hemicrania continua and migraine

[LauriePri]

My 15 yr old daughter was diagnosed with migraines at age 3.  She had the classic headache with photophobia and vomitting.  Her migraines were fairly frequent roughly 6-8/month.  Over the last 6 yrs the frequency, duration, and pain have intensified.  Since July of 2007, she has had approximately 30 pain free days.  We have tried inderal, depakote, topamax, elavil, and many other preventatives.  We have also tried imitrex(tablets, nasal spray, and injections), maxalt, axert, frova, and pain meds like percocet.  

I recently took her to a new neurologist for a fresh start.  He believes she also suffers from hemicrania continua and has added indocin to her migraine cocktail of topamax and elavil.  He said that indocin has almost a 100% effective rate for hemicrania.  She has been on indocin now for three weeks and we havent seen a response yet.

Are there any other treatments for hemicrania continua?  

She is making statements now about just having the doctor do brain surgery to "take out the part of my brain that hurts" and about "being sick of having headaches."  I think she is exhibiting some signs of depression even with the elavil.  I am at my wits end and don't know where else to turn for help.  She is missing a lot of school, but not nearly as much as she could be.  She will generally go to school with a headache and seldom comes home early.  But if she begins vomitting during the headache, she usually misses at least 2 days of school.  It seems that her more severe headaches are accompanied by vomitting and they last 2-3 days.

We had one week where we went to the DEM on Thursday where she was given IV benedryl and compazine and 2 lortab for home.  The following Sunday we were back at the DEM where she was given IV benedryl and compazine and haldol and sent home.  Monday morning she went to school.  The nurse called me at 9 am and said Allegra was having difficulty focusing.  I made an eye appt for 2 pm.  At noon the nurse called and said that Allegra was hysterical screaming that she could not see. By the time I got to the school, she was better.  We went to the eye doctor and she diagnosed an occular migraine.  I took her home and went to work.  At 7 pm my son phoned and said he was taking Allegra to the DEM she was having difficulty breathing and her head was tilted backwards and her eyes were rolled up in her head.  The DEM treated her for an adverse reaction to the Haldol and released her.

Suggestions?

[LauriePri]

Is there anything else that anyone has suggested to you that has helped even a little?  Or have the doctors on this site ever responded to your posts with suggestions?

[Shmily1969]

I am 23 and a female.  Make sure the dosage of The Indocin is right because lots of doctors don't treat it right.  You start on 25 mg Indocin, 3 times a day for a week and if the migraines haven't gone away then you increase it to 50 mg 3 times a day and if the migraines aren't mostly gone after a week then that usually means the problem isn't Hemicrania Continua.  I actually tried this and it didn't help me at all and it actually caused the migraines to rebound and they were worse and that's probably why your kid is vomiting and stuff, so I would go off it if that's the case.  I'm still looking for the cause of my migraines too.  It's hell but keep trying.  It gets very depressing too.

[aj09]

im also suffering from severe migraines but i havent been to the doctor to get a check up. before i get migraines i usually see twinkling lights and my half of my vision is ruined. After that i start getting throbbing pains in one side of my head and sometimes on top of my eye. i become sensitive to light and noise. usually i take 2 advils and go to sleep. i wake up and it's gone. Ive been having migraines for 6 years now. It happens more often now, maybe about 2 or more times a week. I tried to research it and it seems like i have retinal migraines. i have really bad eye sight and the migraine could be from straining the eyes. i'm also in highschool and it really does affect my school attendance. ive missed so much school now because of migraines and it puts so much stress on me. sometimes i even get it during school and i have no choice but to leave and skip because my parents are at work.my parents now are making me quit my job because i always miss work because of migraines. it's really hard for someone our age to suffer from migraines.. i find myself getting really angry at myself and other people.. it's not surprising that your daughter is feeling a little depressed.. it gets in the way with what she's doing. next month im getting an mri done and see a doctor.

[LauriePri]

I finally got the approval for the MRI and unfortunately, it was scheduled for today, and I had to work.  Have to try to reschedule it now that I have my new schedule.  

As for Allegra's migraines:  The doc took her off of the indocin and started phenergan and vicodin as needed, which is pretty much every day.  For those people who may have been thinking that these headaches are her way of getting out of school, she woke up at 8 am on Friday, the first day of their spring break, and said "Mom, I knew before I even opened my eyes that I had a migraine.  What else can we do?"  

Will keep you updated.  Thanks for your concern.  I was really hoping for more responses as at this time we are grasping at straws and looking for suggestions.  But it is nice to know that you are there should I need to vent.

[jacee1967]

Laurie maybe you should take her in to the ER. I am so sorry to hear about her vomiting so much. They need to get on top of the insurance company for that MRI. I hate the insurance companies.. if it were thier child they'd be all over it ya know?

you will have to let me know when ya do finally get the approval

[LauriePri]

Thanks for the sympathy.  

The latest in the migraine saga is that the indocin is still not working and her vomiting has increased.  She now vomits with every migraine instead of just the really severe ones.  I contacted the doctor yesterday morning to check the status of her MRI (waiting for prior auth from insurance company before scheduling) and told them of the increased vomiting, they were to call me back.  Still haven't heard from them.  Will try again tomorrow.

I am seriously ready to pack her up the next time she has a migraine and take her to Danville or Hershey Emergency Room.

[jacee1967]

LauriePri, I was diagnosed with hemicrania continua and migraine, I was put on a drug that either treats it or doesnt. Two differant Docs  recommended it. Its indomethesin. + this med if it is not the right treatment is not fun, it has a side effect of yup, you guessed  it Headaches.   I tried it and had the worse migraine ever. but we needed to do it to rule it out. but I understand if it works its the best. unfortunatly it was not my "cure". I do not know if that would even be an option for her..

MY heasrt so goes out to you both, As an adult I have a hard time with these damn things , I can not imagine what a child is living through.  Age 3 WOW.. not even fair. and now as a teenager. as if being a teen ager wasnt tough enough.Stay stong and I hope you find what eve it is to help her to be a teeneager and think about hanging with friends,  not headaches.!!!

good luck to you!!