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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Headaches!

kat0465

Senior Member
Messages
230
Location
Texas
Major migrains here! :( so bad they say thats why i have lesions on my Brain....... ( yea right) but yes headaches are common with us and miserable!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I dont get what i call headaches anymore, but i do get awful eye pain -always over the left eye as well. It sometimes sort of slides down into my face or up into my head.
Years ago i used to have crippling migraines and now i think i get silnt ones as i het floaters and feel off but get no headache.
 
Messages
72
Ah, to be so lucky as to not have headaches!

I would actually rather have a simple headache than the severe migraines that I get.

justy said:
I dont get what i call headaches anymore, but i do get awful eye pain -always over the left eye as well. It sometimes sort of slides down into my face or up into my head.
Years ago i used to have crippling migraines and now i think i get silnt ones as i het floaters and feel off but get no headache.

That interesting that you mention pain over your eyes. Sometimes, and this often leads to my headaches, I feel pain all around my eyes but not actually have my eyes hurt/ache. Almost like I'm getting a sinus headache but that isn't it.
 
Messages
71
Location
Chelmsford, England
I have suffered with headaches since getting ill in 1996. Several migraines too included in there. I think the headaches in my case are due to orthostatic hypotension and lack of blood flow to the brain, as they also lead onto coat hanger pain across the back and shoulders - especially in the morning.
 

meadowlark

Senior Member
Messages
241
Location
Toronto, Canada
Almost daily migraines from onset in 1983 til 2001 ... strange ones which always switched off when a fever began. But I didn't have fevers all that often. I really believed this would never change, but because I've been much more feverish this decade, the migraines come and go now ... an hour here, four hours there, twenty minutes on, twenty minutes off. They are always accompanied by fibromyalgia in my legs.
 
Messages
26
I'm joining in on the headache club. I think it is a combo deal....First, I think a lot of it has to do with elevated cerebral spinal fluid. Many patients with ME/CFS have elevated pressures when they have a lumbar puncture. This pressure increases many symptoms such as light sensitivity, eye pain, headaches, fatigue etc...If it gets out of hand, it can lead to eye problems such as inflammed optic nerves in the eye and damage. On top of that, we then we have the decreased blood flow.

One of my doctors told me that entoroviruses can, and do, replicate in tissues; including the gut and brain.

Unfortunately it is one of the horrible symptoms of this crummy disease :(