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.