Discussion in 'Other Symptoms' started by Sly Saint, Feb 8, 2021.
Headaches are one symptom I have not really suffered with since onset. I probably have less headaches than the average person. I do have quite bad vision issues, but not of the type associated with headache/migraine.
I think I only started having occasional migraines (maybe 1 to 4 a year) after 15 or 20 years of ME. Usually there is an aura for about 15 to 30 minutes. A relatively-recent one lasted one and a half to 2 days, when I couldn't even write or speak properly, although I could think perfectly clearly. Can't remember offhand how long the aura lasted.
I suffered migraines with aura pre ME and though I would agree that headaches are a symptom of ME, I am not convinced my migraines are necessarily strongly linked to my ME.
In my personal situation I think hormone levels have a much stronger effect on frequency, severity and duration.
Hmmm. Can't say I suffer much from tension headaches anymore. All sorts of other headaches but not tension ones.
This reminds me of discussing migraines and headaches with a doctor and when I mentioned I get a very stiff, sore neck with migraine he got the bit between his teeth, assuming I had a classic tension headache that developed into ME. It took a while for me to get him to stop rabbiting on about tension headaches and point out the very stiff sore neck happens when the migraines has already started.
I rarely get headaches - only occasionally.
My daughter has a baseline headache which ramps up. There is always a dull headache sensation .
Pre ME she did have migraines, which seemed to be linked to hormones age 13- 15
It seems to be more a cervicogenic type and tmj issues may underlie part of the mechanism.
I’ve had migraines since childhood. They were never that frequent, and often associated with exposure to heat or bright light. Which means, I rarely go outside without a hat, and have never reacted well to hot environments.
Getting ME almost 9 years ago didn’t seem to increase my migraines, though I will say that the environmental sensitivities of ME feel very similar to the light/noise sensitivity of migraine.
I had one year of substantially increased frequency and severity of migraines, and that was the year I was taking Tenofovir (viread). As many folk know that improved my functioning, but it was a tough year, and it didn’t help all those who tried it. I was very relieved to stop taking it. My migraines have returned to their normal frequency again.
I do wonder though if the people who get migraines, have an increased probability of getting ME?
Grandson of a friend had dreadful/longlasting headaches/migraines from about 11-18 and had been diagnosed with ME. (Bath)
He then saw a cardiologist who diagnosed POTS and appropriate meds and headed off to Uni, where he was able to play sports again and study. Now in second year.
I got migraines without visual aura in the first year of the illness. Years later, and to this day, I occasionally get visual aura without migraine - although the visual aura is usually followed by an odd sense of being "wiped out" and I usually have to go lie down.
Yep, I started to get visual disturbance with out pain about 5+ years ago. My usual migraines became much worse and lasted longer around the same time. i was sent to a neurologist who was helpful about the migraines.
According to him, even after the migraine has passed it is normal for the brain to take a day or two to recover. The process or changes don't stop just because the pain has. He reckoned the visual disturbance without pain was still migraine "activity" in the brain and in the same way it would take some time to recover.
As a teen, I would wake from a migraine and be absolutely ravenously hungry. I had to be left to sleep it off & to wake up naturally. That changed as I got older and a migraine, with or without pain, can leave me feeling drained for a day or two and sometimes a bit spaced out.
Headaches used to be my main symptom, also my main tracking statistic and warning signal.
My ME headaches are unresponsive to any medication, all I can do is lie down, I used to have to lie down for 2 days to get rid of one, now if I'm lucky half a day to a day does the job. If I don't lie down the headache continues and gets worse until I do.
I didn't count the number of days I lost to headaches (or struggled through with a headache) in my first year of ME, but it was more than in my second year, which was 137. Since then it's been (per year) 87, 73, 46, 32, 23 (2020). So they are going down by about a third every year, either through better management or improved health, I suspect better management is the main factor.
It's a pity most of my ME symptoms are all in my head (headaches, cognitive issues etc), because it's a bit too close to the psych's playground.
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