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Posted 5/18/2005 3:33 AM (GMT 0)
eyes  

     Was wondering if they are others here that suffer from Hemiplegic migraines...Been trying to find information so I can research it and educate myself so I can understand my recent condition..Thanks..Mary

Posted 5/20/2005 5:21 PM (GMT 0)
Hi! I don't suffer from hemiplegic migraine myself, but I recently did a little research and wrote an article on it here:
http://www.relieve-migraine-headache.com/headache-hemiplegic-migraine.html

But you're likely the expert! Have you found some successful treatment? It sure is a difficult thing to deal with. All the best!
Posted 6/11/2005 9:57 PM (GMT 0)
Hi Mary, I too have Hemiplegic migraine, there doesn't seem to be a lot of information or support out there compared to other migraine types. I am trying to find out as much as I can regards treatment options etc. as it's such a strange thing to experience. I'll certainly be interested in how it affects you. I get confusion, paralysis, pain and weakness in one side of my body (left side) not really bad headaches as in other migraine but severe pain in my neck and left arm which doesn't seem to respond to pain relief. One thing to mention if you don't already know is that you must not take Trypans or over the counter treatement for abortion of migraine.
Are you taking medication to try to control it ? I'm in the process of trying different options to see which helps the most, have just started trying anti epileptic medications as well as high doses or amytrypltiline (tricyclate antidepressent) It's quite difficult to get the balance between controling the symptoms (as that is all they can do as there is no cure) and feeling well.

Best of luck and try to keep positive!!
Posted 6/21/2005 7:37 PM (GMT 0)

I have a little history with Hemiplegic Migraines. I have had migraines since I was a little girl and I will never forget how painful they fell. My mother told me that migraines run in our family, so i guess it was around this time last year when I had my first experience with one. I was at work and all of a sudden I felt my right thumb go completely numb and then slowly it went from one finger to another. Then I felt the inside of my mouth go numb and thats when I asked my boss (b/c she used to be a nurse) what it could be. She got scared and thought I was having a mini stroke and I thought that was knida wierd b/c I was only 19 at the time. So then I started getting scared b/c I couldn't speak correctley. My vocabulary words were getting mixed up and i wasn't making any since. So i called my mother and she brought me to the ER and thats when they identified it as a Hemiplegic Migraine. The funny thing is, is that I didn't feel any head pain like a normal migraine would feel. The doctor gave me a MRI and everything came out fine and he said that he could see a little sinus around my nose but that was it. He recommended me to a nurologist but I never did go b/c I didn't have any health insurance at the time. I would like to know other people's  experience with these migraines so please share with me your stories.

Thanks,

Maegan confused

Posted 6/28/2005 6:47 AM (GMT 0)
hi mary, my name is joshua johnson and my fiancie suffers from hemipalegic migranes. she get the paralisis on the right side of her body and a throbbing migrane in the left side of her head. i'm still trying to learn about this type of migrane, but there there is alot of big words for me... :-) ...she use to only get one attack a year, but now that she quit smoking this last march she had 3 in march and has had one a month since then....her nerologest doesn't know what to think..... usually she would go to the er and get a shop of demerall, tordoll, and gravol..... but they refuse to give her demerall now saying that it is to addictive, and the tordoll doesen't work any more.... she has had maxaram in the past to no affect, and i've been told by her nerologest that she cannot have a dhp i believe its called because there can be some fatal effect because of it......  i do not know if there is any surgery you can have to help stop these from happining..... i just know that the doctors thatare in the er don't really know as much as they try to lead me to believe...tonight she had a migrane and we had to go to the er and the doctor was telling her that she doesen't have a migrane and that she can't come to the er for a headach because he said that because some nerve in the back of her neck was really hurting her when he pushed on it that this was just a headach caused by stress or sleeping the wrong way...he said that this nerve comes from the brain and comes out of the muscle in the back of your neck....and because this nerve was irritated that this wasn't a migrane and he was refusing to traet it with a narcatic such as demerall or morphine cause she had morphine the last time she went to the er and it had helped the migrane....its quite the thing to have to live with these migranes....sorry if some of this doesen't make sence my spelling is bad and i'm really tired right now.... 
Posted 7/23/2005 4:51 AM (GMT 0)
I had my first hemiplegic migraine when I was in the 7th grade. Left fingers tingled then went numb. Left side of my tongue went numb. I got a really bad headache. That was my first full blown migraine. Prior I had what doctor would describe as stomach migraine. I would get sweaty, weak, diarrehea almost to the point of loosing consciencseness (sp?). An hour or so later I would be fine. My migraines progressed to include classic migraine to go along with hemiplegic migraine.

