Hemiplegic Migraine

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Hemiplegic Migraine

Post by Tee on Tue Apr 19, 2011 7:22 am

Welcome to the hemiplegic migraine thread.

This is a very rare form of migraine that is considered to be one of the more severe types of migraine It has been linked to a genetic abnormality and it is being more readily diagnosed by the medical profession in the UK. Symptoms include temporary paralysis down one side of the body, which can last for several days.

It can be accompanied by other symptoms, such as ataxia, coma, epileptic seizures, vertigo or difficulty walking, double vision or blindness, hearing impairment, numbness around the mouth leading to trouble speaking or swallowing. These symptoms are often associated with a severe one-sided headache.

This form of migraine may be confused with a stroke, but the effects are usually fully reversible.

There are two types of hemiplegic migraine:

1.Familial hemiplegic migraine is where migraine attacks occur in two or more people in the same family and every individual experiences weakness on one side of the body as a symptom with their migraine. In about 50% of these families, a chromosome defect may be found on chromosome 19 or on chromosome 1 and involves abnormal calcium channels.

2.Sporadic hemiplegic migraine is where someone experiences all the physical symptoms of familial hemiplegic migraine but doesn't have a known connection within their family. The cause of this type of hemiplegic migraine is unknown; some are due to new or so called 'sporadic' gene mutations.


Last edited by Tee on Sun Jun 05, 2011 8:28 am; edited 2 times in total
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Re: Hemiplegic Migraine

Post by Tee on Tue Apr 19, 2011 7:55 am

On a personal note, my chronic migraines have hemiplegic undertones, which means I have very bad numbness down my left side during and some times after an attack.

However, I have had 3 massive migraine attacks (which required hospitalisation) where a full blown hemiplegic migraine kicked in. With these I had stroke like symptoms, I was completely numb on the left, lost words and could not think straight for weeks after.

Hemiplegic migraine, is very scary. And I am thankful that I do not have full blown attacks like these all the time.

I know Kala does and I am sure she will share her experiences with anyone who has questions.
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Re: Hemiplegic Migraine

Post by Kala on Sat Apr 30, 2011 9:07 pm

As Tee has said I suffer from chronic hemiplegic migraine. Just to provide information here is a list of symptoms:

- Episodes of prolonged aura (up to several days or weeks)

- Hemiplegia (paralysis on one side of the body)

- Fever

- Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)

- Impaired consciousness ranging from confusion to profound coma

- Headache, which may begin before the hemiplegia or be absent

- Ataxia (defective muscle coordination)

- The onset of the hemiplegia may be sudden and simulate a stroke

- Nausea and/or vomiting

- Dizziness and/or vertigo

- Phonophobia (hypersensitivity to sound) and/or photophobia (hypersensitivity to light) and/or osmophobia (hypersensitivity to smells)

When I suffer a full blown hemiplegic migraine I experience all of these symptoms (although rarely vomiting and photophobia) and it can take 12 days to recover although full recovery can take longer. Thankfully though my aura symptoms are pretty well managed by my preventative medications.

Being a chronic sufferer I have pain 24/7 and some degree of hemiplegia with varying degrees on a daily basis. I am constantly phonophobic and osmophobic, and have episodes of dizziness and vertigo on a daily basis. Over the past couple of days I am experiencing an increase in severity of my symptoms, which I think may mean that without my preventative meds I would have had a full blown attack.
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Re: Hemiplegic Migraine

Post by Tee on Sat Apr 30, 2011 9:50 pm

Thanks for that Kala - Maybe it would help to list the preventatives you are on?
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Re: Hemiplegic Migraine

Post by Kala on Sat Apr 30, 2011 10:03 pm

Sure Tee, the preventatives that I currently take are:

- Gabapentin 3,600mg a day (split into 900mg in the morning, 1,200mg early afternoon, and 1,500mg at night). I've been taking Gabapentin since February 2008 with several changes in dosage.
- Flunarazine 5mg in the evening. I've been taking Flunarazine since July 2005 again with numerous changes in dosage.
- Memantine 20mg a day (10mg in the morning and 10mg in the evening). This is my most recent medication, which was start in October 2010, I'm on the top dose of this medication and have been since December 2010.

