I know that headaches are a common problem with MM.Paige has complained of headaches recently but they never seem to affect her for more than a few minutes. She will tell me that her head hurts and then that's it.Tonight she complained with her head hurting for about 30 minutes.Are they signs of a future stroke or is it from the lack of bloodflow?I am really concerned because she has never complained with one for that long.Usually,they come and go.Also,are there any over the counter pain medicine that I should not give her for them?Thank you all.

Jennifer

Hello Jennifer,

I am a 20 year old with moyamoya and I suffer from constant headacs that can happen for hours and hours on end. My surgeons told me the head aches are from the lack of blood flow to the brain thus lack of oxygen. of course with everyone there always could be something diffrent and i mean i would just keep an eye and maybe contact her nuerologist or who ever is keeping an eye on her and ask them. As for over the counter meds I have never been told that i couldnt take anything but I found out though that regular pains meds from over the counter only work once in a while. Your best bet is to ask who ever is watching her case and ask them that question as that could be a matter of prefrence.

I go through phases where I have heaps of headaches and then some where not. At times they are so sharp and brief that by the time I reach for the paracetamol, it’s gone, then it’ll hurt again and be gone, over and over, which gets annoying!
Other times they’ll last for hrs, dull aches… etc..
My doctor’s say that that don’t know what causes them, this is because – as [extremelife] said – it can be different for everyone. Lack of bloodflow does probably have something to do with it  but I also know that stress, powerful smells and dehydration can trigger mine…. So definitely good to watch those factors.

As for pain-relief, the only thing I’m allowed to have is paracetamol…

i have alot  of migraines.  i had my bypasses in 2001 and 2002.  my doctor told me that my migraines were totally separate from my moyamoya but, i dont think so.  i take three kinds of medicine everyday to control them.  I still get them often and i also have dull headaches everyday.

amy stewart

Hi, It's me again..Laura

And i too suffered from headaches before my surgery. They felt like 4 jackhammers poundin on my skull..But since i've had my surgery the EDAS done back in jan..I have not had one of those kind of headaches...Thank God. And they would last for days and days..I didn't know what it was like not too have a headache until Jan 24th when i was brought out of my induced coma..Even now I don't get those type of headaches,,So i know what you are going through first hand cause i used too get headaches, they were worse than a migraine was ever thought of being