Hi!  My name is Patti and my son has MoyaMoya.  He had surgery about 3 years ago, and he takes aspirin daily.  My son gets headaches just about every day -- sometimes more than once a day.  He can't function like a normal 12-year-old because he gets headaches after being outside in the heat for about 10 minutes.  He can't even stay in the pool for more than 20 minutes without getting a headache.  

The bottom line is that when I discussed this with his neurologist, we decided to put him on medication to try to prevent some of his headaches.  I just want him to be able to play like a normal kid.  The doctor prescribed Neurontin.

I googled Neurontin and found a site that talked about some scarey side effects.  I'm wondering if anyone on this site takes Neurontin, and I'd like to know what (if any) side effects are experienced.  I'm also interested in knowing whether or not the Neurontin actually helps with the headaches.  

Thank you for listening!

Hi, Patti.  My daughter, Daphne (2 1/2 years old) has been on Neurontin for about 5 months, and we have not noticed any side affects.  Daphne used to suffer migrains several times a week, and would scream unconsolably, flush, get watery eyes etc.  

By the time Neurontin was prescribed, the headaches had diminished some in frequency, so it could be cooincidental, but since Daphne has been on Neurontin, she has had only a handful of these episodes.  Her demeanor is very much improved.

Daphne had been on many different seizure medicines before, and we noticed side affects with every one of them, but not with Neurontin.  Several neurologists have told us that Neurontin is a very safe medicine, with very few side affects, in general.  

The only other question I had for you, though, is whether the headaches have gotten worse recently (besides just being attributable to heat).  If they are something new, or if there have been changes, you may want to look into studies of his moyamoya/surgery, to make sure nothing is going on.

Otherwise, if you know things are stable with the MM, and want to treat the headaches, I think Neurontin is a safe place to start.

Jenny

Jenny, thank you very much for responding.  I feel a lot better now!  Yes, Michael's headaches have become much more frequent -- I think it is because of the heat - but I don't know for sure.

His surgery was not totally successful.  He had the indirect bypass on his left side in Boston, but it is not supplying much blood at all to his brain.  Most of the blood is coming from his right side - but it is slow.  I'm hoping that his right artery is not closing now.  He has an appointment for an MRI on Wednesday.  I hope all goes well.

I'm happy to hear that your baby is doing better now.  May God be with you both!

pattil647,
         Mandy has been taking Neurontin for 2 years or better but she takes it for the pain her brain tells her she's feeling in her arm that was affected by her strokes even when its just being touched. She went off of it shortly and we realized how much it was helping her and she went back on it. I wonder if pain from headaches and that pain are the same pain after all pain is pain, it works well for her, however Mandy has never had headaches or if she did after her strokes she wasn't in good enough shape to tell us but since she has recovered and its been over 3 yrs she hasn't had any, but has been on the Neurotin the better part of that time. I think this drug is one of the milder seizure drugs because Mandy had her one and only seizure while taking Neurontin and was given an additional seizure drug for that. I hope it works, and I hope this helps....by the way she has had no side effects ever from this drug. Take Care.
                   Nancy

I am taking Neurontin for headaches and it works great! I did not have bad side effects when I started. It made me a little tired, but that was it...

I used to take Keppra for headaches and it worked well, also.

Good Luck! I hope it works as well for your son as it did for me :)

- Sara

Sara and Nancy, thank you both very much for responding!  I feel so much better when I hear your success stories!  I appreciate your help.

Hi all

It is good to hear that many appear to have experienced relief re headache with Neurontin. Doses for this drug appear to vary greatly and this probably affects side-effects? Can someone share his/her experience regarding a helpful dosage of Neurontin for an 18-year old with lots of Moya-moya-related headache?

Hi my son was not able to tolerate Neurontin.  It made him so sleepy that he could not function.  He is currently taking Topamax and it works great.  I'm at work now so I can't check the dosage - I just know that he takes one tablet in the morning and one at night.  Let me know if you want me to check the number of mg in each tablet.  I hope your son feels better soon!

Shoggoth,

I recommend rxlist.com.  If you do a search on Neurontin (gabapentin), they have information on dosage, as well as side affects, counterindications etc.

Is neurontin a headache med or a siezure med? The dr,s want to put my molly on topamax. After reading about neurontin i am wondering if it is a better choice? Molly just turned 13 and also has headaches every day an was taking tylenol. we just went to a neuroligist any info on the comparison of the 2 drugs would be helpful.
Thanks,
Amiee molly's mom

Neurontin was originally approved as a seizure medicine, as adjunct therapy for partial seizures.  However, according to Daphne's neuro, it was pretty weak as a seizure medicine and has since been used more as a medication for pain/ headaches.

From what I understand, Neurontin has less potential for sedating/ appetite reducing and other side effects than Topamax.  Of course, each medication effects every person differently.  For more info, go to rxlist.com... you can search meds and get lots of information (maybe too much...)

Jenny