Menieres disease/betahistine

Hi Abby. I've had menieres for 2 1/2 years now. I started on 8mg betahistine 3x a day. After a bout of really bad dizzy spells, the hospital upped my betahistine to 16mg 3x a day. I've been on this ever since. My GP told me it was the best medicine to take. I can go 3-4 months with no dizziness if I'm lucky, but then I can have weeks at a time with unsteadiness and spells bad enough to make me bedridden. My last one was 2 weeks ago - and lasted for over 24 hours! My worse attack yet! I too try the low salt/caffeine diet. Not really sure what works and what doesn't. Think it's mostly trial and error. I've never had a grommet, but have heard good reports, so it may be this that's making you feel better at the minute, not the lack of betahistine. Hopefully it keeps working for you anyway

Thanks for your reply tanya, its really helpful to find people who understand, my families been very good. But i think sometimes its hard for people to understand how you feel and how debilitating this illness can be. Iam really worried about returning to work, i am an essential car user, and work in big open plan offices with strip lighting and use a computer for long periods. Its also very pressured and stressful, i really dont no if i can continue in the work i do. Iam trying to stay as positive as i can but iam a born worrier and iam finding it very hard!!!!! I feel i am just anxiously waiting for another attack to happen.

I know how you feel. I'm a housekeeper in a private hospital so I'm on my feet doing  an active job for 8 hours a day. They all know I have to just go straight home sometimes when an attack happens, but when people say, well you looked ok yesterday, I know they don't really understand how fast these spells arrive, or how debilitating they really are. It makes me feel they think I'm just trying to get a day off!! I worry constantly that I will lose my job, and I can't see anyone else employing me once they find out I've got menieres (no-one wants staff who potentially could have loads of days off). My only advice is try not to worry too much - as we know this can bring spells on!! Take each day as it comes, and learn to enjoy the times you feel "normal". After over 2 years living with this, I'm still learning. 

I think with this disease we will have spins and dizzy spells whether we take betahistine or not and whether we have a grommet fitted or not. I feel for all of us in that we are all trying to hold down jobs also that none of our friends and family truly understand or 'get it' and how we feel.  I've soundproofed my immediate office area - self adhesive foam strips on all the cupboard doors.  You realise just how carefree other people are about banging doors and clattering about.  Try and avoid noisy situations, in my case I can no longer sit in my weekly slimming class, 60 people noisy and clapping.  And don't get me started if someone gets a cold near you and they cough all day, it reverberates like a dog barking in your head - resulting in more dizziness and a spin usually.  Have a think if noisy places/events etc affect you and soundproof if you can.  I would advise betahistine (my ENT says I can have 32mg x 3 times a day and I also have a grommet) then you are the best protected you can be.  Get some Stugeron from the chemist over the counter and have it on your person at all times. When you feel slightest dizzy/drunk aura come over you, suck two of them.  It helps lessen it in my opinion.  Finally, google Youtube videos on menieres - Edmund Cheung - series of videos he's done himself, some great advice on those.  Let us know how you're progressing?

Hello Abby. I was diagnosed with Menieres almost thirty years ago. Several doctors and two hospitals were all wrong. I was finally found to have brain seizures (frontal lobe).

Seizures are treatable. Is the test you had an EEG? Have you seen a  Neurologist?

I had progressed to the fall down stage. Menieres calls this a "drop attack".

I hope you don't get to that stage. I think I was lucky. I take pills several times a day - but that is nothing.

Don't give up. Doctors are often wrong. The doctors at the V.A. found my problem.

I wish you luck as well. I have been through years of grief because the doctors were wrong.The V.A. was going to be my last stop.

Dan T.

Hi Abby, is Dan T.

You know more about this messs than I do.  When I was supposed to have menieres I got worse slowly. Noise in right ear and dizzy. Noise in both ears and very dizzy.

It was always the same -- take this pill and call back later. With your connections you can find people you trust. I had no connections - I was just a problem to a very busy medical types.

I quit driving when I turned off the first time. Broke the truck - did not hurt anyone.

Nothing but luck. If it is time to stop driving you will know. 

I lost my memory with the seizures. I don't know if menieres does brain damage.

I prefer no memory to turning off without warning.

I do hope you get lucky. 

Dan

I have just been diagnosed having had tinnitus for years.  Have decided that I am not doing medication as I have past epilepsy and mental health issues.  I am having almost 24/7 attacks.  I will pursue the grommet solution and thanks.  Horrid disease and hate being so wobbly.  First really began to notice it when on escalators going down to the underground railway system in my home city of London but the tiredness has been a longer term issue.

Hi,

After a very rocky scary 18 months starting with a totally unexplained sickness after being at a filling station where I had such a strong smell of petrol it felt like it was being poured down my throat but my husband couldn't smell anything leading to going home to bed & being violently sick.

