Difference in MAV drug strategies: UK vs US vs ... ?

Helen, I believe you are in UK? Here in US, venlafaxine is given frequently off label for chronic pain/fibromyalgia- it’s what my rheumatologist suggested. As is Topomax, although less frequently. Both for chronic and neuropathic pain. We don’t have flunarazine available here in US so I cannot speak to that drug.

I think there’s a bit of a disconnect when US/UK people discuss meds. Many meds in UK are not available here, and Dr’s “accepted” practices and theories can vary widely!

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Really? I think Hain’s flowchart, for example, shows drugs available in both jurisdictions. I don’t think there are any drugs used in UK not available to US folks? It’s probably quite the opposite.

That is certainly true.

Doctors in the UK seem to be far less likely to prescribe an SSRI or an anticonvulsant. There is a perception (unfair perhaps) that US doctors are a bit trigger happy with prescriptions to stronger drugs. Comes from the Prozac scandals and perceived over prescription of opioids.

We are more of a Nort, Ami, Prop shop I guess. However if venlafaxine or citalopram, for example, is advised that is surely available.

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I was referring to Flunarazine, which is not available in US. That was one of the 3 drugs on the list we (Helen and I) were discussing (from the presentation I posted upstream). Betahistine, while not part of that discussion, is also not available in US. It is possible to get Betahistine by a compounding pharmacy here, but not available in the vast majority of pharmacies nor covered by insurance.

“Flunarizine, sold under the brand name Sibelium among others, is a drug classified as a calcium antagonist which is used for various indications. It is not available by prescription in the United States or Japan”

“Betahistine is a treatment for dizziness and hearing problems. It has a strange history and in the United States, Serc is in the possibly unique position of being a substance categorized as a placebo by the FDA”

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Ah that’s true. Good catch. Yes indeed.

Betahistine really isn’t a very well proven drug scientifically (it fails Cochrane review?). So I don’t think the US is missing much there. But some people swear by it …

What about flunarizine?

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Yes you may have also observed another difference there.

I mean, what do you think of its efficacy?

Pass. Can’t comment. We would need to consult the literature.

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@turnitaround not sure if you’ve seen this. Very interesting- I did post upstream


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Good summaries.

I sure am. In the UK that is. Oh, and I’ve yet to come across any medics with accepted MAV theories and practices. 90% don’t recognise its existence as yet. The two neuros I’ve seen just treat it as ‘migraine’, same preventatives used. The Migraine Specialist Neuro - who I saw because I’d read newspaper article about her being first to use nerve Block for severe classic migraine treatment which gave me some hope she could think outside the box - told me (1) Sodium Valproate (2) propranolol and (3) amitriptyline. That’s the lot according to her. I suspect the UK has a stock pile of these long established drugs to ‘use up’ somewhere but James tells me I’m cynical! I had no idea they use Venlafaxine and more surprise still Topamax in such a way in US.

The neuro-otologist I saw suggested amitriptyline, atenolol, topiramate or sodium valproate as alternatives to propranolol after stating ‘I did not think you had any significant neurological disease as the cause of your symptoms but it is possible there are elements of migraine and that migraine preventative medication may be helpful … as I can’t see any other potential helpful approaches’.

I’ve never used any abortives. Never taken Ibrufen in my life. Never been suggested to do so. Not by anybody. It really stopped vertigo? Cannot imagine that. I know you get Basiliar type migraine so assume you’ve been bedridden without balance unable to stand days on end or open your eyes cos the room is spinning out of control? Surely Ibrufen did stop that sort of dizziness? Fascinating conversation though I have to admit. Helen

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Pizotifen is the one comes to my mind. There are restrictions in UK on Flunazarine usage. Can only be prescribed by a specialist consultant I believe. I do think UK restrict use of some drugs, particularly through NHS, because of time constraints with regards to necessary follow-up tests (Verapamil comes to mind here). US patients seem to get more follow up appointments, after care than we do in UK. I don’t think UK doctors really understand the disruption MAV can cause to quality of life. They don’t take it seriously enough. Completely different approach to US. I was misdiagnosed as BPPV for twelve years and told ‘there’s no treatment for that’, and that’s what I got. No treatment. Nothing. Years later when I was dehydrating due to excess vomiting they suddenly ‘discovered’ Buccastem existed!

