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02/03/2009 04:42 PM

Meniere's Attacks Won't Let Up!

juliaann
Posts: 31
New Member

Hi Everyone,

I have psoted here before. I have been following up with an ENT docotor at a major medical center. My testing has been inconclusive for Meniere's b/c I have no documented hearing loss but the balance testing shows central nervous system issues. My Meniere's attacks are textbook but the ENT tells me it might be migraines??? What the heck? I have no headaches. I am soooooooooo sick of these attacks. About once a week, bam! vertigo, vomiting. lasts for 6-8 hours. I have been hospitalized for rehydration. I can't live like this! I have a busy, busy career. I take Antivert as needed but it makes me too sleepy to function and I take a calcium channel blocker and follow a low salt diet, exercise a lot and no caffeine or alcohol. Any ideas for me? Please help! Do you know of a good ENT in Chicago? I am thinking of getting another opinion. Thanks!

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02/09/2009 07:24 AM
juliaann
Posts: 31
New Member

Anyone recommed a good ENT in Chicago?

10/01/2009 09:20 PM
Kali13
Posts: 4
New Member

HI

you need to see a nuerologist to find out if you are having vertigo caused by migrains. you do not necesarily have to have pain with these migrains.

I ahve had Meneires AND migrains for a year now. its very difficult to know what is causing the dizziness at any given time. a low dose of Kolonopin taken at bedtime has really helped calm the nerve in my ear down (thus the dizziness) and I am goign to be starting a low dose of Topomax (for migrains).

it is all trial and error unfortunatley. You might also want to get a blood test for HSV. Herpes Simplex Virus. it can attach to the nerve in your ear and cause vertigo. im cut and pasting a posting from another forum that might help:

"I am a Meniere's patient since 2005. When I was diagnosed, I learned from the ENT Dr. that Meniere's is 'a fight between my immune system and my middle ear '. I asked him what was the fight for, then he answered that if he knew, he would have found the cure for Meniere's disease.

Struggling for 3 years now, with increased symptoms in variety and intensity, I finally started a research and experiment with an antivirus called Acyclovir. Since all of my symptoms improved, I went to my PCP and demanded a test for HSV. I came out positive, and I'm presently on treatment for HSV. My Meniere's attacks have stopped.

No more vertigo, ringing in the ear etc.

It makes sense, because if the virus caused an infection in, or around my middle ear

that explains the fight, which is Meniere's disease. And when the virus becomes inactive, Meniere's goes on remission. There for Meniere's is not a disease, but a symptom of a disease."

I hope some of this helps you

Kali


11/17/2009 12:52 PM
Lynne4300
Lynne4300Posts: 4
New Member

Hope you get some relief soon. I take Xanax when my symptoms flare up, such as increased dizziness or visual problems. The xanax suppresses the vestibular system and usually can prevent it from becoming full blown vertigo/vomiting. In that event, I then use phenergan, as a last resort.

In early Meniere's stages the hearing loss is not alway evident, but later the hearing losses will be in the lower tones, unlike the normal aging hearing losses (which is the higher tones).

I also have MAV (migraines associated vertigo) which can happen WITHOUT having a migraine.

Meniere's is considered an autoimmune disorder, and often people will discover that food causes many of the increased symptoms.

Good Luck, it takes a long time of trial and error to find what helps. I found most of the answers from others who have Meniere's, not the doctors. Unfortunately, many of us lose most of our hearing before we are diagnosed, as there are some treatments that can help preserve the hearing.

I think it is fascinating that the medical field has been researching the transplantation of the "hair cells" which are necessary for hearing. In Meniere's disease the hair cells are non functioning.

I feel stuck between two worlds, the hearing and the non hearing. I don't qualify for cochlear implants (hearing in one ear yet), I am not deaf.........but I don't hear well enough to follow conversation in a group. It is quite frustrating at times, but I am trying to make the most of it, and try to stay in the mainstream of things as long as I can.

