Acute unilateral vestibular dysfunction

[Jojo313]

Hi all, I'm new here, been given a leaflet by the hospital , I've finally been diagnosed with the above after suffering the loudest ( until it spikes off the scale) tinnitus in both ears for nearly 7 months now, also have difficulty walking and look like a drunken sailor, now that I have been diagnosed does anyone think my brain will stop this awful noise, I'm told tinnitus is the brain telling us there's something wrong? I know I can't go on much longer like this, haven't had a decent nights sleep in all that time and gone from a carefree happy woman to a life of unbelievable screeching at volumes I didn't know existed in both ears and a generator type noise in right ear as well, not being able to walk without staggering isn't helping either, I'm sure my desperation is no different from anyone else's , just need hope?

[LuverlyLucie]

Jojo313. Massive hugs. There is always hope. Have you been given anything for it since your diagnosis? I think a local support group may be helpful. You are an amazing, fabulous person and one tough cookie and don't let this horrid condition take that away from you. Take care. Love Luverly Lucie xx

[Jojo313 in reply to LuverlyLucie]

Thank you Luverly Lucie, I not on any medication , I was on betahistine, cinnazarin and had propanadol for a short time, none of them helped so hospitalization me off them, incidentally I apparently have exceptionally good hearing so wonder if that's why the tinnitus is so loud? I have no hearing loss at all.

[Xene]

Yay Jojo313, welcome to the forum. There's always hope although as you already know there are times when it's very difficult to find it! The people on here have a wealth of experience and will be able to relate to your desperation. Although no one will be able to stop your T they will be able to tell you what devices have helped them to distract them from their T. What works for some doesn't work for others so it can be a case of hit and miss. Hopefully your audiologist will also advise you.

I think you'll find that your high quality of hearing doesn't make your T louder. I'm totally deaf in my right ear and the volume of T in that ear is off the scale 24/7. It's very hard with your balance issues too, for a long time it use to worry me that people walking behind me would think I was tipsy or drunk but now I just think if they do that's their problem not mine.

Best Wishes

Xene

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if i learnt anything its that answers are varied, mainly because it seems that we experience similar things but they can also be different, thats something i have noticed around here, sure we all looking for answers, searching for that holy grail, but i still get that feeling no one really knows what its all about, i guess when the problem gets solved then thats the time answers will be found, i realised the other day sure hope is one thing but in reality its just one of lifes curve balls, thrown at you, does it matter what anyone really says not really thats just a short term fix, does it matter if you compare youself to others worse off - not really short term fix in reality i wish i could say hey here u go just as another fellow human being but aint possible, but if you can get sleep at night that seems to be part of the key to some normality down side is perhaps addicted to sleeping pills but hey glass is either half or empty or half full and now i sound like a wannabe know it all when i reality just want to put a stop to it as everyone does, been thinking about making a media project about Tinitus but in reality i also realised that most people expect thank god around here that is dont really give the notion of tinittus a second thought unless they got it themselves but then why would you ..

[traci25td]

Hi jo jo313- I know it has been awhile since you post, just wondering how you are feeling. I have similiar issues and found a lot of improvement with vestibular therapy

[Jojo313]

Hi, after 15 months of useless ent dr’s, they said Labyrinthitis, Ménière’s, Vestibular migraine etc now they say MdDS, I have no faith in them , I’m just on a list they tick off! However I definitely agree VRT has helped, thank heavens for audiology, I still have screeching tinnitus 24/7 but I have maskers which mostly help, I can also get out on my bicycle most days, walking still to wobbly, but this is as good as it’s going to get I’m told! Thank you for messaging, I hope your recovery is going in the right direction as well 😀😃

[whywouldi]

Hi,jojo similar to what you got! I Got, been there with all the meds, shrinks ,self help clinics,physiotherapists,Scans ,therapist workshops, Snake oil salesmen, and Voodoo practitioners, the latest in a long dismal line of pills and potions is SERC-16 tablets Betahistine-Dihydrachloride to give its full title, To be fair they are the best so far for Menieres and Tinnitus, Combined with the Brandt-Daroff exercises there is marked Improvement ..suggest you give them a go ,Best of luck, Jeff

[Jojo313]

They were the first ones I tried, no help for me sadly, not tried the snake oil yet lol!

[whywouldi in reply to Jojo313]

Hi jojo313, I found the Serc-16 took about two weeks to start helping, there is always a danger in not giving medication time to take effect,I am not saying you personally,just in general regards jeff

[Jojo313 in reply to whywouldi]

Glad it helped you, I tried it for almost 6 months, ent we’re giving me varying diagnosis firstly Labyrinthitis, then Ménière’s, then Vestibular migraine and now MdDS, frankly they don’t know, they don’t listen and just read things off lists, then they give you the time, money, resources speech, disappointing to say the least, if I was a dr I would want to know what is wrong with my patients. Maybe I missed my calling lol!

[whywouldi]

I AGREE, gets to the point when you realize they find you a bloody nuisance, they cannot pigeon hole you and therefore you are not the kind of patient they want on their Books

[Jojo313 in reply to whywouldi]

Absolutely, funnily enough I am no longer being seen by ent! Can’t help , won’t help, bye bye!