Hi,
I have been having very bad bouts of vertigo and nausea and am now in week 9. I have not been diagnosed with Ménière's Disease but my Dr said it sounds likely and it would be very unfortunate! I had a brain CT scan two weeks ago and am still waiting for results from that.. as my doctor said 'to rule out anything more sinister'... I had a terrible attack last night and am feeling weak and below par today though still at work. It is really starting to weigh heavily upon me now that this could be a life long illness. Like you I cut out caffeine, alcohol and salt and am still very strict with my diet. I find I am thirsty all the time. The past two weeks I have annoying buzzing in my ears that is probably tinnitus.. How are you feeling now? Some days I sleep so badly and am awake from five am every morning. I just want some answers and soon. Am waiting for an ENT appointment.. as I live in N Ireland my Dr said it could take awhile.. I live and wait..... Any thoughts?
If it is MD, there are good treatments available.
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
So sorry you are joining our club of sufferer's but I must say so far I seem to have mine under control.
Like you my symptoms went on for months then out of desperation I discovered this site. I am taking Bethastimine 32mg 3 times a day but also take water tablets and combined I feel I have mastered my cure.
My GP thinks my water pressure is due to hormones but I don't.
Good luck and I am sure many more people will help you with advice on this page. Vx
Thanks for responding. I think the hardest thing is coping with something that you are suffering from, when you look ok on the outside. I am trying to stay positive and take things one day at a time. Today I am exhausted and the humming/buzzing in my ears is particularly loud and annoying. Hopefully I will get good results soon and all will be well.
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
Getting the correct diagnosis is important so keep checking for CT result. Mention your thirst problem to your GP as this is possibly caused by something else (very unlikely to be MD) and While you wait for consultant appointment ask your Dr to prescribe Betahistine tablets. They will take 4 weeks or more to work but are very safe and designed to reduce fluid pressure in the inner ear as well dampening down tinnitus and with luck reversing any hearing damage. Carry anti nausea tablets with you so that you can damp down any nausea/vertigo attacks quickly.
Try to stay positive - 70% of sufferers recover and either never have another attack or enjoy long remission periods.
Hi,
Welcome to the forum. You'll find lots of support and good advice here. There are MD patients of all ages, at all stages of the disease, and with lots of experience.
It really does sound as though you have MD. Hopefully your doctor will put you on a potassium sparing diuretic soon; Although you'll have to still maintain a low salt diet, you'll be encouraged to drink lots of water to stay hydrated!!
I have had MD for nearly 2 years. I was plagued from day one, with frequent rotational vertigo attacks, with vomiting. During the attacks, I usually fell (unless I was lying down when they started), and couldn't hear, or move my head. And in between attacks, I was dizzy, off balance, exhausted, and my brain was fogged. I had tinnitus from the beginning, and rapid hearing loss in the "bad ear".
After a year of failing all conservative measures, I opted for intratympanic steroid injections. I have never regretted it. While it took several injections for me to obtain complete relief, it was quite a miracle. While the injections never helped my hearing or my tinnitus, ALL other symptoms gradually left me.
So, if conservative measures fail, there is always something else that can be tried.
I wish you the very best of luck!!
Sincerely,
J-
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.
4 month ago I start having ringing in my ears at the 7000hz. I also had a full strang feeling in my ear with a few jabs of pain and thought I had an ear infection. NOw three years ago I had a back fusion and then both hips replaced so I put my lack of balance all that time as from my surgeries. NOw through the years I have had bouts of being clumsy and had noticed dizzy spells when bending over or turning to my right to quickly. After my hips were replaced my balance got so bad I had to use canes everywhere I go. Now four months ago my GP put me on antibiotics for an ear infection when I was missing the open door way and hitting the walls. after 4 months of loudly ringing and a fullness feeling in my ears and an increase lack of balance I was sent to an ENT. My hearing was tested and as with Meneires disease I showed a low frequency hearing loss greater in my left ear than the right. Next week I have an MRI ordered to rule out a tumor in the inner ear which if not there will complete teh DX as menieres Disease which runs in my famil on my dads side. I have been put on a low salt diet and see my ear Dr in about two weeks to sum things out. After reading up on this disease it makes a lot of sense about things that I have lived with for years but thought were nothing but bouts of incoordination. I guess what I am saying is have you all been tested for low frequency hearing loss to confirm your Menieres disease like I have? Just wondering.
I don't know if this will help, but I had terrible vertigo for 2-3 years until I went to a physiotherapist last May - who has fixed it! I haven't had a bout since then - but the doctors say it is just coincidence.
Thank you NeddyO! On Saturday I started back on Serc 16 again. I was a tad dubious about stopping one medicine for another but thought since I was off work I would give it a go. I took three tablets on Saturday and Sunday and so far things look positive. I am still very careful about the way I move and am dizzy when I ly back in bed, but the tiredness has definitely gotten a whole lot better. I could live with this! Fingers crossed things will stay this positive!
Thank you NeddyO! On Saturday I started back on Serc 16 again. I was a tad dubious about stopping one medicine for another but thought since I was off work I would give it a go. I took three tablets on Saturday and Sunday and so far things look positive. I am still very careful about the way I move and am dizzy when I ly back in bed, but the tiredness has definitely gotten a whole lot better. I could live with this! Fingers crossed things will stay this positive!
Hi,
Thanks for responding. Yes, I have heard from another lady that a physio can help. I mentioned that to my doctor and he said he didn't think it would help especially as I have tinnitus with the the vertigo. I am still waiting for scan results and an ENT appointment so hopefully something will get sorted soon. S.
Hi,
Thanks for responding. Gosh you really have been through a lot. Hope all goes well with the MRI this week. I haven't been tested for anything so far, I am in my 10th week and have just had a ct scan 3 weeks ago today so am still waiting on the results. I have been referred to ENT so hopefully that appointment will come soon. At present I am just trying to find medication that helps me to lead a normal life. I wish you well. S x
Hi,
Thanks for responding. Yes, I feel so grateful for all the positive feedback from everyone. I was at the stage where I was sick of listening to myself moan about how I was feeling so I guess my husband must have felt the same, though he's so wonderful that he never complained lol! I am so glad that I found this forum and find it fantastic. Thank you for al your feedback. Hopefully I will get postitive news soon, and if not then fingers crossed that whatever meds I am prescribed work and I can maintain as normal a life as possible. S.
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.
Just a wee update.. I made a private ENT appointment as just found out that the wait time is now 20 months... too crazy! I will be going to see what he can do for me on 13th Feb... fingers crossed, S.
Good news - lets hope he advises an increase in the betahistine dose as happened to me!!