Just got diagnosed for Meniere's Disease
Posted , 7 users are following.
Hello.
I was just doing some research and found this support group and thought I should join.
I recently got diagnosed for Meniere's Disease. The past year I have been experiencing very full ears and ringing and some very mild vertigo. At first I ignored it as I thought it was allergies. But the vergito started to get bad. I would be vomiting for hours. It was horrible; the uncontrollable vomiting, sweating, the feeling of foating and spinning for hours was not fun. It would come out of no where. It was very tough on my wife I am a stay at home dad and she had to come home from work quite a bit because I was laying on the bathroom floor unable to take care of our son.
My doctor referred me to a specialist where I got the Meniere's Disease diagnosis. It was a strange feeling. On one hand I wanted a diagnosis to know what I was dealing with. On the other hand I did not want anything to be wrong with me.
But here is the real kick in the pants. I was born with no hearing in my right ear and mild hearing loss in my left ear. Since I had these vertigo attacks my hearing in my left ear went to mild hearing loss to moderate to severe. The doctor told me there is a very high possibility that the rest of my hearing will be lost.
The silver lining is that I will be able to get a cochlear implant when the time comes.
So that is where I stand. Going back to the hearing specialist next week, it feels like my hearing got worse since a few months ago when it was last checked.
Sorry for the rambling and poor grammer, just felt like I needed to type this out.
0 likes, 10 replies
JMJ Guest
Posted
Dear Jeff,
Wecome to the forum, although I'm sorry that you had a reason to join. I think you'll find lots of support and information from this group. MD seems to come in 101 different flavors, and I think they're all represented here!
I know exactly what you mean about the ambivalence around getting a diagnosis. But now at least you'll have access to medications that will help you get through your days and perhaps minimize the hearing loss in your remaining "good ear".
Are your symptoms well-controlled on oral medications? Have you and your doctor discussed intratympanic steroid injections?
I wish you all the best. And again, welcome to the forum.
Sincerely,
J-
Guest JMJ
Posted
I am taking teva betahistine 24mg twice a day. It seems to be helping. I still get vertigo but it is not nearly as severe as it was before.
The doctor did talk about injections if the medication did not help control the symptoms.
JMJ Guest
Posted
Hi Jeff,
I'm glad to hear that you're getting results. If in the future, you find that the betahistine simply isn't doing the trick, I just want to tell you that I've had extraordinary results with the steroid injections. They have eliminated my vertigo, nausea, vomiting, dizziness, "floating" and brain fog, and without any negative side effects. It was a gradual process: With one injection of 10 mg. Dexamethasone every month, it took several months before I experienced complete cessation of symptoms. But for me, it was well worth the wait.
Wishing you only the best of luck!
Sincerely,
J
barry61472 Guest
Posted
Jeff,
Get to an ENT specialist asap. Especially one experienced in diagnosing and treating Ménière's. It sounds like you have it bad. Don't delay!
Barry
tanney Guest
Posted
Hi Jeff. Thanks for sharing your Meniere's "journey" with the group. I know that just being able to talk about it with others who are or have been going through a similar journey can be helpful. I have had Meniere's Disease for almost 40 years. I got it in my left ear when I was 32, and I was just diagnosed with it in my right ear last August...so I have bilateral MD. My advice is to see an ENT who specializes in inner ear diseases if you have not already done so. That ENT will administer an audiogram of your hearing to see if the hearing loss you have recently suffered has occurred in low decible ranges. The ENT could also administer other dianostic tests to confirm MD. Those test and your symptoms will clarify for sure if your illness is in fact MD. Assuming that it is MD, some of the things you will learn from that ENT and also from reading comments in this forum is how best to cope with the illness . Some of the things you can do right away that might mitigate vertigo, tinnitus and ear fullness are:
1. stop using salt, caffeine, alcoholic drinks (very important)
2. take a diuretic (water pill) to eliminate fluid buildup in the inner ear
3. take a sedative like Ativan which helps calm inner ear nerves and regulate vertigo "message" from reaching brain
4. Two benign treatments that ENT could recommend if above does not relieve the vertigo would be steroid injections into the affected ear and/or a medicine taken orally named Betahistine.
5. If the above are not effective the next step is usually a Gentamicin (antibiotic) injection into the affected ear. This is very effective in eliminating the vertigo becaue it destroys the balance nerve in the affected ear and thus eliminates the conflicting signals to the brain that generates vertigo. This proceedure, though, can cause additional hearing loss and some balance difficulties.
I had the Gentamicin injection 35 years ago and it completely eliminated the vertigo. I still have fairly good hearing in that ear after all these years. I'm now taking Betahistine for the other ear recently diagnosed and it seems to be effective in reducing the ear fullness and tinnitus in that ear. I'm on a low dose and will be increasing it when I see ENT next month.
Again, thanks for sharing your story. We all wish you the very best. Let us know how things go when you see doctor.
Try to be optimistic....life does go on with MD. With the right treatment plan you should be fine.
Guest tanney
Posted
The lifestyle change is very hard. I had a few beers last weekend and i had a very intense vertigo episode. I already cut back but after last weekend, I am going to complete cut it out. Also going on a low sodium diet and not drinking my morning coffee is hard to get use to.
I am already taking 24mg 2 times a day of teva betahistine. It seems to help. I get slme vertigo but not nearly as severe as it was (minus last weekend but i think that was to the 2 beers i drank that afternoon)
I did not know about the water bills. Will look into that for sure.
Thanks agian for the information. Really appreciate it
donna16710 Guest
Posted
Guest donna16710
Posted
Thanks for the message
Lizg2 Guest
Posted
Hi Jeff, your situation is very similar to mine. I went deaf in my right ear when I was a baby and had very
Good hearing in my left until about 18 months ago when I developed tinnitus, hearing loss and was diagnosed with Ménière's disease. I'm a single mum of and have been really struggling with this. I was also told I may need a chochlear in the future. How do you cope and stay positive?
christine_35821 Guest
Posted
I know how you feel. I had already lost 50%of my hearing both sides and my left ear is deteriorating. Serc8 helps stop the spinning and I've been able to carry on playing squash and riding throughout. Loss of hearing is daunting though and I probably won't qualify for a cochlear if I'm only profoundly deaf on one side. Keep battling. It's not fatal I tell myself.