Helen, I believe you are in UK? Here in US, venlafaxine is given frequently off label for chronic pain/fibromyalgia- itās what my rheumatologist suggested. As is Topomax, although less frequently. Both for chronic and neuropathic pain. We donāt have flunarazine available here in US so I cannot speak to that drug.
I think thereās a bit of a disconnect when US/UK people discuss meds. Many meds in UK are not available here, and Drās āacceptedā practices and theories can vary widely!
Really? I think Hainās flowchart, for example, shows drugs available in both jurisdictions. I donāt think there are any drugs used in UK not available to US folks? Itās 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.
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.
āFlunarizine, 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 Japanā
āBetahistine 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 FDAā
Ah thatās true. Good catch. Yes indeed.
Betahistine really isnāt a very well proven drug scientifically (it fails Cochrane review?). So I donāt think the US is missing much there. But some people swear by it ā¦
What about flunarizine?
Yes you may have also observed another difference there.
I mean, what do you think of its efficacy?
Pass. Canāt comment. We would need to consult the literature.
@turnitaround not sure if youāve seen this. Very interesting- I did post upstream
https://www.ean.org/fileadmin/user_upload/Tarnutzer_vm_vs_MD_ean_2018_v1.pdf
Good summaries.
I sure am. In the UK that is. Oh, and Iāve yet to come across any medics with accepted MAV theories and practices. 90% donāt recognise its existence as yet. The two neuros Iāve seen just treat it as āmigraineā, same preventatives used. The Migraine Specialist Neuro - who I saw because Iād 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. Thatās the lot according to her. I suspect the UK has a stock pile of these long established drugs to āuse upā somewhere but James tells me Iām 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 āI 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 ā¦ as I canāt see any other potential helpful approachesā.
Iāve 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 youāve 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
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 donāt think UK doctors really understand the disruption MAV can cause to quality of life. They donāt take it seriously enough. Completely different approach to US. I was misdiagnosed as BPPV for twelve years and told āthereās no treatment for thatā, and thatās what I got. No treatment. Nothing. Years later when I was dehydrating due to excess vomiting they suddenly ādiscoveredā Buccastem existed!
Certainly right there. UK GPs wouldnāt 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 didnāt know but didnāt 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
Helen, below is directly from the Tarnutzer VM presentation linked twice in this thread. And yes, as Iāve 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 doesnāt like triptans for those:
āVestibular migraine: treatment
NSAR (e.g. Naproxen 500mg or Ibuprofen 400-800mg)
Aspirin 500-1000mg
Paracetamol 1000mg
Combined analgeticsā
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 itās going full throttle by then, full rear head pressure and totally unable to stand up. No warning given. Still itās an interesting thought and after fifteen and more years would have been interesting to know if it would work mid-January, Helen
@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 āattackā, 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 āpressurizedā 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 donāt 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 Iāve 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 Iāve tried. If it wasnāt 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.
Well thanks for all that info. Iād never thought Iād 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 ānormalityā - first in four years recently but somehow it seems the Propranolol is struggling and I get long periods of continuing imbalance. The Propranolol doesnāt seem to cope with extra stimulation over a base level. Thatās why I keep looking to Add Ins but then at other times I just wonder whether it will eventually settle without or whether thatās how itās going to be on into the future. And that itās asking too much to expect more, Who knows.
Another example of those cross Atlantic differences. No Benzos here.
Helen
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? Iām 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 
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 couldāve dealt with it for sure.
Amazing so little did some much foryou and frustrating you couldnāt keep with it. You seem to have same sort of āluckā 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 didnāt 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 āfor everā now. Itās worked so well. Iāve 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 itās 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. Iāve 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 hasnāt pushed me into being enormous. Iāll 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 wouldnāt do me any harm. Very observant of her I suppose as weāve only met face-to-face once ever. Helen