Carly just has her MRI/MRA exam yesterday and there has been no growth since last year... PHEW!!! Does anybody else notice that symptoms (pain + swelling) increase when the temperature outside does?
Yes, absolutely. Seizures, head pain...everything is worse with hot and humid weather. I have noticed that people with concussions and MS also suffer. I think this weather is bad for neurological issues in general.
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Yes this is also common for people with Ehlers Danlos. I notice when the weather is hot and we have a high barometer I get more migraines etc.
I try to drink more water etc
Just the opposite for me; but a very different disease process. Winter is awful for my VM; going outside makes my aberrant blood vessels get small (constrict), they feel brittle and inelastic. Then I go inside toward the heat. The diameter of the aberrant blood vessels expands. It is painful.No elacticity.
Love warm weather. My wedding anniversary is purposely the first day of summer. Funny but transfer from heat to a/c does not bother me. I feel a little manic this week; "Is it possible that life can actually be too good?" was my final remark to hubby last nite. In December, my mood is low but the bigger factor is that my VM area hurts. And when I hurt, my thoughts go back to difficult times in my life. Real PTSD affects the mind "and the body".(
This deduction may be foolish, but I believe it, and visualizing the process helps. The linings of my aberrant veins are made of epithelial(skin) cells. You know how skin gets hot and sweaty in summer; it is refreshing to walk into A/C. But blood vessels in winter are like frozen icicles. Fragile and breakable. They would crack like glass.
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The cold hurts, the heat is dangerous and rain brings on partials, pain and depression
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For a lot of years until shunt installed after a bleed.
Im being treated in Mexico city wich temperature is lower than my hometown weather, I live near to the beach and the hot temperatures reaches about 104 F° or more, the hot gives me migraines but also when Im in Mexico city and starts to rain… I think that the humidity is a risk factor for my migraines.
I’m in the U.K. and I really notice the cold weather affects pain levels on the site of the craniotomy scar. I didnt really notice it in my first year after the operation but stayed inside most of that winter. This year it has been a combination of cold and damp with freezing fog a lot. I try to wear hats when out on site for work but there are times when I forget. I also have just cut my hair shorter to the style I had when the AVM first came to light- this was to help me feel well and to look a bit smarter at work- but I really feel the cold now! Double edged sword as it can cause weird headaches
Pre op I couldn’t stand hot weather and always felt that the heat was dangerous for me, long before I knew about the AVM- summer 1988 I had my first terrible migraine, I remember it clearly because I could hear the children in our street enjoying the still warm summer evening but I was in too much pain to go out and join my brother and friends.