I consider myself lucky that, so far, the worst consequence of my MM so far has been these daily, incessant headaches that just won't go away.

(A quick update on me - i've been TIA and 'weakness' free since April, am waiting for my SPECT and another similar test (I'm guessing the Xenon CT) to be scheduled, and then I'm supposed to chat with the surgeon.)

For those of you who've dealt with these headaches, and (hopefully) found a solution - what was it that helped? I think I'm slowly going crazy here.  Prior to the MM diagnosis, my neuros have had me on nortriptilyne, topamax, and even CoQ10. Now, they current strategy seems to involve increasing my Verapamil dosage over time until I notice some relief. So far - nothing helps.

For "quick fix" pain relief, I'm also stuck. The entire triptan class of drugs is apparently out because of it's effects on the arteries.  In the same line of thinking, theres been some confusion about whether or not I should be taking anti-inflammatories, but so far nothing I've tried really did much anyway, so I'd rather not take the risk. Tylenol on it's own doesn't work either. T3s (tylenol with codiene) sometimes takes a bit of the edge off, but the rebound headaches aren't worth it. I'm out of ideas, my neuros appear to be out of ideas, and I'm slowly losing it...

Any and all suggestions greatly appreciated!

Daphne used to have almost constant headaches.  They really improved after the surgery, but she'd still get a really bad migrain once or twice a week.  She was put on Neurontin, taken 3 times a day, and it really helped her.  She now gets migrains maybe once a month, sometimes less.

Daphne is only 3, but I have read of adults who are on the same medicine.

cgg,
  Headaches were my only pre surgery symptom.  They were very bad, not daily, but when they hit they hit hard.  My doctor first gave me Zomig for the migraines, but once the MRA results returned, and the occlusion was detected (MM diagnosed in Mar), she told me specifically NOT to take it again.  Only thing that helped was to rest in a dark room and use an ice pack on my head.  Actually the ice helped a lot!

After my sta-mca bypass surgery in May, I have not had a single bad headache!  The occasional minor too tire/no food type of headache but nothing serious.

good luck, I hope you find some relief.
Carol Mae

My son with moyamoya gets headaches a lot - especially in the summer.  He began taking Topamax about a month ago and it really helps him.  I know you said you tried Topamax, but you didn't say why you stopped taking it.  I hope this helps, and I hope you find some relief.

Summer, it the heat is killing my head, I'm make sure to drink a lot of water, I always have a bottle of PROPOXY( it generic for darvocet) it work like a cham.

My son Tyler is only 10 months old but he was started on Neurotin due to his neurologist believing he was having cronic headaches.   After 2 days he was like a new baby.   Much more lively.
Mandy

My neuro has me on nortriptilyne WITH 400mg of B2 daily (200 in the am, 200 in the pm) and it has been a MIRACLE for me!!  I've had no side effects from either. I went from daily headaches to one a month at the most.  I don't know if I just hit on the right combo for me or if it works for others but it was the first thing he tried and it's worked for two years now.
Good luck...I understand your desperation!!!
Chelsie

Well since I'm just now reading this post.  This is good for us, I am going to make Holly an appointment to get some blood work done and find out if she is anemic.  She also has been suffering from headaches quite often. 

Regarding the "ice" suggestion.  I spoke with Holly's neurosurgeon a few months ago when she was hit in the head.  They informed us that we should only use ice for a couple of minutes at the most, because it constricts the blood vessels.  We tried tylenol and advil and she got no relief, we found that motrin was a very bad idea (woke up in the middle of the night, couldn't sleep every time she took it).  The only thing that works for her is aleeve(sp).  It works for her minor and moderate headaches, not for the severe ones, we haven't figured that one out yet.

Off to the doctor we go!

P.S.  Holly says hello everyone, as she is sitting here next to me telling me what to type.

Not what we like to hear, but Kyle's neurosurgeon told us that "Headaches seem to go hand-in-hand with MM!"  (great!) ;
Kyle occassionally wakes up w/ a migraine (this happened a couple of times before stroke/dx and every month or so since surgeries).  Since he is on aspirin therapy, his Dr has said not to give him ibuprofen, etc. and Tylenol doesn't do anything for him either.  Like Holly, he just stays in bed with the blinds/curtains drawn and sleeps it off.  He take 4 mg Cyproheptadine (generic for Periactin) a day (at night) that seems to help lessen the frequency of the headaches, but he still gets them.  I think staying hydrated is probably helpful, too. 
I think I'll ask his Dr. about checking his B and iron levels.
sue