Author Topic: Does Betahistine work  (Read 38361 times)

Offline Feelingspinny

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Does Betahistine work
« on: Jan 11 2012, 08:19 AM »
Hi,
I have been taking Betahistine for about 2 months now 2x16mg am and 2x16mg pm, since my MD took a nose dive 1year ago (had it for 5 years with only the odd bad vertigo attack) Now i have the bad tinnitus and off balance feeling quite alot and alot more vertigo attacks. I have also just been prescribed Dogtamil 1x 5omg am. I live in the Netherlands and I went to my Specialist here yesterday and she told me I just need to give the drugs longer to work, my question is- How long? Have people had sucess with these drugs?  I also follow the JOH regime although I don't think it's doing much for me.
Thanks, Rachael

Offline Emma

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Re: Does Betahistine work
« Reply #1 on: Jan 11 2012, 09:52 AM »
Hello - unfortunately I am unsure what to suggest here - I know it takes a while for the Betahistine to take effect but to me 2 months seems a bit of a stretch...it might be worth talking to them about altering your dose as this can be effective.
Emma xxx
Be happy - Keep smiling :-D

Offline Benny01

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Re: Does Betahistine work
« Reply #2 on: Jan 11 2012, 01:50 PM »
Hey there,

Betahistine in my experience was working or helping to some degree before taking it for 2 months. As Emma said, 2 months is stretching it a bit. I'm getting more attacks now then I used to, but the vertigo itself is not as severe as it had been before. Whether or not this is the Betahistine which has made this the case, I really don't know, but I'm fairly sure that it doesn't and shouldn't take 2 months or more to have some effect.

Are the attacks that you're having now, although more often, less sever than they had been previously? Like you I'm pretty much always off balance. I have bilateral tinnitus, but had it in my left ear for about 16 years, so this is not new for me. Did your new GP give you a time frame on how long they think you should be taking, Betahistine for before it will have some benefit?

Ben

Offline Elaine

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Re: Does Betahistine work
« Reply #3 on: Jan 11 2012, 02:18 PM »
Hi ,
I'd agree with Emma and Ben .2 months is a long time with no result. The normal dose is 16mg 3 times a day but there are some people who take more than this and some for whom it doesn't work .Also some find one brand works better than another for them .
Hope this helps ,
Elaine xx

Offline Feelingspinny

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Re: Does Betahistine work
« Reply #4 on: Jan 11 2012, 03:37 PM »
My pattern seems to be one major attack every six weeks and feeling really crappy and anxious for about 1 week before and about 2 weeks after. My specialist said just give it more time, she did say it was possible to have attacks before they start working properly as was the case.Although she is sending me for another MRI  because I was diagnosed in the Uk and moved to the Netherlands 4 years ago. She also said the dogmatil could take up to a few months to kick in, Anyone had any experience with this drug?.  I think the anxiety doesn't help because when it happens it happens big style! Started spinning at my daughters school just before Xmas- a big fear of mine!
Anyway thanks for answers,I'm new to the forum, it's really nice to know there are people out there that understand all the rubbish emotions that go with this disease.xx

Offline The Wobbler

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Re: Does Betahistine work
« Reply #5 on: Jan 11 2012, 04:09 PM »
I find that it is one of those drugs where you are never quite sure whether it is working or not, but you donít want to stop taking it because it could be.

I do know that when I forget to take it (usually the evening dose when it happens) that I often subsequently think - Ah I thought I was a bit iffy yesterday evening.

I was on 2 x8mg for a long time, but after the beast returned last year I am now on 3 x 16mg.

I cannot say that it stops vertigo, it patently doesnít in the short term, but I do believe it helps the symptoms during the earlier stages of MD when used alongside complimentary medicines like diuretics and anti-sickness pills together with dietary and lifestyle measures.

Offline The Wobbler

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Re: Does Betahistine work
« Reply #6 on: Jan 11 2012, 06:48 PM »
If you combine Betahistine with 4,420 miles of cycling you lose weight.  I am sure of that, just as I am sure that cycling alone does not prevent MD attacks.  It may well help.

You are right though Paul.  It apparently helps you resist fatty foods.  Whether it is the placebo effect or wishful thinking or suggestive thinking I canít be sure.

I do know that since being diagnosed with MD in June 2010 I have lost 4st, but that may be a combination of Betahistine, cycling and increased dietary awareness including avoiding processed foods.  Primarily to avoid the salt, but once you start looking at those labels more carefully all sorts of bi-products emerge.

