Meniere's Disease

[Dominic1955]

Last night I had my first severe drop attack, occurred with no warning! I felt that I was on a roller coaster! Fell to ground severe vomiting for 40 minutes, crawled to my bedroom in drenched cold sweat! I was finally able to walk at 330am.
My sudden hearing loss started 13 months ago and it was caused by meniere disease.
Any chronic Meniere sufferes out there?
Will it get better with time?

 

[glynis]

Hi @Dominic1955,
I have had it for 12+ years now and it will get a lot better over time even though its progressive.
My tinnitus is sever in both ears and hearing loss also but most of the other symptoms now have gone just the odd flair up and drop attack with tinnitus through the roof and hearing loss.

I know it can be frightening in the early years and each attack or Bach of attacks really cause a emotional wobble.
I'm around most days even if not got my light on.
Keep posting for support.
Love glynis

 

[Dominic1955]

@glynis thank u
Did you consider gentamicin intratympanic injection?
Dom

 

[glynis]

No I didn't.
I take Betahistine and can take up to 6 15mg Cinnarazine if needed.

Love glynis

 

[Dominic1955]

Thank you

 

[Teri]

Dom, hang in there. Please don't get discouraged. @glynis is amazing support and I will try to keep you encouraged as well.

 

[Dominic1955]

@Teri , I was hoping to have cochlear hydrops but last night I had a severe vertigo attack, I was sitting on my couch and it was sudden no warning
I laid on the floor and vomited profusely and had drenching sweats. Lasted one hr and I was able to walk at around 330am.
It's menieres I am not sure what my future holds.
Depressed
Dom

 

[Teri]

From what I understand...everyone presents differently. Some attacks occur rarely while some folks get them more frequently. I have a friend who has had Menieres going on 20+ years and she indicated she only had one drop attack. She has vertigo that came around once or twice a year. She doesn't seem bothered these days.

 

[Dominic1955]

Thank you Teri, just having bad 4 weeks and hoping that I don't continue to have severe vertigo

 

[glynis]

@Dominic1955 ,
Are you on any medication for Menieres?
Love glynis

 

[Dominic1955]

@glynis I am taking diuretics and Xanax to sleep, other medication not available in USA

 

[MattL]

Last night I had my first severe drop attack, occurred with no warning! I felt that I was on a roller coaster! Fell to ground severe vomiting for 40 minutes, crawled to my bedroom in drenched cold sweat! I was finally able to walk at 330am.
My sudden hearing loss started 13 months ago and it was caused by meniere disease.
Any chronic Meniere sufferes out there?
Will it get better with time?

I've had it for 8 years and it certainly hasn't got any better, but I have become a bit more resilient to it. Vertigo attacks are definitely not as severe and consequently I very rarely vomit with it now. The onset of drop attacks has made life very uncomfortable though and have resulted in depressing lifestyle changes. The one thing that always seems a constant is the tinnitus and gradual hearing loss.

 

[MattL]

@glynis I am taking diuretics and Xanax to sleep, other medication not available in USA

You could try the John of Ohio supplement regime. I'm sure it has helped me somewhat. It absolutely is not the "cure" as some people would have you believe, but it may help repress symptoms to a degree.

Some things that have either done nothing for me or made things worse (who can tell) are diuretics and pycnogenol.

 

[Dominic1955]

I've had it for 8 years and it certainly hasn't got any better, but I have become a bit more resilient to it. Vertigo attacks are definitely not as severe and consequently I very rarely vomit with it now. The onset of drop attacks has made life very uncomfortable though and have resulted in depressing lifestyle changes. The one thing that always seems a constant is the tinnitus and gradual hearing loss.

@MattL
Thanks for responding Matt, did you consider surgery to improve your vertigo?
Dom

 

[MattL]

@MattL
Thanks for responding Matt, did you consider surgery to improve your vertigo?
Dom

No way.

 

[light rain]

Can Menieres start or only have HF hearing loss? What little I've read seems to be LF but my pattern seems to fit except for that. Including intermittent ear pain.

I've been trying to stay away from electronics - not sure if it is the scrolling or if it was the weather but I was not feeling well (dizziness,headache).

My T has also changed. It is lower in tone but as loud. Still higher pitched but now not a sound I can seem to find a way to distract. Even driving in traffic with a window open and radio I can hear it. Really bothersome along with a faint Morse code sound going like crazy esp at night. All focused in one ear.

I wonder too if lower in tone T means possibly more hearing loss.

