Hey Michelle

I'm sorry to hear that your son is suffering. When I was a youngster I suffered from terrible headaches too, so I sympathise with him. I don't have moyamoya (that I know of), there could be many underlying reasons for his pain. I don't know how extensive your search for the cause of the headaches has been to this point, but pain behind an eye is very indicative of migrains.

Luca's diagnosis was made after a stroke and she was too young to tell us if she had headaches prior to that.

I'm no doctor, but's it's my understanding that an angiogram is the definitive test for moyamoya.

Best of luck for the tests, and if it is moyamoya, you are not alone.

Mark (Luca's Dad)

Michelle,

Angiogram is the only way to 100% know for sure if your son has Moyamoya.  MRI's are a place to start but they can not diagnose this disease entirly. 
There are many medications to treat the headaches, but if it is MM then you have to be careful with these medications.  I was put on Imitrex years ago for migraines and had a stroke while taking it.  I was also on inderal for 20 years to treat the migraine headaches.  My blood pressure was so low that I was dizzy all the time.  The doctor would lower my dose for awhile and then increase it again.  This was before I knew that I had MM. 
Low blood pressure is dangerous for MM patients, so be careful what medicine they give him.  This is why it is best to see a MM specialist.  I saw as many as 10 nuerologists over the years and still none of them were able to diagnose MM.  It took a neurpsurgeon that had seen cases of MM before to diagnos my condition.  Believe it or not I was blessed with a brain tumor.  I went to see the neursurgeon because of the tumor, he was the one that diagnosed the MM.  If it were not for the tumor I probably would still not know that I had MM and would have most likely had a sever stroke.  That is why I call my tumor a blessing.  It saved my life. 
Ask the doctor to do an angiogram so that you will know for sure.  Then if it is MM you need to find an MM specialist in your area.  In the meantime be careful what medications he takes. 
Good luck, hang in there, it does get better.  I found things easier to deal with once I knew for sure what I was dealing with. 

Tracie

Tracie

Becky wrote on Jul 22^nd, 2009 at 12:26pm:


Luca was also given Topamax to manage her pain

Mark (Luca's Dad)

My daughter has eye pain, face pain and ear pain and crys it hurts so bad some times. She also has sever headaches and has had bypass on both sides 2002 and 2009. Could or is this the moyamoya we don't know. Also numbness in arm and hand. Any thoughts?

George

I had headaches for a long time.  Doctors always claimed it as migraines.  The medicine would never work.  It wasn't till I had paralysis on my left side and then I would get severe headaches on the left side and behind my eye would hurt and go blurry.  That they found they thought MMD on my mri they didn't totally say it was that till my angiogram.  I see a Dr. Mejer on Sept. 18.  I am still having severe headaches and have paralysis when I do to much.
I hope this helps.  This disease affects everyone different. That is why it is so hard to diagnose at first.
keep you in my prayers,
Dana

Fun Facts:
Doctoer still do trepanning to relieve headachs. They don't do it unless it is absolutly nessacary. The evil spirts were the causes of headachs, depression, skitzophreniah (sp?), drunkeness, and other mind issues. The trepanning was done to allow the evil spirts to escape, but then the person would be exposed to being taken over more often but the spirts wouldn't stay because of the exposure of the hole.
Becky