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I’ve seen several neurologists and they’ve all said MAV


#1

I’ve seen neurologists at UCSF/UCSD/Scripps/elsewhere and they’ve all said MAV but if the aimovig doesn’t work and then if the botox doesn’t work after that, then I’m wondering if it’s worth seeing Adam (i have a cousin in nyc where I believe Adam is) or Dr Surenthiran (my aunt said she’d pay to fly me to England as she wants me to visit anyway)? Curious yalls thoughts!


Daniel's Success Story
#2

Hey you can see Dr. Hain in Chicago. Cheaper than England.


#3

Do you think it’s worth bothering given 7 other neurologists have all agreed it’s MAV? From his website, I’ve followed Dr. Hain’s approach of diet/lifestyle changes and main meds to try (he recommends trying a combination of meds before botox but my neurologist wants to try botox if aimovig doesn’t work). I emailed Dr. Hain’s email on his website to see if they recommend I come in though I assume they’d say try aimovig and maybe even botox first.


#4

Yeah try the aimovig. Try med combo. Botox is truly last resort. Hain is yet another doc and can only prescribe meds. What have you tried and failed so far ?

Edit: Hain can also help rule out other ear disorders.


#5

Hi

Thought to chip in for what it’s worth. IMHO you do seem in a terrible hurry and prepared to travel long distances for that elusive solution which I can understand but, after 15 yrs of MAV, I don’t think there is a quick fix. Is yr MAV really ruining yr life, may I ask. Do you really feel well enough to cope with all that travelling. I’ve been so ill with this many times I wouldn’t dream of getting in a car yet alone on a plane. The thought of an airport terminal would terrify me. I still hv trouble with a corner shop. I would certainly hv to say is such a journey really necessary? Wouldn’t it at least short term make you much worse? Surely there must be a way for you to secure a better quality of life without all that effort.

If you have already had 7 MAV diagnoses I’d say you are probably already on the right track. Like @GetBetter I’d be very interested to know what drugs you’ve tried that have already failed to help. You are so brave to even look at botox. The very thought fills me with horror. Once it’s in there, you can’t get it out.

I’m UK based. All I’ve ever had are 2 one off neurologist appointments who both diagnosed ‘probable’ MAV and a GP who is totally clueless about MAV. I doubt she even believes it exists. She dreads my calls and refers to me as ‘the lady that reads alot’. In my situation it’s just as well I do because that’s what helped me realise I needed a neurologist if I was ever going to progress. In this day of the internet we are lucky. Dr Hain’s website is the Gold Mine. I laugh at myself now. I read it then went looking for something else/better. Shows how ignorant I was at the beginning. This forum has plenty of MAV management stuff written by various eminent professionals, Dr S, and Dr SIlver to name but two. I would imagine The Man In The Moon or someone on planet Zog could have a good stab at self MAV management with all that literature provided you can get a willing participant to let you access the various drugs. Have you shown Dr Hain’s material to yr neurologist. Would that be a feasible option. Appreciate they often aren’t very approachable. Maybe it would be worth trying to change, otherwise your own doctor might just save you alot of travelling. I’ve a niece in Toronto and it would be great to have an excuse to see her so I know how yr aunt here feels about you. It just sometimes the grass on the other side always looks greener. All the best with yr decision making eitherway.


#6

@ni_sm,

I think @Onandon03 has some good points. If seven neurologists all say “MAV,” then I think that’s probably your diagnosis. Most of us have gotten different diagnoses from every doctor we’ve seen!

You mentioned UCSF and UCSD. Have you been to UCLA (Dr. Baloh, for example)? I know that I see a lot of research papers authored by the UCLA doctors.

Unfortunately, as we all know the treatment is basically trial and error. Even Dr. Hain’s flow chart says that. Try one drug, if that doesn’t work try another drug, and so on. Then try two drugs together, and if that doesn’t work, try another combination. It’s frustrating for the patient and I’m sure it’s also frustrating for the doctors.

You’re lucky to get to try the aimovig. I’m sure everyone here will be interested to hear how that goes.

For me personally (and I think @flutters will agree), finding one doctor who is willing to keep searching and keep trying new things may be more valuable in the long run than seeing more doctors. (Of course if you haven’t found one that is willing to keep trying, then definitely seek out another doc.)


#7

I do agree. Find one with an open mind and explore your treatment options together.


