To quickly summarize my story, I've had Meniere's Disease (MD) in the left ear for almost two years. It came on like gang busters, gave me about a year of hell, and now seems to have (sort of) fizzled out. I'm left with a marked hearing loss in the upper ranges, loud tinnitus that is always present but varies in severity, occasional dizziness and instability, and a constant state of being FREAKED OUT (if you'll pardon the technical terminology). But THANKFULLY, no vertigo attacks for quite a while now. I feel that I've been much, much luckier than many victims of this dreaded "disease". And I may be in for a bad ride ahead, I know. But for now, I'm ok. The only thing my ENT (Ear, Nose and Throat doc) has consistently had me do is take a mild diuretic called Acetazolamide (Diamox). I had taken 500 mg/day since about August of 2007. I was also taking an anti-depressant called Effexor (which is an SSRI, or a Selective Serotonin Reuptake Inhibitor) for anxiety, which had been a problem for me before MD hit me, and my ENT told me to stay on this drug. So those are the two consistent "prescriptions" from the two ENTs I have seen. Take these two drugs.
As I explained in my last post, I suspect that my MD is in some kind of remission and that these drugs are no longer helping me, so I have stopped taking them. It has been over a month now and my symptoms have not gotten worse or changed. They are: constant tinnitus that is usually quite loud, a noticeable hearing loss in the upper range (if I cover my good ear, I can't hear the phone ring, but can hear the TV, for example), hyper-sensitivity to high-pitched sounds, occasional dizziness and instability, and an unshakable dread that it's all coming back again some day (but that's for another discussion). I also have, and have had for several months, what feels like a low level pain in the muscles of my jaw on the side of my MD.
All of this has gotten me to start thinking about things in a different way. Aside from the fact that doctors, even specialists in MD (my first ENT was a "Meniere's Specialist" and had over 500 MD patients. He has now retired.) know very little, only really throw drugs at you, and are, at best, sympathetic. Maybe the drugs help. Maybe they help some people. Maybe they helped me. I don't know, and neither do the doctors. We can all agree that this is the case, and that's just the way it is. It does not mean that we should not do as the doctors say. I have followed my doctors' advice diligently during this ordeal until it became clear to me that I may not need to any more.
But it also means that we are somewhat alone here, at least as far as having an "expert" on our side who understands our disease but does not also have it, and can dispense aid. So we need to take matters into our own hands. Many MD sufferers already do this from what I can tell in reading the forums. Things like herbal treatments and chiropractic are quite common.
What has undeniably helped me during this ordeal? The two things that I can honestly point to are regular exercise, and talking / typing with others, both the afflicted and the non-afflicted, in an atmosphere that feels sympathetic.
What's this? Stress-reduction. What else can I say about this? If I don't get my bike rides in, my MD symptoms are worse. If I'm stressed about something (I have two toddlers and have recently been laid off, so that should give you some example), my tinnitus is worse. If I don't get enough sleep (which is usually), I'm dizzier. I could keep going forever here, and I'm sure I'm preaching to the choir.
So all of this has gotten me to another path. I don't intend to scrap everything else. At my next ENT appointment, for example, I intend to discuss how I have discontinued the drugs and also talk about my jaw pain, etc. But aside from this, I am planning to attack this disease in a new way, from the standpoint of reducing stress and being happier and healthier. I have a feeling that if I can get control of stress, my MD, and any other (related?) problems, such as anxiety, migraines, insomnia (all of which I have), will be... ??? Not sure how to finish that sentence. Maybe "much more tolerable"? "In context"?
I've recently read (and am now re-reading) a book called "The Relaxation Response". It was written by a cardiologist a couple of decades ago and has recently been revised. It is, essentially, meditation and its benefits from a medical perspective. I will not summarize it here, but highly recommend that you read it if you are interested. I got a new copy in paperback for about $5. I will just say that this book has gotten me very excited about helping myself. It hasn't fixed my MD or anything else yet, but it sure has suggested a promising route that I should take to help fix this myself.
I'm not going to start pontificating about something that I have only begun to study. But I will end by saying that I am sure that getting control of stress and anxiety in a "natural" way will probably be the best thing I will have done for my Meniere's. I hope that this is true, and I will keep you posted on the progress.
