Migraine

Hi, my name is Alison and I have suffered with migraines for 35 years (I am 47)starting at puberty. I have mine well under control with Imitrex and I am so grateful it works for me. I am joining the forums here for support with my 11 year old son who has been experiencing migraines since he was 2 1/2 years old. He's had an extremely difficult time this year with his headaches and has missed a lot of school. He also takes Imitrex and it works well for him most of the time but his headaches are typically 3 or 4 a week and I am concerned that he takes too many. We had him on Periactin but it didn't work for him and he was really tired during the day. Last Tuesday he started on 15 mg of Topomax and will increase to 30 starting tomorrow.

His neurologist said it usually takes up to 14 days before he will notice any change but he has been headache free now for 4 consecutive days! Coincidence maybe? Has anyone else seen good results this quickly? Also, we were told that boys who start to experience migraines around puberty usually have them for a lifetime but boys like my son who has been having them since he was liitle will usually get rid of them after puberty. Has anyone else heard that? School has been pretty understanding so far other than the fact that when he gets one at school the nurse has suggested that I let him stay there and be treated by medication I can leave with them at school. I would rather pick him up and bring him home where he can be comfortable. I am probably the most sympathetic Mom in the world because I have migraines myself and I understand his suffering. Any advice from someone with a child his age?

Hi Allison

Welcome to the forum. You definitely came to the right place for information and support.

My son has had migraines since age 5. He started having some major problems with them at age 14. We will be starting 15mg Topamax in 2 weeks. He is taking a small break since we just weaned him off neurontin.

Has your son been experiencing any side effects from the topamax? How high are you supposed to go with the dose? That's great if you are noticing results already. We did have quick results when we started neurontin, but it didn't work out in the end.

I have never heard of the theory that when the kids have the migraines from a young age that they will go away, But I like the idea a LOT.

If the school can keep him comfortable there it's probably best that he stay. If it's not a good environment to recover from the migraine I would bring him home. We don't really have that option at our school because the nurse is hardly ever there and it's very bright and noisy in the nurse's office.

There are a lot of other mom's around so I'm sure they will offer their advice as well.

Jean Ann

Thanks for responding so quickly. We aren't sure how much we will increase the Topomax yet, the doctor wants me to call her in a couple of weeks and let her know how he is doing. He does say he feels a little light-headed on Topomax but he would rather feel that way than have a migraine. It's terrible to watch your child have to learn to manage his pain isn't it? Our school has the same set-up that you described, although they offered to turn down the lights, give him an ice-pack,etc. He usually gets sent to the office around 2 in the afternoon and school lets out at 3:30 so it just makes better sense to bring him home.

I know what you are going through. My daughter is 17 and has been dealing with these severely for the past 1 1/2 years. She started getting them around 5th grade though.

She took Topomax and was up to 100 mg a day but my once "A" student started failing after a short period on the Topomax. Apparently memory loss is one of the side effects but my neurologist said it doesn't happen often. I would just suggest being watchful. He could easily do well with it. I have heard good things over and over about Topomax so stay with it.

My prayers are with you.

lovemykids411
Melanie

Take a look at this article:

Adolescent Migraine

We have information on topamax that may be helpful.

Topamax

The first time I took Topamax (when I was 20), I had almost complete relief of my chronic daily headache/frequent migraines within a week, so it is possible the Topamax may be working that quickly for your son. I only had to go up to a 50 mg dose, which I used successfully for 2.5 years with few side effects. Good luck to you both, and do let us know how it goes, ok?

I will keep you posted. Today he has a slight headache but hasn't asked for an Imitrex yet so I will keep my fingers crossed. We increase to 30 mg today so we'll see what happens.

I don't think I've ever heard anything about boys outgrowing their migraines if they start early in life, as opposed to if they start later. But I'll certainly root and hope that such a pattern holds true for your son, and that they do go away.

The good results could very well be coincidence. A week is pretty early for any kind of med to kick in. Hopefully, though, this really is a real and for true sign that Topamax is going to be a good ally to have in his corner. I know I noticed postive results pretty much right away when I started magnesium.

As for the school thing, it really is best if he's there as much as he possibly can be. It might be good to try keeping some meds at school, so that he can try that first for milder attacks, even later in the day. Certainly, if a given migraine is disabling, then going home is probably the best option. But if he were to be able to get his meds right away, sometimes the migraine might abort quickly and then he'd be okay until the end of the day.

I just wanted to give an update since we started the Topomax. We are at 30 mgs daily and Alex has only had two headaches in the 11 days he has been taking it. That's pretty hopeful news for us since his headaches were 3 or 4 a week. He is experiencing a little memory loss and appetite loss as well. Can anyone else share some info. about those two side effects?

I've had both memory loss and decreased appetite the three times I've taken Topamax. The decreased appetite eventually goes away for me. The memory loss for me mostly means my short-term memory is shot, and that side effect sticks around. I cope by writing *everything* down. I will say that that side effect was never so severe that I had to get off the med. The first time I took Topa, it is what allowed me to graduate college on time with an honors architecture degree (dean's list every semester) - not to brag but I want you to see that it didn't impact my academic performance.

Remember, though, that side effects are different for everyone. Sometimes they go away, sometimes they don't. The only way to tell is to see how your son does. If they get to be too much, you can always talk to your doc about having him come off the Topa. I will caution you though that Topa should *never* be stopped suddenly as sudden withdrawal has been shown to cause seizures, even in patients who have never had them. I don't want to scare you, but I want to make sure you have all the information available about this medication.

Here is some of the info we have on Topa:

Topamax

Topamax FDA Approved for Migraine Prevention

Good Evening,
Yes, writing everything down was essential, and writing it down correctly the first time. I learned very quickly not to let people rush me taking notes.

The topa makes me less hungry, but I am certainly happy to eat once I start. I personally had hoped for a dramatic weight lose!! But most young boys don't need that. If he is experiencing decreased hunger/appetite, you might try offering him small nutrious snacks periodically. They just seem to burn calories sitting there, or at least my son did at that age.

How wonderful you are seeing an improvement in the migraines. You both must be so happy.

Take care

Cindy

Hi Alison

I'm so glad you have had an improvement with the migraines already. That is great news.

My son will be starting topamax soon. The dr. did warn me about lack of appetite, hand tremors and difficulty finding the right word. Hopefully, the side effects that he is feeling will get better the longer he takes the meds.

Maybe you can get your son to drink those nutritious drinks like ensure or slim fast. I sometimes try to get my son to drink those if he isn't hungry so at least he is getting some nutrition.

Jean Ann

Alison, I'm glad your son is seeing some improvement.

I'm so glad for the improvement.

Another option, besides taking notes at the doctor, is to take a tape recorder and record the whole session.