hemiplegic migraines and teenage son

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bsamom
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Date Joined Jan 2010
Total Posts : 4
   Posted 1/15/2010 2:36 PM (GMT -6)   
shakehead 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.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 1/18/2010 4:29 AM (GMT -6)   
Hi,

Welcome to Healingwell. So sorry to hear about what your son is going through. Have you seen a Neurologist who is a Headache Specialist? If not I would urge you to do so! How long do your son's attacks last? How often does he have these attacks?

Usually the Emergency Rooms do not know how to treat Headache properly or effectively, especially in difficult to treat cases like your sons. Has he tried Imitrex injections for his headaches? If not do talk to your Doc about these or Oxygen at a high flow of 15 litres per minute with a non-rebreather mask for around 20 mins to half an hour! Best of all will be to see a Neurologist who is a Headache Specialist to help your son.

Please let me know how he gets on?

take care

Ann
Co-Moderator of the Migraine/Headache Forum


bsamom
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/18/2010 2:55 PM (GMT -6)   
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.

Froodles21
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Date Joined Jan 2010
Total Posts : 1
   Posted 1/22/2010 9:31 PM (GMT -6)   
Hello,

I'm 15 years old and have been suffering from chronic daily migraines for about a year now. I'm a freshman at a public high school and have unfortunately missed almost 50 days due to my condition. My school has been absolutely terrible and no help whatsoever. The neurologists and pediatric docters here at home have said that there is no medical reason for the migraines and they cannot help me. So now my school has said I must come to school everyday and the nurse will evaluate if I am "sick enough" to go home, meaning I have a fever over 105 degrees or am vomiting profusely. If I don't have those symptoms I have to stay all day and if I don't I will be considered truant. Then if I get 5 days truant, I will be kicked out of high school. Now, I am a straight A student, so this very much upsets me and my family, as you can imagine, so we are going somewhere else to get help. We're going to Chicago. The Chicago Diamond Headache Clinic to be exact. They will help, I know it.

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 1/24/2010 11:55 AM (GMT -6)   
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

bsamom
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/25/2010 7:22 PM (GMT -6)   
Hi Sweden. My son has been on Depakote for about 5 weeks now, and he had his first HM last week. He is increasing the dose of medicine gradually over several weeks so hopefully when he is on the full strength, he will not have HM or at least not as often. He was on Verapamil but with not much success. He also was put on one of the triptans, Maxalt, which made his HM worse....I guess that's why the neurologists do not like to prescribe them. THe neuro is a specialist in migraines as well and has had other HM patients, just not as young as my son. I will ask about the Lamictal. I guess everyone reacts differently to the medicines so it is hard to know that what may work on one patient will not work on another. I hope the Verapamil works for you!!!! BSAmom

bsamom
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/25/2010 7:29 PM (GMT -6)   
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

art chick
New Member


Date Joined Sep 2009
Total Posts : 11
   Posted 1/25/2010 10:16 PM (GMT -6)   
hi!! i am so happy to tell you i am in san diego too and have a great referral to the neurology center. they are worth the drive! they have neurologists there who are also migraine specialists and that is what you need. they have a site in encinitas and oceanside. see dr. schim or dr. blumenfeld. they have about 12 patients with hm last i heard and i am one of them and they do prescribe triptans like treximet, etc. due to a small study that was conducted on this group that showed they were safe. i am on topamax and an atypical anti-psychotic but if you are uncomfortable with that, there are calcium channel blockers that are also used for this type of migraine.

atypical anti-psychotics are used off label and they treated me with this at another clinic before my migraine diagnosis when i could not walk for 2 and 1/2 months and was also shaking and had a migraine every single day and it stopped all of those symptoms. so there is a lot of hope!

RUSSB
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 1/25/2010 11:04 PM (GMT -6)   
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!

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 1/26/2010 4:21 AM (GMT -6)   
HI bsamom!!
OK depakote for 5 weeks and increasing it, Yes it can show up to be a good preventive for him, i am keeping my fingers crossed here, i saw he had tried Maxalt and that didn´t help, well Imigran don´t help me at all too, but there are many different kind of Triptans i use Zomig nasal 5mg, and for me it helps a great deal, here
in Sweden we can get Zomig without an description so it can´t be a heavy drug then, beacuse most medicines here are on descriptions.
Nice that art chick is from San Diego too and that you can get help from her.

Good Luck!! Hugs from Sweden
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