accepting the verdict of a name? An Interesting Canadian Website I came across with some excellent "Frequently Asked Questions About Meniere's Disease" http://www.menieres-disease.ca/menieres-disease-faq.htm
I agree. Too many people want to treat symptoms without getting to the root of the problem. That goes with anything, not just meniere's.
Yes....of course it's possible. From what I've noticed from this forum is that members that have had MM symptoms for quite a while, have accepted that none of us have exactly the same symptoms....and some are more severe, some less and they often fluctuate. In the "discovery" process it seems to be the "norm" to try to understand what's happening.....and see if we can fix or cure it. As we discover more about ourselves and our own symptoms and triggers, then it's sort of irrelavant whether it has a "name". I have to disagree with one of their observations they stated on that link regarding nasal spray. My MM symptoms got to a certain point of severity and leveled out. I went from occasional bouts of dizziness.....to dizziness and decreased hearing in one ear....to dizziness, hearing loss, PLUS tinnitus.....and then on into vertigo and then drop attacks and full blown rotational vertigo with all the horrible side effects. My EX neurotologist put me on the lo/so diet and diuretics and simply said it will reduce the pressure from fluid INSIDE my inner ear. As I mentioned in another thread, he would not considered the idea that my symptoms might be worsened by allergens. When I changed doctors and went to my allergist, he explained that for me, allergens cause the tissue to become inflamed and swollen (think of a bee sting)....or that stuffy feeling of sinus congestion. Taking an antihistimine blocks that "histimine" effect, and decongestants relieve the swelling not only in sinus and nasal areas, but also in the tissue surrounding the inner ear. Does that make sense? Having the existing pressure from inside my inner ear, was only made worse when I had added pressure in the surrounding tissue. I am not symptom free.....I have all the things that add up to MM, but at this point, I am able to control the "vertigo" aspect by treating my allergies and relieving the "outside" pressure. Here's an example: Pretend this is a MM inner ear showing internal pressure: (<-->) This is me.....with an allergy trigger: --->(<--->)<--- (The outside pressure increases the internal pressure and flips me over into a full blown vertigo attack.) This is after taking an antihistimine WITH a decongestant: <--(<-->)--> Is this making any sense? This link is saying that the nasal spray is problematic.....but in my personal case, it is a preventative along with daily allergy meds keeps me from going past the point of no return. It's how I have learned in 10 years to cope with "symptoms". If my symptoms change in anyway.....I have to be proactive and address what is happening.
Well, since there is no known cause, there is nothing to search for. I have nothing else and I'm not a scientist, so I've just accepted and coped. For some of us, that's good enough.
Hi Everyone! I am unclear about what you mean by accept the verdict of a name. Although I have expressed this before I am going to say it again anyway. I do not know how it is in other nations. But I have extensive healthcare experience at local, state, and federal levels in the USA. I know for a fact that a name, specifically, XXX Disease is a trigger for FUNDING. It means the door is cracked for Insurance coverage, Medical assistance, Disability coverage, Financial assistance, Support agencies, Rehabilitation and Treatment modalities, and - to me the MOST important - RESEARCH FUNDING. I will take the name XXX Disease. Of course continuing to seek the causative factors is of utmost imortance. (See above re: RESEARCH FUNDING). On the other hand, almost every other disease even if the cause is known ... only the symptoms are treated. Bacterial infections, parasites, and toxicities (like lead poisoning) are actually the only exceptions I can think of offhand. Let me rattle off a few that illustrate my point: Allergies -OK let's say you are allergic to gluten. Is gluten the cause? Well not really. Allergies are a symptom of something screwed up in your immune system. The real cause is aberrant lymphocyte receptors that go haywire when they see a gluten molecule. The treatment for allergy is to find as many triggers as possible (skin testing, etc.). Then there are two choices. 