Lynn

 

[Mario martz]

Yea I have come to realize Meniere's has crazy symptoms and not eveyone's is the same. Right before an episode by eyelids twitch. I feel a little strange. Sometimes numbness on the face. And even weird chest palpitations. Hot night sweats cold sweats. Just a variety of crap ha

this sounds like lyme

 

[glynis]

Hi @light rain ,
I have menieres and high frequency hearing loss but do have LF loss now too !
Love glynis

 

[light rain]

Hi @light rain ,
I have menieres and high frequency hearing loss but do have LF loss now too !
Love glynis

Thanks Glynis. I'm not sure why Dr was so quickly dismissive about Menieres. Does the weather seem to affect it at all? The weather got hot and humid and it really seemed to bother me. I get so tired too when this happens.

Lynn

 

[glynis]

Yes for me it does !
Never mind the sun always makes me happy so my ears can just do what they want and I'll carry on singing ...
Love glynis

 

[light rain]

Yes for me it does !
Never mind the sun always makes me happy so my ears can just do what they want and I'll carry on singing ...
Love glynis

I am not a sunflower .

Its the opposite for me.

Take care
Lynn

 

[Gin]

this sounds like lyme

Well I begged my doctor to do a Lyme test. He finally did after tons of resistance and it came back negative

 

[Mario martz]

Well I begged my doctor to do a Lyme test. He finally did after tons of resistance and it came back negative

there are a lot of cases of false negative, just saying! D:

 

[glynis]

Ears so loud and so sick, not sure if Menieres flair up .
Doped up on strong antihistamines for Menieres ..hope tomorrow is a bit better than today.

 

[Gin]

there are a lot of cases of false negative, just saying! D:

Yea I know. I went to my primary today. I had a bad spell on Sat. I'm not convinced it's menieres. It felt more like a seizure. Moves up and down my body numbing my muscles making them weak. I did video tape my eyes during it. They jumped around some. I was dizzy but still not convinced. Had really bad chest pains and could hear the noise in my head blarring too.I had a HUGE headache after and slept alot. My primary did an EKG it turned abnormal. I have been sent to a cardiologist to have a stress test next month. So no peace of mine for me just more questions. I brought up Lyme disease and got the whole its rare in Tennessee etc. She took blood work and is sending me back to my neurologist to possible have another brain MRI. The last one was three years ago. Oh and also I broke out in a circular rash all over my body. I figured it was hives. She said no not hives. Not sure what it is. More concerned with the heart thing than the rash. I know it will be hard to sleep once again.

 

[Gin]

Well I guess I'll jump in here too. I was diagnosed a couple of years ago. I still doubt my diagnosis. I do have low frequency hearing loss in my right ear and have tinnitus that comes and goes. I get hypercausis that comes and goes too. I get the vertigo every now and then too. Here's question, I do have some symptoms that I don't think are Meniere's related. Like chest pains, strange rashes, numbness on my face, tingling feeling on side of my head. I went to the doctor yesterday. I do have an abnormal EKG and am scheduled to do a stress test next month. She thinks (my primary) that these may be more seizures than Meniere attacks. I did do the balance testing at Vanderbilt where they said two organs in my right ear did not respond. When asked what might cause that I was told Meniere's disease. I did see a world re-known specialist who lives here in TN. He had no bed side manner and was just like yea you have it etc. When I told him about the numbness on my face chest pains etc. he said no those are not Meniere related don't know what that is. Very helpful right. Anyway I guess my question is when ya'll have "episodes or attacks" how does it feel to you. To me, my warning sign is I get real cold I hear the loud blarring noise in my ear I get dizzy I feel myself shaking internally then I feel this wave that goes up and down my body. my muscles get weak. Sometimes I lose bowel control. My eyes kind of roll a little. I may go through this about 3 to 4 hours feeling coming and going every 10 min or so. The next day I have a huge headache and am tired. I would really like anyone/someone's imput on what they think.

 

[Mario martz]

Yea I know. I went to my primary today. I had a bad spell on Sat. I'm not convinced it's menieres. It felt more like a seizure. Moves up and down my body numbing my muscles making them weak. I did video tape my eyes during it. They jumped around some. I was dizzy but still not convinced. Had really bad chest pains and could hear the noise in my head blarring too.I had a HUGE headache after and slept alot. My primary did an EKG it turned abnormal. I have been sent to a cardiologist to have a stress test next month. So no peace of mine for me just more questions. I brought up Lyme disease and got the whole its rare in Tennessee etc. She took blood work and is sending me back to my neurologist to possible have another brain MRI. The last one was three years ago. Oh and also I broke out in a circular rash all over my body. I figured it was hives. She said no not hives. Not sure what it is. More concerned with the heart thing than the rash. I know it will be hard to sleep once again.