Smile


11/17/2009 01:10 PM
Kali13
Posts: 4
New Member

thank you for your reply : )

i recently started a very low dose of prozac (the contents of 10 capsules dissolved into cranberry jiuce. one tsp a day for a month. 2 tsp a day for a month, then a tbls for a month. this is so level out the seratonin levels in my brain for the Vestibular Migraines. I stated also taking the lowest dose of Atavan & antivert at bedtime. this seems to be helping somewhat so far.

i really appriciate you answering with your experience. these forums are the BEST for help people! : )

Kali


11/17/2009 04:18 PM
Steph9700
Steph9700  
Posts: 59
Member

I take Midrin for the headaches when one starts to come on and that tends to help with them at least more than anything. For the autoimmune issues, my Rheumatologist has put on an antimalarial drug called Plaquenil that seems to be helping some with the Lupus but not much else. Maybe I can still have a little Xanax here or there for some of the nerve irritation/ stress issues, IDK, but hopefully before too much longer they can all agree on the same thing along my treatment line. I find out tomorrow if the ortho is going to do knee replacements on me or not then Friday morning I have to follow up with my regular gp about my emergency room visit last night, seems my pancreas, gallbladder and appendix are inflamed or irritated or something along those lines according to the blood work they did in the hospital last night. Having fms doesn't help with any of it either, makes it worse because I want more pain meds than I need, I have started learning breathing exercises to help calm me down when I am in these situations of unbearable pain. I may go to a partial day program that my therapists office offers on stress managament to learn better breathing/ relaxing techniques.

02/28/2010 07:44 PM
Kali13
Posts: 4
New Member

I asked my ENT to give me the test for HSV and she told me that nearly every one's test comes back positive because of the chickenpox virus. so she said the test doesn't really tell you anything other than you have been exposed to the virus at some point in your life. It doesn't mean its attacked to your nerve. IS there a SPECAIL test that she or I do not know about to test for this?

she asked me if i wanted to experiment and TRY the Acyclovir, but she said that there are many side effects. so i didn't do it.

Can you give me more info please.

PS: the Topamax was a disaster, and the prozac hasn't done anything. the only relief i get if from the antivert & Lorazepam combo.


03/01/2010 07:11 AM
Kam
Posts: 7
New Member

Hi

So sorry to hear you are so ill...

I have been going to the Chicago Dizziness and Hearing Inst.; it is on Michigan Ave. I see Dr. Cherchi; he and Dr. Hain are listed as the best in the Midwest. I used to see Dr. Micco at Northwestern, but decided against any injections or surgery so he really couldn't do anything for me.

As you may know, they don't know what causes Meniere's therefore there is no 'cure'. I take Lorazepam when I feel an attack coming on - it does not stop it, but sometimes lessens the severity and length. I also take Phenergan suppositores to ease the nausea. I just read that Black Cohash may help, too, but I have not tried that yet.

I hope you find a way to live with this. It is frustrating; took me 6 years to get a diagnosis and I have hearing loss and all the wretched accompanying symptoms.

Best Wishes!

Kam


03/02/2010 08:13 PM
pbaker
Posts: 160
Member

i know you wrote a year ago....

i went to univ of chicago.

he seemed to know his stuff but took a week to get a call returned. i have heard great things about timothy hain from northwestern.

how has it played out for you?


09/13/2010 06:58 AM
carolinablueeyes
 
Posts: 19
New Member

Julianna,

You need to be very careful. For the longest time, they suspected taht I had MS and not MM. MM and MS symptoms mimic each other in alot of ways. You need to be a seen by an otoronologist (I think is what it is), it's a subspeciality in ENT field.

The issue with the hearing loss is that your hearing will flexuate....you will be good then bad....but they indicate when your having the worse of the spells that is when your hearing is getting damaged,s o when/if you drop out, you call your doctor and get your hearing tested within 24 hrs of the drop if possilbe.

It took 20 years for me to get seen and diagnosed, but when I finally got to the specialist, he initially indicated to me that yes, he did suspect that I had it and started me on treatments right away.

To do yourself better...start reducing your sodium intake to about 1,200 mgs a day. reduce your stress and keep diaries of what you eat and how you feel.

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