Any further research on the Migraine/M.E connection?

[Guwop2]

Whilst reading Libby Watson's latest substack piece on her healthcare experience in the U.S, she mentions a new miracle drug for migraines called Vyepti. Googling 'Migraine connection to M.E/CFS' led me to this near ancient article by Courte Johnson from 2013 (which, I noticed, has same chipper, help-is-just-around-the-corner tone that characterise even his latest posts nearly 10 years on over at 'Healthrising' (what a name!).
Anyway, this post -
https://www.healthrising.org/blog/2013/08/09/is-chronic-fatigue-syndrome-a-form-of-migraine/
- had me wondering if anything became of this research, did anyone here try migraine drugs for their M.E,.or is this just another Mcguffin?

 

[BrightCandle]

I have tried some anti migraine drugs and they did work to remove the headache at the time. The problem was they were meant to be taken 1 or 2 pills for a day and then at most 7 times a month. Getting 7 days of headache free a month was a welcome relief, all be it spread out over a month rather than all at once, but it only solved the problem for 1/4 of the time and they aren't exactly consequences free. Nothing about my headache behaved like a migraine in my opinion since it was continuous and didn't respond to most of the attempts to stop it nor did it have an obvious coming on effect after the drugs wore off.

The NHS was meant to be giving me more advanced anti migraine medication in regards to some form of daily injection and something else they wanted to try which IIRC was a CTRG antagonist. Then the headache clinic went dark with Covid and isn't calling/emailing me back as I tried to get in there after the worst had passed last year. I think they have discharged me having not even seen me at this point, they definitely aren't of any use and haven't been since I was referred there.

Its less of an issue now as HAPD v3.2 helped my headaches a lot and following protocols to try and address CBIS have much reduced or eliminated most of the headaches.

 

[Woof!]

I went from 2-3 days of migraines a week, every week - and lots of time spent in bed with hot packs on my neck and cold packs on my head and eyes, trying not to vomit up any meds I was taking - to less than four migraines per month (and often less than that) when I identified and eliminated a few dozen environmental and dietary migraine triggers* from my life.

Big pharma will never tell you this because they don't make money when you don't buy their meds, but its always better to identify and treat an underlying problem than to simply treat its symptoms, and in this case the problem is an inability to tolerate certain triggers. Migraines are the symptom.

*including dust, dustmites, all grains except oatmeal, starches (including corn, tapioca & rice), smoke, fragrances, cucumbers, cauliflower, shrimp, cat litter...

Life is so much better without migraines.

 

[Guwop2]

Thanks both @Woof! and @BrightCandle for your response. I actually do not suffer from migraines myself (except as a reaction to earting berries). My question was more about whether there had been any further testing or experiments in treating M.E/CFS with migraine drugs - which the healthrising article suggested may be a novel approach because of some overlapping aetiology between the two things (between migraines and me/cfs). The article was published some time ago, but it looks to be a theory that never gained much traction since I can't find any more info on this approach.

 

[RYO]

It seems severe MECFS patients share same intolerance to light and sound as ME patients. Migraines are thought to related to levels of catecholamines in the brain. I am curious to see if any ME patient has tried new CGRP antagonists and found some improvement in PEM symptoms?

 

[ruben]

With my ME/CFS core symptoms of tiredness, gastro issues, bloating and nausea, these would be with me every day. However my migraines would only occur say every 7-10 days. The truth is I suppose we just don't have a clue what's going on.

 

[BrightCandle]

It seems severe MECFS patients share same intolerance to light and sound as ME patients. Migraines are thought to related to levels of catecholamines in the brain. I am curious to see if any ME patient has tried new CGRP antagonists and found some improvement in PEM symptoms?

I did get the CTRG antagonist last year for 6 months. It did not help my migraines but it also had no side effects (other than needing to be injected). My migraines are still mitigated by a subset of Joshua's protocol.