Migraine

I am new at this and was wondering if there is anyone out there with hemiplegic migraines, like myself. I got my first migraine like this when i was on birth control and never took it again. I went 6 years without anything, then in March of this year, went to the hospital in an ambulance because at 25 years of age thought i was having a stroke. Then yesterday, 3 months later I got the aura, the migraine, and then paralysis on my left side. I am also being treated for anxiety due to the fact these attacks scare the crap out of me. Is there anybody who has these and can discuss their symptoms with me? I want to know what the doctors told you? Anything would help. Thanks!

Hello and welcome! When you get a chance, please stop by our Start Folderand check out the info there.

We've got folks around here with hemiplegic migraine. Hopefully, someone will be around to share their experience with you soon. I don't have that migraine type, but wanted to pop by and say hello.

We do have some basic info on Hemiplegic migraine HERE.

Hi Spamantha--

You are not alone I also have HM. I know what you mean about scaring you to death. I had my first one last fall (2008) I thought I was having a stroke. Of course found out that I wasn't. Mine are on my left side and I have some lasting paralysis in my arm and leg from a few hours to 10 days.

I tried topamax, it helped, but affected my vision so I had to quit. I am still trying to find the right mix of meds for me. I hope to find it very soon I still work full time (I am a teacher) so I have the summer "off". I teach summer school so I am still working daily, but I am done at noon so that is helpful on bad days. I also have MWA so that is anlther "beast" to deal with!!

I will write more later, it's late and I don't think I am making much sense. I just wanted to respond so you would know that you aren't alone. Take care

Hi spamantha, I too have HM and MWA. You are not alone! I had my first HM about 7 years ago, though at the time they didnt know what it was. I also get migraine related seizures.

Mine is always on my left side. at this point I have some what seems like long term effects from the migraines. I am always spacy and forgetful, weaker left side, and often I trip with my left side not realizing it didnt pick up as far as I thought it did lol.

The first few I was a bit freaked out. Now though, I know what it is and can often predict when its coming on much like one would with a regular migraine. I also do that with the seizures. I can feel when it seems to be coming on.

Do make sure you have a good neurologest, and by all means DONT take triptans or ergots.

My symptoms are left sided weakness and numbness or flat out paralysis. From the face down to the toes. I will sometimes not be able to talk, or forget what im saying mid sentence. I will sometimes get lost or disoriented, and will sometimes loose consousness.sp?
This can last anywhere from a few hours to days. Sometimes they are by themselves, other times they are during or tail end of a severe regular migraine with aura.

I hope this helps! Do know your not alone, and try not to be afraid or anxious about them. Try to learn all you can about them, and get a good neurologest specifically knowledgable with HM.

I know this may sound wierd, but try to embrace them, they are now a part of who you are. Acnowledge that, and move on to finding a good preventative and how to recognize symptoms of it coming on instead of fearing them. I have had pretty good luck with meds in the seizure family as a preventative for HM. They arent gone entirely but the frequency and severity is much better.

Hi Spamantha12,
I have migraine with auras, FHM, and Prinzmetal Angina (PA), which is vascular disease where your arteries spasm and close up cutting off blood. Just like momsbreak9, you are definitely not alone! I was diagnosed a few months ago with FHM and last year with PA.

Symptoms for me: I too get the migraine-related seizures, left side weakness/paralysis, confusion, can't speak, etc. Typically my attacks start with a seizure, which leaves me unresponsive for an hour to several hours. Once I'm conscious again, I'm unable to speak, confused, and have left-side weakness or paralysis (face droops). The weakness can last days. The confusion can be alarming, as at times I don't know who I am or where I am. Other times I just get a several migraine along with confusion and then my face will droop or stiffen. I will tell you that you can get just migraines separately from HM. There are days when I just have a migraine attack but no other symptoms.

