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I am wanting to reach out to people who have suffered hemiplegic migraines as a diagnosis. I wanted to shed some light into my experience of this.
At age 12 I started suffering from what was eventually diagnosed as hemiplegic migraines, I would have an extremely sharp pain at the back of my head and a headache post that for 24 hours which signalled my attacks were coming on. My trigger was hormonal imbalances with stress and all up between 12 and 16 I had 13 attacks.
My first few attacks were left sided paralysis - facial droop, inability to move my left arm, left leg or stabilise my trunk for support which caused a major left sided lean. This numbness and inability to control my arm and leg lasted between 1-3 weeks. I had been a guinea pig with Doctor's placing syringes into my left side to gain a reaction of my nerves with no avail.
After my first few attacks, i had (within one year) four full body paralysis attacks which affected both of my arms and legs, swallowing reflex, neck and trunk control. To say the least, it was at such a young age the most frightening thing I have had in my life to this day. The full body attacks would last from 4-8 days but required occupational therapy to increase my fine motor skills.
I wanted to post this thread because I had seen a lot on forums about sufferers prognosis. For my case specifically I have not had an attack since aged 15 - I am now 26. Each case is different and I am lucky to have no permanent damage both somatic or psychological. I really did back 11 years ago believe I was going to have a poor outcome in my life, and my mental state was severely impacted due to my young age of this occurring and the lack of answers and support back then.
I want to hear about people's stories. How this has affected them and how they are coping. It really is a debilitating illness and I want to know how the healthcare system has changed in regards to understanding of this illness. I had CT after MRI after lumbar puncture countless times and with no diagnosis/ one doctor not believing my symptoms were real until the test of syringes into my skin - which mind you was extremely embarrassing at such a young age.
Please share your story, I want you to know you are not alone, that each case is so very different and to maybe give hope to sufferers of this or families of sufferers.
This post was brought on by my discussion with my mum about how she coped with this as a mother, there was no option to treat or prevent what occurred to me throughout my time suffering, neurologists were astounded by this back then and were the only people who understood this was no joke.
So I will leave it at that. I am now a nurse and want to at least find out if they have true medications out there which are now preventing this occurring? Tell me your story
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