hemiplegic migraines and teenage son

 Just wondering if any of you that experience HM have excruciating head pain that can't be helped with meds. I have a 17 yr old son that has suffered with these since 2001. He has missed a lot of school and activities because of these dam headaches. Along with the head pain, paralysis and vision loss there hasn't been a good med that remotely helps with the headpain. There are times when he is just screaming in his room cuz of the pain. We have done the trip to the ER many times. Now are trying at home injections of Ketoralac when headache starts and Depakote as a prevenative med. I truly do not know what will happen to him if these can't be controlled. How can he go to school away from home (not an option now) or even try to hold down a job when he gets these? Would love to have some feedback . thanks.

Thanks for the reply. We are currently seeing 2 neurologists - one at Children's Hospital and another neurologist who does specialize in headaches. Can't take Imitrex due to type of migraine, but have not tried the oxygen and will ask at next appointment. Usually headaches are for 1 or 2days - currently averaging 1 per month, but has had a cluster in the past with 6 in a couple of weeks. He has had the standard cocktail IV of ketoralac, benedryl and another one (can't remember), plus morphine, magnesium and depakote. What frustrates me the most is how helpless he is once these hit - the paralysis comes on so fast that he barely has time to make it from the classroom to the nurses office if he gets this at school. Then, for me to try and get him in and out of the car and up the stairs once home is really hard. Anyway, I'll keep posting if some good comes out of his addition of depakote on a daily basis. Thanks again.

Hi bsamom!!
I have HM and have the same problems with a terrible headache many times a week, my paralysis, speech problems etc etc. have changed dramatically since
i started with a preventive called Lamictal it´s a Epilepsy med, but it only helps with the paralysisi etc. from having attacks many times a week from 8h-the longest 2 weeks, i now only have atttacks 2-6 times a month, but there have been sometimes a whole month between the attacks too, but for me thats rare.

Okey BUT i am´currently trying a med called Verpamil that should bee good for both the paralysis AND the migraine pain. There is a lot of us with HM that´s using it and have had great respond from it.
I no that Triptans are not tried out for our group of migraine, and if it is doing more harm than good we and the doctors don´t no, but we are many who have the triptans too....i have it too, and yes they helps, some Neuros don´t want to describe it but many do.

So my question to you is...how long have your son used his preventive that he have now? And if he have had them for long maybe the neuros should try another one?
The migraine specialist that your son has, do you no if he has other patientes with HM?
Many Neuros and M Specialists have never seen a patient with HM so....yes it is very rare!!


Plenty of hugs and strenght too you!! / Sweden

to Froodles 21....I can feel your frustration with the school system. I don't know about the school system where u are, but here in San DIego, I have to provide a doctors note detailing his headaches so he can get these as excused absences. It seems totally unreasonable for the school to act that way. On a happier note, I know a lady whose daughter-in-law went to the Chicago clinic and had great success in treating her migraines...also HM. So I'll keep my fingers crossed and wish success for you as well. Keep up the studies.....can you switch to homeschool perhaps??

BSAmom

Hi there I understand your frustration but you are going to have to be patient and give these different medications  there own time to see what is right for your son. I was about 13 when I was going through a simular situation, now I am 37. It sounds like you are trying everything under the sun. This most likely will not vanish from his life,  it is a matter of finding out what is going to be the best way to manage this in a way he can live normally. Doctor's are good but you need to do your own research to narrow his triggers and treat his life like a process of elimination for the time being. I have the sporatic hemiplegic migraines. For myself i have narrowed down my triggers and have symthoms prior to an attack in which I take a medication called Maxalt, I then take a 15 minutes to a half hour quiet break eyes mostly closed then I regain myself for the rest of the day. Before Maxalt I was disfunctional the rest of the day. I also found aggressive sports send my bloodvessels into a frenzy and almost immidiately after stopage the aura feeling starts and sends me into the cycle. I find a low impact treadmill excersise does allot for me. I wish you only the best I feel your pain, I really do. I agree with the other writer the emergency room is not the greatest place for your son, as a matter of fact it make make it worse with the lights noises and the anxiety factor. I don't know the severity of your son's condition but I can tell you I have learned to live with mine and have reached unconsciousness and been relieved by spinal tap at one point at its worst. So there is hope!