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hemiplegic migraines

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Posted 3/20/2011 9:44 PM (GMT 0)
sorry if this has already been posted, but i'm new to this group - Hi

 

have been diagnosed with hemiplegic migraines after suffering one 2 weeks ago.  have been placed on meds with my doc here in the uk, but really cant find out much about the whole condition - can anyone help please?

 

also, how long do symptoms nomrally last?  had completed left side weakness and am still unable to use my left arm and my balance is still not right.

 

thanks for any help you guys can provide

Posted 3/23/2011 10:33 AM (GMT 0)
Hi there,

It has been sometime since I have been on this forum but I saw you post today and just had to respond to you. I am sorry to hear that you have been diagnosed with hemiplegic migraine.

I too have hemiplegic migraine, I was diagnosed at the age of 7 and I am now 34, and I'm from the UK. However, I have been a chronic suffer for over 13 years now.

What you need to realise is that everyone is different and all I can go by is my own experiences. Like I said I was diagnosed at the age of 7 after several severe episodes and the doctors had no idea at first with what they were dealing with and my mum literally remembers them being surrounded by textbooks trying to match my symptoms with a diagnosis.

Anyway when things settled down I would have an attack every 4 to 6 weeks lasting a couple of days. However, as I have become older my attacks were every 6 to 8 weeks but lasted up to 12 days. I was put on preventative meds at the age of 14 and went through virtually every one with several being tried more than once with no true benefit.

I am currently taking 3600mg Gabapentin a day, 5mg Flunarazine a day and my latest medication is Memantine 20mg a day. Although my illness isn't completely controlled by these medications it has been shown that they are all doing a little bit. For example, the Gabapentin is helping to control my hemiplegic aura (like you my left side is affected), Flunarazine has been seen to reduce severity to some degree and Memantine was only started in October last year so waiting to see what this will do but it has helped with my level of concentration and I my head feels less "fuzzy" if you know what I mean?!

Despite all of these meds none of them touch my pain. I have not had one pain free day in over 13 years despite other treatments being tried as a hospital inpatient.

My most recent admission was 4 weeks ago due to suffering a severe hemiplegic migraine and I was in hospital for 12 days. I was completely hemiplegic for 5 days before I started seeing a mild improvement and gradually over the following 7 days it started to resolve but it always takes my arm longer to recover.

Symptoms of hemiplegic migraine include:

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

Photophobia (hypersensitivity to light) and/or phonophobia (hypersensitivity to noise)

I don't want to give you information overload (although I have probably done that already!) so if you have any questions then please feel free to ask.

Best wishes,

Kala UK

Posted 3/23/2011 7:18 PM (GMT 0)
Kala - how awful for you. My mum was admitted to hospital a couple of weeks ago - they thought she'd had a stroke but she had exactly the same symptoms as you. She ended up in a near coma - one doctor even said she was unlikely to improve - her eyes were bulging and she couldn't communicate. Two doses of diamorphine did nothing.

Half an hour later she was asking for a commode!!! Next day she was saying 'have you brought my glasses/hearingaid/newspaper......'

Docs still not sure whether this was a migraine or neck arthritis, which can show the same symptoms. CT scan was clear.

Best of luck to you both.
Posted 4/2/2011 12:07 PM (GMT 0)
Hi,

Im Lollipop im 13 and live in England. I also suffer from Hemiplegic Migraines. They first began on the 27th of December 2010. I lost all sensation and strength from my fingers to my shoulder right in my right arm. The strength has returned but i lose it after each Migraine but the sensation has never returned so its as if its nolonger there. After another Migraine on 24th of January 2011I lost all sensatoin and strength in my right leg and could not walk. As befor the strength returns but a lot slower iv spent the last 6 weeks unable to walk. I still have no feeling in my arm or leg and cannot walk, i have limited movement in both my arm and leg.Does anyone know anything about the lack of sensation lasting for this long?

