I would like to ask if anyone has experienced a worsening of their severe ME fatigue/exhaustion including muscle strength and pain after taking the anti CGRP injectables or oral meds for chronic migraine?
I’ve got the typical co-morbidities of severe ME, PoTS, SFN, MCAS, fibromyalgia, chronic migraines including vestibular migraines and widespread fibromyalgia pain.
I started on Ajovy on 27th April which has triggered a severe worsening of my fatigue and total body exhaustion where my body feels like cement and my limbs are weak and hard to move and coordinate and severely burn. My head feels extremely spaced out and dissociated from my body.
Although I have these symptoms usually this is a significant worsening and feels slightly different. I’m finding hard to grip a pencil and write yet could do this quite easily a few weeks ago pre-Ajovy.
The injection also triggered off my MCAS with intense chest flushing and these horrible doom like episodes a few minutes after eating.
I’ve read that David Systrom has anecdotally said some of his patients have had their PoTS/SFN improve after treatment with the CGRP meds for their chronic migraines and that CGRP may be contributing to the inappropriate vasodilation, shunting and neuropathic pain.
Yet I’ve read another hypothesis paper by Klaus Worth et al saying we may have a CGRP deficiency in ME/SFN which may contribute to the muscle weakness and ATP generation. So blocking it would presumably make this worse…
I’m only day 19 after taking it and my migraines are still chronic with daily head and facial/ear/neck pain. But to have a worsening of ME symptoms too is not what I was expecting.
Anyone been in a similar situation with these medications?
I’ve got the typical co-morbidities of severe ME, PoTS, SFN, MCAS, fibromyalgia, chronic migraines including vestibular migraines and widespread fibromyalgia pain.
I started on Ajovy on 27th April which has triggered a severe worsening of my fatigue and total body exhaustion where my body feels like cement and my limbs are weak and hard to move and coordinate and severely burn. My head feels extremely spaced out and dissociated from my body.
Although I have these symptoms usually this is a significant worsening and feels slightly different. I’m finding hard to grip a pencil and write yet could do this quite easily a few weeks ago pre-Ajovy.
The injection also triggered off my MCAS with intense chest flushing and these horrible doom like episodes a few minutes after eating.
I’ve read that David Systrom has anecdotally said some of his patients have had their PoTS/SFN improve after treatment with the CGRP meds for their chronic migraines and that CGRP may be contributing to the inappropriate vasodilation, shunting and neuropathic pain.
Yet I’ve read another hypothesis paper by Klaus Worth et al saying we may have a CGRP deficiency in ME/SFN which may contribute to the muscle weakness and ATP generation. So blocking it would presumably make this worse…
I’m only day 19 after taking it and my migraines are still chronic with daily head and facial/ear/neck pain. But to have a worsening of ME symptoms too is not what I was expecting.
Anyone been in a similar situation with these medications?