I also take Amitriptyline 45mg and Melatonin 15mg in the evening solely to help me sleep. Amitriptyline was taken up to 90mg (the aim was 100mg but due to side-effects I couldn't tolerate any higher dose) to see if this had any impact on my chronic pain but unfortunately it didn't so the dose was reduced to a level that aided sleep without leaving me feeling too "doped up."

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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 04, 2011 7:53 am

I have hemiplegic migraines and am really pleased to hear (well not 'pleased') but comforted to hear that other peoples symptoms last as long as mine do. Does anyone have any mental health type symptoms as a symptom of the migraine not as a result of the way it makes you feel (does that make sense?) As part of a phase i get paranoid delusions, panic attacks and suicidal thoughts. I am now on amitriptyline 80 mg and fluoxetine 20mg.
A list of my fleeting and longer standing symptoms
Head ache that doesn't hurt ( explaining that one is impossible)
a balloon which inflates in my left side of my head and then deflates at varying intensity makes my body feel like a wave has washed over me.
occular:
flashing lights
black blobs that grow and shrink
black and white vision
outlines of objects still visible after looking at them and turning away

Motor :
left sided weakness in face arm and leg
speech problems ( loss of words, mixed up letters,)
tremor
spasms
face cramp (muscles on left side tense right up and cant be moved)
unstoppable rocking
coordination problems
collapse

weird stuff:
de ja vu
delusions
paranoia
confusion
inability to make any choice
1 eye feels like it is several inches in front of the other
feeling like something is crawling on my leg

Im sure there are more but some are just to weird to put into words! xx
Scream

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Re: Hemiplegic Migraine

Post by whitzendJane on Sat Jun 04, 2011 8:17 am

No not weird it all makes sense and are sadly symptomatic of your illness.
I can get really angry when the pain gets bad and depression can suddenly come and go etc as you have described.
SAdly it all sounds terribly familiar and I know the others on the forum will relate to what you are describing too.
I am unsure about the rocking but someone else may correct me there...I have put a link to OUCH the cluster headache people on your 'member stories' thread..it may be helpful to look at that too for clarification.

Jane
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Re: Hemiplegic Migraine

Post by Sheena Hulston on Sat Jun 04, 2011 8:41 am

Hey its funny your "inflating" I call "my contraction" and I find it quite comforting now funnily enough, its there nearly all the time but bad at night when I lie down, thats the thing I hate doing most putting my head on a pillow at night.
I get depressed I think we all do and some of the pills have given me mad mood swings. But most of the other symptoms I get except the rocking! maybe we see it as something else as well?
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Re: Hemiplegic Migraine

Post by Tee on Sat Jun 04, 2011 9:36 am

Hi there

You are not alone and certainly not mad lol - I get most of those symptoms and TOTALLY understand a headache that does not hurt - It was so nice to read that Smile It is hard sometimes to explain how crap I feel with a migraine when I do not have a headache. But the visual and physical aura symptoms are so debilitating. Like today Sad

To make you feel a little better here are my symptoms:
Head ache that doesn't hurt (although I do get them if I do more and they can become the banging ones, also get ice pick ones)
Swelling in my left cheek
Flashing lights, snow, floaters, vasaline lens eyes
Left sided numbness and weakness in face, arm, hand and leg
Speech problems (loss of words)
Tremor / inner shakes
Alice in Wonderland Syndrome (have a look at that it might explain your eyes feels different sizes)
Getting short tempered

I have these 24/7 it is just the severity that changes and the more I do the worse they get.

I do not get the mental stuff with the normal daily HM migraines, but I did with the 3 big ones, they were like having a full stroke and it took me months to get my thinking back. ie confusion and inability to make any choice. (I once stood for 15 mins looking at the bread in Tesco's as I could not decide which bread we should have - it is bread for god sake and we always have the same one - funny now - but not then - my 5 yrs old came to the rescue!)