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I have had Meneire's disease for about 5 years. Last summer I had the gent injections. After a difficult recovery period of about 3 months I haven't had a bad attack in quite awhile.
I have heard about gent injections being successful. I think I was lucky enough to have my MD dizziness attacks burn out before I needed to resort to gent. I'm glad it's helping you.
If I were you I wouldn't worry too much about the return of major attacks. I'm stage two Meniere's (middle), and it sounds like you're in a very similar place to me. At this point, the violent attacks are unlikely to return.
As I see it now, there has been a gradual shift in frequency from violent attacks to more subtle attacks. When I look back I always had a few minor attacks but at the time didn't really register them amongst the violent ones - I was just glad they didn't develop further! After a year or so the regular violent attacks stopped altogether and I had a good spell of about eighteen months.
When regular attacks did return they were only the reduced ones, albeit more frequent. Now, after another six months or so, there has been a further shift to the point where an 'attack' is mostly a fairly short visual disturbance. I do stop what I am doing and rest until it passes, though, for fear of aggravating it. I still get some vertigo, but less severe and less frequently.
I think this is part adaptation, part progression of the disease and part benefit from lifestyle changes.
I found an Australian Government page useful in summarising a lot about the disease.
Thanks for your comment Jeff. I am curious about your lifestyle changes and what treatments you are currently taking for MD. Also, can you describe the visual disturbances?
By lifestyle changes I mean trying to slow down and take it easy, get plenty of sleep and eat fresh and unsalty foods. I still drink coffee but only one a day in the morning. I also have a timer application to remind me to take frequent breaks from the computer! I figure these are all things that are going to do anyone good, Meniere's or no!
I don't currently take any medication but I do have some supplements - potassium, ginkgo biloba and fish oil. I do a weekly yoga class, and I'm fortunate in that I seem to be retaining my balance between attacks.
The visual disturbance that characterises most of my attacks is a kind of slight side-to-side shaking in the 'picture' that I see. Sometimes it's a bit worse and might be nystagmus. It tends to be accentuated if I look sideways (either side), and it's also uncomfortable moving my head from one side to the other - the movement of the 'picture' lags the movement of my head!
An attack lasts 20mins to one hour. During this time my neck often feels weak if I bend it, but I also often notice that my breathing feels very free and easy. (I believe this is because the attack is actually a release of tension.) It would be difficult to use the computer or read during an attack and I fear it would just cause it to continue, so I usually watch TV. This isn't a problem because you don't need to focus as much.
Hope that helps!
Thanks for the information, Jeff. I wish I had your self control. What about alcohol consumption?
No alcohol at all! That's not self-control though, as I've never been much of a drinker.
Thanks, Jeff. I wouldn't mind hearing your whole story. I feel that the Australian medical community has a much better handle on this disease than the American. For example, my first ENT said alcohol is fine because it's a diuretic, but others say no alcohol at all. My personal email is measure13@yahoo.com.
Thanks, I will get around to writing a full account at some stage! In the meantime I've read the Relaxation Response and have started practising it - thanks for the tip on that one. It's only been a week or so but I think I may be sleeping better as a result.
The only other thing I've noticed that might have had a similarly quick effect is Vitamin B supplements. They too seem to help 'smooth out' some of the bumps.
All the best.
I have had Meniere's Disease for about 4 and a half years. The attacks were really bad at first, remission for 1.5 years then attacks again. Remission for 7 months and them the attacks were mild - I was thinking it was burning out but then I ended up with severe attacks - one lasted 3 hours and another 12 hours. I have had two gent injections and this is week 3 of recovery. It is hard - but worth it for me as my attacks were daily and sometimes 2 or 3 a day. This was with meds and all the diet restrictions.
great article, very impressive discussing here about jaw pain, it is very helpful for me ,Thank you so much for sharing!
great article, very impressive discussing here about jaw pain, it is very helpful for me ,Thank you so much for sharing!
Hi! My husband has Meniere's disease that started getting progressively worse in the last few months. I came across your blog which is very informative but looks like you have not posted anything for a while. I wonder if you were able to get your MD under control and if so, any chance you could give us your latest update. Thank you so much and wish you all the best!
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