Author Topic: Reduction of betahistine  (Read 2558 times)

Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Reduction of betahistine
« on: Jun 01 2017, 11:23 AM »
Hi
I am new this forum.
My name is Nadia and my mum has had MD since July 15. She had cluster of attacks till October 15 then they stopped for 18 months.

Since Mar 17 she started to get them again but not as bad as what she had at the start when she was so sick that we had to get her into hospital.

Today we went to the docs to see if they would give her diuretics but when he checked her blood pressure it was low so he didn't press river them. He also said he has to reduce the betahistine to 8mg from 16mg coz that could be causing her blood pressure to drop.

My mum is worried now that by taking 8mg, she's going to have bad attacks again.

Has anyone ever had to reduce their done if betahistine? Has it caused more acute attacks or has it helped?

The doc did say that he wants my mum to try it and if by tomorrow it makes things worse then to contact him.

Any advice or help is much appreciated!!

Thanks!
Nadia

Offline harry

  • Senior member
  • ****
  • Posts: 312
    • View Profile
Re: Reduction of betahistine
« Reply #1 on: Jun 01 2017, 05:38 PM »
Hi Nadia
Welcome to the site.
I am no doctor but I am unaware of any link between Betahistine and low blood pressure. Diretics yes but SERc no.

SERC (betahistine) is not an immediate impact drug so I would be very surprised it any change is noticed within 24 hours changes normally take weeks/months. I afraid I am no expert on low dosage of betahistine and have not heard of anyone taking such a low dose. ( do you mean 8mg/16mg x 3 x per day?) I take 64mg x 3 xper day with no side effects (have been higher) and have done for several years. I understand that 24 mg (8 x 3 xper day) would have little if any impact on MD

You must remember that Meniere's comes and goes with no real pattern can last for hours/days/months and disappear for days/months/years then return.

Good Luck

So try not predict and worry about it.  Focus on each day and deal with how she feels each day.The more she worries about the "next attack" the more stressed she will get which in turn will make her MD worse. I would suggest that if no change to blood pressure after say 2 weeks then ask to go back up to 16mg x 3 x per day. which is the standard uk dosage.

Harry


Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Re: Reduction of betahistine
« Reply #2 on: Jun 01 2017, 06:31 PM »
Hi Harry

Thanks for replying!

She was on 3x16mg and the doc said the tabs maybe causing low blood pressure so reduced it to 3x8mg.

I spoke to a friend whose a pharmacist and she also said that reduce got it may make no different so either stay the same or take 2x16mg a day.

The doc has arranged for my mum to have an ecg to check your blood pressure is low.

You are on quite a high dosage. Does it help? When was the last time you had an acute attacks?

I have been doing research but treatment that works for 1 person doesn't work another. Just try8ng to find a treatment that will help longer term.

It's an awful disease and I really feel for those who have it.

Thanks!!
Nadia

Offline harry

  • Senior member
  • ****
  • Posts: 312
    • View Profile
Re: Reduction of betahistine
« Reply #3 on: Jun 01 2017, 09:20 PM »
Hi Nadia,

I have kept a sort blog/update on my SERC journey on here. Scroll down on main list to "high dosage SERC update" or search.

Due to update again in July after next consultant visit but no big vertigo attack since May 2016.

You are right that SERC works for some and not so well for others,but it is a recognised treatment in UK and Europe and I find that it works for me (but I have to take a VERY high dosage )

Be aware that GP's have very little knowledge of MD and will be reluctant to prescribe higher dosage of SERC. Referral to ENT at hospital is needed.

Harry

Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Re: Reduction of betahistine
« Reply #4 on: Jun 02 2017, 08:57 AM »
Hi Harry,

Thanks I will check it out.

My mum has an ENT appointment in July.

Thanks!

Nadia

Offline Spinner

  • Admin
  • *****
  • Posts: 105
    • View Profile
Re: Reduction of betahistine
« Reply #5 on: Jun 02 2017, 02:36 PM »
Have a look at the videos here:

http://www.mduk.org/index.php?topic=5259.0

There's some thinking there that you should let the body sort itself out. Also, certainly in my case, relaxation techniques helped bring it under control. Placebo based surveys have proved that betahistine has no benefit, although I really thought it helped me at the time.

What finally made the biggest difference to me, and I think has kept vertigo away for 6 years now, is taking up a sport and becoming fit. Not an option for everyone, but something to consider if it is an option. The MDUK cycling club accepts all kinds of members, even ones who don't have a bicycle 8)

Offline Gatzby

  • Member
  • ***
  • Posts: 59
  • Gender: Male
    • View Profile
Re: Reduction of betahistine
« Reply #6 on: Jun 02 2017, 03:53 PM »
I'm sorry but in my opinion Betahistine has kept me from having spins. Three months ago when I saw Dr Fraine she said that it might be a good idea to start reducing my dose of SERC ( I take two 16 mg tabs 3times a day) This I complied with and gradually started to reduce my dose by one tablet a week for the first week and one more tablet in subsequent weeks until I was on one 16mg tab three times a day and then the spins came back. I had a word with my chemist and he advised to go back to my two tabs three times a day, this I did and within ten to fourteen days I was back to how I was before . Dr Fraine seemed to think that the benefit betahistine gave me was purely psychological, I beg to differ they keep me on the straight and narrow, I have no side effects from taking SERC my BP is fine and everything else is in working order and I take regular exercise. My quality of life over the past twelve months or so since upping my tablets to the present level ( except for the blip I mentioned earlier) has been quite good. I see Dr Fraine in a couple of weeks time and will be interested to hear what she has to say about SERC I know Mr Rae isn't prescribing it anymore.
God is a figment of the imagination according to Stephen Hawking and I agree with him.

