Meneires disease 10 months in
Posted , 7 users are following.
Diagnosed meneires in November 16 was having attacks at least once a week was put on 8mg bethastine work for a while then End of November started again,at this time I was off work since September and couldn't see a end to it,so was upgraded to 16mg and tried a low salt diet,ok until January then was having attacks 2 or 3 times a week and felt so low!! Then went to ent and he put me on 32mg 3x a day in march 17,since then I've had 1 minor attack and minor ear fullness now and again,I them stopped this low salt diet rubbish!!! And never felt better,think it was cutting down too much on salt or upgrading to 32mg,feel myself again after 4 horrible months Nov to march,everyone's different but to me,eat what yer want drink what yer want and carry on as normal as worked for me,I have another ent appointment in July,just thought I share my experience to give hope for people who are down at the moment,sounds like I'm rambling on but it's not all bad if yer feeling down right now,since I went back to work I've had 1 sick day in 6 months of which before Christmas I couldn't see the light of end of tunnel,hope this helps people struggling at moment,chin up it gets better!!!
0 likes, 21 replies
JMJ steve58456
Posted
Steve,
Congratulations! You're lucky to have responded so well to conservative treatment! It's wonderful that the Betahistine worked well enough for you that you were able to toss the rest of the regimen.
Wish you the best of luck and permanent relief from the symptoms of MD!
J-
angela84522 steve58456
Posted
Steve, I believe that we can have to low of Salt in our diet and potasium. I have had the same experience. I require more salt. At least 2300 mg or I get really sick.. Especially right now in the summer with this heat. I have found that I can't do a 1200 to 1500 mg Salt intake and a diuretic. Way to much. Another interesting fact is my Grandmother that is 96 has had MD for years and is now deaf in that ear. But she has drank a Beer once a day called Coor's Light and it has really helped her. I decided to try it and I am not usually a drinker but it has really helped my ear and my nerves.
angela79369 steve58456
Posted
That's good to hear. Me too, 32mg betahistine x 3 per day plus 1 x diuretic has kept me vertigo free for nearly 3 years. Ent agrees to keep me on this regime.
I don't particularly follow a low salt diet but I do limit alcohol. Tinnitus has been fairly quiet for a long time too and from being quite deaf in the affected ear, the hearing
has greatly improved.
32mg betahistine has been wonderful for me in my opinion. I know some people are on higher. So yes there is hope for those that are struggling.
Long may you keep well. Good luck x
nadia786 angela79369
Posted
Hi,
Have long have you had MD for?
My mum has it. She was diagnosed in july 15 after months of attacks. Then in Oct 15, she went into remission but in March 17, the attacks returned.
She was on the JOH regime and takes betahistine 16mg x 3 a day, gingko biloba, lysine and bio flavonoid. Do you only take betahistine? Do you take any other supplements?
Was talking to my mum about coming of the vitamins and sticking to betahistine only to see if they work. What do you think?
It's an awful disease that I wouldn't wish on anyone.
Thanks for any advice!
Nadia
angela84522 nadia786
Posted
nadia786 angela84522
Posted
Hi,
Thanks for replying!
Mym mum has started taking pine bark so hope it works. Somebody mentioned it on the facebook page so when I read up on it, it sounded promising.
How long have you had MD for and when was your last attack? At the mo, my mum has attacks every other day. She feels dizzy everyday but not so much that she has to lie down.
I really hope that the attacks stop soon as she is 64 and it really has depressed her. She use to drive but can't now and doesn't leave the house unless someone is with her.
steve58456 nadia786
Posted
nadia786 steve58456
Posted
Thanks for replying!
I heard pine bark is really good. Everyone is different. Seeing doc in July so let's see what he says.
fil39169 nadia786
Posted
Hi Nadia, sorry to hear about your mum. I've had MD for quite a number of years now and tried practically everything. Luckily I have a really good husband who has been injecting me with stemetil when I have bad attacks, but they really hurt and he doesn't like doing it as I don't like having them. After a few weeks with attacks almost every day he did some research online and found a trial going on in Australia where patients were being given viagra, and that they were claiming was working well. So we bought some online and I tried it (25mg a day) and it works! Went to my GP and explained and she took a week to do the same research and when we saw her again she gave me a prescription! It isn't licensed for women, but it was initially intended to be for blood pressure but the doctors trying it out (I know the sister of one of them) found it had 'other' effects so hence its present use. It dilates your blood vessels and when I take it I feel a bit stuffy nosed and pink in the face for a short while and then nothing. I am still getting attacks (I can feel when I would be having one) but the viagra seems to be helpiing my other meds to work properly as I feel my body fighting the attack off and it is so mild as to be almost nothing. I've had drop attacks in my time which are awful and always used to lead to really bad vertigo and vomiting etc and unable to move, and I even had one of those out at a friend's house. I thought I was going to be seriously ill, but no, I fought it off and felt better!
For me it's like a miracle has happened. I feel so much more confident about it and able to go out a bit on my own whereas before I was too nervous to go anywhere without my husband in case I had an attack and needed an injection. It's still early stages with the medication at the moment but touch wood, it seems to be doing me lots of good. So I thought I would share it on here so other people could as their GPs for it too. I was considering the gentamycin injections but they sound awful. Tell your mum about this.
angela84522 fil39169
Posted
angela84522 nadia786
Posted
I have had it for 3 years. They got really bad September of 2016. Almost daily. DIZZY all the time. I started on diuretics and low salt but didn't do much. Helped a ltitle but the Pine Bark did the trick for me. The longer you are on it the better it works. I sure hope she feels better soon.
nadia786 angela84522
Posted
Thanks for the reply!
She started pine bark a week ago so fingers crossed.
Nadia
sharon17905 angela79369
Posted
You mentioned diuretic, what is this please?
Thanks
Sharon
sharon17905 steve58456
Posted
Hello Steve - it really is good to find a forum, where we can talk about our condition. I take Betahistine, and have been for a number of years on and off. I'm not really sure if it still works, as I have been having attacks every few weeks, lasting days/weeks. I try to be positive, but it is so hard.
steve58456 sharon17905
Posted
Hi Sharon I was upped from
16mg to 32 x 3 a day and feel normal again,I went through hell last year and early part of this and no exactly how u feel.bethahistine doesn't work for everyone,speak to your ent doctor about increasing your dose,I get to the stage now I forget I have meneires,4 month ago I couldn't stop thinking about it!!!I went to ent on Tuesday and my hearing test was back to normal,I've a MRI scan booked in middle of august just a precautionary,feel a lot better now and my ent doctor is fab,he told me I can increase the dose if required
nadia786 steve58456
Posted
Glad the betahistine is working for you.
Does the high dosage make you drowsy?
My mum has an appointment with ENT in 2 weeks so she might ask him for an increase .
steve58456 nadia786
Posted
Not drowsy at all,32mg works for me,he told me I can increase it if needed aswell,it's still 16mg tablets but take 2 3 x a day,and the difference is unreal!!!