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Posted 6/27/2008 2:11 AM (GMT 0)
New to site.

Does anyone treat their hemiplegic migraines at home?  If so, what meds work?

Mine always require trip to ER or hospital admission.

They scare me so bad, at home mine usually make me pass out and I am out for a day or two (totally unconcious) not just sleepy.

yea had mris and cat scans all normal.

 

Posted 6/27/2008 2:35 AM (GMT 0)
And, last week was the most recent hospitalized episode and all I can say is that little stick they use to see if you are really numb or not left a huge gash on my right leg. When will doctors who don't know a darn thing about hemplegic migraine stop treating it? teh neurologist who saw me for the consult said he had never seen a patient with FHM. He took fabulous care of me, but I could really have done without the whole neuro workout catscan, eeg, etc. after I already told him I was having an aura from hemiplegic migraine and to read about it if he didn't know how to treat it.

Sorry I am just burnt on the whole issue, hate having them for my whole life, hate not having successful treatment at home, hate the way I can't think even a week later and still feel wobbly. Tehn have to tell the doctor about all the symptoms and he just says should we try another preventive medication they are getting more regular now.

Without migraines my life is bliss.
Posted 6/28/2008 12:43 PM (GMT 0)
Sanquine,
I can relate to ER doctors knowing nothing.
I probably should have gone to the ER last week but did not go, because I just was not up to the whole dreadful routine of poking and proding.
My daughter made a good suggestion and I am going with it.
I am now carrying a printout of a description of Hemiplegic Migraine along with my med list.
I probably had a tia last week, luckily not a major stroke, but still I should have gone.
Posted 7/9/2008 6:25 PM (GMT 0)
Excellent suggestion. Thank you. I used to have a medic alert bracelet but feel it stigmatizes you at work.
Posted 7/11/2008 7:11 PM (GMT 0)

I have hemiplegic migraines as well.  They started suddenly two years ago and until I saw my current neurologist I was having daily attacks of right-sided paralysis.  They would only last about 10-15 minutes, but it was still very disturbing.  I was originally diagnosed with having TIA's and after a full workup they began to suspect hemiplegic migraines.  I was very doubtful because I hadn't (and still have not) had a headache-migraine.  I saw a neurologist who specializes in migraines and she started me on verapamil.  It has done wonders.  I had to go back to her last week because my episodes were coming back daily, but not full paralysis.  Just some numbness in my cheek and weakness in my right arm and leg.  It was not enough to even disturb my activities, but I didn't want it to progressively get worse.  She doubled my dose and started me on magnesium.  It seems to be helping.

My advice would be to seek a specialist who understands this rare form of migraines asap.  My doc has been great and is very informed on all forms of migraines.  As far as home treatment, I don't know.  Magnesium can be purchased OTC so it wouldn't hurt to try that I suppose.  I take 500mg daily.  I also take one 325mg of aspirin daily.

Good luck, I know how frustrating it can be!

Posted 7/13/2008 7:04 PM (GMT 0)
I have yet to be diagnosed with anything but complicated migraines, however my numbness (It's like the entire side of my body goes to sleep) is so bad it's painful. If I try moving once it hits my leg I fall down unless I get someone to help me move. The only way I can move my arm is to grab it with the working hand and physically flop my arm where I want it.

My old doc prescribed me Imitrex, however I can't take it. When I do I feel pressure against the front of my throat, though I can breath thankfully.

The worst part about my migraines is for around an hour before and a day after I can't think straight. Once I was on the comp playing a text based MMORPG and could not think of the word come and instead typed the word what. I always feel like I'm in a fog and my mind can't get out of it.

I have only found one thing that remotely works, but not sure how safe it is. I bought Excedrin Migraine, and I take three of them and drink a cup of strong coffee. Thing is that's the only time I drink coffee. It prevents the pain, but the numbness has to take it's course. What I hate is when the numbness is on my left side my heartbeat feels weird to me, like it's fluttering. All my muscles feel like they're jumping and twitching. I finally got an MRI and it came back normal, go figure.
Posted 7/13/2008 11:33 PM (GMT 0)
I am so glad that I found this site. I am 28 yrs old and I have been having problems with numbness on the right side of my body. (for an entire year) My face somtimes twitches . And like everyone else has stated I have had a numerous amount of test done only to show nothing.  Just this passed Monday I was at work feeling completely fine then out of nowhere my entire right side felt heavy.  I thought to myself not again because 2months ago the samething happened I went to the ER and they said it was a TIA.  I also start feeling like I couldn't catch my breath.  I decided to make a trip to the ER again by the time I got there I couldn't stand on my own.  After the doctor reviewed my chart he said that he thinks I'm suffering from a hemplegic migraine.  The neuro dr that i am currently seeing had also mention this to me before.  But he said that he wanted to run some test on me to rule out some other things.  So since January I have had mri,mra,ct scan, heart doppler. you name i'm sure i've had it.  Anyway I go see the neuro dr tomorrow so i can tell him what the ER doctor thinks.   Since my epsode on Monday I have had a total of 4 in one week.  I am so tired of going through this.  I have 3 children and it scares them to see me in this condition.  My husbands tries to be strong but I know that he is also scared.  I have never known anyone else in my family to suffer from this so I guess i don't have FHM i must have SHM.  I am sorry to keep going on and on ...........
Posted 7/15/2008 9:53 AM (GMT 0)
oh I an so Relate

