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Hemiplegic migraine

(16 Posts)
AhhhhABaby Sat 07-Mar-15 23:00:53

After beig admitted to hospital with what doctors thought was a stroke I have been diagnosed with hemiplegic migraines.

I need to wait a week before speaking to neurology so any information or experiences you have if this would be greatly appreciated.

In my late teens so as you can imagine I was terrified when I thought I was having a stroke.

3littlefrogs Sat 07-Mar-15 23:09:04

I used to have these from the age of about 13 to 20, then they gradually got better. Terrifying when they happen though. As well as being numb all the way down one side, I used to lose half my visual field and be completely unable to speak. They used to last anything up to 48 hours. Huge headache and flashing lights, then eventually lots of throwing up.sad
Identifying triggers is important and getting proper anti migraine medication.
Treatment is a lot better these days - you should be referred to a specialist clinic.
Sorry if this is too personal a question, but being on the pill is a really bad idea if you suffer from migraine.

AhhhhABaby Sat 07-Mar-15 23:22:40

Yeah I had left side numbness, tingling, left side only headache, blurred vision, slurred speech.

Can I ask how often I should expect this or is it a one off?

I have only been referred to neurology for treatment?

Not all too personal, I'm not on the pill so that's a relief xx

AhhhhABaby Sat 07-Mar-15 23:24:44

3littlefrogs this start on Monday so nearly a week ago and still got the headache and eyes lose focus occasionally still, is this normal for it to last this long?

3littlefrogs Sun 08-Mar-15 04:28:31

Sorry OP - I went to bed - just got up to have a cup of tea as I couldn't sleep.

I am not an expert, but that sounds a long time to me.

You need urgent referral to neurologist - maybe contact your GP to speed that up.

The other thing that comes to my mind is something called antiphospholipid syndrome/Hughes syndrome/sticky blood. this might not be on a neurologist's radar, but if you google Hughes syndrome you will find some information.

Hope you feel better soon.

flowers

wfrances Sun 08-Mar-15 14:46:58

i have these,
ds age 11 has just been dx after he woke up blind- 48 hours later after ct and lumbar puncture were told it was probably a migraine.
he had a few neuro appointments and tests and is now on preventive meds topiramate he has to take at bedtime ,
i take pink migralieve when i feel one coming on and sleep.
ive had symptoms for nearly 2 weeks - felt drunk ,walking into things,no spacial awareness ,slurred speech - i did worry ,saw gp who ruled out stroke and said they can last for ages.
luckily thats the longest one ive ever had.

AhhhhABaby Sun 08-Mar-15 18:02:26

3littlefrogs

When I got discharged on Thursday I was referred to neurology for a rapid assessment, neurology called in Friday morning and gave me an appointment for this Friday, yup a hole 8 days which I suppose is a rapid appointment when I comes to NHS haha.
oh I've never heard of Hughes syndrome so I will give it a search. Mums told me not to google the hemiplegic migraines as there is a stroke story in the first page of searches sad!

AhhhhABaby Sun 08-Mar-15 18:06:20

wfrances

I was given a cat scan on the Monday lumber puncture Tuesday and MRI on the Wednesday and all came back clear. Had bloods taken a million times sad
How do they check for the hemiplegic migraines? I was just told I have them and that neurology would give me treatement but until appointment been given paracetamol and ibuprofen for the pain.

I'm not going to lie it's only Sunday and I feel these last two days have dragged don't know how I will manage to wait till Friday!

How often do these things occur? I was given very little information from the ward doctor

Xx

I get these, have done since I was on the pill for one measly month, over a decade ago. I was diagnosed by a brain scan basically eliminating stroke/tumour & by the symptoms. And by the fact that the meds the Neurology specialist gave me, do keep it somewhat under control.

You need to identify your triggers - my worst ones are caffeine, strong cheese, MSG, alcohol, and being overtired or stressed.

My migraines were much worse for the first couple of years but they do go in cycles - several months where I could probably manage without the meds, then a few bad months where I continually look & feel like I've had a stroke & basically can't function. So I have to stay on the meds for probably the rest of my life.

I find that the speech disturbance & occasional nerve pain down one side of my body can last several days after all the other symptoms of a very bad episode have gone. My neurologist said this is not that uncommon with these but if there are any changes to your regular pattern of symptoms you should immediately get medical help.

wfrances Sun 08-Mar-15 21:22:42

everyones different .my son had his first episode august ,didnt have another one until january but each time theve been severe
loss of vision,left side paralysis ,slurred speech,vomiting for about 4/5 days.

mine are hormonal ,guaranteed a few days before period ,then i have triggers
lack of sleep
citrus fruit
certain alcohol
dehydration
going to long without food
certain shop lights
thunderstorms
flashing lights

you can buy migraleve over the counter,expensive though.
it contains a sedating antihistamine , paracetamol and codeine.
the idea is at the first sign you take two pink ones ,then yellow ones if you need more later--- its very rare i have to take the yellow ones.

SlightlyJaded Mon 09-Mar-15 00:12:04

Please ask your doctor about trying you on a Triptan. They are a group of painkillers that work on migraine by blocking he pain receptors (I think). I tried a few before I found the right one for me - Naratriptan. It has changed my life.

thanks for living with migraine. It's shit.

AhhhhABaby Mon 09-Mar-15 21:01:20

Ah I just can't wait to talk to neurology and find out more information about this type of migraine as I really don't know what to expect except from what lovely people have told me.

Can I ask is it advised that we wear a medical bracelet? I was speaking to a colleague at work today (first day back) and she advised I should have one. Never seen anyone with one and thought its abit pointless if it's a migraine? Or am I the one being stupid??

Xxxxx

wfrances Mon 09-Mar-15 21:19:33

ive never been out of it so bad i cant tell someone im having a migraine attack.
if you lose consciousness or cant speak at all - id be concerned it wasnt a migraine /

AhhhhABaby Mon 09-Mar-15 21:46:31

I've only had one attack (last week, diagnosed Friday) part of my symptoms was slurred speech to the point a doctor could understand me at one point.

I thought the idea of wearing one was a little silly! Glad I have someone else to back me up smile

Xxxx

AhhhhABaby Tue 10-Mar-15 17:29:49

If my symptoms come back so I need to go back into a&e????

Symptoms were not fully away yet but my headache is back full power with other symptoms, due to knowing it's the migraine not sure if I need to go into hospital again or not.

Don't see neurology till Friday xxxx

DrownedGirl Wed 06-May-15 21:41:15

How did things turn out? I was admitted to hospital at the weekend with suspected stroke. Still awaiting MRI but it looked like hemiplegic migraine, I actually do have highes syndrome/apas - was do after dvt in 2002

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