having allergy symptoms - stuffy nose, sneezing, etc... - and my MM symptoms have kicked up so that I am having moderate attacks almost every day in afternoons.
So - What am doing to address all this?
TREATMENT
* First - I started with the typical stuff for MM patients: started a low sodium diet and began taking a diuretic (dyazide). I have also had to stop any use of caffeine and nicotine. (I REALLY miss caffeine... sigh...)
* Then I started allergy shots because I have moderate allergies. As I mentioned above I have ended those, but am now going to start them again in the next few months. I hope they have somewhat of the same mitigating effect that they did before!
* I take meclizine (also known as "antivert") and occasionally xanax as recommended by my doc's as a method to try and control the dizziness and attacks. Meclizine helps, but it has become less effective since January due to the ongoing damage in my inner ear.
* I am trying to lose weight and exercise more - who isn't right? :-) - but in my case I really feel these things will help me feel better on a daily basis. I feel the more I challenge the disease the more I will grow used to it and be better able to handle attacks.
* In the same vein I have started (just today in fact) vestibular rehabilitation therapy. This is a form of physical therapy that teaches people with constant dizziness exercises they can do to help them cope with the sensations and to help them challenge their systems so they can become more functional. See my next post for my first impressions of this.
* Finally I am currently taking SERC (betahistine hydrochloride). I take 16mg 3 times a day. It is theorized that taking or injecting histamine can help the inner ear deal with excess fluid. SERC has been approved for use in Europe and Canada for a number of years and is actually the first level of treatement along with a low sodium diet in those countries. SERC is not legally sold as a brand name drug in the US due to a squabble between the main manufacturer of the drug and the FDA over paperwork. Britain, France, Canada, etc.. have all found the drug to be safe - that is good enough for me. It IS legal in the US to buy SERC if a compounding pharamicist makes it for you from scratch. This is what I do, and my pharmacist has even talked with my insurance and arranged to have it covered! CLICK here for more SERC info.
* I am carefully considering the Meniett Device, but am leaning towards not trying it. I can explain why, but it would be in another post!
Since January I have seen my doctor (Dr Jennifer Derebery at the House Ear Clinic) and she has recommended I start to consider some more extreme options because it seems my MM is progressing quickly right now. Her first suggestion is shunt surgery. On May 9th I am having an ENG test (look up more info on this test at menieresinfo.com) to determine the full extent of the damage to my balance currently to help me determine if I am a candidate for this surgery. See a separate post on this surgery above.
The surgery decision will be quite momentous and I'm not sure how to feel about it, but we'll see.
That is a basic description, I'll edit and update this post if necessary.