1- eliminate the trigger as in "stop eating gluten" or for non-food allergies 2. Trick the body's aberrant immune system into stop going haywire when it sees an allergen molecule (allergy shots, antihistamines, decongestants, etc.). If you have allergies you may have noticed that the doctor notes things like Allergic Dermatitis on your diagnosis line. Why? Because insurance will not reimburse the doctor if it just says allergy to XXXX. Cancer - even eradicating a tumor is treating a symptom ...but it has a XXX disease name (see above RESEARCH FUNDING) All the viral infections - Flu, herpes, meningitis, measles, tb, hepatitis, etc. etc. ...but if it has a name (see above RESEARCH FUNDING) Ingrown toenails - no disease name (no RESEARCH FUNDING) Gulf War Syndrome - OK OK I have to admit a lot of my knowledge about the importance of a name comes from this. As soon as the military started coming home from the Gulf War with obvious screwed up symptoms the federal government shook loose some funds to figure it out. We submitted an immunological proposal of a very logical and reasonable avenue to explore. We we told, "There is not enough money for that research." The funding was given - all of it - to psychiatry based investigations. We were absolutely shocked. We were further horrified as we watched the wives of gulf war veterans acquire cervical cancer at a much higher rate than the normal population (3X) and all kinds of often fatal diseases crop up in the veterans themselves. Worse yet - the amount of psychiatric disorders did not improve! Well guess what, now that so many people have died or have debilitating illnesses - our research proposal got funded last year. Way too late to help everyone in the past 15 (FIFTEEN) years but maybe soon enough for future victims. It looks like we were on the right track. I saw these patients denied coverage for meds and tests that could have prevented the downward spiral... because not only was it a syndrome but the feds had decided it was a psychiatric one. ---I watched our patients die.--- AIDS - when it was just a combination of symptoms, even though people were dying ...very limited funding. Again, I watched our patients die. The babies did me in and I actually had to change jobs for a while because it was so damn frustrating I was crying every day because EVERY WEEK we were losing 2 children at least. then we got a DISEASE name. Funding opened up and we went for it like gangbusters. Did I benefit $$ from the funding? LMAO hell no! I took a 50% cut in salary to be a part of the team that charged into this. Was it worth it? Our babies rarely, rarely die of AIDS here anymore. I'm counting that as a life well spent. Sorry this is long. I have very strong feelings about it. XX OO
I agree totally with Linda. We have a disease with no known cause and no known cure. Accept that and treat the symptoms as best as you can. Life is too short to worry about things that you have no control over. The Pig
I've been trying to find out what causes my symptoms for almost 10 years. I can't nail down triggers, I can't nail down why I'm fine one minute and then I'm spinning and puking the next. Why can I go for three years with no vertigo and for the last three months I can't go three days? I'd love to know the answers. No one seems to know them. I personally don't care what they call what I have. I just want the vertigo and puking to stop! I am at the end of my rope.
I don't need a label for what I have, esp. since this condition leaves most doctors scratching their heads and guessing up a name anyway. What I was thinking of, is that if there is a way to get relief from the symptoms by investigating and experimenting what the cause may be, then one just might be able to nip the problem where it starts instead of just treating the symptoms itself. Tess is one example. For another, those like myself that find allergens can create symptoms of menieres, can keep medicating for the symptoms and not do anything else, an ever ongoing battle, or, one can learn what the aggravants are and avoid them, and when exposed, irrigate to wash them out of the sinuses, and possibly use antihistamines to prevent the swelling that will cause meniere's to hit with a vengence. Another example is food triggers...why keep eating the offender and taking meds to treat your symptoms, when if you just avoid it altogether you get right to the root of the problem, save yourself unnecessary suffering and the stress to your body from perpetual medicating. I know not everyone is affected by something they can control, but it is a good place to start.
In one of the stories here that carribean sent it mentioned a woman getting to the root of her problem causing the attacks.SHE FOUND OUT THAT SHE WAS ALLERGIC TO THE INSULATION IN HER WALLS AND HAD IT CHANGED.How in the heck do you find something like that.So now I sit here and think,it could be the crap in my walls,the paint I used on my walls,maybe a chemical in my detergent,who the heck knows.But,I don't think I can spend my life looking for it.