Thankfully I do not get suicide thoughts - I am just too damn stubborn for that lol - But saying that I did when on Topamax - so do check the side effects of your meds and make sure someone close to you knows that that crosses your mind once in a while. Its not a nice place to be Sad

Sorry I am in ramble mode - if that does not make sense - sorry - been a rough day.

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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 04, 2011 8:10 pm

I am so comforted to here all your stories. It has been a struggle getting friends and family to understand that it is an ongoing disorder that can continue way past days and weeks. I think ,most peoples perception of a migraine is that it lasts a few hours, you have a bad headache then it goes away. When they roll on and on for weeks on end people struggle to understand that.
I must admit I get quite frustrated at people who say 'ive got a migraine' where actually they just have a bad headache or a hangover. I think it somehow dilutes the seriousness of the actual migraine attacks people have to live with. oops, ranting again.... one final stamp of my right foot and i shall return to happiness and love for all .............x

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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 04, 2011 8:47 pm

The rocking i think i didn't describe very well. Its more of muscle control problem, so if i am sat up straight using my stomach muscles, they don't hold me still so I move, same with my neck, if its not relaxed the muscles don't stay still and it moves back and forward. I find this really embarrassing. xx

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Re: Hemiplegic Migraine

Post by whitzendJane on Sun Jun 05, 2011 6:20 am

You've described it well I understand better now..sounds different to the way a C/headache sufferer would rock and be agitated with pain.

Yes the lack of understanding about how debilitating CM/HM et al is really annoying sometimes..I still feel frustrated 5 years on..however I try and remind myself that I myself was pretty disbelieving that I could have a permanent migraine attack..so I try to educatate but still get cross when I get the nodding dog looks.

You can see they are thinking..'Yeah right..it can't be that bad, or no one has a 5 year headache etc'...OK Hands up it really drives me nuts when people do that. LMAO

I can feel my tolerance going out of the window just thinking about some of the responses I have had...deep breathes..and calm thoughts...
JAne
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Re: Hemiplegic Migraine

Post by Tee on Sun Jun 05, 2011 7:43 am

Totally agree here ladies - I have lost count of the times I have had that conversation - I normally give up and walk away. BUT I am planning on putting my marketing head back on and writing something for migraine awareness week so we can all send out a press release to our local press Smile


Last edited by Tee on Sun Jun 05, 2011 8:15 am; edited 1 time in total
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Re: Hemiplegic Migraine

Post by onandoffagain on Sun Jun 05, 2011 7:52 am

Great idea! love it x

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Re: Hemiplegic Migraine

Post by whitzendJane on Sun Jun 05, 2011 8:38 am

That's my girl!

Great idea..I so wished I had thought of it..but that's why you will always be my friend...

well that and the fact that you simple 'know too much about me'..

Jane
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Re: Hemiplegic Migraine

Post by Tee on Sun Jun 05, 2011 8:55 am

ROFLMAO - Oh the power of knowledge Thank you
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visual aura is there a proper title??

Post by onandoffagain on Mon Jun 13, 2011 7:11 am

I am abou to try and dedcribe a visual aura which is the noticable precurser to my HM and i was onwdering if there is a proper name for it.
when i look from side to side the picture is jerky, so my brain isnt processing all of the image and jining it together smoothly as it should so its like a series of stills rather than a video.
I also see the after picture, example i look at a cabinet then lok to the right and see a colured outline of the cabinet on the wall.
APologies major rambling a can feel my brain becoming drowned in toffee and my fingers no longer do what i tell them
I hope i will read this in a few days and appreiate the fact that I recorded this episode as it started Bad day Tumbleweed

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Re: Hemiplegic Migraine

Post by whitzendJane on Mon Jun 13, 2011 8:01 am

Yeah I get that too...I would love to know what it was called..I call the 'outline' image thingy..negative shadowing..that's just me tho.

the jerky thing too..you have the distinct feeling you moved to quickly and left your brain 6inches behind you and it just catches up and you move the other way..and it's like 'Whoa!' what for the grey matter over here !!!!

