I have had menieres disease for many years and have managed to lead a fairly normal life. The last 5 months have been awful. I am having vertigo etc nearly every day. I take betahistine 16mg 3xday.
Really concerned. What advice or other treatment works for anyone?
Any help please. Thank-you
I really do feel for you and no exactly how you feel 😔 i started with severe vertigo & sickness along with all the other stuff in february, it took 6 months to get diagnosed after suffering like you on daily basis.
i also take betahistine 16mg 3x daily and a water tablet, also take prochloprazine when having an attack. I had a grommet inserted in my right ear in august and have been feeling quite well, however over the last few days been feeling like the dizziness may return. I am also having vestibular rehabilitation this helps to teach your brain to use signals from elsewhere rather than your ears, think this is also helping a bit. Ive been off work since feb and due to go back in two weeks which is really starting to worry me so i think it may be this that is causing me to not feel as well again, i would definately look into grommets and the rehab although ive read it doesnt work for everyone. Hope you get sorted very soon x x x Abby
Thank-you so much for your reply. I dont take a water tablet-do you think it helps? I do take Buccastem (similar to prochloperazine) and I have not beeb advised re grommet. I wear 2 hearing aids as my hearing has really deteriorated. I am going to see GP again so any advice would help. I am waiting to see Specialist but appt came for Jan 2015!!!!
My ENT consultant at hosp increased my betahistine to 32mg x 3 a day. Lots better on this dose. Daily I feel more human on this dose and when I do have a spin I get a longer warning say 20-40 minutes and the spin is slower and lasts an hr or hr and a half instead of 2-5 hrs and fast spin. Any reason that you can see for your flare up? Menieres is fairly random but worse after events I find, or stressy weeks, tiredness, going out and noisy surroundings. In my opinion anyway. No alcohol is best I find, or something really low alcohol as it affects the hairs/balance in your ears which is what our problem is all to do with isn't it. Get to docs and get referred to hosp if you havent already. No side effects on 32mg.
I am on Betahistine 16 mg and im taking Cennarizine 3x a day you can by them over the counter , there think i have Menieres but i am now having more test done, i have vertigo attacks at least 1 a week and currently trying to live a as normal life , i have read that ginger supplement capsules can help , so im trying those , and just trying to as relaxed as normal i feel for you as i had 8 months of nothi g and now this
Its really hard to pin point exactly what is helping in my case because its all happend at the same time, i had the grommet inserted on 18th august, gave up smoking the week before, having much less salt in my diet, restricted fluid intake to 1000lt a day, started the water tablet in august, and started my rehab last week. To be honest i think its a whole comination of things, but i do feel the grommet has really helped me. I would definately be asking your gp to ring ENT to have your appointment brought forward, my gp did this for me, but i suppose it depends on how good your gp is. Mine has been brilliant. Are you stressed at the moment because that does seem to be the biggest cause of the symptoms returning? Ive been using relaxation cds to try and help with my stress levels and also doing yoga and going on short walks ( i only go out when someone is with me at the moment). Keep us updated how you get on, i find these forums really help because you chat to people who really understand how you are feeling and get info on things that help others. Iam sure other people will also reply yo give you their experiences and advice take care x
Hello misskent, I was told I had menieres for many years. The V.A. located the true problem -- frontal lobe seizures. Symptoms are a lot alike. Have you ever had an EEG. Brain test --- little sensors all over your scalp. I think there are newer tests now. I finally got some relief with the correct medication.
I hope you find something to help.
dant
Hi,
When I was working I was having regular dizzy spells at work and this major attack and I have been off work since. I have had attacks nearly every day the past few months although I do get some respite and go out! I find, as well, that I get them towards the end of the day when I have been tored or overdone things. Sometimes they just come on unexpectedly!I think stress has a lot to do with it! My hearing has become so sensitive; we went out for a meal with friends last nightv and the noise in the restaurant set it off again. I try to stay relaxed and it did settle a bit but by the time we got home I just felt awful. I just need quiet and rest. I sleep for hours now!
Its so frustrating isnt it? I have spoken to my GP this morning and he is going to chase my specialist appt.
