Hemiplegic Migraines

[ColoradoMom!!]

Hi Friends! Since you all know everything about everything, I thought I might have some luck posting here.

I did a search on this type of migraine on this board, and didn't find anything - sure found a lot of people suffering though

I am hoping someone out there can relate and share some info.

My son was almost 12 when out of the blue he looked like he was having a stroke. Mouth drooped, loss of speech, loss of motor ability in his left arm. We flipped out and took him to Children's Hospital - they were awesome! Did every test known to mankind and at first thought it was a TIA (mini stroke) with no permanent damage. After a few months and a few follow up appt.'s, his symptoms seem to be consistent with Hemiplegic Migraines. (They don't respond to typical treatments like Topomax or Imitrex)

He has only had about 6 episodes in a year and a half, but they are pretty classic for Hemiplegic - i.e. vision problems, aura, tingling and loss of feeling on one side, and vomiting. Since the "cure" appears to be worse than living through these, we haven't sought addition medical help, but after today (he is upstairs in bed) I am reconsidering. (there is no possibility of permanent damage from his episodes which is why we haven't sought medical treatment so far) i just don't know if I want to go down that road where the side effects of medication are worse than the episodes themselves - you know?

SO - thanks for listening to my story. Anyone else out there with this rare type of migraine? They told us he will probably outgrow it, and it may have been triggered by a growth spurt/hormones. He is 13 now.

 

[phorsenuf]

I suffer from these. I had a real bad one once and it landed me in the hospital for days. They said no stroke but either I did have one or I have permanent damage from it. I still get them but I've never had one as severe as that one again thank goodness. It was real scary!
The only good thing that came out of that was I because I was in the hosital for 3 days I couldn't smoke so it made me quit.

I wish your son well. They can be very scary. What scares me is what if I have a stroke someday but dismiss it as a headache.

I have to say too you are the only person I think I have ever come across with these type of headaches.

 

[emememem]

you might also have him checked out by a cardiologist for an echo. Theres a condition called a PFO or patent foramen ovale(small opening in the heart septum) which allows small clots to enter the circulation and cause such neurological symptoms. The opening can be fixed by a cardiologist during a cardiac cath procedure. They're doing a lot of reserch on the corolation between migranes and PFO. Try a google search to get more info...Hope this helps.

 

[worm761]

i feel for you! my DS gets migraines. nothing like you are talking about but they started at about 8yrs old. my little sister has really bad, very rare migraines. she has been paralyzed and hospitalized for a week once. i have also had to call the ambulance because she was having siezures on my living room floor, turned out it was from a migraine. they cannot cure her either. there is nothing they can do for her. i get migraines but nowhere near what my sister and your son encounter.

sending very soft and very quiet vibes that he starts feeling better soon!

 

[ColoradoMom!!]

you might also have him checked out by a cardiologist for an echo. Theres a condition called a PFO or patent foramen ovale(small opening in the heart septum) which allows small clots to enter the circulation and cause such neurological symptoms. The opening can be fixed by a cardiologist during a cardiac cath procedure. They're doing a lot of reserch on the corolation between migranes and PFO. Try a google search to get more info...Hope this helps.

Thanks - they gave him an echo within an hour of us entering the ER thinking he may have "thrown a clot" that caused a stroke. It was pretty extensive, so hopefully they checked for this as well. I have to admit being pretty amazed/thankful how much they tested him for at the time.

 

[nhrenee]

Hi,

My son suffered with "regular" (if there is such a thing) migraines at the same age. He had them pretty bad for a year but did outgrow them. Hopefully the same thing will happen to your ds.

 

[nephthys43]

i have horrifying migraines. i've never had seizures from them, but i've had the rest... aura, loss of sight, vomitting, numbness. i take Imitrex for them when i feel one coming on. it's really not a bad medication. i get loopy from it, but it's not a bad loopy. there were times when i've been moments away from being dragged to the hospital by my mother, and those meds and a dark room worked wonders.

try to teach your son what to look for when his start. mine start as pressure and hazey vision. then comes the nausea and slurred speech. if he can figure out what it starts with, you may be able to head them off.

 

[Coloradomom]

Our DD was diagnosed with migraines two years ago when she turned 15. We were also down at Children's here in Denver(actually almost exactly 2 years ago....we were trying to make it down there from our house on Friday afternoon of Labor Day weekend. You can just imagine that the I-25 traffic did not help!) Hers, though, are not the type your son has. We were referred to an absolutely wonderful pediatric neurologist who is located near Yosemite and Dry Creek. You can PM me if you'd like his name and number. He is amazing and has done wonders for her.
One of the things he recommended was biofeedback, even though there was not a tie directly to stress and her migraine onset. I was skeptical, but we did it because of our trust in him, and those sessions ended up being invaluable. She rarely gets a migraine anymore.
Again PM me if you'd like more info. Happy to help, these are a horrible thing for anyone but especially teens who should enjoy these years so much.

