Do people notice that after their surgery their bodies react differently? I'm 7 years post surgery but there are still things that I notice were not the same before surgery. My body sweats more than average or becomes very sensitive to sound or touch. I find it harder to sleep because of the stimuli that will wake or distract me.

Muscles and body feel more fatigued and other internal processes feel different. What do you think? I am being tested for some other things and hope to find answers as to why strange things keep happening in my body.

Hi, I can't really answer as it is my daughter who has Moyamoya and she is only 4 but she is definitely very sensitive to all the senses. Sound and touch in particular but also smell and light

My daughter is very sensitive to temperature. she overheats very easily and her hands and feet get very blue when it's just a little cool. she can also be sensitive to sound sometimes. especially right after her strokes she wouls startle very easily, this still happens sometimes.
Mary Grace

My daughter who is 5 well... turning 6 this week is sensitive.  She is sensitive to heat and cold.  Her hands will also turn blue when she gets to cold. she also has Alopecia and having no body hair or hair on her head also helps with being cold.  Also I spoke with her Neurosurgeon doctor last week about using Melatonin for her. She sleeps very restless and it was recommended to try Melatonin for her but to consult with her Neurosurgeon  doctor first.  The doctor told me that Moya-Moya patients do have a sensitivity to sleep, so it is common to be restless and have a difficult time sleeping.

This is the first time I've heard about the sleeping problems.  My son Scott has always had a difficult time sleeping, he's up all night and sleeps sporadically during the day, never linked this to Moya Moya and never realized it could possibly be a symptom.

Please let me know how the supplements affect the sleep. I started using a sleep app to track my sleep and I noticed that sometimes I get less than 50 minutes of quality sleep in the course of 6 to 7 hours. That can't be good. I'm also thinking I have some other condition or disease that is difficult to pinpoint because I'm not sure if the symptoms are moyamoya related or possibly the other for which I am undergoing testing.

Anyone with sleep problems, have you had a sleep study done? Kathleen also has Down syndrome and sleep apnea is something that many individuals with down syndrome have so hopefully over the summer she can have a sleep study done. It was reccomended by the Down syndrome clinic in Boston. She moves around a lot which menas waking up and moving, and sleeps in really crazy positions.
Mary Grace

Oh wow, it never even occurred to me that there could be a relation between mm and my slight hypersensitivity.
My elbows get blue when it's cold, also my hands get cold quite fast. When it is warm I sweat easily and I get agitated.
Since forever I have trouble sleeping and only since a couple o weeks I started to think there could be a relation between mm and my sleeping problems.

Also I suffer from Neurofibromatosis type 1, I am not sure if this has anything to do with it. But perhaps others know.
Now, I read somewhere about taking melatonin to help with the sleeping problem.
Can people who take meds for mm just use these?
That worried me and prevented me from taking them.
I do not want to cause more damage to my body.