In 35 years I've been to several docs, taken lots of meds, several tests and even had an unnecessary surgery for a rare brain aneurysm that wasn't there. The doctors have concluded that my hemiplegic/classic migraines are brought about by seizure like activity (EEG). Changes in barametric pressure are the worse trigger. I took depakote for several months (10 years ago) and installed central heat/air in my home and that took care of the majority of my migraines for several years. In April, I ate some cake that was loaded with almond extract (another serious trigger) and I started having migraines 2 -3 times a day again for the first time in several years. I went to my family doctor who out of desperation gave me a sample pack of everything. Zomig, Maxalt, Imatrex. He also referred me to a neuro the next day. I took the Zomig and lost the feeling of my arms from the shoulder to the elbow. I could still feel my hands. That was so weird. I didn't take anything else. The neuro said that was good. Triptans can cause persons with hemiplegic migraine to have strokes. He started me on Topamax and it took me about 2 months to get over the initial side effects. I kept taking it because my migraines stopped but I was having a really rough time with the side effects. Eventually I became stabilized and I'm doing well controlling my migraines. Hopefully it will continue to work.
Posted 7/23/2005 10:19 PM (GMT 0)

Hi Elle---I do hope that your family doctor who gave you a handful of sample triptans told you not to use more than one kind in a 24 hour period. I worry that if one brand didn't work, you might be tempted to try a different one in a few hours. DON'T do that, OK? BAD NEWS!  Has the neuro's diagnosis made it certain in your mind that you shouldn't take ANY triptans? Does it matter if your migraine is a classic migraine or a hemiplegic, or must you avoid triptans completely?

I'm learning that there are more types of migraines than I ever knew about.

~~Pegasis yeah

Posted 7/25/2005 1:09 AM (GMT 0)
I don't take any triptans and wouldn't. He explained how the hemiplegic migraines effect the blood vessels in one side of the brain and the triptans effect the overall blood vessels. The result is possible/probable stroke. He gave me a couple perscriptions for pain meds for breakthrough migraine if I needed them. Since starting the topamax in April I haven't needed them. I don't really like taking meds on a reg basis but he seems to think that the topa will be long term if I contunue to have success.

elle
Posted 7/26/2005 2:38 AM (GMT 0)

Sounds like some pretty scarey stuff going on there. I do hope the Topamax is the long term solution for you.

~~Pegasis :-)

Posted 7/29/2005 3:49 PM (GMT 0)
I don't know about you people but it makes me so mad when i go to the Hospital and i'm told that i'm only there to get high.  When the pain is so bad that you hope to die and pray to god to take the pain away or your life you don't need perple telling you that your not sick and your just looking to get high.  I was told one day by a very smart DR. that it was all in my head ha ha ha I said i thought it was in my toes.  I have tryied med after med and nothing works has anyone tryed pot ?? i was told by a old man i was talking to in the ER one night and he told me that is what hes uses.  I'll try anything right about now.
Posted 7/30/2005 12:10 AM (GMT 0)

WOW! I know that kind of pain! How miserable you must feel! Have you been to that emergency room before?  Do you suffer from the Hemiplegic migraines? I, thank God, just get the ordinary migraines, but I understand the feeling of wanting to do ANYTHING to get rid of the pain.

