The Vestibular Migraine Community

Betahistine, Olanzapine, Labs and Migraines?


#1

Hi guys,

Firstly thank you for all the discussion, I’m a long time follower, first time poster.
I’ve never had the energy or clarity to post here, due to my symptoms, although I always intended too, and now I would really like some advice.

My story:
I have recently been diagnosed with uncompensated, (probably viral) labyrinthitis. I’ve been dealing with that for 9+ years, it just came on suddenly and plateaued and I learned to deal with it (off balance, SSD, tinnitus). Also just diagnosed with migraines (the headache part isn’t intense for me, just the constant sound sensitivity, brain fog, visual disturbances, anxiety, general disequilibrium/dizziness has kept me out of work for the last 12 months).
My neurologist put me on Betahistine 16mg 3x daily for 3 months until he ruled out Meniere’s disease and other issues (MRI, Lumbar Puncture, bloods all good - labyrinthine enhancement on MRI. Also vestibular and audiologist testing). Started VRT for the labyrinthitis. Then he told me to stop the Betshistine and start on Effexor XR (37.5mg).

Both bad ideas in hindsight.
I had a bad reaction to the Effexor after one dose, had my first full-scale panic attack 2 days later and ended up in an ongoing agitated state, which is now being treated with Olanzapine 5mg daily. Seems to be helping a little, but I still have the ongoing MAV issues keeping me in a constant anxiety.

A couple of days after stopping, I curiously added the Betshistine back in, as I was concerned that a sudden discontinuation could have contributed to these issues. Felt a little better almost immediately. I want to stop taking it. Since taking this in January, I am getting some Eustachian tube popping and crackling that the hospital doctor said could be caused by taking Betshistine, plus the neuro said to stop taking it, I’m trying to wean off it. Even though there isn’t much evidence that says that it even does anything. I really notice it when I don’t take it. I am in a perpetual heightened state of anxiety (especially in the mornings once it’s worn off) and I guess the best way to describe it is, everytime my eyes move and focus on something else, my body goes into a little shock while it adjusts to the new stimuli. This is especially frustrating while walking or doing anything really.
I should add that I don’t really get vertigo (spinning) unless I am stressed, even then it is quite tame compared to some of your stories here.
I am now on half that dose 8mg x3.

Is anyone aware of these kinds of effects with Betshistine? Is it something about the receptors that it works on, have they done some sort of damage/dependence over almost 4 months of use??

Also, it would be great if anyone could shed some light on my overall condition. I noticed significant reduction in all my symptoms after starting on Olanzapine 2.5mg, but not as much after the increase (been on it 10 days now). I’m also not convinced this is the drug for me, even though it is helping. They were going to order more scans (EEG, new MRI, even see a neuro-psych) but never happened. I see the psych again next week. I don’t want to be on this drug long term.

Thanks in advance!

PS. Feel free to move if this is in the wrong section


Next meds to try?
#2

Hi dragon22.

I am very sensitive to the side effects of medication, but Betahistine was the only one that gave me virtually none. I was on it for about 4 months as well. 16mg x 3. My ENT consultant said that it probably wasn’t doing very much so it might be sensible to stop it. I did, but then got dizzy so I put myself back on it again. To be honest I am not sure if it was the ENT consultant upsetting me that started the dizziness off or the lack of Betahistine. But I did get it when I stopped it.

I had what I described as a rushing sound/sensation in my ears when I first started it but after that I didn’t attribute any other ear symptoms to it. Though I did have some on/off ear pain towards the end of my time on it. I always blamed that on the effects of other meds.

One other thing I did notice was that I felt a bit restless at the beginning on Betahistine, but again, I can’t be sure it was that because I had recently had a bad experience with Topiramate, and then went briefly back on low dose Propranolol, which I then stopped (which may have caused restlessness). So I can’t say for definite that the Betahistine caused it but it may have contributed.