I went to the doctor who took my blood pressure on two occasions a week apart & found it high. I bought a blood pressure monitor and noted it twice a day for a week giving the results to the doctor averaging out that it was higher than normal but ok. Then an MRI scan on the right side of head & ear, both negative. I started on 8 mg Betahistine & a Buccal tablet for sickness. I found looking at my lap top , reading a book, glancing between TV & lap top and eating of a tray on my lap had me having to go to bed until the dizziness passed , usually three hours.

I stopped driving on doctors advice, luckily self employed dog walker with my husband so had to tailor client list to suit one driver. Had quite a few turns always feeling very fragile after with weird dreams, palpitations & temperature highs & lows. I developed a pins & needle sensation in my head all the time combined with shivering and never feeling warm, not all the time just when sitting in the house. I went to the doctor and was given 10 mg of Amtripilyne to be taken at night for the nerve sensations and then checked to see if it agreed with the Buccal and it didn't ...the Buccal should never have been given to me as there is a history of blood clots in the family. I stopped taking it and gradually the shivering & palpitations stopped.

I now take 16 mg Betahistine three times a day, two paracetamols during the day(I find it helps) and 10 mg Amtripilyne at bed time & I sleep really well.

I have also had four steroid injections into my ear drum over a six week period and it seems to have helped that any dizzy turns are not as bad & I can manage them. I miss swimming, having a leisurely lie on the bath & cycling and independence as not too keen on long journeys on my own. I avoid getting too hot eg when cooking, try not to get rushed or stressed, I don't use much salt in cooking but love coffee. Hopefully it stays like this but I might need more injections in a year or two. The permanently scared sensation has lessened. Sorry for the epistle just good to feel I am not the only one whose life has been turned upside down by Menieres.

Hi Abby was wondering if your any better?

I've been suffering for about an year with feeling dizzy all the time and unbalanced feel like I have to hold on to things while I'm out, I'm still on the waiting list to go to ENT I get popping in my right ear I have had a outter ear infection just really fed up with this now it's ruining my life.

Hi I've just come on to this site as I also suffer from menieres disease I'm so fed up with it - and I also worry about my job!!! I've had to come home today because I had a dizzy attack, I'm on Betahistine 16mg 3 times a day so reading what people have put on here really helps. I didn't think I should have any attacks being on the tablets but obviously you do. I'm waiting to go to ENT and I will ask for a grommet - what are they exactly?

Abby,

I am sorry to hear about your vertigo issues.

I have had this illness for many years now and I have found nothing really works. This may be just my experience, and not the case for everyone.

I have had the shunt surgery. I assume that is what is meant when people say a grommet in this forum. Basically, you have a tube surgically implanted in your ear that is supposed to help regulate the pressure and get rid of any excess fluid. I have done chiropractic neck treatments, as I was told that it helps some people. I haven't had caffeine in years, I have done the low salt diet a few times. I have taken a couple of different drugs. None of this has had any long term affect, if any affect at all.

After all these years, I believe that the viral hypothesis is the correct one. Everything you are told about Menieres by medical professionals is a guess. There are more than one way of thinking on what causes this illness, and since there are so many thoughts on the cause I have surmised that it is different for different people. For me, the illness acts like a virus. it pops up from time to time, and then goes dormant for a while. It makes my life as miserable as the other posters here, and then goes away. It will rob you of any enjoyment if you let it. For a few months it sent me into a state of depression that was even harder on my wife than it was on me. 

I know people come to forums looking for cures, or at least temporary relief. I am sorry that I cannot offer that, as I spent a very long time looking for it myself.

The only advice I have is stay positive (yes I know how cheesy that sounds) and try to enjoy of much of your life as the illness will let you.

The only real cure I have heard about is to have the nerve to whatever your affected ear is cut, and there is a 100% chance that you will no longer have vertigo from that ear. The downsides are, you will lose 100% of hearing in that ear, you have all of your balance from the other ear now. You will likely go through weeks of the worst vertigo of your life. You will have trouble walking, and have to relearn how. If the Menieres goes to the other ear, you are right back where you started. I am of course saving this as a last resort. When I am having strong attacks it sounds like a better idea than when I am not, but I have not had the courage to do it. From what I read from the people who have had it done, it is a nightmare, but they all say they are glad in the end that they have done it. When reading about these posts you can tell how long it has been since they had it done by how much happier they are. If it was recent they are still miserable.

When I was seeking relief I would try different things and go right back to being angry when the vertigo came back. I have given up on the false hope and try to make the best of what unaffected time I have. I still work, and against my doctors recommendation, still drive. I am able to work from home sometimes, and have taken Uber to work when I have to be there and can't drive. 

My advice is, try to make accommodations to live with it. I know that isn't what you are looking for, and I am sorry I don't have better advice.

Darin

 

Hi Abby,

I am on 16mg x 3 plus 3mg X1 Amitriptyline at bed time but what made the most difference was 4 steroid injections in my ear last year. If you get the chance to get them I would say do it. What also I have learnt is not to stress about anything. Hope you feel better soon 😀