ANyone got any ideas what that's about...I have this mental image of my head being a biscuit tin with my brain slopping about loosely inside some days.

..but I am rather odd.. Scream Freak
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Re: Hemiplegic Migraine

Post by Tee on Mon Jun 13, 2011 8:10 am

Oh hunny - BIG HUGS

I am so pleased you have managed to record this and when you read it back you will see why - but please leave it as it is Smile

I hope it is not going to turn into a big one for you Sad

____________________________________________________________________________________________________

To answer your question - what you are describing sounds like Diplopia.

This is where you see two images of a single object.

There are two types: monocular and binocular. Monocular diplopia is double vision in only one eye. The double vision continues in the affected eye even when the other eye is covered. The doubling does not go away when you look in different directions... Binocular diplopia is double vision related to a misalignment of the eyes. The double vision stops if either eye is covered

I have added a list of types of aura under useful info and I will start to add descriptions tomorrow- feeling a little fragile right now.

http://migrainetalk.forumotion.co.uk/t250-types-of-aura

There will be more than most will think and I am not even sure I have them all listed!


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Re: Hemiplegic Migraine

Post by onandoffagain on Tue Jun 14, 2011 6:57 am

Hi peeps, wow just read my post. Im shocked at my language skills. Anyway, weird thing is no biggy! (but) I usually start visual aura 2 - 3 days before the collapse. I have had major after images (I like the negative shadowing description Jane) all day and my head is wonky (one side sticks out further than the other) and mild hemiplegis, but nothing to stop me walking or talking (yet)
I feel like im waiting for a thunderstorm, but lets hope it avoids my head and just goes round the other houses!! Arrow

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Re: Hemiplegic Migraine

Post by onandoffagain on Wed Jun 15, 2011 4:21 am

well, I spoke to soon. In a way I am pleased as I have followed exactly the same pattern as previously. Today I got the 'spider on the leg but nothing there' an several hours later here I am with 2 crutches as my left leg is so numb and weak I cant weight bear. Weird thing is, I feel very bright and cheery, no pain, no tiredness, and i didnt faint which i pleased about. Still I may be counting my chickens a little early, maybe a feel calm because I know the pattern now and have accepted it as a part of my life.
Hop[e every one else is having a happy and calm day xx

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Re: Hemiplegic Migraine

Post by onandoffagain on Thu Jun 16, 2011 7:01 am

definitely spoke to soon. 10 minutes after that post I was down!

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Re: Hemiplegic Migraine

Post by Tee on Thu Jun 16, 2011 9:06 am

hugs hug3

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Re: Hemiplegic Migraine

Post by onandoffagain on Sat Jun 18, 2011 4:11 am

I am feeling a bit like the odd one out at the moment, the least problematic symptom of mine is the headpain. Its weird, I can feel that I should have a massive headache, I can feel the pressure but not feel any pain. Maybe its the amyltriptilin. I feel guilty because all of the people on this forum seem to have terrible pain, but its my Aura that causes my problems and the unpredictability of it. I try to work full time (VERY full time) with 2 kids 6 + 8 one with ASD and it just mucks everything up all the time. I hope I dont get pain like other people, it must be unbearable xx

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Re: Hemiplegic Migraine

Post by Sheena Hulston on Sat Jun 18, 2011 4:34 am

Some of my worse days are just the aura days !!! the days when I just get pressure and feel "distant" Dont wish for the pain girl if I get knocked out I rock in bed and then go off into almost a coma state but I am out of it, sort of. But Aura days like today I feel useless,
need to do so much but just wander about!!
Whats worse? dont know. see with HM we get both so we know how you feel babes x x x
I have tried to explain to Dr S that I know when I should have a massive migraine but hes not sure what I mean!! affraid So maybe I should take you along with me to explain it for me Razz
Sheena x x x
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