Hemiplegic Migraine Sufferers

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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 confused 

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  • Posted

    Hi Saaamic first i want to say how sorry i am that you had to go through this at such a young age and how frightening it must have been for you. I had my first migraine at 14 after I came home from the beach one day. First I had visual disturbances where I could only see half of everything then came the flashing lights the started off in the corner of my eye and slowly progressed across my field of vision. About 20 mins later I got a tingling sensation in my foot and hand and then my whole side when numb including the  side of my neck fact and my tongue. This lasted for about half an hour then went away and I was left with a light headache but nothing major. But it took me about a week to get over the aftermath of it.  This happened over the years on and off until i was pregnant with my second child and i was getting them daily to the point where I wasnt recovering before the next one happened. I was so fed up with this and exhausted. I came across an article about a migraine seminar and I decided to go just to see what it was all about. A chiropractor was running it and he seemed to know what he was talking about. He said most migraines are caused by problems with neck alignment and I knew my neck was always bad. So I decided to go to see a chiropractor and I never looked back. He saved me from a life of misery and I was migraine free for over 10 years until about 2 months ago when they came back. I had one but it had changed and I only had the aura and flashing lights. I think because of  changing hormones and my neck being really bad at the time is why it happened so I went back to the chiropractor after 10 years of no visits and he said my neck was so bad he was surprised they hadnt come back sooner. I know mine were nowhere near as bad as yours were but I just wanted to let you and others know that they should give a chiropractor a go as it cant hurt and it may just save some people the agony of what you and I went through. Take care.
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  • Posted

    Hello, I have had normal migrains since I was 5 years old. All the normal symptoms. Then at the age of 66 I had this "strange pain" on the top of my head left side.. On a scale of 1 to 10 it was an 11. It felt like someone was pulling my hair out. Took pain killer with no real help. Being a country area and a weekend getting to a doctor was not possible as it was a weekend. Next morning I woke with almost no vision in my right eye. I went to the local eye doctor who immediately sent me to the nearest hospital. It seems I had had an Optic Nerve Stroke. I have lost around 60% vision in my right eye and there is no cure. Over the last 4 years I have had these "strange pains" on and off with no real trigger, but the same symptoms as a migraine but with far worse vision issues during these attacks.

    Early this year the pains became so bad, I tried MaxAlt which is a migraine medication, I have found this is the ONLY thing that stops the pain. About 4 months ago, I again woke to total blackness in my left eye, no feeling in my left foot or arm and an echo in my hearing. Off to the ER department. The young doctor was amazing, he said this was no ordinaty migraine and I was admitted to a medical ward and assigned to a = well lets say overseas doctor. To say she was rude would be the understatement she even asked me if I was sure it was not just a bit of "stress" ! She hit my ankle so hard with a reflex testing hammer I ended up with a massive bruise. I have a CT scan and MRI all clear. At first they thought it was a stroke, but as the MRI was clear. I was discharged.

    I was then sent to out patients and saw a lovely "junior" doctor, who then told me I have Hemiplegic Migrains. I have regained the sight in my left eye but have now lost 70% hearing on the left side and 40% hearing on the right side.  What vision I have is awful, and hard to describe, except it is far from clear. They have me on Inderal, and that has really helped prevent these attacks but have there own side effects. My heart goes out to any one with these Hemiplegic migrains, they are truly awful.

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  • Posted

    I have not been diagnosed with hemiplegic migraines but I think these are what mine are. Started around age 11 with dropping of one side of face, loss of coordination, distorted vision, pins and needles and then a terrible headache on the one side. Had about 6 from ages of 11-13 all of this pattern and was terrified every single day about having one.  I didn’t have another one for years and thought I’d grown out of them until 6 months ago, I’m now 20. This one was very different, had the dropping of face and pins and needles I used to have but then  I was sick about every 5 minutes for 7 hours, collapsed and went unconscious, had a fit and started hallucinating. I came down with a temperature and the pain in my head was the worst I’ve ever felt. An ambulance was called but 8 hours later still hadn’t turned up. Would love to know what this was that night as obviously it wasn’t a typical migraine. Petrified this will happen again and my life hasn’t been the same since as I worry about it everyday. I was confused for about a week afterwards and my

    Coordination took about 4 days to get back to normal.  Not much support from GP and 6 months later still waiting to see a specialist 

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  • Posted

    I don't know if I have that. My neurologist diagnosed mine as Migraine with Aura but after researching into it I still don't think it is. My second attack was actually the worst actually. I was taking a shower and my head started severely hurting more than my regular bad headaches ( later diagnosed as migraines). I ignored it since I assumed it would go away which it did, however when it did a few minutes later, I felt extremely drowsy and the room started to go unfocused. I had started to worry at that point and tried to get out the shower but it was difficult since my body felt so heavy. I just assumed this was me being drowsy. When I got out the shower, the room looked red, orange and yellow and pixelated. I was so scared at this point I just wanted to get out of there. I put on my dressing gown and realised that my right side had gone numb and I couldn't tie it. I got of out the bathroom and collapsed in a chair in the room opposite after I couldn't even walk properly and that's when my eyesight completely went accompanied with a very high pitched whine and then silence. I couldn't even hold my head up so it fell backwards and my mouth wasn't working properly so I my speech was slurred when I was attempting to talk to my sister who found me.  I must have been like that for about 10 minutes before they slowly came back. My motor skills all returned that day along with my regular migraines but I don't think I was fine properly for about 2 weeks after that. I became very withdrawn and was hypersensitive to sound and light and wore sunglasses for about a week after the attack. I went to two separate A&Es that day and they said it was nothing despite the attack the previous year where I just collapsed like I fainted but it was just the fact my right side had gone numb after a searing pain in my head. Had a minor attack the next day as well. This as all about 3/4 years ago and they still think it was Migraine with Aura. I honestly don't think it is as someone who gets an aura every morning tbh. Your attacks seem to last much longer than mine so I'm not sure. I just really want an answer in case it resurfaces again.

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