About six years ago I started having attacks of dizziness where the room would spin, I couldnt walk because my balance would go, and I was violently sick. I was put on Betahistine and, after having at least one attack a week, after about eight months it just stopped. I was able to go out on my own again without worrying about whether I would have an attack. After five years of no attacks it is suddenly back again. Since last November my left ear has felt like it was blocked. I had it checked and it is free of wax. I had my hearing checked and it is slightly worse than it was at the last test, but nothing much. The fact remains I feel like it is really blocked and, although I wear a hearing aid in that ear I dont feel any benefit. I have now had three attacks, the full works, room spinning, dizziness, loss of balance and vomitting. Im so fed up at the thought of being made a prisoner by this horrible disease.
What did the hearing test show exactly (loss in which frequencies)?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
I'm sorry but I'm not sure what the frequencies were although I guess I was told. I do know that the hearing loss in my left ear was only a bit worse than in a previous hearing test. However, for me it feels like I've got very little hearing in my left ear.
Assuming that your diagnosis is Meniere's disease, has intratympanic steroid therapy been discussed?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
It's never been officially diagnosed. When I was being seen at ENT five years ago I was told by one doctor that I might as well call it Menieres because I had all the symptoms! Previous to that , after a bad attack I was taken to A&E and the doctor there thought it was Menieres.
I have seen my GP today and she has put me on Betahistine and is sending me for an MRI scan.
Hi June.
Are you on a diuretic? If so, what mg?
Are you following the "Meniere's Diet" of eliminating salt, caffeine, ALL liquer/beer/etc.?
what amount of betahistine are you on?
I'm on 16mg of Betahistine, started today. No diuretic. I don't drink alcohol, have very little salt and my caffeine intake isn't too bad but might need to cut back some more.
I'm surprised to hear that you are not on a diuretic....that's a basic med for MD patients. Diuretics in 25-75mg are used to pull fluid out of inner ear area. This then helps reduce MD symptoms like vertigo, ear fullness, sound distortion. There may be a good reason why your ENT has not prescribed a diuretic in your case but it is worth finding out. I take 75mg/day and my MD symptoms are controlled. I've had MD for 40 years in my left ear and recently developed it in my right ear and now have what is called bilateral MD. I have gone through intratympanic steroid injections, gentamicin injections, betahistine, allergy tests, antihistamines, steroid nasal spray (still use), etc. The 75mg diuretic is most effective.
Do you have allergic sysmptoms (post nasal drip, sneezing, thick mucus, clearing your throat a lot, etc.)? If so, allergys and non-allergic rhinitis could be causing your latest flairup with MD symptoms. If you do, you should consider asking your ENT to prescribe a good antihistamine nasal spray and start using daily a sinus flush (over the counter). By the way, nasal antihistamines are safer for your body than oral type. Oral antihistimanes have been known to increase likely hood of getting UTI. Also anyone taking betahistine should not take oral antihistamines....they neutralize each other and you will fail to get the benefit of either. Antihistamine SPRAY doe NOT neutralize betahistine because it stays just in the nasal area and does not circulate through the body like oral ones.
good luck.....
Also, eliminate the caffeine completely (chocolate, coffee) and try to keep salt intake to less than 1000mg/day.
good luck!!
Thanks tanney. At the moment I am waiting to hear from ent, my GP referred me last month. I was never offered diuretics when I had symptoms last time. Out of interest are you in Britain? I just wondered because it seems like people in the USA seem to have more treatment options than here.
I do have asthma and allergies and I use a steroid nasal spray. I use saline nasal washes but funnily enough my hay fever has not been a problem this year.
Tanney se me very knowledge in MD so I'd check out those recommendations. I'm going to see how much diuretic I am on because maybe it could be increased before I go to the next step for me, which is gentomicin. I just wanted to say that I'm really sorry it came back on you.
I have been free of attacks and medication for over a year completely changing my diet lost 3 stone..... Stopped wearing hearing aid.. I may be getting very complacent as I keep reading of attacks coming back after years of being free this is worrying...
I wish you well and hopefully they will Subside very soon
I must admit I just assumed that I was lucky and that I was over it. At least this time I know what to expect and it isn't quite as frightening. However I still find myself cancelling things in case I have an attack. I just hope it goes away as fast as it came.
Guys just know the blind walking works , along with blind seating getting up, throwing objects each hand, blind walking stairs, and have added head turning and moving up and down, beta. Hist. , water . No salt Stopped the dizziness and drop attacks . Shea clinic is big on these thing's in Memphis. After splitting my leg wife open I had enough. Now if I can get loud ringing under control.
Hi, I can fully under your despair June. I haven't had an attack since Aug 2016, due to excessive salt in food in Northen Cyprus.
Last Monday the attacks started again. Horrible and scary. In total last week I had 4 attacks resulting in two days off work. Today I was sent home after another attack. I try to stay positive but must confess to feeling scared that the cycle has started again.
Hi, my Consultant has only got me on 5mg of water tabs. Is that going to do any good? Seems very low from what I've been reading.
hi emma. Is your consultant an ENT doctor? 5mg is very low. what MD symptoms do you currently have and are they lessened by the diuretic? If you are not seeing improvement in symptoms ask your doctor for 25mg. Go up from there if still no improvement. Be aware that if you begin taking higher doses you should have blood work drawn to test your potassium level and kidney function.
Hi, thanks for your reply.
I've been MD attack clear since Aug 2016. I had very bad attacks in Cyprus due to the sodium in the food. Prior to that I had regular attacks, some so bad I wanted to die.
My ENT has had me on SERC 16mg x3 per day plus the 5mg of water tab.
I've taken them without fail for a long time.
This week I had a horrible shock. 5 attacks, the most recent today.
I've had two steroid injections (2015/2016).
since you are on 48mg of betahistine and you have had steroid injections and are still getting vertigo, increased diuretics may be helpful to you. You might want to check in with your ENT this week and see what he/she says. Watch your blood pressure when you go on the higher diuretics (50-75mg)....it very likely will drop...especially with the betahistine. If you feel lightheaded that might be the cause. Let us know if the higher dose is helpful....it should be.
Good luck!!
Thank you so much. I'll let you know what my ENT says.
Hi June sorry to hear about it. I am going through exactly the same issue, have been on betahistine for the past 6 months, and it actually helped until last Wednesday. I never forget to take any medication out of fear I may have an attack, but last week no amount of medication helped me, I ended up having to come home from work and them missing another day. I have seen my GP on Monday but nothing was done about it. After 8 months of complaining and going back and forth with GP I finally have an appointment for audiology but still no referral to an ENT specialist which just adds to my stress and anxiety, which in turn fuel more attacks. I hope you, me and everyone on this forum get sorted soon, because i would not wish this on my worst enemy.