Doctors: I've seen several neurologists and am currently being treated by a migraine specialist. My experience has been that some neurologists have no experience with this and will lean towards psychological as the root cause. My migraine specialist is wonderful except that she's even frustrated that I'm not getting better with the medicine regiment she's put me on because she wants to increase my seizure med (Depakote) but over 1000mg gives me chest pain (from my PA). It's all such a fine balance when you have other medical conditions.

Tips:
1. Wear a medical ID bracklet or necklace.
2. Put a card in your wallet that tells the EMTs what HM is (explain the symptoms), lists your meds, and has your doctor's contact info. Did you know what most ER and EMTs don't know what HM is? So it really helps them to have that card. We learned that tip on my second trip to the hospital. I just typed up the info and then put in a plastic sleeve.
2.1 Have extra copies. My caregiver (my partner) gives the EMTs/ER personnel an extra copy.
3. Keep a daily dairy of what you're eating, weather, symptoms, etc. It gives the doctor valuable information and helps give you some control.
4. Driving. Be very, very careful. Due to my auras and seizures, I'm not able to drive as attacks come on me so quickly.
5. Falling. Be alert. You are prone to falling. So we alert to your symptoms and sit yourself down. I've already fallen and hit my head. It happens so fast.
6. Medical aids. I find my walker is invaluable and helps me when I'm weak to get around the house.
7. Help. Do you have someone to help and watch after you?
8. Find some peace. I know these attacks are frightening. For me, it's even more upsetting when it happens in public. I'm finding that as time goes on I'm accepting that the attacks are temporary and I'm ok. Yes, they are debilitating as I have maybe 1-3 good days a week, but I try to focus on the good moments and days.


Be well, Tonya

Love the tips list, Tonya! Thanks for sharing that!

Thank you so much Tonya and others who have given me some definite peace with the fact I am not alone and it is something other people can deal with. I am kind of a hypochondriac so this is a very scary disease for me, but it is a part of me. Your help and kindness is priceless.

Hi All,

Yet another hemiplegic migrainer here. And, I agree with all the tips Tonya gave you, Spamantha. I had my first hemiplegic migraine attack last fall 2008 (lifegaurd) while on birth control also (Spamantha). Even though I've been having the darn things every day for the past 9 months, they still scare the crap out of me every time.

I call the every day ones, small attacks. Those just cause my left leg to give out and cause me not to be able to find my words, so, to me, those aren't that big of a deal. For some reason, they seem to happen after I do some form of aerobic exercise, like when I'm resting afterward. They never happen during, always after I stop. Anyway, for now, I'm no longer doing aerobic exercises until I see the cardiologist, that and the verapamil seems to have stopped most the daily hms.

The big ones, however, really scare the beegeeves out of me. By the big ones, I mean the ones where I lose consciousness, can't speak at all, am completely paralyzed on my left side (seems to always be the left side for most of us, doesn't it?), and lose my memory and ability to think clearly.

I, too, seem to have some long term effects (momsbreak9), even though mine have only been going on for 9 months, but every day for 9 months. My left arm and shoulder just don't seem to want to come back online and my left leg is weak. It's frustrating, but it is what it is.

I think the best thing I've done for myself is finding a migraine specialist ... my wonderful neurologist in WI is now listed on the recommended doctors list. She's terrific. The other best things I've done are some of the things Tonya has listed in her prepare yourself list. It helps, since most people have no clue what hemiplegic migraines are, even medical professionals, and as I've learned on my horrible journey even some neurologists haven't a clue what they are.

Take care all.

Jaclyn

One more tip:

If you have a cell phone, program the name ICE into it and the phone number of whoever you want called IN CASE OF EMERGENCY. When medical personal are called to the scene of an emergency they will scroll through your cell phone if you are unconsciousness or can't speak looking for ICE. It will be the number they dial. Make sure the person at that number knows about your hemiplegic migraines and can give them the name of your doctor and any medical information they may need ... medications you're on, etc. Hope this helps.

--Jaclyn