You certainly must have been seen by staff members who have NEVER had anything CLOSE to a migraine in their lives!  I've never tried pot. I live in California where there's been a lot of medicinal pot issues in the news lately. Our state says it's legal if it's prescribed by a doctor. But the feds say it's illegal.

Did the hospital end up tossing you out without treating you? That doesn't seem legal to me! Tell us more.

Go ahead and vent. That's OK here! Just no bad language. tongue

~~Pegasis yeah

Posted 8/3/2005 6:26 PM (GMT 0)
Hi there,

Yes, I have just been told by my Neuro that my 9 years of symptoms that he and others were puzzled by, are probably hemiplegic migraine. I get terrible migraines with visual and auditory auras, and have numbness and weakness and pain all on the left side of my body. When I am very bad I can barely think, and I look like I am having a stroke. Sometimes my breathing is even affected.For years doctors have told me I have Myasthenia Gravis, but then they always change their minds, and I have been told more times than I can care to recall that it's all in my head, and it's stress. I think I am on neuro number 11, and he wants to send me to Shand's again for a second opinion. I hate doctors. LOL  BUT, the only treatment he has suggested is to increase my dosage of Inderol, he doubled it. (he seemed puzzled as to why I didn't just increase it myself....duh, I thought that would be dangerous to do that without seeing a doctor. Do they forget that we are SUPPOSED to see them when we are sick and don't know what to do to get better? Sorry for annoying you, doc, but you need to help me!!) Forgive my temporary rant, I always get frustrated when I see my neuro, and my GP won't touch me because he says migraine and MG are in neuro territory. I feel like the proverbial hot potato!! ANYWAY you are not alone, and I am now only beginning to learn about this thing. So far it sounds pretty strange, but it seems to fit my symptoms, so who knows...maybe this doctor is right and the increase of this med will help. I hope so...

Posted 8/4/2005 2:59 AM (GMT 0)
Well i have had two migraine's from the last time i posted untell now. With the first one at the ER they gave me maxeram and after getting very hot and uncomfortable for about a hour the pain went and it was all over. after that worked so good i went to my family dr. and got a perscription for maxeram and with the 2nd migrain i took 40 m of maxeram as soon as i started seeing the little lightening things and after about 3 hours of pain (not half so bad as normal) I was perfect. I pray to god that if i have to keep having these migrains that the maxeram keeps working.



Thanks,

Don
Posted 8/5/2005 12:17 AM (GMT 0)

Don, I'm so glad someone took you seriously and gave you something that worked! After all, it really is all in your head! tongue

I'm just now learning about hemiplegic migraines. Is there anything you can take to prevent them? Or do you just have to deal with them when you get one? They sound like an especially miserable type of migraine.

~~Pegasis yeah

Posted 8/5/2005 12:45 PM (GMT 0)
Hi ~~Pegasis

There is nothing i can take to prevent the hemiplegic migraines because when i was very young i had a heart operation and now they say that if i take anything to prevent the migraines it cold give me a stroke. So as of right now i just have to put up with the pain and suffer it out. Not to be a jerk or anything but its nice to know i'm not the only one that has migraines like this.

You all have a good day and i'll talk to you later.

Don
Posted 8/6/2005 9:58 PM (GMT 0)
nono    SHAME ON ME!!! IT'S BEEN AWHILE SINCE I LAST POSTED OR VISITED,PLEASE FORGIVE ME..

LIFE HAS BEEN HETIC WITH TRYING TO GET BACK TO WORKING FULL TIME AND NOT GETTING ANY BETTER..