Sorry to hear about that horrible reaction to Venlafaxine. I hope you feel better soon.


#3

Hi Sarah356,

Thanks for the reply.

How did you get off it in the end? Cold-turkey? Symptom free?

Also, what do you mean when you said stopping it initially made you dizzy?
I know, I know, we’re always asked to elaborate on ‘dizziness’, I’m just curious if your symptoms mimicked mine.

Thanks again


#4

Hi there. The first time I stopped it was when I had an ENT appointment one morning and was told it probably wasn’t doing much. I missed my lunchtime dose and was dizzy by teatime. I remember feeling lightheaded and I think it was then the kind of dizziness that I take medication to prevent, kind of like being seasick. I had to take a couple of days off work following that.

The appointment was horrible though and I was very upset by it, so that could have been what brought it on.

I restarted it again, not sure but I think it was the next day.

I then carried it on for about 3 weeks, including through my Zonisamide trial. But when I had to stop that my GP told me I had to come off the Betahistine before I could take Amitriptyline so I just stopped it then and went straight on to Amitriptyline (another failed med trial).

I didn’t get anything much in the way of withdrawal effects from Betahistine as far as I know. And I didn’t taper off it, just stopped.

To be honest I was never really sure how much it was doing when I was on it but I took it in case it was helping. Psychologically it was helping because I was taking something rather than nothing! But physically?? I honestly don’t know.

Sorry I can’t be more help.


#5

Sorry to hijack thread but having done a lot of reading, it’s oft said in scientific literature that Betahistine’s effect is rarely better than placebo … so would concur with Sarah’s thoughts.

But who knows? Medical science continues to evolve …

I have a friend who was diagnosed with ‘Menieres’ a few years back who swears by it (take that diagnosis with a pinch of salt as could have easily been PLF or MAV imho).


#6

I completely agree, but stopping it, or even missing a dose seems to be having a profound effect on me. Strong placebo?
All of my sensory inputs seem to be heightened (more-so than my already heightened state)

Simple movements like that of my head and eyes to re-focus on something else instigates more anxiety.

Weird.

I’ve just conveyed all this to my Neurologist, hopefully he has a solution.


#7

I’ve been wondering myself. I was on betahistine for a year and was doing quite well. Then went off when I was diagnosed with MAV and took a nosedive. I’ve always wondered if there’s a connection. I’m on amitriptyline now but my BP is up too high.

Also betahistine kept me slim!


#8

This is interesting. Betahistine was by far the easiest medication for me to take (no nasty SE’s), I just wish there was a way to know if I would have been worse without it, i.e. how much it helps. I suppose trying it again is always an option. Maybe for you too?


#9

I’m on a crazy cocktail of meds at low doses and can’t really imagine adding any more. Sadly. My stability is so fragile. But I might if things go bad again. I’m actually working right PT now, though no computer. I went from the head of my own company to a household manager. Oh well. Vertigo. Wasn’t even on Trump’s pre-existing condition list. That’s how obscure we are!


#10

Sorry to hear that, but glad to hear that what you are taking is at least helping in some way. Can you stay on Amitriptyline if it has caused you to have high blood pressure?


#11

It’s borderline. So: I’m losing more weight (which went up a little on the Ami.) Starting intense exercise routine. Slashing salt. 3 cups of hibiscus tea a day. Supplements. I’ll try anything and everything.

I’m a Vertigo Warrior. Whatever it takes.


#12

Go for it!!


#13

Well done, sounds tiring :slight_smile:. So the Amitriptyline has worked enough for you to want to fight to stay on it? I guess it has it you are able to do intense exercise. Can I ask if the weight gain it causes is much?


#14

About 5 lbs and I’m only on 15mg. It makes you crave carbs. I’m also on low dose Effexor which curbs the appetite but that made me a little bit aggressive which is unusual. Trazadone for sleep and Klonopin as a vestibular suppressant and anti-anxiety. All low doses. Oh plus an antiviral seems to help as well. I’m just a walking medicine cabinet!