Im currently taking Pizotifen twice a day and Sumatriptan when I have a migraine which seems to be working I have not had a migraine for almost two weeks wooohooo lol :)

Thanks

Lollipop
Posted 8/28/2011 1:31 AM (GMT 0)
Oh My Gosh, you guys have some serious symptoms.

As for me my hemiplegic migraines are always different. Sometimes I have terrible pain and sometimes they are pain free.

I have balance and speech problems. I don't so much get a fever but my temp swings up and down in a matter of minutes. I can go from 96.2 to 99.4 and back within 20 minutes.

I always read that it is one sided weakness but that isn't always so for me. sometimes it's one sided, sometimes it's both legs or both arms, or sometimes just one arm. My arms are always the last to regain strength. I don't know why they are so slow to recover. My legs tend to bounce back pretty quick.

I've never had to be hospitalized and I can't even imagine how bad they have to be to get to that point. I was in the ER and rated 10 out of 10 by the doctor on the how bad is it scale and I still went home that day. So I can't imagine how much worse it can be than that.

My short term memory stinks and my reasoning skills have flown the coop.

Every day is a new day that I never know what it will bring. Some days are great and some days end exhausted in bed. I've been known to sleep entire weekends away. My brain just has a hard time waking up.

Good luck to you all!
Posted 9/17/2011 5:52 PM (GMT 0)
A quick hello to all U HM sufferers. Especially lollipop. It is so sad 2 c u hav them so young. I hope life gets better 4 U asap. I had aura M from my 20's & HM the last 5 yrs. It's sad.. but good 2 read about others with HM. It all helps :)
Like u all, I jst want 2 b well & normal & be able 2 go out without the worry of 1 coming on. Mine last 2 - 3 wks if I mostly rest.. If I don't rest & push thru them I get another. It's 2 hard 4 me 2 rest. I find it hard 2 jst rest! I got a bad 1 mon & it's sat & still exhausted. Pain has subsided. Some tingles in my leg hav stayed there since the 1st one (5yrs ago) Was diagnosed at the hospital after a CT scan ruled out stroke. Was told they r related 2 strokes & not 2 overdo things! Well 2 me that sucks! I'd like 2 b fitter. How do any of us get fit?? Mine overlap one another more often than not & am rarely without one completely. It's so good 2 write in here knowing others kno what I'm on about. I've found they can be so different in different people & I often get different signs b4 I get 1.
Wld any1 like 2 mention their warning signs & how long b4 1 comes on?? It cld help some of us. Cheers! .. To a better life .. Pls reply.
Posted 9/28/2011 7:49 AM (GMT 0)
Hi Everyone,

I too have Hemiplegic Migraine. It's difficult to find others who have this disease, since it's rare. It's always difficult to find good, accurate information.

Did you hear that there's a group forming an international nonprofit and website just for HM? They're called Hemiplegic Migraine Foundation (HMF). Their website is HemiplegicMigraine.org. I think it's a great idea.

Warning signs for me:
I starting feeling disconnected. I can sometimes say "I feel weird" or "funny" and then very quickly I fall and start losing consciousness. It's so different than my migraines where the aura starts first and I have plenty of warning. With HM, I'm pretty helpless.

Wishing you a HM-free day!
Posted 10/6/2011 9:41 PM (GMT 0)
Hi All

I was diagnosed today with hemiplegic migraines by a NHS neurologist. I've been having headaches 24/7 for about 18 months. The neurologist told me that I've probably been suffering from them all my life but something that happened 18 months ago shifted my serotonin levels dramatically which is why the headaches started. 3 weeks ago I had a suspected stroke and after numerous tests including an MRI scan it was all clear. I've had 7 episodes in the last 3 weeks, and after my diagnosis today I've started to do some proper research. My fear is that in the past 18 months things have just been getting worse. I was on propanolol for a year up to 200mg a day but after it became ineffective I'm now on Nortrityne 50mg. Is there anything I can do to prevent more attacks. Is it wise to let people know around me what could happen?
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