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!

Hi Lynn

The story of your sons headaches bring back a lot of painful memories for me, although my suffering was not moyamoya related. I truly hope that they go away soon.

I'm not sure what surgery your son had, but keep in mind that with indirect bypass it can take a full 6 months for the new blood supply to actually start making a difference. With this in mind, I really hope it is just a matter of sticking it out for a little while longer.

Stay strong
Mark (Luca's Dad)

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

Is he drinking enough water and staying well hydrated?

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

Yes, he is very conscious of the need to drink a lot.  He typically drinks between three quarts and a gallon a day.  Is that enough?

We don't have a local neurologist at this time.  We only have one office with pediatric neurologists and they have proven to be impossible to work with so we are not in a great spot with that.  He hasn't been officially diagnosed with migraines.  I have brought him to the pediatrician about the headache but he is worried about doing something to harm him so isn't a lot of help either.  I have emailed Teresa at Stanford but she is on vacation so we will see what she has to say when she returns.

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 agree with the last poster, I think it's different for everyone. My surgeries were 6 years ago and I have only very recently (sometime this year) stopped getting daily headaches. I generally take paracetamol for the pain, sometimes it is good to take it as a preventative regularly. I used to take Verapamil, which is a blood vessel dilator and is good for migraines also.
It is also extremely important to stay hydrated and this is something my doctor stresses the most, although up to a gallon a day is a lot so should be enough.
I've also been told by other allied health professionals that the muscles they cut through to do the direct bypasses almost guarantee headaches for life due to the stress held in these muscles (particularly in the temporal region).. so for some of us it is something we may have to endure for life!....

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

It amazes me to hear of all the headaches continuing after surgery. My daughter is 2 years post surgery and still gets them daily . Wish the docs could focus on finding a way to bring you all some relief. As a mom, it kills me to see my daughter suffer every day. She was taking neurontin and has recently been switched to topomax.

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.

Hey Donna, that just sucks. Courts home again today. Sometimes i want to march into that hospital and make them DO something. Apparently throwing meds at these headaches IS NOT working. I have recently been told something will work, be patient. HA! Over two years and my kid still has a headache EVERY day. It can get very hard to stay positive. I am sorry Destin is struggling. I know exactly how you feel, helpless.

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

Reading all of these posts I have mixed emotions....sadness for all of you who suffer and yet relief to know that my husband is not the only one.  We were starting to feel crazy..or he was at least.  I was starting to wonder if he wasn't just over reacting (I am ashamed to admit).  My husband is 4 months post surgery and suffers daily.  He had headaches before surgery but since surgery they are debilitating :( The doctors have him on depakote which they say they prescribed more for a mood stabilizer than anything else.  He also takes lexapro for depression, klonopin for the moods/anxiety as well.  He takes morphine 3x a day and oxycodone as well.  I haven't seen anyone post that they take narcotics for headaches...it seems like everyone takes antiseizure medication for headaches instead. 
Hoping that my husband as well as all those on this sight find relief from their headaches.

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. 

My 16 yr old daughter had both of her surgeries almost 9 years ago and still continues to suffer from migrains.  It is so horrible knowing that there isn't anything that you can do to help and fix the issues at hand.  She has taken over the counter stuff and it helped some at first but now does nothing and she is to a point where she doesn't want to take anymore stuff as she doesn't want to "kill her liver off anymore than it already is".  God bless her she is so strong with everything!  We have found that she seems to get sick more often recently and any time she is stressed, not feeling well, upset, any major change in emotion causes headaches.  I know this isn't the most positive out look but this is what we've noticed and delt with. 
Jen's Mom

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 :'(

Destin also has a 504 plan and it has been a life saver for her. Hers allows her to hand work in late if she misses school.  It also allows her to take tests in a different setting if needed.  Little things like that make a huge difference.

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 have never needed it (knock on wood) but there is a prgram like that at my collage. Also if is pay a bit more they will record the lectures for me. It makes me happy to hear that it is not just in collage.

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.

About the challenge of drinking:  It IS hard to push enough drink, and to keep track of how many glasses have been drunk so far each day.  We bought Daniel a CamelBak (like here http://www.camelbak.com/Sports-Recreation/Packs.aspx).  He has it with him most of the day and it holds enough so it makes it easy to keep track of how he's doing each day.  They are sort of pricey but we looked at the less expensive brands in local stores and they are not made nearly as well.