I've been going through some hard times and I know most of you are also and I'm really sorry I haven't been around,but hopefully that won't happen again. Cause I hate going to the hospital,especially by rescue which happened this past Wed.I was out shopping with my Dad and Niece when all of a sudden without any warnings at all I got an intense headache that took my breath away and I could hardly walk,much less stand.Was taken to the nearest hospital,no where near my reg.drs and it seem to have taken for hours which it did.They had  only 1 dr on staff that morning I came in  about 11:00 am and didn't get seen til almost 4pm,granted they did blood work,cat scan and hooked me up to monitors.Mind ya the headache was not getting any better,how could it I wasn't getting any meds not even IV fluids,I did I have an IV in place that the paramedics did in the rescue..It wasn't til I started vomiting that I got something for that only and than the afternoon Dr came in ,never saw the am Dr and after a brief exam I got Iv fluids with a piggy back bag of pheragan and dilauid and than a spinal tap was ordered.THe Dr tried 3 times in the ER but had no luck,so finally I was sent  to radiology for them to do it and THANK GOD he got it on the first try..My back is sore and looks like a pin cushion,just 3 weeks earlier I had strained by back while out in the boat during King Fish Tournament,so by now by back is sore to be heck..They still not sure what caused it no infection in the fluid so no menaguies(spelt it wrong) and no red blood cell so no ruptured anruysm...So Neuro Dr oked to have the second series of three of a cervical epidural steriod injection and in the OR before getting on the table I had another one of those instant headache came on right in the middle of a conversation I was having with the Dr .They had to help me on the table and sedated me immediately and than hooked up the monitor,cause they tried to hooked the monitors up first but my body was thrashing from the intensed pain.He gave me feriocet to take  between my methadone dosage and zanaflex and told me to call right away  if it happen again,so I had to cancel my trip to Orlando this weekend..Bummer casue I was so looking for a get away from everything..I see my Neru Dr on the 16th hopefully he can shed some light on the sitituation and we can get it under control..Has anyone else had this happen to them and if so what the heck is it? Well better get ready my son will be here soon to go to the movies,I think he is taking me to see The Dukes of Hazard...Take care and hope everyone is having a nice weekend..

 Mary

Posted 8/8/2005 6:52 PM (GMT 0)
confused  I am just starting migraines at 50.  I have left side numbness,aura, and headache. I also feel like someone hit me in the back of the neck with a 2x4.  I am on a bloodpressure med to prevent migraine and imatrex for those i do have.  I am having 5-8 a month on the preventative.  I am getting the dr. runaround also.MRI showed borderline low lying tonsils whatever that is.  I am a flight attendant for airline and have been taken off my job until i can find a solution.  Having no luck.  Im on my 3rd neuologist and seeing a family doc also.  any thoughts.  nice to know there are others although i wouldn't wish these on anyone.  thanks fiina
Posted 8/9/2005 12:01 AM (GMT 0)
No Fina, thank goodness, there are others! It is very frustrating dealing with neurologists, you may go through a number more before you find two that agree on anything - but do not give up. Keep a journal of how you are feeling, what you are eating, just everything you can think of. Who knows, maybe something will pop out as a trigger, I am trying to do the same thing. It seems redundant kind of to have to sit down and say "Okay, today I woke up in pain, and then I ate this, and I took this medication, etc etc" but I have to remember that in a day or two, or whenever I have to see the doctor, I will not remember all those details. And details can hold the answers or clues to what is causing your migraines. A note, too, of observation over my 9 years experience with 11 neuro's, they get very frustrated with what they cannot figure out, and you have to be your own best friend and keep going to bat for yourself, and keep seeking medical help because you are deserving of good health. They love to attribute a lot of neurological symptoms to stress, depression, repressed problems...(always makes me think of the old movies where the elderly ladies came down with those helpless cases of "the vapors"). But what is happening is very real to you. Keep track of it and hang in there. Keep posting...

cntrygrl

Posted 8/10/2005 12:25 AM (GMT 0)
cntrygrl thanks for the info and encouraging words I am so new to all of this I don't know what to do next. Hate to lose my 20yr.career because i can't find help. Again thnks for that fiina
Posted 8/12/2005 2:43 AM (GMT 0)

I have not, thank God, experienced migraines that go to this extent. But I have had a few that dropped me to my knees.

