Not diagnosed with Ménière's

Vicky - those are the medications I am taking as well.  I went off them for 3 months and felt really good and only had small dizzy spells.  This week I got a wopper and went back on the meds.  I was diagnosed while training for the Chicago Marathon 3 years ago.  My hearing in my right ear is about 70% gone.  My episodes are so friggin random I just don't know what triggers them.  I try to watch what I eat and I exercise, but after I have an episode I am just exhausted and spend the next 10 hours sleeping.  I just want to curl up in a hole and be safe.  So scary.  I just joined this group.  I don't know anything about these steriod shots, but don't think at this point I cold be a candidate. 

It is !!! You feel a phony but suffer inwardly. I can remember being so depressed as there is no cure and you never know when an attack is going to occur.

I must say mine has got a lot better these last few weeks and I'm beginning to feel normal again.

Don't despair it will settle down. Vx

Hi,

Thank you so much for your kind words. Yes you are so right, it's hard to remain normal when you feel so ghastly! I hope you are well soon! I am so glad I found this forum as I find is so enlightening and informative. Plus I don't feel so alone with these horrid symptoms, knowing that others are going through this also gives me strength to take each day as it comes. S.

Hi,

Thanks for all your words of wisdom. Yes I was taking serc 16 (16mg three times a day) which is Betahistine but was taken off them as I was so ill and couldn't move off the sofa for two weeks. I had fluid in my ears also so was taking pseudoephedrine three times a day. Might have been the pseudoephedrine that made me so ill. I will ask my dr asap. At present I am taking buccastem buccal tablets, 1 melted in upper lip twice a day. I still am very dizzy but nausea isn't so bad.

I have learned the hard way not to put head back or ly flat on my back, or bend over suddenly or turn my head too quickly as these movements leave me ill and exhausted for hours and sometimes two days afterwards. I still have very sore headaches mainly at the back of my head but sometimes around my temples. My ears are both very bunged up but no fluid present at the momemt. Though I have humming/buzzing in my ears that is driving me nuts esp when the house is quiet. The thirst I think is coming from the meltnin the mouth tablets which are woeful but work.

I was started on the same dose of betahistine as you (the max recommended in the British National Formulary!!) and had 2 or 3 bad attacks before things calmed down. When I got to the consultant, once the diagnosis was confirmed, my dose was tripled to 48mg tds and stayed on that until 6 months had passed without an attack. I then weaned off gradually and had a total of 21 months remission. Currently following a threatened relapse I am taking 64mg tds and hoping to come off it again in a couple of months.

I am assuming each acute attack lasts less than 24 hours. Current medical 'wisdom' is that if longer then not Meneire's! Another possibility is BPPV.

The trouble with Buccastem (and Stemetil) is that it is prochlorperazine, an antipsychotic drug which is very sedative and will keep you feeling tired and sleepy. I would try to only use it when you feel an attack threatening. Meanwhile try to get back on Serc which is very safe with very few side effects but will need time to work..

Hi,

Thanks this is very helpful. Yes, an attack generally last anywhere from 10 mins to 20 sometimes longer and sometimes shorter. The effects of the attack are what last a day or two. Extreme fatigue where I actually have to ly propped up and sleep immediately for a couple of hours sometimes longer. I wake feeling weak, wobbly and sick. It's hard to function and even little chores like laundry seem to feel like huge feats to complete. I have the cold at the minute and feel more horrid than usual. I have made another Dr app for 21st Dec as that was the closest app I could get. I will ask about going back on serc 16 again as I am worried about the noise in my ears and possible tinnitus. When I have an attack I feel my ears are more bunged up and my hearing in both ears isn't as good. I am 39 so am a bit worried about my hearing and long term effects. I also find a lot of noise irritating and hard to handle as my ears seem so sentisive. I have started wearing warm hats whilst outside as I feel less sensitive. The last time I got my ears checked they were free from fluid and healthy looking so at least I don't have an infection.

Oh don't they just leave you so exhausted.  My body just fights fights and fights these spells and I feel so sick.

Your post gives me hope, where did you find out that 70% of sufferers recover? I've only read this desease gets worse and there is no cure?

Thank you 😀