I am hoping you all can help me help my son.  He had surgery in April on both sides.  Dr. Steinberg did the surgeries.  Before surgery he had had a constant severe headache.  We were hopeful that that would change after surgery but it hasn't.  Nothing we have found brings relief.  He has tried all of the over-the-counter pain relievers and also a couple different prescriptions.  The prescriptions worked at first and then quit.  We are not really interested in another, stronger prescription either because of how it affects his emotions.  Not to mention, we would like to find a way to resolve the headaches instead of masking them with drugs.  Before surgery was one thing but now that it is over I don't want to continue.

We have visited the pediatrician and he thought maybe if we could get some good sleep going then the headache would ease.  My son is now taking melatonin at bed and is also trying a steroid nose spray to shrink his giant tonsils and adenoids so maybe he won't snore anymore and wake himself up that way.  It's been two weeks and he is still unable to sleep more than three hours.

Do any of you here have any advice?  Is this just something that we have to wait out? 

Thanks so much for your help!

He had direct bypass and the ultrasounds showed good results.  It's so frustrating.

Hi Lynn,  My daughter who is 17 also has headaches all the time.  She has tried Topomax and is now on Zonegran.  Neither has seemed to help much.  We have a great migraine specialist here in Tampa and she finally suggested we try botox.  I has worked really well.  she will still get headaches but not as severe.  She is also getting acupuncture.  We are fortunate that our insurance is covering both.  How old is your son?  Is he seeing a doctor for the headaches?  Maybe he can try these.  The FDA has approved botox for migraine treatment.
Donna

It is funny....some MM'ers have headaches and some never complain of headaches!

I unfortunately, have had headaches as long as I can remember. I had both rt & left bypasses almost 5yrs ago and I still suffer headaches. They are milder than "pre-surgery", but certainly still a daily nuisance. I take Topamax and that seems to help keep them at a reasonable level, but adds to my dizzyness. (no perfect solution)

Hopefully, your son's will be somewhat better as time goes on and more profusion continues. Sadly, he may always have some level of headache in his life. We just have to adapt. Rest is my best friend....days that I have a disturbed or lack of sleep...my headaches are always worse!

I had my surgeries almost 8 years ago and I still get headaches as well.  They are not constant...but I do seem to be affected by the weather (I'm very sensitive to barometric pressure changes in the atmosphere).  Anyway - I would definitely seek the advise of Dr. Steinberg.  He is one of the best!

-Shari

Pam, I agree 100%.  Destin missed school again today with one.  It rained so I guess the barometric pressure did a number on her.  She's really having a rough year. She's never been a quitter but lately she just seems to be giving up.  I am at a loss for what to do for her.

Lynn,
I am sorry to hear your son is still having problems. I used topamax until my headaces stoped being daily headaces. Now I take a perscription of Ecerdin lased with vicaden. This has helped me. Also the more sleep the better. Time heals all wounds.
Stay strong,
Becky

I knew if I came to the message boards I wouldn't feel alone or so frustrated!    Our son had bypass on both sides in May.  He is 7 yrs old and now 7 mos post surgery.  The headaches are not extreme, but they can be debilitating.  He's missed a couple of days of school again this last week.  We do pretty good at keeping him hydrated, but when he gets an illness or mild bug, it really brings him down physically.  It's heartbreaking and stressful.

One thing I'd like to make sure that everyone with children knows about is that there are programs out there that if your child is missing too many days of school they can do up some paper work to make it not count if it is related to the disease.  Since my daughter does fight with cronic headaches we have asked about the 504 plan which has helped out soooo much.  We have a set of text books that she keeps at home and if she is missing school I email the teachers ask for the assignments and then she can do them at home.  She hates missing school as she is very social and loves her friends, but there are those times and it seems the last 2 years shes missed more school than shes actually attended

I never thought of a 504 for moyamoya.  I have a son with type 1 diabetes so I have a little knowledge of 504 plans, even though we homeschool.  Daniel's headache has been so bad the past few weeks that I don't think he could have made it through school even one day.

I never heard of the 504 plans.  I appreciate the heads up.  I will look into it, if our son starts missing a lot of school.  Keeping him hydrated seems to be the best thing for how he feels...our neurologist wants him to drink about 50 oz of liquid a day...that's a challenge.