What age is most common for Meniere's to surface???
Posted , 4 users are following.
Hi --- I was diagnosed at 39 (I'm 40 now) & my father was diagnosed right around 40 as well. I'm feeling like this is an "old persons disease" which leads me to be even more excited (sarcasm) about my future! 
I would like to hear from others...just curious what the typical onset age is, if it ran in your family, & with every case does it progressively get worse year after year no matter what? Are we all doomed to more hearing loss & a lifetime of episodes??? I take 75mg/daily diuretic & valium at the first sign of a vertigo attack so far for the past year it's been "manageable" I have not had a full blown room spinning attack in almost a full year. The episodes I have now are more mellow but still awful. I get fullness & roaring, heavy dizzy head then sweats & rapid heart rate with nausea. The valium can usually pull me through them but they still last a few hours. My thoughts on having a third.baby have been thrown out the window as that terrifies me since it's all I can do to put a smile on and fake energy for my kids as it is! This forum has been great and comforting...it's a relief to hear from others who know my struggles.
-T
0 likes, 9 replies
tanney SoCal.T
Posted
Statistically MD affects folks over 40. Mine started when I was 33 and I've had it for 40 years. In my case it did not get worse. I had the gentamicin injection 38 years ago when it was relatively new. Then this past August I developed MD in other ear and have been struggling with that. My advice to you is the same advice I've given multiple times on this forum in multiple threads.....
1. continue with the diuretic every day. 75mg is usually pretty effective
2. follow the "meniere's disease" diet....no salt (1000mg/day max), no caffeine, no alcohol of any typer....ever.
3. control stress level...your use of valium should be helpful. If not inquire about Ativan 0.5mg
4. If above does not control vertigo, ear fullness and some of the tinnitus then you might ask your ENT about betahistine (oral capsule or liquid) and/or intratympanic steroid injections.
5. if you stil are not geting relief ask ENT about gentamicin injection. There are possible side affects of this proceedure such as additional hearing loss and/or balance difficulty. In my case I did not experience either side affect. As long as your good ear is functioning normally this is almost a sure proof way to safely eliminate vertigo (not 100% as others on this forum can testify). It worked for me.
6. Regarding ENT....make sure you choose an ENT that specializes in inner ear diseases...not all ENT do. Some are allergists and most of the others....though certainly well trained....are general ENT that know quite a lot about the ear/nose/throat but do not have subspecialty focusing only on ears. General ENT often do not do inner ear surgery such as the steroid and gentamicin proceedures. Don't let this scare you. Both of these are very benign proceedures and are usually done in the office and take about 1/2 hour total. Nonetheless they are surgical proceedures that require specific skill and experience. You may need to inquire at your nearest university hospital for ENT recommendations.
I also recommend that you read as many other threads on the MD forum for additional information from others suffering through this disease. There are a lot of tips and advice that you might find helpful.
Best of luck to you and please keep us informed about your progress...
SoCal.T tanney
Posted
Thank you Tanney...prior to getting that injection were you on medication (diuretic?) that wasn't working? I appreciate your response and wisdom!! My diuretic is doing pretty well... most days my only symptoms are tinnitus & brain fog. I do worry about taking a diuretic for the rest of my life though. I'm glad to hear ur not "worse" although it's unfortunate you are getting it in the other ear now!! Arggg this disease can be relentless.
tanney SoCal.T
Posted
yes, I was on a 25mg diuretic and low salt diet for 2 years before the gentamicine injections. I still had vertigo several times/month. Since I needed to travel for work I knew I needed a permanent solution to the vertigo. Please keep in mind that 38 years ago the options to relieve MD symptoms were very limited. I do not think betahistine and steroid injections were known then as possible mitigating meds for MD....at least not in the USA.
When did your father first have MD symptoms and what did he do to control them. I'm sure he had the disease for the remainder of his life.
Try not to be discouraged. Live your life fully and don't be afraid to be aggressive in your treatment. This is a bad disease but only you can make it worse than it is. Follow the diet, take your diuretics every day and rescue meds when you need them, think positive, be optimistic that you will be well. The future is bright. YOU WILL SURVIVE THIS! I have, most others on this forum have....and so will you.
One other piece of advice....since you are on 75mg of diuretic make sure you get periodic blood tests measuring your kidney function. As long as those tests are normal there should be no reason to fear long term use. Stay in touch and let us know if we can help with the struggle.
lana56327 SoCal.T
Posted
Hi,
I got MD at age 57, 9 years ago. I also take a diuretic, follow the diet, use diazapam when needed. Like you, I did not have a serious spinning attack once on the diuretic until 7 years in, when I had a few semi-bad episodes of vertigo (not as bad as the first ones). My ENT then did the steroid injections and I've been pretty good since then. I have the same thing as you on occasion, the brain fog, heavy head, queasy stomach, but I take the diazapam (generic valium) and sleep and it goes. The diuretic does affect my kidneys, but my drs keep watch. It also affects my potassium, even though it is a 'potassium-sparing' diuretic, so I take prescription supplements. I don't dare go off the diuretic since it is so obvious that it helps. For the vast majority of time, I feel pretty good. A hearing aid helps with the hearing. My mother and my aunt also had Menieres, though my Mom's has never been as bad as mine. She says that my aunt had it bad, but then it went away eventually. But that was a long time ago. (Mom is 91 and has only a couple of episodes a year. Since she's allergic to the diuretic, she successfully uses Meclizine when she has episodes.) I do think older people generally get it, but it does affect some younger folks. Nasty disease that doesn't get enough attention, as it doesn't 'kill you'. But untreated, it can certainly make you wish you were dead. Thank goodness they have more treatments than they did when my aunt had it 40 years ago.
CrystalC0618 SoCal.T
Posted
tanney SoCal.T
Posted
Hi SoCal. You sound desperate and that is understandable. For us to give you recommendations we need to know a little more about your history.
1. Have you ever had inner ear diagnostic tests via neurotologlist to determine what the cause is of your vertigo? There are many causes beside Meniere's disease that results in vertigo. A proper diagnosis if vital.
2. what treatment if any have you already been through: diuretics? Betahistine? intratympanic steroid injections? gentamycin injections?
3. What meds are you currently on?
4. are you on a salt, caffeine, alcohol free diet?
CrystalC0618 tanney
Posted
CrystalC0618
Posted
tanney CrystalC0618
Posted
Well, you need a lot more then that, Crystal. Are you in the USA? My recommendation is that you see a different ENT.....one that has sub specialty in inner ear diseases....apparently yours does not. Normal treatment for Meniere's disease (once diagnosed as such) is the following:
1. diuretics 25, 50 or up to 75mg per day to pull fluid from inner ear
2. eliminate salt, caffeine, alcohol....this is vital!
3. steroid injections into the affected ear to reduce inflammation and fluid buildup...oral prednisone is not effective in most cases
4. Betahistine of 16mg three times/day
5. Ativan (Lorazapan) for when you feel stress/anxiety. Ativan calms the vestibular system to help control vertigo and reduce tinnitus.
The above protocol will likely completely stop or at least highly reduce your vertigo. If however, you still have frequent vertigo, I suggest you consider having gentamycin injection which will eliminate vertigo (in 95% or so of all patients)
You have to be sure that you see the right ENT....must have subspecialty in inner ear diseases. Call your local hospital of University for referral. Be insistent that the doctor puts you on the above regimen. Good luck and Let us know how you make out