Offline harry

  • Senior member
  • ****
  • Posts: 312
    • View Profile
Re: Reduction of betahistine
« Reply #7 on: Jun 02 2017, 05:34 PM »
Anyone know why Mr Rae has stopped prescribing SERC? and what his alternative treatment is ?

Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Re: Reduction of betahistine
« Reply #8 on: Jun 03 2017, 10:01 AM »
Thanks Spinner,

I will take a look.

Nadia

Offline The Wobbler

  • Trusted member
  • *****
  • Posts: 451
    • View Profile
Re: Reduction of betahistine
« Reply #9 on: Jun 03 2017, 12:40 PM »
If Betahistine is a placebo, which I very much doubt, then it is probably the very best one on the market!  I believe the minimum dose for good long term control is 16mg x3.  I am surprised to hear that it impacts on blood pressure that has never been mentioned by GPs or ENTs that I have seen.

Furthermore it is not listed as a possible side effect on the Patient Information Leaflet that comes in the box.

I would question this advice and ask for evidence based reasons to lower a dosage that is working.

Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Re: Reduction of betahistine
« Reply #10 on: Jun 03 2017, 07:57 PM »
Hi Wobbler

Yes I am going to speak to the ENT consultant in July.


Thanks!!

Offline Spinner

  • Admin
  • *****
  • Posts: 105
    • View Profile
Re: Reduction of betahistine
« Reply #11 on: Jun 04 2017, 07:00 PM »
My statement was based on the findings of a fairly large and lengthy research exercise :)

One point of interest is that betahistine reduces your appetite (its sometimes used as a diet pill), and that gives the body and brain a whole lot less to deal with (if without it you eat more than you need).

I wonder if reducing diet and keeping yourself slightly hungry would be as effective as taking betahistine!

Still, if betahistine works for you, keep using it ! 

At the time I had vertigo, stopping betahistine seemed to bring it back, and starting it again made it go away, so I was pretty convinced it was effective too. But its hard to ignore that research.

Offline chrissieg

  • Trusted member
  • *****
  • Posts: 741
  • Gender: Female
    • View Profile
Re: Reduction of betahistine
« Reply #12 on: Jun 10 2017, 10:16 PM »
I'm another Serc believer and keep taking 16 x 3 as a preventative. I looked into the weight loss/appetite issue as it seemed an attractive side effect but found out it was only suggested betahistine might have a slight similar effect in post menopausal women.

Chrissie
Chrissieg

Offline nadia

  • Visitor
  • *
  • Posts: 7
    • View Profile
Re: Reduction of betahistine
« Reply #13 on: Jun 11 2017, 08:19 AM »
What stage are you at chrissy?

I think my mum is at stage 2.

I really hope she goes into long term remission like I've heard many people have.

Nadia

Offline harry

  • Senior member
  • ****
  • Posts: 312
    • View Profile
Re: Reduction of betahistine
« Reply #14 on: Jun 11 2017, 02:50 PM »
Hi Nadia,

With the greatest of respect. Have you been told your Mum is at stage 2 by a consultant or have you decided that is the case based on internet information?

I say this because whilst the 3 stage theory of Meniere's is often spoken about. It should be remembered that MD is VERY unpredictable and is NOT the same for everyone. It will last for many years (I am at least 18 years + and it often takes a while for someone to diagnose it)

Try not to label things and look to control them. Because you will be VERY disappointed when things don't happen as you think they should.

Simply try out the different treatment ideas - Diet,low salt, SERC etc  - give it plenty f time to see if it makes a difference - and ACCEPT that this illness is long term, complicated , has no real cure and VERY unpredictable.

Each day will be different your Mum will have bad days and good days. Enjoy the good days and try not to live in fear of the bad days. In time the good days will last longer and remission period will be longer but it can always come back.

There is a theory that after some time (several years) the decease does burn itself out.But your Mum really does need to get a proper diagnosis and then live the best life that she can each day and not get herself down too much. Make plans for the future, go out when she can and if she is having a bad MD day then simply change the plan and arrange it for another day.

You CANNOT  control MD but if you are not careful you will allow MD to take control of YOU. Lots of people new to MD want to control it and want lots of answers and most importantly they want a cure. I am afraid it simply does not work that way and you just have to try things and see if it helps but you have to learn to live with it rather than try to fight it.

I hope you don't read this in a negative way and understand what I am trying to say.

Kind regards

Harry






Offline The Wobbler

  • Trusted member
  • *****
  • Posts: 451
    • View Profile
Re: Reduction of betahistine
« Reply #15 on: Jun 11 2017, 03:28 PM »
Harry is on the money.

I would add that there are also dietary and lifestyle factors at work.  There is no magic bullet cure that we know of.  Remission can last days, weeks or years.

Reducing stress and boosting the immune system with adequate exercise, good diet and sleep will help fight the battle.  Beware the negative feedback loop where the more you stress about the condition the worse it gets...