The migraines I get, sometimes the left side of my body goes NUMB// I get so confused...
and often loose my speech.. and vision

Yesterday I had another Migraine; but it didnt start with aura
like usual
but I had to go home from work

i took migraine advil, and tylenol.... had a cup of coffee

I was sorta ok
but laid down for an hour with ice apc on head
then i wnet to the store to see what else.. i could maybe try

i was in pain.. couldnt handle the light

i called my reflexologist to see about getting a future appointment with her
she actually sai d i'll come to you after i mentioned i wa shome with a migraine.



after the treatment the head ache was gone
but today

im sort of.. having trouble even typing

my left arm feels weird
but i have to go to work
i dont feel up to going
but cant really stay home either
Posted 7/20/2008 12:38 AM (GMT 0)

Hi Sanguine;

How did your neurologist diagnose you with Hemiplegic migraine?  Did you have genetic testing?  My daughter is 14 and the "episodes" started at 12 1/2.  She has had 4 pretty bad episodes that always start with numbness in arm/leg and then moves to speech, disoriented, clumsy, and then use to go into the headache stage and nausea/vomiting.  The whole episode looked like a stroke and we went to the ER the first two times.  Her neurologist told us to try excedrin at the onset and now she has no headache, just the symptoms above and then a day of "dull".  I am so scared for her and don't know what to do with high school starting; friends, etc.   Would love to talk to you :-) some more.

Worried mom in MN

Posted 10/21/2008 9:04 PM (GMT 0)

Dear Annipmn,

Just wanted to confer about hemiplegic migraines in teenagers. My daughter began 6 months ago with migraines that made her unable to walk for 2 - 3 days at a time. As she has 2 - 3 a week they just run into each other. She has missed on and off 4 months of school and hasn't been there at all in the last 5 weeks. Am worried about school work, friends, self esteem. She gets a blinding headache, legs and arms go numb, mouth and cheek numb, and finds speech and thinking difficult for a while. She sleeps it off but it's the legs that continue to cause problems for days, and she crawls around the house. She is on Epilim (anti epileptic drug) morning and evening and paracetemol for the pain as and when. We were lucky that our doctor was quick to recognise the condition fairly early on, got her an MRI, EEG, blood tests and a neurologist that himself has migraines but how do we get her out of the house and off to school. A wheelchair arrived for her this week, and school are looking into tutoring. Where has my beautiful daughter gone?

Badgers

Posted 9/13/2009 7:12 PM (GMT 0)
i am 16 n i have had my first hempapligic migraine since i was 12. i had one this jan which i still haven't recovered from still weak in left side and i suffer from a constant headache on the left side which got so bad i was hospitalized in july then in september i had a hemapligic migraine which started with shaking which went through my whole body including my head however i was fully contionus through it all  which ment i ended up in hospital for the 3rd time this year.i haven't been to school since june due the constant headache and now the paralysis, i can't walk bending my knee and i have to live down stairs. i am under so many doctors for this but no luck in preventing or helping the suituation i have had mri,ct.eeg scans and bloods which where are all clear.now i have found out i am suffering from depression is it any wonder? i barely leave the house

anyone else have paralysis that last months?

Posted 9/16/2009 11:43 AM (GMT 0)
My daughter is 15 years old.  She originally started with very bad shooting pains in her head and numbness in her face. 
Then she had where her eyes would roll around and she couldn't see.  Then it got where her whole left side would go numb.  Sometimes it affected her speech what she would stutter.  She also would pass out.

She was put on amitriptilyne for the migraines.  That helped some, but what really helped is when we found out she has an ovarian cyst (her prolactin was high also - which deals with the hormones).  The doctor put her on medicine for the cyst.  Now she's doing a lot better.  The doctor said in the future she wants her to get off the amitriptilyne. 

She does still have muscle weakness and pain throughout her body, along with back pain periodically.  That part we still don't have figured out.

Hopefully you will be finding out answers to help you soon.

God bless you.

Vickabee

Posted 9/17/2009 10:30 AM (GMT 0)
I suffer hemipelgic migraines and don't bother to go to hospital now, as my husband is able to help me at home. Innitially my family doctor insisted that I go to the ED for treatment, simply because as each attach looks like a stroke and could potentially lead to a stroke, in theory I ought to have a scan each time, but eventually conceded that I could assume the best and stay at home.