LOL you think it is a joke but we did have a patient who was allergic to her husband. LOL true story. But it did not affect her balance .... except mentally ...and we already know we can all blame our partners for that -no matter what sex. lol
I know not anyone on this forum and any other link is going to tell me what is wrong with me that will substitute for what I am currently diagnosed with as Meniere's Disease. The fact remains that there is no known cause and no cure - I have accepted that and moved on. I have multiple other problems for which no cure exists. None of them will kill me, they will just make life more unpleasant. for some there is medication but for the most part - that is just how it is. Life is tough and then you die. I am just happy to still be alive on the planet and happy to have friends who understand me and have a wonderful family who tolerates me and some acquaintances who put up with me. I enjoy my life and accept the little stumbling blocks along the way. Like Linda said - I am not a scientist - I will just leave the professionals and the Drs. scratching their heads wondering what is going on. At some point we have to accept a lot of things that are not in our control - that is life - we deal with it the best we can and take no prisoners.
Life is short and I feel that I am coping the best that I can, in order to enjoy the simple things life has to offer! I was fine yesterday...went with hubby for his MRI on his shoulder, then out with family (9) to dinner and home to bed. This morning, I went into my closet to get some clothes to wear today and "BAM"....spin...grab door casing...focus...hang on...get to chair...focus...get to valium...focus, etc.!! I have no idea why, but the ugly beast reared its head and I have spent the day on the sofa trying not to puke and/or spin???? I just keep saying "this too shall pass" and try to have a better day tomorrow when I attend my son in law's celebration party for being selected as the Outstanding Crime Prevention Officer in the state! I will take my rollator and give it a go!!! Then on Saturday, I will attempt to attend one of my great grandson's birthday party and hope I don't embarrass myself...life goes on, whether I spin or not! Blessings, twinkle
Hi Mya I worked for three years after I had finally got a Dx and until I went on disability and retired. I am currently 66 so fully retired from working. I lived in oblivion and was in the early stages of the disease long before the Dx came so was diagnosed later in my life, and when things were really active. There was no way I was going to let this put me down. I was totally ticked that I could no longer work :-X :-\ - but alas, all the positive thinking, and all the stuff I tried was not helping me one little bit. Stress of trying to keep working and meeting deadlines and giving training and taking on more responsibilities and being unable to hear most of the time on phone calls or participate in a meeting or workshop - it just became impossible and I was disabled - meaning I could not do what I was hired to do effectively and meet the demands of the job. The disease also pushed things (other health issues) that were not a problem before the Dx into the mix and I had two surgeries that were unrelated to the disease but brought about because of the violence of the attacks. By the end of 1999 - I was not Y2K compliant, so to speak which was common talk back them as we were looking at 2000 in the future. : The Dr. talked about disability in January of 2000 but my hubby had lost his job and I HAD to work or so I thought. I kept at it till June and then the Dr. Wrote a letter saying I was not fit to work and stress was making things worse. Then in July he told me that if I didn't go on disability - I could find another Dr. He wrote the people where I worked and said I was not able to continue working and that he has advised me to go on disability. It was a done deal after that. The next time someone saw me there trying to help someone with stuff I knew really well - I was asked for a letter from my Dr. saying I had been released to return to work. I didn't have one so I was told to visit and leave. I did. I worried myself sick about anyone trying to fill my shoes. LOL funny how I worried about that job long after I left it. : : THAT is when I found this place - I did not believe I could be disabled - now I see I was and am glad it is over with. I joined this site in June 2000 and started asking questions. Sometimes - you just have to do what you gotta do. I am bilateral and have been that way from the start. I have two noisy ears and fullness and mostly deaf can read lips a little and watch facial expressions - make wild guesses at what people are saying when they won't look at me or be close enough to hear. I get myself in trouble that way. No one wants to be disabled - it just happens. :-\ :-X Do what needs doing - apply for disability and make sure your Dr. backs you 100% as mind did. We went through an appeal with SSD and then with the retirement board and I won both. Most places have a STD - short term disability and a LTD - long term disability - maybe those can give you something to hang your hat on while you wait and see if you really need longer and permanent disability. check with your benefits area and find out what you need to do. good luck.
sighhh.....i feel ..hmm what do i feel today.....i try to stay positive as we all do..but sometimes it just hits you...god this sucks!! i am thankful that mine is not as severe as some of you dear friends here but what is horrible for one might not be so bad for another...i try to look on the bright side that i have two beautiful children...i can still hear the wonderful sounds of the outdoors..i can drive..i can work..i can ride my bike..exercise..do all the things i do but the what ifs kill ya if you think about them too long...ok enough...no more pitty party...hugs to all!!!
