New Migraine Drugs Provide Hope for ME/CFS and FM Patients

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Some studies suggest migraine - a condition that includes severe headaches, sensitivity to stimuli and often produces severe fatigue - may be rampant in chronic fatigue syndrome (ME/CFS) and FM. In fact, some doctors use migraine drugs to reduce other symptoms in ME/CFS/FM.

The high prevalence, symptoms similarity and blood flow problems probably found in both diseases suggest people with ME/CFS and FM might want to keep an eye on what's going with migraine.

Recently migraine sufferers have received some very good news. A new class of drugs going through clinical trials that are getting excellent results suggest that relief could be around the corner for migraine sufferers and who knows, perhaps some ME/CFS and FM patients as well.


Migraines are often missed by patients and doctors. Check out migraine self-tests in Health Rising's Treatment Resource section

 

Ughhh

Active Member
I've tried both ajovy and aimovig. Ajovy I felt really good on first month, unfortunately second month shot I got an outrageous rash on my face and around my eyes so they switched me to aimovig which never seemed to work quite as well. Aimovig did seem to reduce the number of days per month I spent with head pain cycles related to the weather changes. I've heard they are doing some clinical trials using the CGRP blockers (ajovy, aimovig) for fibromyalgia which is interesting.
 

Not dead yet!

Well-Known Member
I've had what is called "true" migraines for over 30 years now. It started painlessly, and only in retrospect, do I realize it was the beginning. I would have sudden needs to lie down IMMEDIATELY. This was very disturbing, but rare. As I got older it turned into... gee, why does everything have a strong contrast shimmer? Like a photo you've used too much contrast on? Everything has a glow. The edges of my vision would have waves like heat. Within an hour or two I'd feel the spider of pain from the occipetal nerve across the back of my skull around my ear. Eventually, after a few years, it settled into the right side and radiated to the arm and leg. Then I'd get a different aura (about 10 years later), a stabbing pain in the right kidney which made me limp and spread to the whole right side. 10 more years and my right side is now paralyzed when I have a migraine. There are many types of migraine, mine turned into hemiplagic. I can't speak during the deepest part for about 2-6 hours. I can't walk either.

There is some debate about whether I have ME/CFS at all, or is my fatigue sufficiently explained by Migraine, Arthritis and Celiac. This is an unknown. The Pridgen protocol helps me. So I'd say, those conditions don't completely cover the situation.

It takes three full time meds to keep migraines from happening to me daily. That started around age 30. Before that it was less frequent. I have two different rescue meds. Still I suffer at least three per year. It takes 3-5 days to recover from one.

Migraines get worse as you age. If you think you have migraines, see a neurologist that specializes in headaches. Some, like mine, are more like epilepsy. Others are more like neurotransmitter imbalances. Nobody on the internet can properly diagnose you for it.

Interestingly, a now abandoned treatment for women with migraines who are young, obese and have menstrual issues also was called pseudotumor treatment. For some reason the Cerebro Spinal Fluid would build up in the heads of some women and cause a concussion like effect. In the 1940s they'd put a shunt to release CSF into the abdomen of such women. I'm not sure why it was abandoned. Probably was too risky or increased lifetime risk of meningitis.

But the insight that CSF pressure was building up was not brought forward. Not to my knowledge. It's probably why "blood pressure" meds work for migraines. Incidentally the American Heart Assoc. tested many bp meds and showed that it's not only beta blockers but many other meds that work, particularly angiotensin-renin types, which makes perfect sense if it's a buildup of fluid in some women. Though it seemed to have a high efficacy for everyone.

Maybe young women's instinct to use diuretics isn't just to look sexy in small dresses.
 

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