My migraines affect my left-hand side and I get total paralysis on this side, including in the face. My prevenative meds have made it a largely pain free process now, but I only need to go into the hospital if my throat is so bad that I can't breathe. I'm 100% dependant on my husband though, and without him I would need hospitalisation. From my experience, the scan is the only critical thing, and care is usually better administered at home. My hospital visits now are usually less that 2 hours, long enough to get in to Th Emergency department, get seen and scanned and leave again.

It's unspeakably horrible, but much better than suffering at the hands of nurses.

Posted 9/17/2009 2:11 PM (GMT 0)
When the days that you don't have hemiplegic migraines, do you have extreme muscle weakness and back pain? My daughter's hemiplegic migraines are better where she doesn't get numb on the left as often but her muscle weakness and aching has continued along with back pain. Yesterday was one of those days where it was extreme where her daddy had to carry her from the floor over to the recliner because of her weakness and back pain.

Thank you for any info you might have.

God bless you.

Vickabee
Posted 9/25/2009 10:13 AM (GMT 0)
Sorry for the delay in replying (I had a migraine!).

I do have muscle weakness, but no back pain (unless I have had a lumbar puncture recently). The medication I am on means I don't get much pain at all anymore.  I believe for it to be a Hemiplegic migraine it has to be affecting one side (Hemi=Half and Plegic=paralysis), I am not always totally paralysed on my left side, but too weak to lift my arm/leg. When they do my neuro-obs I can often feel things even where I am not able to move.

My 7 year old daughter also has them and she get extreme abdominal pain and muscle weakness (mainy in her legs). We're all different it seems. As Hemiplegic Migraines are usually related to a genetic condition, it's easier to see that patterns. I don't think my daughter would have been diagnosed so quickly, were it not for the genetic link to my condition. In an attack my poor husband has to carry me, so when it's my daughter it's far less of an issue!

With a good doctor things can be quite manageable, I'm in England , so not sure how that affects treatments, but I do get a lot of information and support, and that makes all the difference to being able to cope with it.

 

Posted 9/26/2009 7:15 AM (GMT 0)
Hi Vickabee and Lady Nebula!!! and everyone else with HM!!!!

I too have HM and had them for 3 years, i too get fully paralysed from my neck down to my feet ( can´t move at all ) but always on my right side.

i too have had numbness for on and on for the past 10 years, and i have a bunch of stroke like symptoms too. I have written much about them

in the other Topic here called " Hemiplegic Migraines "

Anyhow when i have the numbness or the paralysis i can feel when the doctors do the stick test so everything is normal in that way. Often i have

back and neck pain but that isn´t coming from my HM is really from my neck and back they are in bad condition with nerve damage and so on.....

I was wondering Vickabee if any kind of test is done, to rule out that your daughters pain and weakness not actually come from back or neck??

I have good medication for the auras that have helped me from having 3-5 attacks per week to now only 3-6 per month, this summer i actually had

a full month without any attack so....... i am grateful for that, there is much good medication out there for us with HM!!!

I also have the migraine headache many time a week ( without the aura ) and with that i have problems finding medication for , but with my great

neuro we are trying to find that too.

Hope you get some help soon and get some relife!!

P.s there is many neuros out there who has never seen a case of HM, so if you don´t have a real migraine specialist, you should have one!!

Hugs from Sweden wink

Posted 9/29/2009 3:10 AM (GMT 0)
EDITED, this is your second post spamming our users. Revisit forum rules or be banned--this is NOT allowed here.

Post Edited By Moderator (tysmyboo) : 9/28/2009 10:10:17 PM (GMT-6)

Posted 9/29/2009 3:56 AM (GMT 0)
Sweden

My daughter has had different tests, including a MRI done on her back and I think also the neck.

She has had back pain since she was little, and she has always had pain in her legs where she said it felt like her legs were being stretched.  The doctors have said it is growing pains in the past, but now she said a better way to describe the pain is that it feels like her nerves are being stretched.  Periodically now she is getting the numbness on the left side but the extreme weakness and back pain is a regular everyday thing.  She also has swelling in her hands and feet which the orthopedic pointed out but it wasn't arthritis.

The shooting pains in her head started a few months after one of her cleft palate surgeries (not meaning to put the two together but it was 4-6 months after that surgery).  The neuro wanted to put her on daily medicine but we didn't want to at that time.  Then it started a little while after that everyday and then where her left side went numb - sometimes her whole body would go numb. 

Her hand shakes or spasms up on the left side too sometimes.  A couple of people when she has had tests run mentioned that she should have an EMG because of the muscle weakness and spasms.  That's one test we haven't have done for her.  I hope I haven't rambled on.  Thank you for your input.

God bless you.

Vickabee

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