Suffering From Hemiplegic Migraines For 17 Years - How Do I Manage With Them ?

Friday, 11 August 2017
It has taken me a while to come on and actually write all about my Migraines and what really
happens during a attack, I have had a lot of people including doctors what type of Migraines that i actually do suffer with as they have never Hurd of them before and they also ask me all about the symptoms from each attack that i have. When i tell people about the symptoms when i am having a attack i explain to them that i am having a Stoke and i cannot do anything bar lying in bed in a dark room and they are very shocked to hear that i am having these symptoms with the attack and i also tell them that i cannot walk & talk and i go paralysed on the right had side of my body (either side) and i also loose my memory for unto 24 / 74 hours and they say you poor thing you must be so brave that you have these very rare Migraines and coping really well with them. Some people don't actually know what a Hemiplegic Migraine is as they are very rare and only a few thousands suffer from them and they also do have the symptoms of a stroke with them and it can be very scary for someone my age when i first experienced the attack almost 17 years ago.
I first experienced a Migraine sometime in 2002 - 2003 (I don't know the date for sure) when i started high school I was also moving house at the time also as we were fed up where we're were living and i was also being bullied so it was a good idea to move somewhere quite and peaceful,  As moving house is very stressful and it was a lot of hard work that we hadn't had no tea as we were busy sorting everything out that my step dad decided to go and get some Fish & chips and then this is when the trouble began for me. When i first told my mum that i had a headache (as i never had one before) and told her that my head was banging and i was also loosing my vision she told me that i was experiencing a Migraine attack and told me to go to bed in a dark room and take some pain killers,  It took me a while for me to get to sleep because the pain was so bad that i was crying in so much pain that i wanted my mum & dad so much, The pain was something that i had never experienced before and i couldn't call my mum as i wasn't able to speak as my mouth was numb and my right side of my body was also numb so i couldn't do anything for myself. My mum came up to check on me and to see how i was doing and i tried to explain to her that the pain was very bad and i couldn't move my arms and legs and it felt like i was paralysed from the waist down. My mum just couldn't understand why my Migraine was so bad and also why i was having these kinda symptoms from a stroke she was puzzled, My mum watched me for over a week and these attacks were coming on every morning around about 3.00 am and this made it impossible for me to attend school so my school life was sadly ruined for me since that very first attack.

As my Migraines wasn't getting any better my mum made me a appointment to go and see my doctor and to see what the next stages were as i was so fed up that i couldn't go to school and i was so unwell and i just wanted to get better more then anything, The doctor gave me some tablets to take (and i cannot remember what they were called) and they told me to take 2 tablets every night before bed and see how i get on with them and if they stop the attacks for me. Well after 2 weeks the medication didn't do anything for me and i had to go back to the doctors where they decided to send me to the hospital for further treatment and medication, When i attended the Children's hospital for my Migraines and they also asked me what was going on with the attacks once they come on and also the symptoms that i was suffering with them, I explained all this to the doctor and they gave me some more medication and asked me to come back in a few weeks if nothing had improved for me. Well the medication never worked for me and these attacks were very slowly getting me down and i just wanted to go to school and have a active life, The next time i went to see my doctor at the hospital they were going to do a MRI scan just to double check if my brain was ok and if there were any problems causing my attacks to be so bad, The MRI Scan that i had was a very fighting experience for me as i had never ever been in a scanner before (well my mum told me that i had one years ago but i don't remember it) and my mum was with me on the appointment as i was so scared about going in that tunnel on my own, The staff who was looking after me told me that my mum can come in and talk to me while i am having the scan done witch made me feel a bit better and getting on the bed was very hard for me and they put a cadge over my head and then i went into the scanner. When i was in the scanner all i was looking at was a square piece of metal that was placed on top of the scanner and i could still here my mum and the nurse who was taking my pictures and then the noise of that machine was very loud and at the time i wasn't given any headphones to listen to any music and the total time of the scan took over 2 hours and when i came out of the scanner i was so stiff that i had to be put in a wheelchair because i couldn't walk and if i have to have to go though a scan like this again i don't think i would because it is to fighting for me to go though all over again.