 

[Chris2597]

My ds and dd suffer from these type of migraines. DD started having them when she was about 15 (she is 28 now) and DS started at about the age of 14(he is 21 now). DS is taking a daily preventive which seem to be working pretty well.....He uses the Imitrex injection when a migraine sneaks through the preventive. Both DD and DS have been diagnosed with hemiplegic type migraines. The aura is frightening. There symptoms usually start with some type of vision distubance, a gradual one sided numbing of the fingertips that spreads up the arm to the face, speech is usually the next to go. They can't put the words with the thought. This stage normally lasts about 20-30 min. then the horrible headache. DD is going to consult with a new neurologist to start on a preventive and break thru med. She is currently using Fioricet.

I have gotten reg. migraines since the age of 18 and my youngest dd gets them also. We take Midrin for them.

I think the headaches have been emotionally the hardest on my ds to cope with.

 

[ColoradoMom!!]

Thank you all so much for taking the time to repsond to my post. It really makes me feel better that we are not alone - and so wonderful that I can come here for support and advice

ColoradoMom--I really didn't mean to steal your name Thanks for the great advice - I will PM you. That is so amazing that you live so close by and went to Children's as well.

Chris - yes, that sounds exactly like what my son goes through. Especially the loss of speech (or "word finding") and my son always throws up too . Has your son had any bad side effects from his preventative medication? It sounds like growing out of it may not happen.

Yesterday was such a nice day - amazing how much better "the day after" is - and I wasn't even the one with the migraine!

 

[Green Tea]

I didn't know the name of them, but it happened to me twice, both a long time ago while i was in college. Inability to speak, I knew in my brain what I wanted to say, but it wouldn't come out. Total paralysis on one side of my body(following numbness and tingling initially) First time I was in the hospital for a day, second time about a week including a transfer from one to another. They dx. them as migranes during the week long stay following an eeg, I think.

The last one was 20 years ago, and they have never reoccurred. I have a migrane type headache during menstrual cycles and last year had a migrane with no headache but lost the ability to focus my vision, but no stroke like symptoms that time. As a child I had profound migranes centered behind one eye. Have no idea if the stroke like one was a continuation or just a random occurance. They don't know what triggered them in college, but I am virtually positive it was triggered by a very bright light.

 

[bavaria]

I have to say too you are the only person I think I have ever come across with these type of headaches.

I have had them along with other types of migraines since about age six. My recommendation is to look at foods and food additives. I find that when I am in the US I have to be very careful at reading labels, and things will set me off that do not set me off in Germany.

I also learn to detect the signs early - I have tingling in one finger first. I also learn to detect the aura. I get different auras with different types of migraine - for these I get the chequerboard. I learned these signs as a child and it helped to try and minimize the migraine early. I use black coffee and dark chocolate (even though I sick to my stomach, it helps if I take those early)

Also look at any stressful situations - I used to get them when I got excited about something as a child, as well as worried about something.

Ask your son if he has 'Alice in Wonderland' syndrome - do a search on CNN.com. Nobody talks about this, and it can be frightening - when Dr Sanjay Gupta did a piece on it on CNN a few years ago I wanted to hug him - finally someone understood what I was experiencing.

I hated Topamax (I took it for nerve damage/seizures, not migraines) and now just take some medication which I buy in Germany, and seems to work best for me. Good news is that once I got out of my teens the incidence lessened from every few days to once a month or so.

Hope that things get better for him!

 

[bavaria]

the speech/language issue was another indicator for me while at school - if I couldn't spell a simple word or put two words together either on paper or in my head, I knew that a migraine was coming. As soon as I had any of my usual indicators I tried to get home and to bed as soon as possible. Hopefully your son's school will understand that need.

 

[bavaria]

Here's a link to Alice in Wonderland syndrome

http://en.wikipedia.org/wiki/Alice_in_Wonderland_syndrome

I'll hunt for the CNN piece as well. http://transcripts.cnn.com/TRANSCRIPTS/0602/06/acd.01.html
The reason why I bring it up is that it is often associated with this type of migraine, but very few people have it, and it can make you think that you are going crazy (people describe it as being on acid)

It basically means that your perception is altered - for instance, a sheet on the bed can feel like it is 6 inches thick, or the blood in your veins can sound like an airplane. It can be very frightening, and difficult to explain. Definitely ask your son about it, as he may be relieved to understand that it is a real syndrome, if he is experiencing it....

