My son is still waiting for surgery.  He has had a terrible headache for weeks.  Last week I called his primary doctor to ask for something stronger than we could get over the counter.  He prescribed some vicodin but said he wouldn't order more even though he finally got some relief and was able to sleep for the first time in a long time.  I called the neurosurgeon today to ask for help.  He said that he will not order anything and that we should buy some Excedrin Migraine.  I went and bought some but when I looked at the active ingredients I wouldn't let him take it.  It has 65mg of caffeine in!  I have been under the impression that we should be avoiding caffeine because it constricts blood vessels.

Would you still give him the medicine?  Am I mistaken about the caffeine?  This doctor so far has not given me any reason to be confident in him.

primary doctors often don't know anything about moyamoya.  I would avoid the excedren migrain!  Caffine is very bad for moyamoya sufferers, espcially if he is waiting for sugary! You don't want to do anything to increase his risk of stroke.  Have they tried topomax?

They haven't tried much of anything.  We have been told to give the otc meds more of a chance.  Finally I called his pediatrician for something more.  He ordered the vicodin.  Now he won't order more because he is not involved in the moyamoya treatment and doesn't know much about moyamoya.  It is the neurosurgeon who told me to give him the Excedrin Migraine.  He doesn't know anything much about moyamoya either--the problem is that he doesn't realize that.

Hey Lynn

Have to agree with Katie, caffeine is a vascular constrictor and you just don't want to take a chance. As suggested, Topomax is quite widely used by moyamoyaers, but with varying degrees of success.

Good luck
Mark (Luca's Dad)

I agree that caffeine is a vascular constrictor but the medication I am taking to control my migrains given to me by my nurologest who is knolagable in Moyamoya contains a minior amout of caffeine in it. The caffeine is a catylist like in Excedrin migraine. The caffeine is quickly absorbed into the blood streem and it helps carry the other ingredients along with it speeding up the medication intake. Now I am not saying crack open a can of Mountian Dew but I don't think the minior amount of caffeine in Excedrin Migraine would hurt. I would always ask you Moyamoya specialized nurologest about your son's risk of caffiene lased medications or soda/coffee/tea.

I pesonaly was on Topamax for about a year, with great sucess on the daily minor headachs but I was also perscribed another as needed migrane supressent for the big bad migraines. I am still taking the medication for the big bad migrains in an as needed but I stoped waking up with a headach so my nurologest had me stop taking the Topamax. My Big bad Migraine medication is basicly Excedrin lased with Vicaden or a barbituate (they switch between the two so I don't get adicted to the vicaden).

Note: Everyone is different, and what works for me may not work for your son. I was a caffeine drinker before my stroke and diagnosis of Moyamoya so that maybe why I can handel the caffeine. Always consult with you Moyamoya doctor for your son's individual case.

I hope this helped.
Stay strong,
Becky

I know that I am going to hear from all the others but vicodin is addictive and that is why they will not refill.

The doctor ended up calling in vicodin for him.  He insisted that caffeine is not a problem for moyamoya patients.  I said that I will not be giving him the medicine.  He had his nurse call me back and tell me that there had been a "miscommunication" and he was ordering him vicodin because he knows that caffeine can be dangerous for moyamoya patients.

I know that vicodin is a narcotic and he can become addicted to it.  I also know that his headache is so bad he can't function during the day and can't sleep at night.  The vicodin takes the edge off enough to be able to make it.  He hasn't had surgery yet and my research on the effects of caffeine on cerebral blood flow makes me unable to give it to him.  There is 65mg of caffeine in each caplet....the studies I found from the NIH noted the differences in up to 40mg.  It is amazing.

I don't desire my son to become hooked in narcotics.  He needs something though and the danger of stroke is very high right now.  He is spending most of his days feeling numb and weak.  I can't give him caffeine.  If he becomes addicted to vicodin we will deal with that after we restore blood flow to his brain.

Am I even making sense?  I haven't been sleeping much and it's hard to organize my thoughts so I apologize if the above is just a jumble.

Hi Lynn

I would probably do the same as you. The lesser of two evils.

Sometimes, as parents, we have to make these decisions on behalf of our children and we can only act using the information we have at hand at that moment. There really is no right or wrong answer here.

I was a headache sufferer and, speaking from my experience, I would take anything to get rid of the pain, addictive or not. As you rightly pointed out, the addiction can be dealt with at a later stage, but often stroke effects aren't so easy to overcome.

Good luck and stay strong
Mark (Luca's Dad)

Lyn,
Since you discussed the Caffiene issue with your Moyamoya nurologest then I totaly agree with Mark. I would also see if Topamax may be an option to take insted of the Vicaden.  See if the duality of a daily Topamax and an as needed Vicaden may help aleviate the migraines.

As far as your sleep; Please get some. Your on the right path. Your Son's surgery will go fine since it sounds like your in good hands. You have us to talk to when your worried or scared. My Mom and husband would read the posts and found comfort in it beacuse they knew they were not alone. Stay focused on the path ahead. Please feel free to ask any questions or just vent your frustration; I know it has helped me.

Stay Strong,
Virtual Hug,
Becky

The doctors in Texas gave Holly vicodin also but her neurologist at Stanford said no to the vicodin and put her back on Topomax and so far she is doing better.  Also has not had any caffene (sp) for almost a month.

Besides just the caffeine in pop, I keep Shelbi away from chocolate also.  They Dr. had given me a list of headache inducing foods to avoid, I don't have it anymore we pretty much figured out what did and didn't trigger her headaches.  But some that I remember were peanut butter, processed meats,some cheeses, but anyway you may be able to ask your NL/NS and they should be able to give you the list.

wow we have been dealling with this since june and not once did any dr tell me about caffine. i am happy i sit every night and read ur post it helps alot that may explain why we have so many trips to the er and they wont give bryanna anything for the headaches that works they gave her phenergan and that is for the nausia (sp) i was told to give her ibprophan  :o    

Holly tried the phenogren too, however it caused her headaches to be worse at times so they change it to Zofran which works great.