Certainly right there. UK GPs wouldn’t dream of offering Valium to take because of nervousness over vertigo. I never had reason to ask but any Benzos are Big No No. i was offered two tiny Vallium to take night before my MRI by a GP I didn’t know but didn’t take them because I would have been too drowsy to wake to the 5.00am alarm next day. I knew that from past experience years before. Helen

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Helen, below is directly from the Tarnutzer VM presentation linked twice in this thread. And yes, as I’ve said, it has staved off an attack if I caught it early enough. My Neuro also tells me to use it as a rescue for Basilar attacks- she doesn’t like triptans for those:

“Vestibular migraine: treatment
NSAR (e.g. Naproxen 500mg or Ibuprofen 400-800mg)
Aspirin 500-1000mg
Paracetamol 1000mg
Combined analgetics”

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Do they actually mean All this lot? Surely not. Catching it early would be difficult. I always just wake up with it first thing in the morning and it’s going full throttle by then, full rear head pressure and totally unable to stand up. No warning given. Still it’s an interesting thought and after fifteen and more years would have been interesting to know if it would work mid-January, Helen

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@Onandon03 I did my best to cut/paste from the PDF. It lists those as rescues, not to be taken all together!
When I get an “attack”, it starts as ringing in my head, but more in left ear (ringing above baseline). Then I get a floaty feeling, like a mild rocking. Then my left side of face gets “pressurized” and neck muscles crunchier than normal. This develops over a few minutes. I go immediately and take 600mg of ibuprofen. About half the time, it will go away within 30min. If not, I then have to take klonopin. That then knocks it completely out. If I don’t take anything, it progresses to a basilar migraine, with major rocking dizziness, screaming tinnitus, tingling in my face/leg, uncoordinated walking, inability to find words, wavy vision (like looking at heat coming off a road). I do not always get the base of skull death headache, but the Neuro says it meets the official definition of basilar migraine (now called migraine with brainstem aura) by meeting a certain number of symptoms.

When I’ve had a prolonged dizziness (weeks) that is not a basilar attack (seems more inner ear, always with fluctuating tinnitus), the only thing that really helps me is a steroid pack.

For all of this, effexor has been THE BEST preventative I’ve tried. If it wasn’t for the insomnia, it would be almost perfect. Like I said, it stopped an extended flare at 8 beads!!! No steroids for me this time.

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Well thanks for all that info. I’d never thought I’d qualify for Basiliar Migraine criteria but following this conversation am somewhat surprised to find I most probably do. Quite easily. Fortunately the Propranolol has controlled the acute attacks quite magnificently really. So far only one attack in over three years. I also have had whole days, several in a row and indeed recently ten days of ‘normality’ - first in four years recently but somehow it seems the Propranolol is struggling and I get long periods of continuing imbalance. The Propranolol doesn’t seem to cope with extra stimulation over a base level. That’s why I keep looking to Add Ins but then at other times I just wonder whether it will eventually settle without or whether that’s how it’s going to be on into the future. And that it’s asking too much to expect more, Who knows.

Another example of those cross Atlantic differences. No Benzos here.

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Oh they are getting very hard to get here too. I really try to save them for the worst times when I have to function.

Helen, have you ever tried to get off propranolol? I’m asking because I would like to, but even with tapering, once I get to 20mg 2x a day, my heart tends to race and I get anxiety. I would stay on propranolol forever except for the weight gain :worried:

Maybe microdose effexor? I was shocked that it worked so well for me at such a tiny dose. But I have read about that experience with others on another board. I am already prone to insomnia, so it was bad for me in that regard. But if I was not working, I could’ve dealt with it for sure.

Amazing so little did some much foryou and frustrating you couldn’t keep with it. You seem to have same sort of ‘luck’ I do.

No. I understand you need to do it as slowly as you got on it which was three months and more from reckoning with me. Actually my doctor was very anxious I didn’t want to get off it when I started discussing adding in Venlafaxine. I could hear it in her voice. I think I could be stuck on it ‘for ever’ now. It’s worked so well. I’ve only had one full on attack in over three years since I swallowed the very first PP pill compared to 5-6 (no exact record made) in the previous twelve months, and it’s sorted the extreme photophobia (that had me housebound a year) almost entirely, and if I awake with rear head pressure I swallow the pills and I can feel the pressure recede/disappear within 30 minutes or so. I’ve no urge to come off it. Most preventatives cause weight gain as does the enforced reduced activity of living with balance issues. Fortunately I was too slim to start with so weight gain hasn’t pushed me into being enormous. I’ll settle for larger size clothes over weeks flat in bed in the dark anytime. It has had a slowing up effect on my personality (used to be bit on the hyper side I suppose which is another reason for my not taking Venlafaxine - it could have activating effect on me like it did you!) my doctor did predict that and said it wouldn’t do me any harm. Very observant of her I suppose as we’ve only met face-to-face once ever. Helen