Hemiplegic migraine

[Annielane]

Hey everyone. Last week I had a hemiplegic migraine (which basically mimics all the symptoms of a stroke). I was wondering if anyone has experienced one before? It's just kind of isolating and scary...

[Gypsi]

Yes. My daughter has HM. It is not the end of the world but very scary indeed. She is currently on birth control pill, Prozac, botox injections and neurophen plus for the really bad pain. Has also been on anti antiepileptic drugs for a while. It all started 3 and a 1/5 years ago, diagnosed as FND. Anything you'd like to ask, feel free. She is much better now by the way, has definitely overcome the worst of it. Best, G.

[bamboo89]

I had only one, about 5 years ago, and yea, it was weird and scary. Initially I was diagnosed with a stroke, and yes, when they did a CT followed up by a brain MRI, they could see white areas on the brain which they said confirmed a stroke. Luckily, by coincidence, and for a different reason, I'd had a brain MRI done 2 months earlier at a different hospital, so I asked them to compare the two - when they did, there was no change between the two of them, so it wasn't a stroke. Talk about lucky - without the earlier MRI, and at my age, I'd have been listed as a stroke victim and medically treated as such ongoing.

There is still some uncertainty as to whether it was the state of my neck that caused the attack, or whether it was a genuine hemiplegic attack... I was referred to Queens to see the neurosurgeons, but they decided my neck wasn't bad enough to warrant the surgery and could not explain why my neck might have caused the problem.

Whatever the cause, I had weakness down the left side and dizziness that side for some weeks afterwards - its very odd only being dizzy on one side of your head! I went to an alternative Bowen practitioner to help with the symptoms - he used various techniques, including acupressure and Emmet therapy, which helped. I did go to my cranial osteopath first, but because of the state of my neck and having osteopenia, it was a bit too risky for him to carry out his usual treatment, which is why I ended up at the Bowen therapist. I remember when the attack happened, I'd been feeling off colour for a few hours, with a one sided headache; I expected an aura migraine or visual disturbance to occur - no visual disturbance, but when it happened, I 'lost' my arm that side for a few minutes, but also had shooting pains up the side of my face and head - it also affected my jaw that side. Not sure if any of that is familiar to you... but it does pass.

My own neurologist also wasn't sure if it was my neck or a hemiplegic attack - I got the impression she thought it might be a combination of the two, because she said, if I had the surgery up at Queens, to be aware it might not resolve the problem of further hemiplegic episodes.

Now I have diazepam; if the shoulder/neck that side gets tight and stiff, I take one at night for 2 or 3 nights if necessary, just in case its my neck that caused the trouble, and so far, fingers crossed, I've had no recurrence. I now don't have aura migraine either - I cut out dairy (especially cheese) 15 months ago and that seems to have resolved the problem - whether it also resolved the possible hemiplegic migraine problem too, I don't know. It is scary to think it might happen again, you have my sympathy....

Miriam

[Cici5]

Hey,

I also have hemiplegic migraine and it was very scary the first time it happened; at the time all I knew was that I was extremely uncomfortable, wanted to pass out and that something's wrong. I'm currently taking a preventitive; I'm also on the birth control implant, as well as other medications for other issues. It can feel very dehabilitating at times, but now I have the power of knowledge. You're not alone and if you want to talk, please feel free to message me. Sending lots of love and support

[Bea66]

I have, it's not nice. Not every migraine is hemiplegic though, and thankfully they are coming less often as I'm getting older, but each time it scares the cr*p out of me! I haven't found any preventatives work for me, except possibly propranolol, and was told not to take triptans anymore too.

[Michdenise]

I too suffer with Hemiplegic migraine and have done so far the past three years. The first one was scary and I thought I was having a stroke. I went to our local hospital for three days whilst they carried out loads of tests including MRI and all were ok so the diagnosis was HM.

Since then I’ve tried several types of medication and have just reached the maximum dose of Pregabalin.

At it’s worse I was having three hemiplegic migraines every week and was not recovery after each episode. It was awful.

I currently have one of these migraines every week and they are often very different. Sometimes I even get the numbness and pain in both arms. It sometimes affects my speech and very occasionally I will be paralysed in both legs and arms which is terrible. It usually happens on waking up which is odd and lasts a couple of hours on and off. Although I then feel weak all day.

I have been to kings hospital to see a neurosurgeon as they thought it might be caused by damage in my neck. But I was told the symptoms I was getting would not be down to the damage therefore surgery was not an option.

I don’t appear to get many head migraines any more since having these migraines. Which is a relief as the triptans I was taking (and worked brilliantly) are not good for this type of migraine.

I’m hoping the hemiplegic migraines may stop now I’m at the maximum dose of this medication. But I need to give it a few more weeks. Not sure what I will do otherwise??

[Amanda-FHM]

Hello

I have had these since I was 11

I have the Familial hemiplegic migraines

Today is my 11th migraine in 8 days

I am in bits