migraines...missed school

[grace]

There's never an end of drama in my house, even when I'm not filling you in as often as I used to. So the twins had some virus similar to fifth's disease with an itchy rash that gave them several petechial spots. lasts 2 weeks minimum. Noah keeps have asthma attacks and is home wheezing up a storm. I'm on antibiotics again and expecting to need surgery...appt next week.
But, the reason I'm writing is for Isaiah, with the fibromyalgia diagnosis. He is taking migraine preventers for 1-2 years now and we added a new one, increasing weekly (3 of 5 increases completed). This new med is supposed to help some with general pain and anxiety as well as the migraines. It has helped in those two areas a little and even his stomach issues are not quite as bad overall but his headaches are awful. Daily. often requiring extra meds. He is tired, feels weak, eyes hurt, AND headaches.

Should I blame the new med? request an MRI? any thoughts?

thanks.

[mumtosarahlou]

What's the new med? An MRI might be a good idea....

[Naominjw]

I figure if things get worse when a medication is added... it is probably that medication. From the slow dosing, my guess is it is Topamax? My daughter was put on that and we raised it very slowly in small amounts... started on just 12.5mg once per day and held it there for 2 weeks before adding the second dose, then another week before increasing to 25mg. That's really low and slow, but we really wanted to minimize risk of side-effects.

In her case, it did partially control the migraines. Now that she no longer has migraines, she has been coming off the Topamax. Lo and behold--it is excrutiatingly hard for her to come off of due to withdrawal symptoms. Coming off has been a lot slower than getting on it.

[grace]

it is amytriptyline (sp) that he is taking in addition to sandomigran. He's up to 30mg per night and I've done it slower than suggested due to possible issues along the way. If it didn't help so much with the muscle pain (which even 1000mg of naproxyn didn't fix), then I would have thrown it out. plus, i'm glad he's on something whose side effect is antidepressant as that is an area i'm looking into with him.

also, he's not at his worse for migraines, just worst for a long while. could be seasonal too which is why i don't want to jump at the meds just yet.

thanks for the thoughts.
appreciated.
lucinda

[DystoniaGal]

lucinda

I am on amytriptyline for my migraines along with propanolol, along with Botox every 3 months for my migraines. Elavil (amitrip) has helped the most. I have also done Topamax. Like you said the Elavil is an anti-depressent. I didnt see results until I was up to 50 mg. I only take it at night as it also helps with my sleeping, and as you know lack of sleep contributes greatly to migraines.

I have noticed with the incoming fronts my h/a are coming on more frequently.

Suzie

[Guitarmom]

I am so sorry that he is so miserable!! I have daily migraines and I cannot imagine this for a child! I am finding more relief with Topamax. I also have started a Low Glycemic diet that is helping more to reduce the migraines. (less intense diet than the one used to prevent seizures it is closer to the one used for diabetes)

I think having an MRI might be worth it if he has not had a recent one if it would give you peace of mind or if his migraines are changing. He is just having TOO Many.

Poor guy! I hope he can find relief SOON> It is just too much for a kid to go through and try to learn and just BE a kid!

GInny

[mpalmer118]

Hi there,

I don't have anything new to add, just wanted to say hi and that its good to *see* you. :)

Mary

[grace]

We are to go up to 50mg amytriptyline but week one was reflux, then with the increase came vision issues that came and went and dizziness and an occasional comment of confusion which may have been 'brain fog' from fibro or a migraine...???...so I waited two weeks til that leveled out before increasing. His symptoms come day 5 after the increase so i'm not sure how he is with this increase yet. headaches have been more since sept. It could also be all the naproxen has left his system and that helped a lot so maybe that's a part of it too.???

anyway, topamax is the alternative choice but i'm hoping this one works. it is good for his sleep, muscle tightness and mood

today's issue is that he has gym class. the teacher has him do the warmups with everyone, then they have to run. but isaiah can't run it seems but if he complains, he is sent to the office to 'rest'. and then he can't do the fun part of gym. first year teacher probably thinks he is being nice recognizing his 'illness' but is making him hate gym because he never gets to the good part. He's a kid after all. I don't get why they just don't let him not run. he can stop and go run like in basketball but not continual jog as expected. makes me so mad but there are so many battles to fight, not sure this one is key.

well, i'll let neuro know and go from there I guess.
thanks ladies

[Guitarmom]

Lucinda, as a former gym teacher and one who has battled chronic migraines and the fatigue that does go along I would ask for them to have him WALK the laps when he cannot job! He needs to be allowed the fun part. He is feeling PUNISHED by his illness as it is! Just because he cannot jog, he should not be kept away from the other parts, I totally agree. If he had a heart condition, would they make him push past what his body is telling him to do? Fibro is such a tough one because it is so hard to PROVE even in the medical community. YOU did not invent it, however, the doctors say he has this! I would ask the teachers to modify his program to fit him, but to remember he is STILL a child of that age! SO frustrated for both of you! IN a basketball game he would run some, walk some and probably NOT push as hard as a steady forced jog. it is all start and stop.

Topamax is also approved for Fibro treatment!

Best wishes!
Ginny

[grace]

thanks, my dh actually agreed he needs a modified program and asked me to write to the school teacher and if he didn't agree, to have him removed from the class! highly atypical response from husband. good. so letter is written. thanks for your words. helped. including word modify...i was racking my brain for that word.

lucinda

[RathyKay]

Lucinda, good to see you again. It does sound like the change in meds is having undesirable side effects. I have a realworld friend whose daughter is on Elavil for migraines. She's more emotional (quicker to tears at the end of the day), and her mom is hoping to get her off of it. She's not on any other meds... well, besides Tylenol and Motrin. They dropped dairy, and things improved some, and now they're going gluten-free. (Her daughter has enamel defects, which is a sign of gluten intolerance and the real reason they're going GF. She's hoping GF will also help the migraines. Time will tell.)

Slowing up the med increase sounds like a smart move. Hopefully, he'll adjust to it.

[grace]

Well, to add to his misery, today he is sick. probably just a cold but still...

and to you all, I'm here, remembering you all, just been quiet.

hope it's a good day.

Lucinda

[wheeliebird]

Lucinda, I hope he soon feels better!!! I'm just Praying I don't get sick, I was around my aides little boy and he has a head cold!!! :eek: