Hemiplegic Migraines~New Diagnosis...

[Brandelyn]

I recently was diagnosed with Hemiplegic Migraine Disorder....I guess that is what it's called. Disorder...disease, whatever. When I first went to the hospital with my symtoms I thought I was having a stroke. My whole left side had become parylized, I was having trouble talking, my face was drooped, and basically all the classic symptoms of a mini stroke. They didn't really know when they were discharging me what was going on...if it was that I was having TIA's or what...after a couple hours they had decided it was ok to let me go because my symptoms went away...but after I got home, and slept a little bit my symptoms came back...so I went back to the hospital and was admitted this time for more tests. The next day I was finally seen and evaluated by a neurologist who ruled out that I was having TIA's, and determined that I was infact having Hemiplegic Migraines. They put me on Topamax 25mg twice a day...and the side effects is something I am still trying to get used to. I am continueing to have horrible dizziness, times where I am just out of it. Today I had a REALLY bad dizzy spell that felt more like my brain was vibrating or spasming. Not sure if other patients with this diagnosis can understand this feeling. After a long...intense dizzy spell I passed out. I could hear my husband and daughter talking and wondering if I was ok...but I couldn't move or say anything. After a few minutes of being "out" I came to and was just there. I couldn't move my left side for quite some time, and I have had dizziness all night. It's pretty hard for me to be sitting up and on the computer right now...but I am just trying to read and make sense of all of this. I haven't see a physician since being out of the hospital, and I know I was supposed to have had my medication increased...but I don't know if the Topamax is even the correct medication to treat this, and the side effects from the Topamax are hard to be a parent to 3 small children on.  I am a stay at home mom, and I am worried that a episode like today will happen when my husband is at home and my kids are very scared and don't know what to do. I have read that patients with Hemiplegic Migraines can go into comas, or have perminant damage....I am only 28, and my kids are all under 6. I have a long life ahead of me, and right now I am frustrated that I can't even walk to the park with my kids like I used to. What is my future going to be like? Recommendations to ask my doctors? Medication? Anything will help! Thanks. Brandelyn

[lindaloo606]

I too have all the problems you talk of in your write up.  I have suffered for five years with this debilitating disease and have found that medication does not help in any way.

I was so sorry to hear that you have to deal with this and with three young children, thankfully mine are older and are able to take care of themselves.  I have never talked to or met anyone else who has ever experienced hemiplegic migraine and have found myself quite alone with this illness.  Neurolgists are there just to give out tablets and nothing else.

I have still to find something that helps even a little, but unfortunately have not to date.

If you would like to talk more please contact me.

Linda

[Godofredo MD]

Hi.

I am sorry to learn that you are suffering from this condition and it has been affecting your life in so many aspects. I do wish your condition will improve soon.

It does seem to appear that your symptoms are related to the presence of hemiplegic migraines. Treating this disorder can be challenging and it would be best to consult a doctor who specializes in managing this condition.

Unfortunately, not all drugs used to treat migraines are applicable for hemiplegic migraines. Ergots and triptans are contraindicated as the vasoconstrictive actions of this drug may bring about concerns of a stroke. Because of this, pain is managed by other drugs including NSAID's, antiemetics, and narcotic analgesics.

For prevention, especially in cases of familial hemiplegic migraines, calcium channel blockers have been reported to demonstrate some effectivity in preventing attacks.

There has also been reports that Botulinum toxin may be beneficial to some cases of hemiplegic migraines. In a case report of a 44-year old woman with hemiplegic migraines, Botulinum toxin type A was effective in treating the symptoms of her condition, and this led to her not taking any other of her previous medications such as triptans or other prophylactic agents.

You can probably try e-mailing the author of that case report for further information. His details are as follows:

Dr. Ray Goggins,
Specialist Registrar in General Adult Psychiatry, Cirencester Memorial Centre, Sheep St, Cirencester, Gloucestershire, GL7 1QR
***@****

Hope this information may be of some help to you.

Good luck.

[aiyanaw76]

hello,
i'm 20 years old, recently engaged, and helping to raise my 3 yr. old niece.  i was diagnosed with hemiplegic migraines not too long ago.  i had a recent experience, i was spending time at my sister's.  suddenly, it was as if i had passed out, but i was still aware of all that was going on around me.  when i came to, i was paralyzed on the left side.  i've had problems with it ever since.  if you ever want to talk, feel free to contact me.

                Amber

[gturpin]

Hello,

I also sympathize with your hemiplegic migraines and trying to raise children at the same time. Mine are all grown now I don't know how you do it with the headaches being so debilitating.

I'm 46 years old and was diagnosed with Hemiplegic Migraines about 5 years ago. I have gone through the whole gambit of medications. There was one medication I remember oh so well it was called axert, it left me completely paralyzed for about 4 hours on my whole body. It seems the Doctors are still not sure what to give for these headaches. My wife has been administering Demoral and Phenergan shots when I get the headaches and go numb on my left side. The shot knocks me out and stops the cycle only temporarily. Then we start a new day and a new cycle.

I just wish I could go a day without a headache that doesn't progress into a hemiplegic migraine.

[savannab]

my name is savanna. i am almost 18 yrs old and have just been diagnosed with hemiplegic migraines. my 1st episode was about 6 weeks ago. since then i have had 3. when was havng my first one i went to the hospital and was told that i had a mini stroke or TIA. i had MRI, ct scans,ect! about every test you could think of. my 2nd episode was about 3 days ago. i was rushed to the ER and later was diagnosed with hemiplegic migraines. i am so thankful that i finally know what i have got. i was beginning to think it was all in my head, but i knew i wasnt going crazy!!! my symptoms are on my left side as well. i can tell when i am about to have an episode because i all the sudden become tired and cant talk! then my left side feels so heavy an weak. i also get dizzy and i notice i stare into space a lot! i am on varapamil and 2 other meds that i cant remember the name of. but so far they have worked. like the other night i was in CVS and had an episode. my speech started slurring and i ran into the med. shelfs. i knew instantly that i was about to have one. when i have my episodes i always just want to lay down!i become restless and cant sit still. this is new and very scarey for me. but i am thankfull that i nw know what is going on. does it sound like i have been diagnosed right? thanks for listening about my hemiplegic migraines and the things i go through with them.

-SAVANNA

[rach662]

i too suffer with hemiplegic migraines, please feel free to email any time. i also feel very alone with this until finding this website a  couple of weeks ago . no outside help or understanding. people on this forum have been excellent listeners.

[Pooky60]

I do not have any experience with hemiplegic migraines as a sufferer; however, I am regularly dealing with my husband and daughter.

My husband was originally diagnosed with seizure disorder at the age of about 10 years.  It wasn't until we had been married for about six months that he was rediagnosed with Familial Hemiplegic Migraines (FMH).  

My daughter was diagnosed at the age of 6 years after collapsing on the playground at school.  She has had several episodes over the past 9 years.  At the age of 10 she was in the hospital, and unconscious for 65 hours of that.  When she came out of it, she had to re-learn just about everything.  She experiences hemispherice numbness, blindness, loss of speech, and loss of memory.  During and sometimes for days after, she is unable to "seek" words.  Her brain will just not allow her to come up with words for things that she knows.  

She is now in her second year of high school...started in August.  Since school started on 8-14, she has missed 16 days of school and been to the ER twice.  She takes a blood pressure med every morning to help with controlling her migraines, and also takes 250 mg of Topomax (topamax) daily (100 mg in a.m. & 150 mg p.m.).  I would like her to have a high school experience that is close to normal; however, the school seems to be opposed to that.  They don't understand why she would need any sort of "real" accommodation for a headache.  I have been fighting the IEP/504 plan stuff for years.  We home schooled for five years, during which she had a fairly normal life because we could deal with the migraine and go on.  She is having difficulty now due to the expectations of an ignorant society.  Even when provided with information and documentation, they don't review it.  I will say that this year she has some excellent teachers...it is more a chunk of the administration that just can't seem to get it.

My husband has many of the same symptoms; however, he doesn't seem to have them as severely or as long.  

I started my own company so that I could always be available for my family.  While my husband and oldest daughter have FHM, my youngest only has "uncomplicated" migraines right now.  They tell me that there is a 50/50 chance that she will develop them also, but for now she is in the "pink."  I have not personally experienced FHM, but I have lived intimately with them for 17 years.  I have watched what they can do to my husband and best friend, and my baby girl.  I look at her and know that she has been robbed of a big chunk of her life.  It is rare for her to go through a single day "migraine free."  She usually goes to school with at least pain level 3, and won't go to the school nurse until pain level 7.  Because she is afraid of "rebound" migraines, she will often avoid medication until pain level 5.  This has been her life.  I don't think she would know what to do with a pain-free day.  She has been seeing a neurologist throughout all of this.  She is tested till she is blue-in-the-face.  

I have seen the not-so-bad side, and I have seen the nightmare of hemiplegic migraine.  If there is anything you wish to ask, I will be completely honest about my family's experiences.  I am a fighter, and I am trying to teach my children to fight.  I believe that knowledge is power and that with knowledge they will be better prepared to fight.  When my oldest is ready to give it all up, I remind her that she has to look for the humor in her situation and be able to laugh at it...otherwise it will eat her alive.  So, from time to time, she and I laugh about some of the things she has said during an episode.  It is up to her to initiate the joking.  

Now that I have probably given you more than you want to know right now, I will close with simply stating that I am available if you would like to talk.

Suz

[toadaleh]

I've been diagnosed with complex migraine disorder (a combination of hemiplegic and Bickerstaff's migraines).  To be honest, I've had great support from friends and family, but as to medication, I've take amatrypteline as a profelaxis and tramadol and almagram when I have an attack.  
I've had migraines since I was a teenager, but in my late thirties, this is not how I saw my life panning out.  I have to use a cane because my balance is shot, I can't drive more than about half an hour, and my life has to be planned around the possibility of an attack.  
My best advice is to ensure you have a good doctor, explain to those who need to know, what your condition is and what you need, and most importantly - listen to your own body and learn your triggers.

Em

[Karon76]

I wish you were not experience these migraines.

I began having issues in January of 2008 (had only experience a migraine once in my life) and every time I would feel exhausted, then without warning or delay there would be a pain shooting from my head down the left side of my body that left me unable to do anything for 24 hours and occasionally 48 hours with Dave getting me to bed and the bathroom.

I went to my doctor and to a neurologist with everyone running tests only to say "you are in very good health for 52 but we don't see anything that would cause these and we don't believe they are TIA's". I actually had the neurologist joke about it saying it could be epileptic seizures, stroke, other type of seizure or it could all be in my head.  Well, (we called them seizures for a long time) the next time I went back I took Dave with me for the neurologist to tell his story of what he sees, what he has to do, etc.  Same joking comments; however, I ended up having a seizure in his office, taken to the hospital by ambulance, tests ran for 3 days, and then, it was suggested that I go get counseling to see if there was something from my past causing me issues.

Dave asked if I would go see the new doctor he was going to and I went.  I was only in her office for about 5 minutes and she said - you have had fibromylgia (fibromyalgia) and menopause for 20 years and you have this pain that occurs, stops you in your tracks, and scares the both of you - you have hemiplegic migraines.  She stated that the pain down the left side was her clue - the pain hurts so bad that I cannot speak or move and when I have tried it hurt beyond description.

She put me on Gabapentin 600 mg  with the ability over time to take up to 4 tablets each night to try to control these migraines (monsters that rob you of a normal life).  That was in August and it seemed to work until December 1st - out of the blue - the pain returns with a vengeance - my medication was changed to Divalproex SOD 500mg twice a day, but with the stress of my job it was not able to subdue the pain.

On December 10th, I had the worst headache and pains, sitting in a new neurologist office trying to explain what is going on and answering questions.  On December 18th, I was put through a sleep study and on short term disability.  Now I take the Divalproex SOD 500mg twice a day with the Gabapentine 600 mg (1 tablet) at night an hour before going to bed.  It is January 8th, yesterday was the first day in 38 days that I did not have a headache.  I still have other issues but at least I could read, do some paper work and be on the computer yesterday. No one should lose most of their daily functions for 38 days over these type of migraines.

I now experience issues with nausea, dizziness, pains, numbness, a section of my scalp crawls, my right eye has pain in or around it some days,  the one spot in my neck on the left side hurts more often than not, and some days just moving is more of a challenge than I want to undertake.  I am an active individual with a lot of life left in me and who has 3 beautiful grandchildren.  

I have been making phones calls trying to speak with doctors to find a doctor (to work with my family doctor) who will listen to the list of issues I am experiencing - tell me their thoughts.  If they say it is hemiplegic migraines, my next question is do you have patients that you have or presently are treating?  I don't want someone who has read about them - there is not an agreed upon treatment yet.  What I have been told is that these migraines cannot be treated with medication used for other migraines, they can and will cause strokes, and if left untreated for the long term - can cause death.  

I am waiting on a call back from a doctor that is 2 hours away and a teaching doctor.  I can hope!  I am also going to go to a ophthalmologist to rule out other possible issues.

I am not going to stop researching this illness until I can find someone who can assist me get my life back.  I have been home bound since the 16th of December - driving is a risk.  I do go when Dave can take me as he knows what is going, when I stumble that I am having issues and holds on to me, etc.  We go to the movies when my headaches are a 4 or less - I can usually manage this, if not we leave. I barely got through my favorite holiday season because the pain, nausea, dizziness, balance, and just feeling lousy.

I pray for all of us that within this new year, we will find answers of how this illness can be treated and with fewer trips to the hospital.  I, also, pray that our spouses, partners, family members get to have their loved one back and return to a normal or more normal life.  

I also hope that people will learn that because you don't understand someone's pain that it still exists and is real.  Sometimes I wish when there is someone giving me that look of disbelief that I could touch there arm or hand for just a minute for them to feel what I am feeling.  I don't wish them to suffer from this - I don't dislike anyone that much - but just having compassion would be appreciated.

Try to have a good day.

Karon

[rose2491]

i am 24 years and i have just found out that i suffer from hemiplegic migraines.  the first time i ever had 1 was when i was 23 and i thought i was having a stroke and i went into a coma.  i am so terrified that i will never wake up from one if i it happens again.  i have the pains in my head but i only get the acute attack every couple of weeks.  i though i was alone with this until i saw this page.  they have put me on topamax 25mg but they are goign to keep putting the dosage up until i reach 200mg.  does anyone 1 feel that doctors don't know enough about this disorder and more research should actually be done?

[kstina1995]

My name is Kristina. I am 14 years old. In November 2007, when i was 12 years old, i had my first episode. It felt like my left arm and leg muscles were drawing up, but they weren't. When this feeling stopped, about 15 minutes later, the whole left side of my body was numb and tingly. It felt like half of my body was asleep. Then i got an excruciating migraine in the right half of my brain. My speech was slurred, i had no facial expressions, and I walked with a limp. At that time, my mom and grandma thought that i was having a stroke. I didn't know what to think because i was so scared. We went to the hospital that day. I was in the hospital room for almost 3 hours before a doctor saw me. He then released me because my symptoms were all gone. We went home and I slept for almost 4 hours. When i woke up from my nap, i felt completely fine. Like nothing had ever happened. I had another episode about a week later.  My mom took me to see a neurologist, and he first diagnosed me with minor epileptic seizures. We believed this diagnosis for almost 3 months. During this time, i had 4 or 5 episodes.  The next episode that i had lasted almost 24 hours, when the others only lasted 3 or 4 hours.  My mom took me to a hospital 3 hours away.  My neurologist ran many tests on me, including MRIs, CT scans, EEGs, Blood tests, and genetics tests. I spent the night in the hospital that night. The next morning, the doctors diagnosed me with HEMIPLEGIC MIGRAINES. They put me on verapamil 120mg. Since then, I have had about 15 migraines. None of which have put me into a coma.

I have also had another version of these migraines. These start with floaters in the eyes. If you don't know what floaters are, they are spots that you see, but they aren't really there. Floaters kinda look like the spots you see when you look at something bright and then look at something dark right after.  Then, after the floaters, i get a really bad migraine on the right half of my brain.  Sometimes i get numbness and tingling in the left half of my body, sometimes i don't. There have also been some cases when i have had the migraine on the left side of my brain and the numbness on the right side of my body.  
My neurologist still doesn't know what causes these migraines.  He thinks it could be from stress, too much caffeine, not enough sleep, or injury to my head. My hemiplegic migraines aren't inherited, because nobody else in any part of my family have these migraines. I am in the ninth grade, and my school doesn't believe that i have this disease because it is so rare. I have missed 3 days of school this year because of my migraines, and 8 or 9 days last year. If i miss any more than 9 days in one semester, they will kick me out of school. I am a straight A student, and the threats of them kicking me out of school is putting more stress on me.
To anybody who suffers from these Hemiplegic migraines, you are not alone. I know it might feel like it at first because there are not many people diagnosed with this disease. I thought i was the odd one out until i found this website. Now i kinda feel normal again. =]

--Kristina--