Hi all- would someone please explain the burnt out stage,- and what happens to you when it happens? Does the tinnitus stop- does the vertigo stop ? Or does it just mean that you are completely deaf or what? Is anyone in that stage ? Maybe I'm just wishing that there's an end to this and when the burnt out stage comes that's the end. Somehow I doubt that it's that easy but hey- ya gotta hope and wish for something right? Love to all- Loretta
Late stages of Meniere's Disease is said to be when the vertigo attacks have completely gone and deafness stays at level it is and tinnitus is still active. Probably the aural fullness goes or decreases, but not necessarily -- (I think because it is the lesser of the symptoms that you just get used to it being there constantly). This stage can also be called "burnout," as opposed to what some call remission, which is where you may experience a long period of remission of the attacks but not reached burnout. Some people -- it is said that about 10% -- who reach burnout may also begin to experience drop attacks which is a feeling of being pushed or shoved from behind and suddenly fall to the floor. It is also called Tumarkins Otolithic Crisis and you will not lose consciousness. These drop attacks can also happen while in active Meniere's but more common at burnout. There is no dizziness associated with a drop attack -- just sudden loss of being on your feet. Supposedly happens to very few. (The danger of injury is evident.) Also they claim that not everyone reaches 'burnout' either. (Confusing isn't it?) Quite frankly, I wonder myself, how much of this is true because it is taken from those who have been studied and not all ENT's participate in giving input to go with the studies. I also feel (and I know of a few) who simply quit going to the Dr. because they have become disabled, lose insurance and run out of money for the visits and get sick of talking about it and give up. (In other words, they have gone home, learned to live with it and quit discussing it.) I don't think the facts are all in, or much more would be KNOWN. I believe I am still in active Meniere's, in that I still depend on medication to make me appear normal and keep the vertigo attacks away. I have been over 4 years without an attack, but still have some days when it is good to know the meds I am on are working. The balance organ has been destroyed in both ears but I am able to walk, drive, etc. My eyes and body (and maybe the brain, if one is there) have taken over the balance and I am sure if I continue to walk and keep moving that this is doable. To my knowledge, I have only had one drop attack and I broke my little toe in the process. I felt as if I had been shoved forward and my toe caught the grid in shower/tub area and broke it while I caught myself against the bathroom counter. It is said that not everyone reaches what is called burnout or the late stages -- whatever that is supposed to mean. I believe I was in the early stages for at least 15 years before seeing a Dr. who paid any attention to my fluctuating symptoms. I was seeing a PCP, ENT, Allergist and neurologist and nothing significan could be identified as the problem. I was certain that the next visit would be to see a psychologist. I say this because that was when I had all the symptoms that were in fluctuating and did not recognize any need to see a Dr. (Everyone said they heard noises in their ears and had fullness). I didn't seem to be much different than others claimed to be. I have had hearing loss that gradually has gone from bad to worse over 45 years. The loss has been so gradual I hardly noticed it. I think another reason we don't see to our ears unless there is infection, etc., is because hearing aids are not covered by most insurance. This is long, I know but this is what I have read from "Meniere's Disease - What you Need to Know" by PJ Haybach from VEDA (publisher). This book offers the most information from one source than any other information I have found. I have also researched much of this on the Internet with same understanding. (I know you will not find a book in a bookstore or library that gives you any information about Meniere's Disease - I have looked!) It is my supposition that most people do not see their Dr. until they have had MM for a long time, and if or when the do see one in the early stages, that it is blown off or dismissed by their Drs. When everything is active and driving us crazy is when most of us finally get a diagnosis. That is just my opinion. VEDA publishes a very good book called "Meniere's Disease - What You Need to Know" by PJ Haybach. Burnout is when all vertigo attacks have ceased but you still have all the other symptoms. You still have the disease, the tinnitus, aural fullness and hearing loss. IMHO I think you will have all symptoms which are unique to each of us, which we know differ from individual to individual. Therefore, I suppose I will still have not only the 3 other common symptoms but also the recruitment, imbalance, maybe panic attacks, which I hope will have disappeared and everything except the attacks. I still have the feeling of walking on eggs some days, so to speak wondering if they will start up again. We all may go through periods of remission of the vertigo attacks which I would not call burnout. I am happy to say that I have not had an attack for over 4 years - I hope this is my burnout. Of course, I feel mine are to some degree allergy driven and am on Nasonex, Claritin, Nasal douching and doing everything in my power to control that as well. So far so good. I really don't know how long without an attack you would need to go before you could say - I have reached it. I just bless every day that I don't have an attack. And I thank God for that. For those unfamiliar with this book, it is a great handbook or what I call the owners manual for those with the disease. This explains a whole lot more than you will learn from a Dr. Here is a good link that speaks about stages and progress of the disease. http://www.healthinsite.gov.au/expert/Meniere_s_Disease So if burnout exists - I think I may be there - or else in a really nice long remission from the attacks. I am still deaf in both ears, still have tinnitus and aural fulness in both ears and some imbalance. I hope that maybe helped. ??? ???
I'm in remission or burnout, or whatever you want to call it. The vertigo has stopped (last attack was in 2003), but I still have the other symptoms, including profound hearing loss in both ears. I do not take meds.
