Help! Sporadic Hemiplegic Migraines

My name is K and I have suffered from self-diagnosed sporadic hemiplegic migraines since I was 14 years old (I am now 25).

Now let me start by explaining the self-diagnoses………I have had these migraines for over 11 years and I have yet to meet a neurologist or doctor or anybody that could put their finger on what my condition was. Which I don’t blame the doctors since it is not a very widely researched migraine and very few people experience them. However, as I began to research my symptoms on the internet there was a small body of bloggers and research about sporadic hemiplegic migraines and everything I read screamed what I experience. So since I do not have an actual diagnosis from a real doctor (yet! I will be presenting my most recent findings to my doctor in a couple weeks) I am welcome to hearing what people might think I have and if anyone has ever experienced what I am about to describe.

When I was 14 years old, in grade nine, at a basketball practice I started to notice a weird pain in my head (to this point I had never a sniff of a headache) and that I couldn’t quite see right out of my right eye. I continued to practice because I thought I had just stared at the gym lights for too long and had that weird after effect you get when you look at the sun or bright light. I began to feel nauseous and quickly told my coach I had to go I wasn’t feeling well. When I went to call my mom I couldn’t get one normal word out, everything was garbled and I could barely remember what I was even trying to say let alone say the actual words. I was rushed to the hospital because my parents thought I was having a stroke. I couldn’t read or write or really understand any spoken word. The pain in my head was like nothing I had ever experienced. It was a 10/10 on my pain scale and I was experiencing some paralysis and tingling feeling in my upper body. My CT and all my tests came back normal and I was released from the hospital and told I had just had a really bad migraine. Which thus far all my symptoms were pretty typical of a bad migraine. I would go months sometimes years without having a single episode. However, every time I had one it would start the same way, aura, headache, aphasia (loss of speech, confused speech) light and sound sensitivity and the pain would be unbearable. Sometimes the episodes wouldn’t be bad at all and others would be debilitating. What made them worse was the migraine hangover that would last for about a month. The month following, I would have a dull ache in my head, depression, visual and speech disturbances, lack of motivation, light and sound sensitivity and difficulty concentrating.

Up until August of 2015 I went about three years without having a significant episode as described above. Then one sunny afternoon in august I was reading a book and all of a sudden could no longer understand what I was reading and had a large aura (I get big blurry patches that eventually blind my entire right eye). I hadn’t had one in so long that I immediately knew I should get to emergency as fast as I could. Now this episode was much different than others. By the time we got to the hospital I was mostly incoherent could not talk or understand what anyone was saying to me, light and sound sensitivity like I had never experienced and the pain in my head was much different than any pain I had ever felt. Once I was admitted and lying in a bed I began to experience extreme paralysis of my upper body, face and tongue. I could not move and lost complete strength in my left side. My face began to droop and I lost my ability to move my mouth properly. Furthermore, I lost consciousness for about 30 minutes. I thought I passed out from the pain (which could still be the case) but I was reading that going into a coma from these types of migraines is not out of the questions………(please if you have ever experienced this your comments would be greatly appreciated!!). The doctors pumped all sorts of drugs through me (not sure what all I was given as I was fairly dazed still when they released me and my cousin who took me in was not paying attention). This was the worst experience with these migraines that I had, had. For about 6 weeks after this migraine I stumbled over words, had weird nervy sensations in my hands and arms, had a constant dull ache all over my head and felt super unmotivated and depressed. Exercise was hard for me as I would fatigue at a rapid rate (I am a high level track and field athlete that trains 4-7 times a week). I eventually got back to feeling somewhat normal but to this day still have trouble with light and loud noise.

Exactly one month ago today I had another migraine episode with all the symptoms listed above minus that loss of consciousness and much shorter in duration. That being said a new symptom presented itself where I felt like my hands were swelling to the point where they would burst. Following this migraine, I experienced severe night terrors and began sleep walking (I had never experienced any sleep problems up until this point in my entire life). As of today I am still struggling with night terrors and have trouble going and staying asleep (and like I said I have always been a good sleeper). I am also still struggling with light and sound sensitivity, feeling unmotivated, easily fatigued and super emotional.

I have been admitted to a program called CHAMP (chronic headache and migraine program….i think) and have to wait 1.5 years to see the specialist. I have seen my neurologist several times and he is at a loss of what to do or how to manage them other than going to emergency to get immediate care. I have been prescribed sumatriptan, which I have yet to take. I have never really been prescribed medication because they are so infrequent and severe that doctors would rather I just come into the hospital.

That is mostly my story…….
If anyone has any insight that would be amazing!!!!

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