Gin im sorry that you are having a hard time!!
i hope you get more answears soon, please keep us posted.
you are in my prayers.

 

[Gin]

Oh and I broke out with a rash all over my body. They were in the circular form. I thought they were hives. My primary says no. But had no explanation for what they could be.

 

[Gin]

Gin im sorry that you are having a hard time!!
i hope you get more answears soon, please keep us posted.
you are in my prayers.

Thanks for the prayers. Well I called my primary Thursday morning. I had broken out all over my body and was feeling horrible. She told me to head to the ER. So I went. They did a full cardio workup. Everything came back good. The EKG was abnormal and was told to follow up with my cardiologist. Which is already scheduled for the 19th of July. She could not figure out what the rash/welps were. She said it was not hives. Possible a reaction to the Valtrex I started taking about a month ago. But she was still unsure about that. She gave me Benadryl and some stuff for acid reflux. When I got home I started thinking about the corolation between the hives and the Valtrex. I did some research and found that Valtrex is made up of Hydrochloride. What I am highly allergic to. It started to make sense. Last time I had the tingling of the face and the side of my head plus the seizure things it was when I took Hydrochloride as well. Needless to say I am relieved. I quit taking it immediately. Took the Benadryl and the Pepcid AC stuff and started feeling better. The hives are almost gone today. YAY. I am a little upset with my Neurologist though. He knew I was allergic to Hydrochloride but prescribed it anyway. So it boils down to, I have Meniere's but the attacks I experienced were not Meneiere's related more seizures due to that medication. I possibly have some acid reflux stuff going on. Which I seriously don't doubt. Cider beer, wine, spicy foods, etc. My new primary, which let me say, is GREAT. Finally a dr who listens and follows up, wow. Has talked about keeping me on a acid reducer med for a few months. If it doesn't get better, doing a scope of the esophagus (which doesn't sound pleasant ha) and checking things out. At least I feel as if I have some answers. Guess, I will get back on the Lipoflavnoids today, to get the tinnitus back down. It works everytime. They are so expensive though. After about 4 days of taking them though, the sound leaves completely. I should take them as a preventative. But I'm stubborn. After the sound is gone for a month or so I stop for about 3 weeks. Then it comes back. Well, I guess I can say, Meniere's sucks, but Meniere's plus seizures and unknown stuff was even worse. I feel better now that I am back to just Meniere's. ha

 

[Mario martz]

Thanks for the prayers. Well I called my primary Thursday morning. I had broken out all over my body and was feeling horrible. She told me to head to the ER. So I went. They did a full cardio workup. Everything came back good. The EKG was abnormal and was told to follow up with my cardiologist. Which is already scheduled for the 19th of July. She could not figure out what the rash/welps were. She said it was not hives. Possible a reaction to the Valtrex I started taking about a month ago. But she was still unsure about that. She gave me Benadryl and some stuff for acid reflux. When I got home I started thinking about the corolation between the hives and the Valtrex. I did some research and found that Valtrex is made up of Hydrochloride. What I am highly allergic to. It started to make sense. Last time I had the tingling of the face and the side of my head plus the seizure things it was when I took Hydrochloride as well. Needless to say I am relieved. I quit taking it immediately. Took the Benadryl and the Pepcid AC stuff and started feeling better. The hives are almost gone today. YAY. I am a little upset with my Neurologist though. He knew I was allergic to Hydrochloride but prescribed it anyway. So it boils down to, I have Meniere's but the attacks I experienced were not Meneiere's related more seizures due to that medication. I possibly have some acid reflux stuff going on. Which I seriously don't doubt. Cider beer, wine, spicy foods, etc. My new primary, which let me say, is GREAT. Finally a dr who listens and follows up, wow. Has talked about keeping me on a acid reducer med for a few months. If it doesn't get better, doing a scope of the esophagus (which doesn't sound pleasant ha) and checking things out. At least I feel as if I have some answers. Guess, I will get back on the Lipoflavnoids today, to get the tinnitus back down. It works everytime. They are so expensive though. After about 4 days of taking them though, the sound leaves completely. I should take them as a preventative. But I'm stubborn. After the sound is gone for a month or so I stop for about 3 weeks. Then it comes back. Well, I guess I can say, Meniere's sucks, but Meniere's plus seizures and unknown stuff was even worse. I feel better now that I am back to just Meniere's. ha

Gin, im super glad you found a new doctor!!!
sometimes i dont understand why doctors are so cruel and would prescribe things that are bad for you.
i hate it, i hope this works better for you.
keep us posted, btw what do you mean with the sound gone?? does your tinnitus goes away completely?
you dont listen to it even when cover your ears?
would like to know.