POTS and Migraines

[Guest KiminOrlando]

So, I have been chasing migraine relief for some time. Personally, I believe my migraines stem from my Mast Cell issues (lots of anecdotal reasons), but no medical doctors believe that, so we are trying everything else. I used Ubrelvy and it worked somewhat (maybe, I was also on good Mast Cell meds), but I was taking lots of it, so we moved to prevention with Nurtec. That did not work at all. Now my neurologist has switched to giving me a monthly shot. The new med is called Ajovy. Has anyone tried this? I got the shot a week ago. 5 days later I am fainting faster than normal. Something has changed significantly. The only change is this AJOVY drug. I looked it up and it doesn't have fainting as a side effect, but POTSIEs are different. I looked up how it works and found an article that it is a vasodilator. I'm thinking this new migraine med is the cause. Any experience with this?

 

https://pubmed.ncbi.nlm.nih.gov/24960305/

[MikeO]

By know means am i a expert with Migraines but did look up a few of the drugs mentioned. And yes a med that vasodilates is not good for some of us and will cause symptoms.

 

[GasconAlex]

No surprise that you are fainting more with a vasodilation drug as this will tend to lower blood pressure and if this is the cause of your fainting then you will faint. If it improves the migraines then you could add abdominal binders (presume you already use compression stockings up to the thighs?), but personally it would have to be a massive improvement in the headache department in order to risk the dangers of fainting.

[cg1059]

Hi! I have migraines and dysautonomia. If you think the ubrelvy worked, ask your neurologist about Qulipta! It’s the same mechanism of action as ubrelvy and ajovy ( CGRP antagonists) but it’s a daily pill instead of a shot. I tolerated it much better, migraine wise, and that might work for you! 

[Roxy]

I have POTS, NCS, MCAS, Asthma, Migraines and possible EDS and SFN but amazing as it seems Botox works for my migraines and cluster headaches, we are all different so I tried it even though my Dr was not sure because of all the other allergies (mold, pollen, other environmental ones…) would not hurt to talk to your doctors and see what they think between you both as they know your in depth medical history.  Good luck

[Looking_for_light]

On 11/11/2022 at 4:52 PM, KiminOrlando said:

I believe my migraines stem from my Mast Cell issues (lots of anecdotal reasons)

There's lots of evidence for this. Would say to seek a professional who agrees with this and try to go down the MC stabilization route to see if it helps.