When stuff like this happens, it's really hard to explain it to a doctor, isn't it? If it ever happens to you when a friend or family member is around, DRAG that person to the doctor with you at your next appointment!  Some doctors seem to need proof!

I know how frustrating it is to switch doctors. And it's so true that the doctor gets frustrated when (s)he can't figure out what to do next. A GOOD doctor will refer you to someone smarter!

I posted this somewhere else.

Remember, 50% of all the doctors out there graduated in the bottom half of their class! 

Some doctors are not as smart as you need them to be.

~~Pegasis yeah

Posted 8/12/2005 11:03 AM (GMT 0)
eyes  Pegasus, I love your comments....

I have a question for all of you though, my doc put me on an increased dose of a beta-blocker, actually he doubled my dosage- now I'm on 20 mg of Inderol 3 times a day. And that does help prevent them from coming, but...1) The dosage that high makes my pulse rate and blood pressure so low that I'm exhausted and light-headed. Has this happened to you? and 2) He never prescribed anything for the pain when the migraine manages to come anyway some days...I end up popping Ibuprofen 4 at a time, 3-4 hours apart, until the pain eases. There must be an easier way...I am going to ask my GP to prescribe something for the pain. And I've noticed something kind of weird... scool I have auras and light sensitivity that can last for days at a time, and I end up having to wear sunglasses indoors (my kids think this is actually cool, lol) and I have sound sensitivity, but the strangest thing, I smell things that nobody else in the house notices. And these little "clues" I get in the auras and sensitivities precede the actual pain of the migraine by days or hours... and will hang on after the pain is gone... The smell thing drives me nuts though. Does this happen to any of you?? confused  

Have a good day, all, and hopefully, no pain....

cntrygrl

Posted 8/13/2005 3:45 AM (GMT 0)

Cntrygrl-

I just spent 2 hours typing this nice long post and it got deleted right before I submitted...I have a good one for you...will post tomorrow!

Good night!!!

Frustrated in Kentucky,

Sara mad

Posted 8/16/2005 9:13 AM (GMT 0)

Howdy,

My names Jess and my dad justhad a health scare, we all thought he had a stroke. We all thought the doctor had gone bonkas when he said my father had a "Migriane Aura" as he didnt have a headache. we all came home from the doctors and i started researching ad came across "Hemiplegic Migraines with Aura" and it had all the symptoms that my dad suffered, i then started to agree with the doctor about his diagnosis. he had a brain scan a few days ago and we are getting the results tomorrow but the doctors said when he was getting it done they seemed clear. If they are clear he must have this disorder if noting else shows up.

He suffered with:(all on his left side)

- numbness and tingling all down his left side which came about five minutes after the AURA and vertigo.

- dizziness

since then its been like 3 days and his left side that was affected has been heavy and sore and a bit tingly around lips ,etc and he has been lathargic.

Im not sure whats going on lol.

Ive been researching quite a bit and this is the closest thing to what my dad experienced.

any thoughts?

-Jess

Posted 8/16/2005 9:46 PM (GMT 0)

Very possibly Hemiplegic Migraine...Have you had a chance to read about this yet???

I will gather info and post it here in the next day or so...I have such a bad on today if I put the info here it wouldn't be coherent...sorry!

Try not too be too scared for your dad. Very often migraines will "look" like strokes from their symptoms-Especially with the numbness and things going on with one side of the body.

Be comforted with the fact that lots of people have Migraine Auras without the actual head pain...which might be what your father had...

Keep us posted? I would like to know how things are going!

Sara

Posted 8/17/2005 12:20 PM (GMT 0)

Hey Sara, Thanx.

Well he got his scan results back today and they were clear but the symptoms are still the same and th doctor thinks it may be sumting else so he is making my dad see a neurologist within 30 days... but if it is this migraine the doctor said it will not show up on the MRI scan which he will be getting done A.S.A.P...

If its not this migraine the doctor said to my dad and mother it will most probably be minute thingo in his brain like a clot maybe or somehing, i am not quite sure but im really worried.

:S:S:S:S

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