 

[Jaykeff]

Oh my goodness! As you can see, I am not a prolific poster, but this thread has inspired me to post.

I have been suffering from hemiplegic migraines for over ten years and I have yet to meet or talk to anyone who can relate. . . even many doctors have tried to give me Imitrex not knowing it could induce a stroke with this specific type of migraine.

I get it all, the aura, paralysis, phonophobia, photophobia, the bizarre inability to speak coherently, but knowing in my brain what I'm trying to say and the fabulously painful one sided headache.

I must admit, they are getting less severe as I get older and I am hoping one day the migraines will just go away altogether.

*crosses fingers*

 

[Green Tea]

I have been suffering from hemiplegic migraines for over ten years and I have yet to meet or talk to anyone who can relate. . . even many doctors have tried to give me Imitrex not knowing it could induce a stroke with this specific type of migraine.

fabulously painful one sided headache.

I remember my neurologist telling me as I left the hospital never to take (some specific class of migrane drugs-beta blockers maybe?) because it could cause a stroke. Of course I was a freshman in college and wasn't positive it was beta blockers I wasn't to take or if they were okay and someting else was bad, so I just never took anything after that for migranes, except OTC meds.

 

[Aimee K]

What scares me is what if I have a stroke someday but dismiss it as a headache.

I have to say too you are the only person I think I have ever come across with these type of headaches.

I get them too! And this is what scares me most, that I will dismiss stroke symptoms. The speech issue is called aphasia, and that is what scares my daughters the most. I will be trying to say 'I have a headache and am going to lay down' and it will come out 'Banana steps forward lotion'.

A word about medications.... there's not really any medication that has ever been developed and produced for migraine specifically. Everything we take has been used for something else, i.e. blood pressure or epilepsy. My neurologist actually has me on an old school one called midrin, since I have other issues with my liver and can't process much else. It's not perfect, but if I catch it at the first signs of numbness in my fingers, I can usually make the other symptoms less severe.

I can't imagine dealing with these when you are 12! Mine started when I was pregnant with my first child 14 years ago, and have gotten more severe and frequent as I get older. Lots of love and light and healing energy on the way to all of us, young and old, dealing with this type of Migraine.

 

[Jaykeff]

The speech issue is called aphasia, and that is what scares my daughters the most. I will be trying to say 'I have a headache and am going to lay down' and it will come out 'Banana steps forward lotion'.

A word about medications.... there's not really any medication that has ever been developed and produced for migraine specifically. Everything we take has been used for something else, i.e. blood pressure or epilepsy. My neurologist actually has me on an old school one called midrin, since I have other issues with my liver and can't process much else. It's not perfect, but if I catch it at the first signs of numbness in my fingers, I can usually make the other symptoms less severe.

And this is why I love the DIS!

Aphasia, huh? I'm glad I now have the name for this scary side effect from my migraines, thank you!

Funny enough, I take Midrin as well. It seems to do a pretty good job as long as I take it mid-aura. It's not like there are any other good viable medications out there for our type of migraine.

 

[ColoradoMom!!]

And this is why I love the DIS!

Aphasia, huh? I'm glad I now have the name for this scary side effect from my migraines, thank you!

Funny enough, I take Midrin as well. It seems to do a pretty good job as long as I take it mid-aura. It's not like there are any other good viable medications out there for our type of migraine.

Yes Jaykeff - that is why I love DIS too I was really upset Sat., and it is so good to know you are not alone.

This link has a good summary of Hemiplegic migraines, but it is the lack of productive treatment that is a real bummer - so does the Midrin take the edge off so to speak??

http://www.helpforheadaches.com/articles/hemiplegic.htm

 

[SMurray]

I am so glad we found this site! Thank you for all of your help and advice. I think I got two hemiplegic migraines when I was in high school, but I shrugged it off. Years later, I got two in the span of two weeks. I went to the ER after a bright light (aura), tingling in my fingers and tongue, slurred speech, vomiting, and a killer headache. I was sent to a neurologist, and he put me on Propranol (for blood pressure, I believe). I did not have a major headache for three years....and then I stopped taking the meds. But now, within the span of two weeks (three months being off the meds), I got two hemiplegics. I guess the Propranol works, even though it makes me VERY tired.

It is reassuring to hear that everyone has noted similar symptoms. It had been so long since I had one, I couldn't remember if slurred speech was "normal" for the hemi migraines. I can deal with the numbness, vomiting, and headache, but nothing is scarier that looking at an object (candle, coaster, television) and not being able to say the word. I am an English teacher, so I panic thinking that my symptoms might be stroke-related...and what can an English teacher do if she loses her speech?

So thanks for the comments. Makes me feel like I am not alone

If anyone has any other advice or medicine options, feel free to pass them along!