Allodynia: Putting a name to the pain on my scalp & hair during a prolonged, acute Migraine

I am a 62 about to be 63 year old migraineur. My migraines started when I was about 19 years old, and have progressed in severity since I was 19. I now am starting to write down the phases of this disease in “chapters”. What I experienced when I was younger is very different from what I am experiencing now, and since my social life, ability to interact or go anywhere, even hold down a job or work at all is increasingly being affected by this disease, I am becoming much more of an advocate on my own behalf. I don’t believe even Neurologists with Migraine Specialties have enough information to successfully treat thir patients. Everyone is just too different!

I have had this scalp pain for at least the last 2 years, and probably more like 3 or 4. Since I now get approximately 3-5 migraines a week – ranging in length from 2 to 4 hours, only to return in 6 hours for another 3-4 hour spell, to 48 to 60 hours at s pain level from 7-9 with no let up. Fortunately the latter are not the norm, but there was a 2-3 year period in my life when they were the norm, and recover from the exhaustion created by all that pain.

At some point during all this, and I ALWAYS use ice when I have a bad or even so-so migraine, but am careful to wrap the cold pack in a towel and NOT put it directly over my eyes. When my scalp and hair began to be extremely painful and burn like the article describes, it feels like someone has put a hot curler on it and left it there, or an inexperienced hairdresser used too much peroxide with a dye mix and I will have no hair left in that area very soon. If I try to comb my hair, the pain will increase. Even very gentle pulling on the hair, or patting the scalp is excruciating. In fact, the pain is there whether I touch it or not. I usually put another cold pack on the area, and that helps somewhat. This can go on for a day or so after the migraine subsides, but not always. It then disappears completely. It happens with my more severe migraines, not the every day migraines that may go away in 3-4 hours. A migraine of higher intensity that does not get caught stop within 24 hours will have this as a side effect.

I think this is a post menopausal symptom. I do not remembering having this particular side effect prior to that. I do also have a skin condition where my skin will raise up in red welts if I have scratched a mosquito itch or bite of some kind. This I have always had, but I don’t remember what it is called.

When I was taking indocin as a preventative (for 10 years @ 300 mg/day), I took the drug Cytotec to keep me from getting acid reflux, ulcers, or any other side effect that might efect the stomach lining. The dose of the Indocin was about 2x the recommended dose at that time. There was a manufacturing problem for about 3-4 months after I had been on this for about 5 years and I could not get the Cytotec, so my doctor switched me to something else. When I was able to get the Cytotec again, the first time I took it, I had the same kind of reaction I now get on my scalp, although I did not connect the two then. The soles of my feet and my hands turned bright red and it felt like they were on fire. I had to take an antihistimine to make the pain stop, which it did eventually, but I distinctly remember the burning sensation.

I have never checked to see if my scalp gets red, but I will the next time this occurs.

Thanks for the information about this. I will be sure to pass it on to my Doctor.
 

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