It is sometimes hard to believe that I have only had the Meniere’s disease for 7 years or so. It has changed so many things in my life that it seems like I have been fighting it (or living with it) forever. Like most folks who have it I had never heard about before I was diagnosed with it and if you tell someone you have meniere’s disease they probably wouldn’t know what you are talking about. After blogging about it for over two years I have learned quite a bit about this disorder, the worst bit of information, of course, is that there isn’t a cure. But in a strange way having Meniere’s disease has changed me especially with regards to my inner strength.
I always had a lot of health issues growing up, tonsils surgery, appendix surgery, hernia surgery plus constant bouts of the flu and many colds. I wore glasses at an early age also. None of the problems were life-threatening and they could be treated so none of them actually tested me emotionally. Meniere’s disease changed everything for me.
Many folks talk about Meniere’s disease going in stages where there are times when the attacks occur regularly and other times when they seem to have gone away. I think that is are also emotional stages to Meniere’s disease. At first you don’t know what is happening and then when you do find out what you have it gets pretty rough. There is no cure but there are treatments (lots of treatments) some work, some don’t. This is really a confusing time because you don’t know exactly which way to turn. Should I try this or that, what are the consequences of surgery and procedures?
It is a lot of stuff thrown at you, but after while (in my case) your inner strength helps you through all the decisions and questions and anything else that this disorder can throw at you.
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Sunday, April 17, 2011
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11 comments:
David, have you had any luck with supplements? If so, what do you take and what amount?
David, have you had any luck using supplements for your Menieres? If so what do you take and what amount?
hello david
inner strength and positive thinking are a vital part in battaling this terrible illness, its only after joining this site that it dawned on me that keeping your stress levels down and being strong internally are important parts of maintaining a semi normal life.
i have done serc and diuretics, and my illness was none the better, and diuretics make me me much worse. i suffer from migranious vertigo and menieres. for the migraine i was given Propranolol which is the best drug for me, it bought my illnes to a kinda managible level. i dont vomit any more and attacks are not that often.
i still take serc and diuretics only when i am tottally blocked, and only for 1 month max if that.
alot of you i here take valium, now valium and Propranolol
both these drugs are used for anxiety, stress, migraines.
hence we have to find inner peace/strength and learn to relax as the inner ear (especially if you have a problem in that area) does not like stiffness stress anxiety sinusitus etc.
can i ask a quetion to the people, what has improved your illness more inner ear drugs ie serc diuretics. or beta blockers and valium type drugs. for me for sure the beta blocker was a god send.
all the best
ali
Hi! I have been reading periodically for about a year. I have had meniere's for several years and continue to battle. I recently heard that allergies might be a "cause" of meniere's. Have you any info. or insight into this? Also, do you have problems working with a computer?
Really great post and so very true. Really hit home with me today!
The ENT specialists I've seen say allergies do impact Meniere's, but so far I've found that treating my allergies doesn't seem to make a difference. Others might have a different experience?
Ali, I'm having trouble with SERC because I have asthma and use an inhaler. That seems to conflict with the effectiveness of the SERC. Valium works very well for me, but I try not to take it too often so I don't become dependent. Diuretics did nothing at all. I haven't tried beta blockers.
With valium, I think the effectiveness is not just due to its sedative properties. Valium (diazepam) is also an anti-seizure medication that basically breaks the signal to the brain that tells you to be dizzy when Meniere's flares up. My understanding is that its neurological effects are what helps Meniere's sufferers.
Regarding inner strength, Meniere's is a severe test for my own inner strength. I have good days and bad days, and sometimes I feel like "my life" as I knew it is pretty much gone. Certainly it has changed drastically, and forever, and I need all my inner strength to keep going and find ways to make a new life that's worth living.
hello peggy
try the following types of massage:
cranial osteopath
indian head massage
also keep on top of all your other ailments ie asthma etc. as when you have menieres even a cold sets you back.
sea air can be great.
dont trust your gps (doctors) when i was first diagnosed all they wanted to do was give me a hearing aid. i pushed them to the max. my hearing is alot better and i dont need a hearing aid. i made them send me to all differnt kind of specialist. sadly you are your own best doctor unles you a king or queen then you have people queuing up to help you.
allergies ia a big part of menieres especially for me. and its a complex area as the full allergy tests are long and expensive, you must watch what you eat and look at your environment.
there is also an exercise called cawthorne cooksey, do this on a daily basis.
again i repeat to people if you smoke give up. and limit your alcohol consumption.
i am only 37, i presume alot of the people on here are older. i am just a puppy lol, in the world of menieres.
people should on here keep giving tips as ironically between us is a wealth of knowledge more then those doctors out there.
peggy please try propalol as without it i am all over the place.
Thanks, Ali. I do see an ear/nose/throat specialist who is very good and motivated to help her patients. She knows her stuff and is willing to work with patients to work out solutions. I also email and talk to researchers around the country when I can to get new ideas.
I did have a full battery of allergy scratch tests and am working to keep my allergies at bay. I'll look up the cawthorne cooksey... I've never heard of that!
I've never smoked in my life, although both my parents were heavy smokers while I was growing up. Alas, no one knew the hazards of second-hand smoke back then. And I almost never drink alcohol. A glass of wine on special occasions is about it these days.
I totally agree with you that the experiences of everyone on this board are a goldmine of information. There are so many different ways of handling Meniere's, and you never know what might work.
I would really love to try Indian head massage, by the way, but have no idea if I can find it here. It's probably easier to find an osteopath who does cranial massage. Worth looking, and I'll try.
Thanks for the tips! I do have a call in to my doctor about the SERC, so we'll see what happens there. Meanwhile, I am seeing my therapist on Thursday, and she's helping to keep my inner resources shored up.
thanks everybody for the comments!
David
Hello, I am a 36 year old female that has been dealing with meneries disease since I was 15. Yes, I did say 15. I have had ear problems my whole life. I have had 8-10 surgeries in my ears starting at the age of 4. I have been completely deaf in my left ear for what seems to be all of my life. Dealing with vertigo issues as a teenager was difficult but due to the random spouts of dizziness and the length of time in between spells I was not correctly diagnosed until was 33 years old. I am certain that had I seen a doctor with some experience in the matter that might not have taken so long to diagnose. Non the less I know now. My ENT wants me to go thru a few more test and possible another surgery. Meneiere's is not curable as I understand it however this surgery can limit or helpnthe symptoms. I'm not sure what kind of surgery it is right now but I also understand that there are some major side effects to the surgery and I was wondering has anyone here had any surgeries that is supposed to be a common practice for meniers patience? If so what was your experience with it? Thanks so much for you help. Oh I should probably mention my doctor has taken me out of work as well due to the side effects of menries disease. Any input is helpful! My email address is terranofsinger@gmail.com. Thanks
Anonymous, there is another thread on this blog about labyrinthectomy, which is a fairly common surgery for Meniere's Disease. It involves cutting the vestibular nerve for the affected ear. However, in your case, I doubt a doctor would recommend doing it on both sides, since that would leave you with no effective system for balance. Usually it's done on just one side, I believe. Do you have any idea at all what the surgery your doctor mentioned is, or what it is supposed to do?
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