FED UP WITH MENIERE'S DISEASE
Posted , 5 users are following.
hiya my names christine im 49 ive suffered with my left ear since my early 30s i was diagnosed with meniere's disease october 2019 its been the worst year ever i've had numerous amounts of attacks some worse than others and last anything from 4 weeks to 6 weeks then i might be ok for one or two weeks . i was put on betahistine 16 mg x 3 a day to start with in october 2019 but continued to have severe attacks of vertigo with sickness so another appointment with specialist in march 2020 upped meds again to 32 mg 3 times a day betahistine but still months go by and still having severe attacks of vertigo . so a phone appointment with specialist in june 2020 upped meds again 48 mg of betahistine 3 time a day !! feeling so fed up by this point so after 3 month again of high dose spoke with specialist again in september 2020 now upped meds to 64 mg of betahistine 3 times a day !!! dunno how much longer i can cope with this feeling so fed up as its all my life revolves around i never know how im going to feel i can wake up of a morning and feel ok by lunchtime i can be on the floor vomiting and unable to do anything for the rest of the day having to just go to bed and hope that it passes i've had a solid 3 days of having attacks and vomiting cant even stomach my meds right now !! so now i'm just left again to suffer for another god knows how many months he has said we will try steroid injections next but i have been reading up on them not sure if its going to be enough anyone out there had any injections ? and if so how effective were they ? im just so fed up with this disease now i just want to feel normal again , i hate living like this i cant even drive any more 😦 most days this disease disables me be nice to see some light at the end of the tunnel but i cant as yet !!! please anyone give me some hope that this will get better !! xx
0 likes, 4 replies
anthony22722 christinegall
Posted
Christine,
Start researching the gentamicin injection for meniere's disease. The success rate is around 95% to eradicate meniere's forever. There is a trade off. You may experience hearing loss in that ear and you will lose balance from that ear. Your good ear has to take over the balance function. I've had the injection and my balance is coming back. Do your research online. The more effective doses in treating meniere's have come over the past 5 years. Lower doses work best but may require an additional injection. I did not lose any hearing after my one shot. Weigh the factors, the injection isn't for everyone but it should put an end to your torment. Wish you the very best.
Gurung christinegall
Posted
Hi Christine I am sorry to hear what you are going through. Seems like we had our meniere's disease around the same time sept 2019 for me and we also share the same symptoms. Vertigo attacks for days throwing out until i got cut in my stomach, had 2 b rushed to the ane and lot of hearing loss in my right ear. i had one steriod injection in dec 2019 and it didnt work. i kept having these attacks. However after almost 1 year ie since sep. 2020 thank you god i havent had any attacks. I however travelled abroad since the NHS is horrible in UK and had 4 sets of steriods injection in feb. 2021 even though I didnt have any more attacks, hoping it would improve improve my hearing, but it didnt. So dont worry your attacks might go away if not try steroids injection first then gentamicin injections. Good luck I know this menieres is such a horrible disease but you will get through it trust stay strong.
g93166 christinegall
Posted
Hi Christine, whenever anyone says they are suffering from MD my heart goes out to them. I havent had it long - the first attack was March this year - and I get what I call minor episodes of dizziness about 2/3 times a week, with a severe attack about once every 7 to 10 days - although this week in the last 5 days I have had 3 attacks. Mine last about 6-9 hours. I have been on betahistine (16mg 3 times a day), almost since it started, but if i'm honest I am unconvinced that it is doing anything. I had a steroid injection, but this did nothing. I am waiting for my next appointment with a consultant, which I think will be the gentamicin route. After research I cut out caffeine and as much salt as possible, but again, i'm not really sure it's made any difference, in fact if anything the frequency of my attacks have increased. This really is such a debilitating condition and it's stopped my life in it's tracks. I have spent hours and hours on the web reading study after study, and it's amazing how little understood this is. The one thing that really stands out is how differently it effects people, and varied the results of treatments are. I'd like to promise that one day it will all be fine, and it is very possible that may happen - someone I worked with, it disappeared virtually overnight, and there are many stories of this happening. All I can say Christine is that hang in there - you arent alone, and when you need to chat, find us here and we will listen. Try and find something that brings you comfort and hang on to it - I am lucky that I have a wonderful partner, who has helped me put my bad days in to perspective, although the occasional piece of cake also helps....
g93166 christinegall
Posted
Just noticed in your post Christine that you didnt mention being prescribed Stemetil for the vomiting - if you havent, get on to your gp and get them to look at this, as this is one thing that I do think works for me. It doesnt help the vertigo, but does stop me throwing up - but you do need to take it as soon as you think you are going to have an attack.