It has certainly increased my awareness that healthy eating and low fat options tend to rotated salt, sugar and fat as flavourings.

I think that our forbearers knew just as well what constituted a healthy diet as we do now with all our advanced technology.  And of course convenience foods werenít around.

Offline Elaine

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Re: Does Betahistine work
« Reply #7 on: Jan 11 2012, 07:29 PM »
Sorry guys I beg to differ here 8) .
Some docs think betahistine is just a placebo and others think it really does work .In my case after a few years of taking it Mr Saeed (now Simon's consultant since his move down south) asked me to stop taking it .I got to 2 weeks and I was climbing the walls with constant vertigo and dizzy feelings and my anxiety levels were horrendous so I went back on the drug .At this stage I was taking 3 x 8mg a day which he considered to be a "homeopathic dose" (his words!) .Over the years I gradually increased the dose so I now take 8mg in the morning and 16mg at lunch and evening .In the interim I was also diagnosed with a sticky blood condition and put on warfarin and since I've been taking that the serc works better hence the blood stimulating properties are apparent in me i.e. warfarin thins blood + serc stimulates blood flow = less dizzies in me  :)
Some people say they can take it as and when they need to and I suspect I might get away with that if I tried as I do get a quick response to it when I've mikssed the odd dose but I'm not going to try and I don't recommend using it like that .
Can't say I've noticed any effect of it on my eating habits and definitely no weight loss .I've looked at what I eat and any triggers and if anything all this inactivity due to one end of my body playing up or the other has led to an extra 2 stone on me  :-\
Elaine xx

Offline The Wobbler

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Re: Does Betahistine work
« Reply #8 on: Jan 11 2012, 09:58 PM »
Elaine

These articles would have you believe otherwise.

http://www.dailymail.co.uk/health/article-437291/Vertigo-pill-new-obesity-wonderdrug.html

http://en.wikipedia.org/wiki/Betahistine

You do need to join the MDUK cycling club as well.  It currently only has 2 members but this thread is turning into a recruiting drive... :)

Offline jeannette

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Re: Does Betahistine work
« Reply #9 on: Jan 12 2012, 12:01 AM »
Re Betahistine and weight loss, I was quite happily a bit slimmer and lighter for a long time, but now that I've been put on the other drug for the migrainous side, this has weight gain effects - not so nice.   I'm trying to be a bit sensible, but with all the savouries cut out of my life, the occasional pudding is more tempting.   Ah well, you win some, you lose some.
Had a nice evening out celebrating our wedding anniversary, chose a nice 'safe' place, not crowded, no wild patterns etc.   I expect my dinner was a bit high on salt, but it was lovely.
I am a Serc believer - but rather like Wobbler, I don't intend - or see any reason - to stop taking it.   I don't want to do anything to deliberately set things on a downward spiral.

The thought of me cycling now is very funny.

Jeannette xx

Offline Feelingspinny

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Re: Does Betahistine work
« Reply #10 on: Jan 12 2012, 07:54 AM »
It's funny how the advantages of cycling has come up, living in Holland I cycle alot and have usually felt ok during and afterwards. They do pescribe the Betahistine differently here i've noticed, my specialist said she found people responded better to the 2x16mg am and 2x16mg pm method. No weightloss reported though- bummer! ;)

Offline Elaine

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Re: Does Betahistine work
« Reply #11 on: Jan 12 2012, 05:21 PM »
Thanks Wobbler .Think I've seen that Daily Mail article before but as I've not lost any weight I was sceptical about it  8)
I am a semi-member of the MD cycling club .I do go out on mine when the rest of my body is willing and also have an exercise bike in the house . Interestingly it was in Holland on holiday that this cycling thing started  :)
Elaine xx

Offline Emma

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Re: Does Betahistine work
« Reply #12 on: Jan 12 2012, 05:33 PM »
I was taking 3 x 8mg 3 times a day at one point and didn't loose a lb.!!! I feel robbed now :(
 :D
Be happy - Keep smiling :-D

Offline Belinda

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Re: Does Betahistine work
« Reply #13 on: Jan 25 2012, 07:55 PM »
Saw my consultant today, he advised me to stay on serc 16, 3 times aday, he seems to think its the best, told him l was to scared to come off it, it doesnt get rid of all the symptons but l think it helps.

Offline nephilim

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Re: Does Betahistine work
« Reply #14 on: Aug 03 2013, 03:40 PM »
Sorry to revive an old thread.

