My 10 year old son is set to have 2nd MRI, he has had sudden onset severe hedaches of and on for a couple of years now. The headaches come on suddenly and are severe enough to cause him to cry. They come and go, sometimes no symtoms for several weeks at a time. The headaches are unilateral, left side above his eye. now his Neurologist thinks it may be Moya Moya, just trying to find out how others haave been diagnosed.

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
I have alway had mild headakes, but the week before my stroke I was having daily massive migraines. I went to a regular doctor and she gave me a medication that more the likely caused my stroke, since i didn't know I have MM yet. The medication was Relpax and it constricted my small narrow vessels untill one of the weakest spots broke giving me a watershead stroke. During the diagnosis of why I had the stroke I was given an MRI, MRA, CAT scans but it wasn't untill the Angiogram was MM even mentioned. The neurologest said I couldn't have MM since I was not Asian, so I asked for a second opinion. Also I was still haveing massive migraines, and the new medication Inderal was not working. I live in MN so I was sent to the Mayo clinic and the Neurologest there just looked at my Angio and confermed i do have MM. The neurologest at the Mayo was a MM specialest and i never went back to the old neurologest ever agian.

My migrains are just above my left eye too and usualy unilateraly, but this is where i had my stroke. I would have your son get an angiogram by a MM specialest. Then ask if he could take Inderal, or Topamax to help with his migraines. Everyone's bodies are different, Inderal did not work for me but it could work for your son.

I hope this helps,
Becky

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

I was first diagnosed with probable MS, then my stroke was discovered, and then 6 doctors later...MMD.  My headaches are related to my blood pressure.  
Michele

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

Then ask if he could take Inderal, or Topamax to help with his migraines.

Luca was also given Topamax to manage her pain

Mark (Luca's Dad)

Michelle,
my daughter started having very mild headaches last year(at that time I did not know these were her first signs of MM) she also had couple TIA's...past few weeks her headaches became severe to the point that she is vomiting...they are unilateral...best of luck and I hope you find answers to all your questions...
Aneta ( Nicole's mom)

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 was diagnosed with MM after my first haemorrhage in 1980 and an angiogram confirmed the diagnosis then.  when I had the second haemorrhage in 2002 an MRI was used to confirm the original diagnosis which it did.  The first warning I have of any problem is severe vomiting followed by a severe headache.  I have no other symptoms.  If they are looking for MM on an MRI then they find it.

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 :o

I used to get migraines often, which led me to a neurologist. My wife at the time wanted an MRI done to check for tumor, etc, but he was convinced I was a classic migraineur. She kept at him and finally he ordered an MRI and MRA to shut her up, and that's when it was discovered I have Moya Moya. My headaches stopped after my first surgery. I believe that pressure was relieved when a piece of my skull was temporarily removed during the surgery. Back a hundred years ago the doctors would have used trepanning to remove the evil spirits, which would have cured my headaches.

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

Really? Wow. So it's possible that antique trepanning kit my old neurologist had in a display case at his office wasn't so antique after all.