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Post by Kala on Mon Apr 18, 2011 12:34 am

Hi everyone,

My name is Michala and I am 34 years old. I was diagnosed with Hemiplegic Migraine at the age of 7 after suffering three severe attacks and spending several weeks in hospital undergoing investigations. From then on I would experience an attack every 4 - 6 weeks, each lasting 2 - 3 days. As I became older my attacks would occur every 6 – 8 weeks but would then last up to 12 days.

Also over time I would experience more headache days between my hemiplegic migraine attacks, as if building up to my next attack and I felt I needed an attack to help clear my head. When I was 22 years old taking a gap year from uni I realised that I still had a headache after a hemiplegic migraine attack and from that day since I have never had a pain free day.

It wasn't until 2008 that I was diagnosed with chronic hemiplegic migraine after investigations to rule out low CSF pressure headaches. My chronic hemiplegic migraines are intractable, meaning they do not respond to the normal preventative medications.

From the age of 14 I was put on preventative medications and over the years that have followed I have tried all the normal preventative medications available, several more than once as well as others that have a limited research basis. I have tried all the triptans available and other acute treatments, as well as several alternative therapies.

On several occasions I have also made the decision to stop all preventatives as I believed that they were not helping but as a result found that I couldn’t cope with my horrendous hemiplegic migraines that I would then move on to the next. I have lived in hope that the next medication would be the one that would give me control over my migraines but success has been extremely limited.

I also have the misfortune of suffering from another primary headache condition known as SUNA, which stands for Short-lasting Unilateral Neuralgiform pain with Autonomic symptoms. These I have suffered from these for about 8 years but never knew what they were until I was diagnosed in 2009.

Due to my migraines being refractory I have an ONSI (Occipital Nerve Stimulator Implant). Unfortunately so far the benefits have been rather short-lived with regards to my chronic hemiplegic migraines but it has improved my SUNA by about 80%.

I feel I have a vast knowledge and experience of migraine and I’m willing to help other sufferers learn more about their own illness through my own experiences.

Best wishes,


Posts : 82
Join date : 2011-04-17
Age : 43
Location : Nottinghamshire

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Post by whitzendJane on Wed Apr 20, 2011 12:36 am

Good to see you on here M..keeping everything crossed for you

Posts : 358
Join date : 2011-04-14

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Post by Sarah on Sat Apr 23, 2011 12:15 am

'ello. Smile I think we've met somewhere before..?? Wink

Posts : 588
Join date : 2011-04-21
Location : Essex, UK

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