hemiplegic migraine with aphasia and inability to understand others

By Michelle Thursday, November 15, 2007

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yesterday i developed one of my hemiplegic migraines. i took my meds and went to bed. about 90 minutes later i woke up screaming in pain, but that was all i could do. i couldn't speak and i couldn't understand what others where saying to me. it all sounded like baby talk. if they kept repeating themselves, i would finally get one or two words but that was it. someone handed me what i now know was a pen but at the time i didn't even know what it was or what to do with it. i was terrified. my roommate finally called ems but they couldn't take me to my usual hospital because it was on diversion. the other hospital was good and thorough but it wasn't my docs.

now my friends who i live with and who's children i take care of are no longer comfortable with me caring for their children during the day so they are putting them in daycare. i feel really bad about that because it is an extra expense for them but i can't help it. there is nothing else i can do about these migraines. i am trying to get rid of them, taking my meds exploring other opinions...i just don't know what more i can do. helping them with their children was how i 'earned my keep' so to speak since i can't work, so i have to seriously consider moving back home with my mom because i don't want to be a drain on my friends.

this situation just keeps getting worse and worse. iam so depressed rigt now. i would cry if the tears would come. my life is such a mess.

can anyone help me

Comments (6) | Add comment

Nancy Harris Bonk, Health Guide

11/15/07 8:38am

has a rare form of Migraine disease like Hemiplegic Migraine- a Migraine specialist is mandatory. Seeing a neurologist who may not be an expert in Migraine disease and headache disorders does not do you any good. Migraine/headache specialists are THE experts in this area. Please find one so you can feel better. We can help you. If you don't see anyone on the list below, please let me know:

maurice haren

11/16/07 12:11pm

you have to find a lawyer that does disability cases and fight the social security for disability,you should win,youll get help with,medicine,with,with hospital and doctors when iwas in new york ieven got botux,your life will be your own and you wont be abind on your parents or friends,just you and your migraines,good luck on your quest.

Yvonne

11/17/07 9:56pm

Michelle,

Nancy and Maurice both gave you great advice.I'm so sorry that you are going through this.

Hemiplegics are totally frightening. I have watched my son go through what you described.

It took over 3 yrs but we finally found a great pediatric headache specialist. Now, that Chuckie is on the right medicine, Verapimil ( in studies, it shows to help hemis) he is doing much better.

He had a small hemi episode Monday night. His vision in his right eye went blurry in strips and then he went totally blind in the right eye. Next, his right arm went numb and weak. Lastly, came the extreme pain in his right eye/head. He had trouble finding his words but didn't get completely confused.

The ice packs/heat pad didn't help. Showers didn't help. The pain was so bad that he couldn't get comfortable. He decided to just go to sleep. Luckily, he never started vomiting. He slept for 12 hrs. When he woke, he only had a slight headache at the back of his skull which lasted another 6 hrs.

Like I said, it wasn't extreme. His speech didn't get slurred, he didn't talk and not make any sense. He didn't loose motor control completely, only weakness.

As parents, it still hurts to see him suffer. But, I feel blessed that we have these hemiplegic episodes more under control. Without medication, he was having one a week. Without the right medication, he would get episodes that would last 8-11 days.

So, I encourage you to take Nancy's advice and find a headache specialist. We had taken Chuckie to three neurologists before his current dr. They all said he was just having migraines with extreme complications.

They were so wrong. They were having me give him abortives at the onset of the migraines, which was increasing his stroke risk.

So, please keep looking until you find the right doctor. One that takes the time to listen to you. One that is knowledgeable about migraine disease. Good luck.

Yvonne-MigraineMom

Sherri rae

11/19/07 8:16am

I suffer from migranes, ans so does my daughter. She was in the hospital for 3 days, over the weekend. They couldn't get hers to stop, finally, the dr. tried Oxygen! set at 15 on the machine, it along with Toridal stopped the migrane! Something to consider anyway. I'm gonna ask my dr. for it. they also had oxygen delivered to her home, so she could have it at home....

Leah Roye

1/27/08 7:56am

i have hemiplegic migraines for 9 years now...for the first 6 months i was in the ER constantly and no one knew what was wrong finaly i foudn a great neurologist who actually knew what was happening to me. He started me on DEPAKOTE...(valproic acid) and my life totally changed. Prior to the meds I wanted to kill myself I was so depressed because I could not be trusted to care for my infant and toddler alone. I still get them occasionally but they do not progress into the full blown thing. when i get them i get numb and tingly in my fingers, lips, tongue then i lose my speech, it becomes garbled so no one understands me but i completely understand them it just seems like they are talkin in slow motion and then i get completely blind..it is so scary but find the right neurologist and you will be so glad and feel so much better about life....good luck....Leah

Michelle

1/27/08 4:40pm

Thanks Leah

I love my neurologist. He is trying so hard, my migraines are just being very stubborn. We may have found the combo that works for me. I am currently taking Topamax and Verapamil and it seems to be helping alot. I am down to having 3 migraines in the past month, none have lasted more than 2 days and none have taken my speech, so I consider that big time progress. I just hope he lets me go back to work soon. I miss work.

Thanks for the encouragement. Best Wishes to you.

Michelle Big Grin

hemiplegic migraine with aphasia and inability to understand others

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