Wednesday, July 30, 2014

Latest comment on my life and menieres disease July 30

This is from Jeff...

 My tinnitus (and hearing) is fairly stable at the moment but I was told during a hearing aid maintenance visit that my bad ear is full of wax. I put this down to the effect of wearing the aid. The audiologist was unsure about the best way to remove the wax given my Meniere's Disease - she wasn't sure whether syringing was advisable.

I wonder whether anyone else has experience of this. 

Friday, July 18, 2014

latest comment on My life and meniere's disease

from Laura Wachala...

Hi. I've recently started suffering severe vertigo attacks (two in the last 36 days) and was originally told by my ENT's Physician's Assistant that I had Meniere's disease based off of hearing tests, MRI and my symptoms of vertigo, tinnitus, etc. I was put on a diuretic daily and given Prednisone for 10 days after each attack. Today my ENT, the doctor, told me I do not have Meniere's because I've not responded to the Prednisone and diuretic with low salt diet.

While I've not read every single post on this blog, I think I've read enough to believe this may not be correct. I hate that all of you have had to suffer the effects of vertigo, and all of the other symptoms, for years, and I do not want to go down this trial and error path. I've doctored with this ENT for about 10 years for chronic ear infections, tubes in my ear, etc, and have trusted him up until now. Now I am starting to have my doubts. If anyone has any advice for a newbie, I'd really appreciate it. First hand experience is huge in my book, and heaven knows you have all experienced quite a lot. Thank you.  

Wednesday, July 2, 2014

Serc, betahistine and Meniere's comments

First comment…

I contracted Meniere’s about 8 years ago after having no illness my whole adult life and that includes the flu. I admit the first couple of years were bad with episodes every three or four months of violent vomiting, tinnitus, vertigo and hot flushes. Since then and until recently I have had the occasional bouts of vertigo and horrid hot flushes but thankfully no vomiting.

Recently I have been having short sharp spells of vertigo which made me consult my general practitioner who put me on SERC16 three times a day. I take no other medication other than something to counteract reflux. The Serc16 kicked in after a few days though I find I do have a headache so I am now cutting the does to two a day. But I am feeling much better. I am very wary of the cocktailing effect of taking several drugs and I have discussed this with academics who admit they are not fully sure of the pharmo-dynamics of cocktails of drugs

Following the advice I initially received from the ENT specialist I cut out salt and coffee and fortunately I have a relatively stress free life though sometimes that is hard to maintain. I do have deafness in my left ear but that is tolerable. I find however I use the sub-titles on TV a lot. I do not enjoy films with a lot of flashbacks and camera movement and close my eyes when I see this happening

But in the end what I am saying is somehow I survive. My family and friends understand and that is a help

I do not suppose my notes help but what I wanted to say is we sufferers of MD are out there - we wave the flag

2nd comment about serc

Successfully have been taking Betahistine ( Serc, Betaserc....) 16mg, or sometimes 8mg as needed, since 1993, in Israel.
When we moved to USA in 2005 I was also shocked that this medication is not available here.
My doctors, from STANFORD UNIVERSTITY CA, family doctor and ENT did not know and did not hear about this medication at all.....
As all of you I have to get it from any other sources... very sad...
Hope FDA approves it.

Monday, June 23, 2014

recent comments on my life and meniere's disease June 23

From Karen B

Hello! I am so grateful to have found this community! I have been symptomatic since 2008. Aural fullness, dizziness, vertigo and nausea. Nausea is the worst. Vigorous exercise brings on an attack for me. I have been out of work since 2011 due to the severity and frequency of nausea and dizziness.

I started Meniett device treatment today. Will let you know how it goes.

From Jijo

I still have low hearing on my left ear. I have high pitched tinnitus in my left ear. The right is kind of okay except on a bad day that comes once in a while. I'm still able to keep my job and my family is well fed so far. I don't have vertigo 'attacks' any more. Well, there are episodes when I get wobbly but it's not the merry-go-round that I'm so very scared of. I manage those short spells by taking half a tablet of Stugeron 75 (cinnarizine). Stugeron is not available in the US, so I get it from India. I was prescribed alternate medications here but none of them worked for me. it's also way cheaper for me to get it from India. :)

Sleep continues to play a vital role on my balance and hearing. I still use Melatonin occasionally to correct my sleep cycle. No sleeping pills so far even though I got a bottle of prescription pills with me. Never felt comfortable enough to try them.

I've come to the conclusion that my MD is a result of my total disregard for sleep, right from my college days. I had ignored the warnings that my body was giving me and now paying a very high price. I consider lucky to have survived so far. Just keep it between us, I had even toyed with the idea of an unceremonious exit at one point. The MD was totally unbearable. Also lucky to have found some fellow Menieres like on this blog. Hope my lucky streak continues.

Friday, June 13, 2014

latest comment from my life and menieres' disease june 13

from Jenn Z

i had my beautiful baby boy 2 months ago. My pregnancy was wonderful. My menieres was at bay but that was probably due to the fact I was already at the burn out stage. I think I never felt better while pregnant since I dx with MD.  

Tuesday, June 10, 2014

latest comment my life and menieres disease June 10

New comment from My life and Meniere's disease

I just recently went to an ENT, specializing in Meniere's disease. He said that he will not see pregnant women, due to the fact that there is really nothing to be done for them. This makes sense because of fluid retention, the more weight a person has the more water they retain. Hence, a big symptom of Meniere's!
hope this helps you !

Sunday, June 8, 2014

Latest comment for my life and Menieres disease June 8

Latest comment for my life and Menieres disease...

Hi:I am 52 years old and I have had this menieres in both ears cents I was age 23 and it totally disabled me. I can't drink caffeine I can't eat salty foods and I can't have that much sugar or I get real dizzy and sick.I'm death in one ear and going death in my other ear.I have surgery once every three months so they can put tubes in.And I definitely can not sit in the sun because I will have a dizzy spell. If I do to much at once in one day I am so sick I end up staying in bed for weeks at a time I hate this sickness.I was hoping one day it would get better but it got worse.I can always know when its going to rain and I know when there is a heat wave coming.And it has no mercy on me when I think I'm going to have a great day it slaps me in the face I mean the dizziness hits me so hard it knocks me off my feet literally!! I am on the floor and no getting up until someone come and helps me up.So I am very careful where I go what I do and what I eat and drink