#8

Thanks all! What was meant by Botox stays in you forever? What’s the concern with this? That the side effects can always come up again? My acupuncturist also really wants me to avoid it and I think another natural dr I’ve seen. It seems Hain’s only concern is “Given the lack of certainty that migraine is homogeneous, and also the gigantic financial incentives” which for me the cost is cheap and given it helps his patients (I guess that’s after a combo of meds but for me I almost want to just try botox as I think I’ll know quicker if it helps compared to a preventative).

It seems Dr Hain recommends the CGRP or botox (according to his chart which puts botox first but puts them in the same box) after trying the combination of meds. I have never tried A combination of meds in terms of main migraine medications but I have been on lamictal (for bipolar II) since 2012 and I’ve tried many medications for migraine while still on that and then I also started DDVAP (urinating a lot at nite) and risperidone (ptsd nightmares) in 2015 and tried some migraine medications while on those and lamictal.

Dr hain said on his website he only recommends cgrp for extreme patients who can’t manage their headaches. My dizziness is at an 8.5-9.5/10 and I can manage it in the sense I’m living, but I don’t want to live like this if there’s treatment out there especially now that I have insurance and live in the US (I want to live somewhere cheaper and not work as I don’t like screens/traffic/work). It’s weird that he also recommends 140mg/month as opposed to the 70mg/month given in the free two month trial (maybe he doesn’t know about the trial). He also thinks the drugs benefits will wane, won’t be that good for dizziness and was concerned about long term use like white matter lesions (those didn’t sound good; though he also said the literature is silent on the relationship between all preventatives and the lesions though maybe that’s in terms of stopping them; I put that excerpt below too). He’s also curious how it works with botox.

I say why not try cgrp while there’s the free trial and why not start at the lower dose as the golden rule I’ve always heard is start low especially since I’m bad with side effects (seem to be getting better).

I’ve taken every major migraine preventative (effexor (venlafaxine), and proceeds on to try topamax, verapamil, propranolol and then amitriptyline or nortriptyline diltiazem on and on and on) and some I’ve been on a while and some likely most not as long due to the side effects being overwhelming. I guess if CGRP doesn’t work I can try it with another migraine Med or I imagine given the long term concerns try two other migraine meds (does anyone know how this is recommended? Like do you just start with both at the same time? All the combinations that he recommend starting with I think I’ve tried each of those drugs separately). I think my neurologist will prescribe anything I asked for but they seem to think Botox will help but it doesn’t seem like they’ve used it on dizzy patients though Dr. Hain says it helps his but he only recommends it after combination of medications from the main migraine preventatives (he also recommends trying a botox-preventative combo but I assume that’s after a normal combo). I’m unsure what to do if these CGRP injections don’t work (I guess combo of migraine preventatives three trials total and if all fail botox though I kind of want to just try botox) but HOPE they work.

From his site:
There are two dose sizes – 70 mg and 140 mg. We plan to prescribe the 140 mg dose (two injections/month) for most patients who ask to try it.

As summarized above, we have a new class of migraine drugs, that seem to be rather weak, like nearly every other prevention drug.

Dr. Cowan, Chief of the division of headache medicine at Stanford, recently wrote a commentary about CGRP antagonists. As Cowan pointed out (2018), these drugs will likely be “priced in the range of the currently available onabotulinumtoxin A” – In other words, rather high, and also require a diagnosis of chronic migraine, and also require trials of 3 other medications. Dr. Cowan suggested that these drugs will be a $4.5 billion product.

In the author’s view, these drugs are worth trying in severe patients, but not in most people whose headaches can be managed. We also expect that it will not work in everybody with “migraine”. This is because Migraine is not a homogeneous condition, as it is defined by symptoms rather than molecular biology or imaging. This means it is a “wastebasket condition” resembling many other conditions defined by symptoms – including most of psychiatry.

Because of its “wastebasket status”, meaning we are not treating a disease but rather a menagerie of disorders, we expect that these drugs will be less effective than reported in these pre-marketing trials. We also expect that patients will develop blocking antibodies to these proteins, and even if they work for a while, their efficacy will eventually wane. We are not sure whether or not these drugs will affect the propensity of migraine patients to develop white matter lesions – as CGRP is a vasodilator, blocking CGRP might lead to more white matter lesions.

Long term trials are in progress but take … a long time. Still, there is always risk in trying new things.