#15

Avoid the carb binges if you can. If I’m right about my theory on this they would exacerbate symptoms.

Btw I have same issue. Biscuits!!

Does Klonopin help with nausea?

I’m getting sneak through nausea again recently. It’s sooooo annoying!


#16

That’s quite a list. :slight_smile: 5 lbs isn’t so much. There is someone here who said she gained about 5st on Pizotifen! I took one tablet lol and felt compelled to eat all day so I can understand how! I asked because I may try Amitriptyline again. Did you get any facial numbness from it, at first, or at all? Or any change in your heart rate that you were aware of? Or any tinnitus or ear pain? That’s the lot. Sorry about all the questions. One more, is Klonopin good for anxiety?


#17

Klonopin is lovely. My lovely friend. All my life I have taken tiny doses of it on airplanes, before speaking engagements (I used to do TED talks and the like) and during stressful life moments. Little occasional slivers were enough for me. It’s highly addictive. It saved me during postpartum depression too which was one long panic attack. So when I found out that it is also a vestibular suppressant, I was delighted. I have to be careful though because it works so well and is addictive. I take 25mg, half the smallest dose at night.

No other weird SEs on Ami. I’m only on 15mg though. and the 5lbs is now mostly off. And the BP is close to normal. I think my BP issue is possibly the weight gain, even the 5 lbs. I should be at 140 lbs. Period. If I start going beyond that, my BP goes up. When I was pregnant, it went up. When I was depressed and stopped exercising, it went up. It’s just very tempermental.

I might try Betahistine again. Just to know. And vestibular therapy. Trying everything.

Good luck!

Shazam


#18

I have to say its very tempting to ‘go the whole mile’ on meds and just ride it all out in a blissful haze.

I’m still hopeful this nightmare will fizzle out at some point so trying to be conservative.

I’m also conscious that the more vestibular suppressants you take, the tougher it is for the brain to compensate. I’ve noticed that my brain is FAR LESS irritated by my crap ear issues now than it was a year ago when it felt like I had a balloon stuffed inside my skull on one side, so I think I may have got the balance about right … who knows …

Fantastic you did TED talks!


#19

I like to think so too.

I have a current cocktail that, at least, has made me comfortable and somewhat functional for the time being. I hope that x amount of time on the meds would be enough to let the brain relax, recoup and rewire… thats my hope anyway. It would be much nicer to know the underlying cause of it all.

I have now started on Sodium Valproate (known as Epilim here in Oz) 200mg twice a day. This is added to my recent start on Olanzapine 5mg once daily. Both drugs have an anti-anxiety component, and I think I already feel that coming through on the Epilim. It’s like a mild diazepam feeling (apparently it works on GABA too).
I believe that the Epilim is working to calm me down so that I don’t need the Olanz any more.
Today is my 6th day off the Betahistine, and I seem to be better off without it. Although I still think there is some fluid behind the ear drum - maybe an antihistamine will help. I honestly think that the motion and visual disturbances that I mentioned originally were possibly not due to the Betahistine, but due to the constant anxious state this illness leaves a lot of us in. In turn, by treating that, a lot of my other symptoms seem to be lessened.

Its only day 3 on this combination, but I will be reducing the Olanz dose tonight, and I feel hope and optimism from the introduction of Epilim. Things just seem a little ‘better’ and I am calmer. Almost to the point where I can start the VRT for my Labyrinthitis again.
Oh yes, Epilim = appetite. Both drugs do. Its a weird feeling to have a completely full stomach yet the brain just wants to eat!


#20

Thanks for the response and I hope it all works out for you. it sounds like you are very controlled in your use of Klonopin as you have taken small doses of it all your life yet not needed more and more to get the same effect.

You may only be on 15mg of Amitrityline, but I had all those SE’s I mentioned on 5mg!