The MRI scans of my brain was seen by a lot of doctors and specialist and i was worried in case something was very wrong as they took about 6 months to come back and i was so worried because i knew that i might need brain surgery or something, The doctors at the Hospital had the results back when i had the appointment and they said that i have a scar on my brain and also dark and light patches on the left and right side of my brain and the doctor said that he couldn't treat me any more and then referred me to a specialist in Bristol Children's hospital for further testing and treatment.
I don't think that i had to long for the appointment to come though as i remember it was kinda quick and it took about 2 weeks for the letter to arrive witch was really fast, Before i was due to see my specialist in Bristol about a week before hand i had yet another attack and i was worried in case i couldn't attend my appointment and i would have to wait a further 6 months for a new appointment as this doctor who i was seeing was very popular and and always booked up with appointments,

I knew that this doctor in Bristol would give me some answers and my mum to see what was causing me to have these really bad Migraines and hopefully medication i just knew that he would fix me the first day i went to my appointment, The doctor who i was seeing was a professor in neurology and knew the inside and outs of the brain and the first appointment was basically getting my information about my attacks and explain to him what happens during a attack. Of course my mum had to answer the questions as i was kinda young at this time and i didn't understand myself what was going on so my mum explained everything to my doctor tried me on some more medication to try before going back again in 6 weeks time for a check up and maybe tests! I went home with these tablets that my doctor had given me and i can remember that the attacks hadn't stoped them at all as i had one at 2.00am and i was really bad yet again and i was now in the middle of my exams and i needed to catch up on my school work as i was falling behind so badly,  I went back again in 6 weeks and explained
to my doctor that the tablets that he had given me to try didn't stop the attacks coming on at 2.00am in the morning and for some reason these tablets made my attack even worse then the other ones that i tried, I was so stressed out very upset and i wanted to go to school as i explained to my doctor as i miss my friends and my school work is amounting up while i am not there and i just said to my doctor that theres something wrong with my brain as i was crying in pain and also i just wanted a answer on what i was suffering from.

As my Migraines wasn't getting any better the doctor suggested that i should have a EEG (Electroencephalography) witch monitoring method to record electrical activity of the brain to see if there was anything going on with my brain juts to make sure if everything was ok as the last hospital i was under didn't say anything about doing a EEG on me to check on my brain waves so the doctor at Bristol knew what was talking about and he also set up a appointment to go back and to have the test done, The day of the test wasn't to bad and i remember that my step dad took me and i was so scared as i wanted my mum with me but she couldn't come as she was busy! The nurses looked after me very well as they knew that this was one of my very first time having a EEG and i was pretty scared as i didn't have my mum with me and i felt so upset without her but the nurses was fab.
The test took about hour to complete and i can remember having electro's placed on my head and i was also covered in glue as they had to stick the electro's onto my head and i had over 300 wires on my head when it was all done, While the test was being done i was able to lie on the bed and go to sleep as this was the best way to make the test go faster and also not to try remember it the nurses told me when they were talking to me. The test was straight forward and it was all done in less then a hour and the test results would then go back to my doctor who would arrange a new appointment to see him and to discuss the results!

The doctor had my test results back from my EEG and he said that everything was completely fine and normal and i cannot see anything wrong with your brain waves in your brain its perfect, When i explained the symptoms to him before he said to me what type of Migraine i was suffering with and he told me that i had Hemiplegic Migraines and he also explained to me what they are and also why i was getting numbness in my left hand side of my body each time i had a attack, he said that i was also getting the numbness with the attack due to me having symptoms of stroke and my mum didn't know that this could happen while you have a Migraine as my mum get Migraines but not as bad as mine and he said yes you can as these Migraines are very rare and only a few thousand only suffer with them, and there was a lot of things that i couldn't eat and drink and i had to also change my diet and my lifestyle as it was so hard to give up my favourite foods like Cheese Chocolate and coke. The doctor suggested that i should take Pritozen 2 per night before i go to bed to prevent the attacks from coming on in the early hours of the morning and i was then on the highest strength of the drug after leaving hospital

Since leaving the hospital in 2006 i haven't had that many attacks due to me taking the medication for many years but the Tablets that i have been taking doesn't stop the attacks from coming on they only prevent them and i could also have a attack at any time of the day so this is why i still need to be very careful on what i eat and drink to this day,  In last couple of months in 2017 i have had a few attacks but they haven't been as bad as i have been on the medication and since 2006 i haven't been back to see anyone about my Migraines and i believe that the tablets has stopped working or i need something newer as i have now been on pizotifen now for over 17 years and it has been a long time and i believe that they have stopped working altogether. I also have a injection kit in my bag just in case that i do get a attack and i can inject myself or someone one else.

I am due to see a neurologist in October 2017

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