I was initially put on 8mg, and waited 2 months for the pills to work properly. Nothing happened, my dosage was increased twice, once to 16mg and once again to 24mg. Since being on 24mg, I have not yet had a full on attack (been 3 months now, worst I get is a bit dizzy in the morning getting up).

In the time since taking a high dose of betahistine, my weight has also dropped. I started my first course in January 2012 (8mg just for what was thought of as vertigo), then progressed up to 16mg in March 2012, and then to 24mg (January this year). I was 32st 13lbs (210kgs (ish)/420lbs (ish)), I am now 26st 7lbs (170kgs (ish)/340lbs (ish))...this is since January 2013.  I have not altered my diet in any way except for replacing milk with lactose free milk due to intolerance (I never liked cheese or anything else dairy).

A 6st 6lb (42kgs/84lbs) drop in a little over 7 months, without little changes to diet (above with milk and replacing chocolate bars with granola bars) or exercise (before my menieres I used to play rugby and cycle too and from training which was 8 miles away, to doing pretty much nothing now I have it), is evidence enough for me the pills work on weightloss. Once I have lost a further 2st I intend to start riding a bike again, since I have been unable to do much since getting vertigo symptoms on an almost daily basis. I realise getting to that weight was my fault, but I am working at the weightloss, and will be back down to my rugby weight of 18st 4lbs :)

Offline chrissieg

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Re: Does Betahistine work
« Reply #15 on: Aug 03 2013, 07:56 PM »
I'm really pleased for you- firstly that the meds seem to be working and secondly to have lost so much weight.
I'm afraid I had to have a little laugh though as the article I read said that it would only be likely to cause weight loss in pre menopausal women and you don't sound like one of those!!

Hope it continues

Chrissie
Chrissieg

Offline ladar

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Re: Does Betahistine work
« Reply #16 on: Aug 04 2013, 10:16 AM »
Hi

Like all of you I'm on Serc 1 x 16mg 3 times a day and I do wonder if they have any effect as I can't really remember what I was like before taking them.  So, I don't want to stop taking them in case they are helping.  I discussed this with my consultant and he said continue with them and also said that a higher dose is not usual.

Re the weight loss, I have lost half a stone and put this down to feeling sick so often (certainly not exercise) that I didn't want to eat anyway but maybe it is the effect of the Serc and if so it seems to have a negative and a positive effect.  Even though I hate feeling sick so much I will continue with the Serc as I don't want to imagine symptoms getting worse.

Is anyone having CBT for their MD anxiety.  My MD therapist suggested this as I was going through a really bad patch after the last vertigo attack and just couldn't get over the after effects as I usually did.  It's a slow job but CBT is helping even though it's a bit of a slow job - one step forward, two back sometimes.  It took me a while to decide to do it as I consider myself to be a strong person and have got through a number of physical conditions successfully.  But this MD is a completely different being  which plays with the mind as much as the body and I feel my mind is not as strong as my body on this occasion.

Linda

Offline judym

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Re: Does Betahistine work
« Reply #17 on: Aug 04 2013, 12:15 PM »
It's a great relief to hear the weight-loss effect! I was ignorant, (I never read the 'side effects' on drug packets - far too scarey!)  as was my gloomy GP, who was clearly thinking I had some form of cancer. The fact that I was in a very bad phase, with regular vertigo/atrocious balance was totally irrelevant.

Offline chrissieg

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Re: Does Betahistine work
« Reply #18 on: Aug 05 2013, 08:47 AM »
Hi Linda

Like you I was reluctant to admit I needed any psychological help but when it got to the point where I cried every time anyone asked me about my MD, I gave in and my employers organised CBT for 6 sessions for me with our inhouse psychologist. We use the therapy all the time in our individual and group work with clients so why I was not keen in the first place was pretty hypocritical really.
Anyway, it was my saviour . I spent the first 2 sessions crying- kind of mourning the loss of "old me" really , then we steadily moved forward. The most significant aspect was the growth in confidence which came with the exercises and I haven't really gone backwards since.
I would definatly recommend people try it. GPs can refer although that may take a bit longer.

Chrissie
Chrissieg

Offline Dr Fog

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Re: Does Betahistine work
« Reply #19 on: Aug 06 2013, 12:57 AM »
Deafo (excuse the pun) a Placebo stay off it for a month or two and you will feel the same and you will understand the cycle and stages of MD (the beast that bites back)  x   

Offline Dizzy Hoon

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Re: Does Betahistine work
« Reply #20 on: Aug 06 2013, 09:13 AM »
There is evidence to suggest that placebo's work even if research subjects are told they are taking the placebo.  I'd say it's horses for courses!

