New to forum - Hemiplegic Migraine

Hi all

Just found the forum....wasn't going to post yet, mainly cos I am having a bad spell at the mo, but decided to jump in and say Hi

I was diagnosed with Sparodic hemiplegic Migraine a year ago it was thought that I had had a stroke. Had MRI, CT scan and lumbar puncture they came back normal. Neuro diagnosed SHM. Since then I have several attacks a week usually hits my left side sometimes total paralysis, no head pain and other times just weakness and migraine pain. There is no pattern. Tried Epilim, beta blockers which I have cos I also have Hypertension, Inderal, metopropol (spell???) amytriptalene...can't take triptans although saying that I have seen a neuro in London recently and he as prescribed a triptan...tried it yesterday and today not touched my head in fact i would say it is worse!! Also going to try Epilim again but at a much higher dose than I have tried before..but can't take for another 3 weeks cos I need paracetomol outa my system for 6 weeks also diagnosed medication overuse headache. Saw GP yesterday had a bit of blow cos she as suggested I defer my exams until Aug when hopefully the meds are doing something. I am at Uni doing Herbal Medicine degree (mature 44 year old student). Like I said I have hit a really bad patch can't shift my head enough to study anymore. Really don't like this beating me and finding it difficult to give in.

There is not much info out there on hemiplegic migraine mainly cos it is rare and neuros don't understand the condition much either. Also there is no specific med for it, which doesn't help... Tried herbal stuff to no avail as YET!!

Anyway Hi to all...can't write anymore need to sleep.
Will stay in touch and maybe I can be of help to you guys out there in cyberspace

Love and always HEALING
Von XX

Hi Von and welcome!!!

I am sorry to hear you are having such a tough time...it is so difficult to feel helpless and a bit defeated while waiting for meds to wear off and time for new ones to start working...

It is good that they have run all the necessary tests and have a proper diagnosis, now just need to get the proper treatment plan up and going and everything will be on the right track. Once you start feeling better you can get your life back on the right course and get back to your education. I know thats probably not what you wanted to hear...I know it wasn't what I wanted...but sometimes it has to do!! We have to take care of ourselves first and get heath matters in order and then we can work on education and careers.

I am in the midst of a killer attack right now, when I get all spiffed up and the storm front passes I will post some resources for you...I have read some good info..as far as what to expect and things like that. At least things that will reaffirm what you already know and so you won't feel like you are alone in what you deal with daily.

Post often, we are glad to have you!

Sara

Thanks Sara...sorry to hear you are having a bad time of things too. It seems from reading the posts that the majority of sufferers are still struggling with their migraines, which is just not good enough....It is time that neurologists had the funds to research in greater depth as to what is going on!!!! I am new to SHM and had enough of been given medications that have so many side effects that it is untrue. SORRY!!! Feeling ill and depressed and in need of a rant.

I have a question has anyone tried Naramig? Just had a bad reaction to Naramig (made my attacks worse) been back to GP again today second time this week now given Frovatriptan and Arthrotec 75 which I had to fight for... I know I am supposed to do without painkillers for 6 weeks BUT can't stand the pain any longer... I have taken Arthrotec in the last couple of hours it as taken the edge off my head but feel really nauseaous and a little pain in abdomen (do have an underlying Hiatus Hernia as well) which taking a cocktail of drugs is not helping.

We have a small group of Hemiplegic Migraine sufferers here in the UK and have tried to get the migraine specilaists together with the group to say LOOK this is what is happening, this is what the meds are doing to us and we need answers!!! but to no avail.....

Rant over would love some feedback guys

I have posted a message today about being a sufferer of sporadic hemiplegic migraine, and I am interested to read Von about a small group of hemiplegic migraine sufferers here in the UK. I would welcome any information regarding this group.

Kala