I dont drink alcohol, or very little, reduce salt and caffeine intake.
Thanks for the support.
Hi, Thank-you for your reply and I have had other replies. It is so hard to manage and I am going through a really bad spell at the moment. It seems everything I do sets off an attack! My GP is very good and I hope he can get an earlier appt with the specialist. I have a few questions to ask following all the replies on this forum; it has really helped me to read about others in the same situation.
I hope you are feeling better; keep me updated.
Hello misskent.
This is DanT again. I was told I had menieres for over twenty years. I kept getting worse. I got up in the morning feeling as if I had been drinking all day. My hearing kept going down hill. Ringing was very hard to put up with. I still have bad ears. Right one does not work much at all. I am told the noise will be with me until I die.
I got to the point I would turn off and fall down. This would happen at least
every other day. Kept breaking my legs. Menieres calls this a "drop attack".
What it really was -- major seizure. If I had gone to the V.A. sooner I might still have my hearing.
It was the end of the Vietnam War. The hospital was in overload. I was working and made good money. I did not want to add to their load.
Nothing like hindsight.
I wish you well. Hope you get lucky.
DanT.
I would suggest up the betahistine from 16mg x3 day to 32mg x 3 day. Ask your doc? I never want to go back to 16mg, I feel a lot 'safer' on 32mg plus my grommet done in july. Thats not been entirely successful and im going to have another steroid top up of dextramethasone into the grommet, just waiting for procedure date. And like you I have to avoid noisy situations, even talking on mobile phone directly into my good ear can set me off. Cant set foot in a restaurant or pub. If you can try and avoid noisy people/places. I soundproofed office cupboards with a thin foam strip to stop regular banging noises!! Keep your chin up x
Thank you for getting back to me. I am seeing my GP Monday to ask more questions and hopefully he is chasing up my consultant referral.
I am seeing my GP Monday and will be asking these questions..so glad I joined this forum. You have all been so supportive. I hope you are all managing this awful disease.
In the meantime get some Stugeron (cinnarizine) over the counter at the chemist. I take two n suck them as soon as I feel that squiffy off balance feeling. If you havent tried them already? You could ask doc for a diuretic water tablet too, helps reduce salts in blood I was told. Let us know how you get on. I've had 35 spins in 9 months so try everything I can!
I have lost count of the number of spins I have had in the last 3 months.Just awful. Don't like to go out on my own etc. I will be at the chemist tomorrow. I will try anything at the moment!!! Will keep you posted.
GP is drafting a letter today, to the Consultant, to try and get an earlier appt than Jan 2015! He has increased the Betahistine to 24mg for me to try. So......I will see what happens! Not a good w/e. How have you been?
That's great news. Hope you will start to feel better on the increased dose. I was on that for a week or so and if no improvement I was allowed to increase to 32mg. I made the mistake on a couple of occasions of having alcohol - few wines- and I would be so much worse and a spin either that night or next day with all the horrid lead up to them that we all get. So... I dont drink as a rule, caffeine free coke/tea/coffee and ive found 2% fruity beers so I dont feel im missing out. Hope you improve. Just say to yourself that the phase you are in won't and can't last forever and you will improve. Please keep us updated. ( Im on day 15 without a spin yippee..)
Hi, Just to update; I am now on 24mg of betahistine and the spins etc are not as bad, so thanks for the advice. I am still chasig up the Consultant appt-GP has sent a letter for me. I am still not good on a daily basis but at least I can function a bit without having violent attacks.
Hi. Had awful attack last night and it has lasted all today!!! Still taking 24mg betahistine. Still waiting for consultant appt! Still off work!!! Just hope this episode wears off soon.
Hi Misskent, how are you doing since your all-dayer? I also had an all-dayer, but then nothing for weeks afterwards. I'm still avoiding all noisy situations, even someone with a regular cough in the office can make me feel worse! I believe I need a quiet existence, no alcohol not get overtired. Feel normal alot of each day but get phases of 'is that a spin coming on' and then it goes away. I think the 32mg betahistine x 3 dy the water tablet and the grommet is holding things at bay. Maybe like me the all-dayer has cleared things a little for you?