Offline The Wobbler

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Re: Does Betahistine work
« Reply #21 on: Aug 06 2013, 09:14 PM »
I donít think that there is anything definite about MD.  It is a riddle wrapped in a mystery inside an enigma.

Idiopathic, idiosyncratic, random, fluctuating, spectral conditions do not lend themselves to blanket statements.

We each have to find what works for us as individuals.  It seems to me that Betahistine is helping many (for whatever reason).  However exceptions do not prove any rules.

Have you tried cycling Dr Fog?  It helps some, and the MDUKCC has increased its membership by 50% recently.

Offline Dizzy Hoon

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Re: Does Betahistine work
« Reply #22 on: Aug 06 2013, 09:23 PM »
Pharmaceutical companies spends years and thousands of pounds researching the efficacy of medications.  In order to start research companies have to ensure a certain level of ethical standards.  They just wouldn't be able to undertake all that research and launch a product that was a placebo.

My previous comment about "horses for courses" was intended as a comment about medication working for some and not for others.

Offline Dr Fog

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Re: Does Betahistine work
« Reply #23 on: Aug 08 2013, 12:38 AM »
I too do not want another WW3 as the MDWW3 I've lived with for 19 years is bad enough!.
I also think we live in a land of free speech and Internet forums like this no matter what comments are posted it should be up to the individual readers to read into comments as the feel fit(or Dizzy).
From my personal experience I personally feel from my experience with MD over the years that Serc is a placebo no one will change my mind on this subject and I will never go down that Serc course again.
I only wish I had the 10+ years of the prescription charges back in my wallet and the little white pill "well that's now confined to history for me".
I personally think I was only keeping the manufacturers and directors of Serc in Louis 13th Hennessy Cognac on board their yacht's.
This is only my personal experience with Serc and please do not follow my example or thoughts in any way but all I can say is "I've been there, I'm still in there and trying to find a way out".

Wobbler the bike thing made me laugh! but I can sort of see where your coming from.
I'm now so much into the natural way and none pocket lining way.
May be the re-learning to ride/balance experience could be good? I even still have a unicycle I got when I was 21 so may be I could up the auntie will let you know ;).
Now where's my pump & WD40 Take care out there  :)   

Offline The Wobbler

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Re: Does Betahistine work
« Reply #24 on: Aug 08 2013, 06:42 AM »
Foggy

Here, unlike with MD, I do feel better qualified to give advice.  Do not use WD40!  :police:  It drives the lubricants out of chains and running gear.  If you must spray then GT85 is a better bet.  Personally I recommend a high quality lubricant like Wet Lube by Finish Line.

MDUKCC members report improved health and wellbeing from being out on the pedals.  We also believe that getting the blood flowing helps circulation and therefore inner ear issues.

The club is active on Strava, where with the help of GPS or smart phone apps, individual ride details are shared for kudos and/or opprobrium.

P.S. Not sure about the unicycle Ė sounds like 'a bridge too far' to me...  ;)

Offline Pads

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Re: Does Betahistine work
« Reply #25 on: Aug 08 2013, 10:33 AM »
As you know betahistine is not a cure, all it does they think, is increase bloodflow to the inner ear, thereby reducing endolymphatic hydrops (we hope) by shifting the balance of production and re-absorption of endolymph toward absorption.

When I first started taking betahistine it stopped my spins immediately (16x3), although only for a short term (a few weeks).  Placebo maybe, it certainly helped anyway.
Since then I have had a couple of steroid injections, after the first I felt great.  A couple of months later I had a second which didn't seem so effective, although I think the inner ear battle had been calmed down a little, as the edge was taken off my symptoms and violence of spins.

Currently I am looking into high dosage betahistine and take 48mg three times a day.  So far I haven't had any spins as such, I have had a few instances which I'm sure would have previously turned into an intense short spin but haven't.  I'm coming up to 3 months without vertigo, whereas for the last year I couldn't go for more than a few days, so I'm pretty positive that the high dose has been having an effect.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002631/figure/fig2-1756285609103120/

Good luck
Pads

Offline nephilim

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Re: Does Betahistine work
« Reply #26 on: Aug 27 2013, 01:11 PM »
My daily dose is now 24mg 3x a day, soon to be upped to 32mg 3x a day. My body builds a tollerance to medication exceedingly fast, but its been the only medication that has worked for me for the dizziness.