On Normal preventatives: We have been asked several times whether or not migraine prophylactic medications will prevent evolution of the white matter lesions that are common in migraine. As of 2018, the literature is silent on this question. There are two general ideas about the origin of the white matter lesions – 1. microemboli through a patent PFO or other type of shunt 2. Vasospasm due to some mysterious underlying neurochemical abnormality associated with migraine. If #1 is accurate, then one would think that persons with spots would be treatment resistant (as most medications we use have little to do with coagulation - -verapamil is the main exception). If #2 is accurate, one would think that persons with spots would be the same as anyone else regarding treatment, and in fact, should be treated more aggressively to prevent damage. The PFO theory has recently been deemphasized.


#9

Which is why medicine needs to get on with drilling down into those disorders and curing each one in turn!


#10

Agreed! I also created this document which uses a lot of what I learned from this forum to address different symptoms/conditions and you need to scroll down a bit for resources outside of the Bay Area, CA:


#11

Oh dear and there’s me. Seeking positivity and looking at a Success Story.

Fully appreciating that you are wanting @DDAM1994 to answer yr question and that he’s the only one who knows I just wanted to say wouldn’t it be great to discover that his 70mg dose was just either the maximum recommended by Dr S or the effective dose that controlled his symptoms, as per the Migraine Survival Guide elsewhere on mvertigo.org. From personal experience with Propranolol I can see how important reaching effective drug levels is. I know I wasted a year being on too low a dose for me. Levels required must vary individual to individual tremendously because I’ve read about people having success with propranolol at as low as 20 mg. i wasted a year at more than ten times that. I needed more. Then of course there are limitations as to how much one can safely take due to comorbid conditions, age etc so I suppose although it’s very interesting to know how much others take it may not really have much bearing on our own requirements. It does make one curious though, only hearing part of the story though, doesn’t it.


#12

I didn’t say Botox ‘stays in you forever’. As Botox treatment if successful is repeated as far as I am aware, presumably it does go/wear off at some point.

What I said was

How long is Botox active for within the body. Any idea what the half-life of Botox is, if indeed it has one. My point was one is introducing a substance into the body which wouldn’t normally be there. I suppose you could call it a ‘foreign body’. The body may reject foreign bodies and/or one may prove allergic to it. A box of pills you react to, you just stop taking. How would that work with Botox. As a person who is allergic to Calamine Lotion, I’d be concerned. You are going ahead with the procedure so I guess it doesn’t bother you.


#13

There is. No need to have worried. Ami, Nori, Propranolol - all old, tried and tested.


#14

I’m confused as to what this is in reference to? Did I miss a post?


#15

Maybe. 2 days ago.

It started with a quote then:

Not to worry. Just thought it might help, while you were waiting. Saveyou worrying a bit.


#16

Ahh. Thanks, but I wasn’t really worried…just wondering what his experience was considering he was feeling successful with his medication.

I’m not experiencing any relief yet with my upping my nortriptyline so I wondered if he got to 70mg because lower doses stopped working or because he didn’t find relief at lower dosages.


#17

I read and bookmarked a online Daily Mail article yrs ago and just re-read it. A lady of 69 took Nori for MAV and it controlled it in six weeks it said. No dosage was given. Shame Daniel didn’t mentioned how long he took to reach 70mg and/or how long he has been taking that level. That might be interesting for you to know. Literature I’ve read mentioned 6-8 weeks before you start to see results. Of course there must be alot of individual variation.


#18

Ah thanks for the clarification but I’m still a little confused: would botox than be any different than another foreign body like a preventative migraine prescription?

Also update everyone: took aimovig the CGRP Tuesday no side effects thus far and no aid but I take the shot once a month so we’ll see. It did have super small particles in it and last time they said I should return it and I told them maybe they just always have that and most people have worse Vision or just ignore it. I don’t want to deal with having to get a replacement again and have it look exactly like the first one again so I just took it. I guess If it doesn’t work and the next time I get one that has particles then I’ll call them again but if I recall these are supposed to work within a couple weeks


#19

Hi

IMHO, Yes. Well I feel so. Firstly, Botox is a ‘foreign body’ as you say yourself. A drug taken as a tablet used for migraine prevention is a ‘substance’. It goes through yr digestive tract, is utilised over a short period, generally a few hours and then is gone or at least is no longer active. Botox goes under the skin and presumably is active in the body over a much longer period. A month or longer? Injectable preventatives (assuming there are some to treat MAV?). Are perhaps to be considered like Botox to be more invasive. As I see it the advantage of preventatives solely in pill form is that, with luck, should one prove allergic to the drug one’s body can quite easily eject it by natural means which, as a person super sensitive to meds, I would find a reassuring advantage. Lots of people are lucky enough not to need to give such things a second thought.


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