Migraine

sorry but I am in tears and just need to get this out. I had several of these hemiplegic migraine attacks last night - fairly bad as they woke me up- so didn't sleep well.

This is my 4th or 5th day of this being "caught between aura and peaking and back again. So for I have run about 5 to 6 hours like this at a time over the last few days. As far as I can tell this current cycle started at about 11p last night.

Good news is My neuro is back in his office today!! (I just called to check)!!!! Bad news is this...

I want to at least have a local Neurologist in case this happens again and I can't get a hold of my regular doctor or what not. That and when I want to the ER here they didn't have a clue on earth what hemiplegic migraines were and were ready to tx like regular migraine.

Any who get this... the local neuro office claims to have a "Pain and Headache Institute" but I have now talked to two of the doctor's nurses there asking specifically if their doctor tx'ed hemiplegic migraines and this one today said "oh we just call them all migraines"!!!!!

Ok please keep in mind that I have sever dysphasia and start slurring and almost stuttering as I try to get my word out the closer I get to peaking in an aura. I had also been bounced around on the phone with these folks a good 15 min already so the speech was getting a quite bit off but I did explain this when she picked up the phone and asked her to be patient.

But I just about blew a cork when she said that!!! I was like I do realize these are a rare form of migraine but you do know that they also involve sever dysphasia and partial to full paralysis for some patients, including my self. If you were to see one of my attacks with out knowing what it was you would not think it was a migraine but a stroke and would be calling 911. This of course only succeed in exasperating my attack.

I ended the call with "I just want to make sure I have a local neuro and please let doctor know that this is what he will be dealing with.

I am so frustrated ans scared. I really didn't think any thing of it when they were happening so many times a day because we initially thought they were seizures. And then when he said no I really think it is hemiplegic migraines due to the symptoms, hx and eeg I was like ok so now what. He gave me the verapamil er along with the topomax and when we looked it was like ok we've got it so let's get back to life .

This is nowhere even close to human atm.

Well I will wait to see what the Indy neuro has to say. I am sure he'll have something for me today!!!! That is my thread of hope and I'm not letting go of it no matter what!!!!

Sorry this is long and rambling lack of sleep and just feel awful but tanks for listening .

/hugs

JulieKAy

Oh, JulieKay, I'm so sorry you're having such a bad time right now! for you.

As far as the doctors go, have you checked the site-recommended specialists? I don't have the link, but maybe one of the forum moderators can give it to you. I don't suffer from hemiplegic migraines, but I know their treatment is different, and its important to find someone who understands them.

Good luck, take care of yourself, and I'll be thinking of you.

Sorry you are having such a rough time.

I would steer clear of any neurologist who does not distinguish between hemiphaligic migraines and other migraines. I just have plain old migraine w/ aura, and I know the difference and I know there are huge differences in symptoms and treatment.

I hope you can get some relief soon!

Julie, did your migraines become more frequent and worse since starting the Topamax?

I'm just curious because that's what I experienced. My attacks actually spaced out a ton and my aura symptoms improved dramatically after stopping the Topamax.

I realize everyone can be different, but seeing as you also have the hemiplegic migraines, I was just curious if this was a possibility.

ohh thanks ya all

I did get a break of almost an hour of just the migraine (the last part of the cycle before just dying of exhaustion :P ) but am at the start of another aura now - ugh.

The attacks were already happening pretty frequently and almost chaining together before the topomax but I was getting a bit of a break between them. They have always been worse during the day though.

I think last night was more brought on because I had a pretty bad attack at the football game due to the heat and never really came out of it - actually I never got much of a break before going to the game either.

Still waiting to hear from the doc.

my SO did call because I was up a lot last night. He said I was talking to someone but it wasn't him - lol. I kept loosing my right leg last night and was doing this mantra to keep going when I would get up to go to the bathroom. I thought I was repeating it my head but apparently I was saying it aloud - rofl. Silly girl talking to herself now - oh well I made to and from the bathroom by my self each time last night so good for me .

I will update if I hear from the doc but am in better spirits since I had at least a little break. time for rest now.

I'm so sorry, Juliekay.

Going to the ER is daunting for any migraineur. Using these forms may help:

Emergency Migraine and Headache Care - Forms To Help

They reduce the amount of info you have to try to give the ER staff when you are not feeling well. They can also let the ER doctor know how your own specialist wants you treated.

I think you've seen the list of specialists before, but here it is again for good measure:

Patient Recommended Migraine and Headache Specialists

Please try to get yourself to a migraine specialist. When you have hemiplegic migraines, it's really important.

Greetings again,
Update on the rant!

Doc called (not his nurse - i won't talk to her any more any way because she is a ditz).

We are changing some med doses and trying some prednisone.

He called while I was trying to get some rest and I had already started into a new cycle of these. Needless to say my patience is a bit thin atm as it is and lack of sleep last night was no help. I was also slurry and frustrated at my difficulty talking which never makes me a happy camper.

So all is good. we are agreeing on everything thus far and I ask him how long he feels this is going to take to get under control and he starts stumbling worse then I am. He isn't sure. I try to explain that i need to have some Idea for the vocational rehab folks because I either need to do job training, go back to work of get in to school. He asks what I was doing last and I say well generally working with children and he says well then go back to work???

I'm like ok I don't think you are quite getting the picture here buddy (I am sure he doesn't get called buddy very often) but I can't even drive right now and do you understand that I am basically not functioning most of the day!!!

I won't go into all of it but I did tell him I am scared to death that if we don't wet this cycling broken then I am going to be like this for ever and I just can't live like this.

I am to call back in a few days and hopefully I am a bit more rested and feeling less touchy

So there was hope!! Distress but hope.

Thanks again all

/hugs and peace
JulieKay

Oh and Nutcracker - I did go to the er and they didn't have a clue as to what the hemiplegic migraine attacks were . But they did give the base tx that they use for migraines. I told my Neuro what they did for me and he thought that was about right and didn't have any further recommendations - gah.

I am also looking for a specialist. I wasn't as concerned about these till recently because they weren't doing this running together and we originally thought they were seizures.

So we will get it done and fast cause I'm not messing with it any more :P - lol