It has taken me a very long time to make this post because everyone wants to know what it is like living with and coping with one of the most rarest Migraines called Hemiplegic Migraines,These attacks can be very frightening when people actually get them because they are having symptons of a stroke and that means you will loose the ability to walk and talk and your memory is completely blank, I have been living with them now for over 13 years and what i have been though since i was first diagnosed with Hemiplegic Migraines well it hasn't been a very easy journey for me at all.
When i was first diagnosed with these rare Migraine attacks i had to change my lifestyle so much and also what i was eating and drinking on a regular basics because some of the foods and drink that i was having could cause me to have a Migraine attack at any time of any day, I was quite upset that i had to change some of the foods that i loved so much because i was suffering from these bad attacks.
The first time when i experienced a Migraine attack was sometime in 2004 when i was moving house with my mom and step dad and it started when i had a piece of fresh cod from the local chip shop. I didn't know what caused the attack to happen but it was very frightening experience for a 15 year old teenager, My mom saw me go very white and she knew that i wasn't well so she gave me some paracetamol and told me to go and lie down in a dark room until the attack was over, I can remember my mom told me that i was experiencing a migraine attack and fish is one of the bad things to eat for a Migraine to start but these attacks was more serious then a normal attack as i wasn't able to walk and talk and also i would loose my memory for over 24 hours and my mom had never seen someone with a migraine attack like this before,
One this attack happened they kept on coming on at 3.00 am every single morning and this made it impossible for me to go to school and i was also planning for my exams at the same time and my mom decided that she would take me to see a doctor to get some help and advice what type of Migraine that i was suffering from, The doctor didn't really offer any advice to me only to say that i was suffering from migraines and explained to my GP what was happening while i was going though these attacks and basically said to me come back if they aren't getting any better. I waited a few more weeks where the attacks was still coming on at the same time of 3.00 am and i was getting worse and worse and i said to my mom that i was fed up of being ill all the time and i wanted to go to school but i couldn't go. I went back to my doctors where they referred me to see a specialist at the hospital to see what they could do for me and also treatment, I did try to attend school as much as i could while these attacks was coming on and also attending appointments and i also had medication at school for me just incase a Migraine attack did happen. I did have a few attacks at school and the medication did work and done what it said on the packet, I was then given a MRI Scan of my brain in sometime around 2003 /04 and i hated every single minute of it and i would never ever want to experience going in one again. My brain scan took a total of 6 months to come back after everyone had seen it and looked at it and i thought that something was wrong because it a long time to come back from the hospital.
I had the scan results back when i attended the hospital and the doctor explained to me that i have scaring on the brain and also dark and light patches on my left and right side of my brain and they also transferred me to Bristol Children's hospital a few months later because they done what they could for me and the medication that i had wasn't working either,When i arrived at the new Bristol Children's Hospital l was blowed away how nice it was and how all the staff was so friendly and welcoming, I had a lovely doctor who was a professor and new everything about the brain etc! I had a few appointments with him and was very good, He asked me how i was coping with the attacks and attending school, I explained that i was finding school very hard and also at the time i was planning for my exams and i couldn't study because of these attacks took some of my time away, He wanted me to have a test done and that was brain electro's where they place wires on my brain to check the brain waves and i didn't mind having that done and he arrange everything for me.
I Can remember that my step dad drove me to Bristol the day of my test and he was with me all the way though it, The staff was very friendly and told me that i was gonna be Just fine as i was kinda scared about it. The test took a few hours and everything came back normal and there was nothing wrong with my brain and the signals etc! The professor had my results and told me what i was basically suffering from and that was Hemiplegic Migraines and i am gonna put you on full time medication to prevent these attacks from coming on and also explained to me what i can eat and drink because there are so many foods that Migraine suffers can't eat and this meant that i wasn't allowed to have Tea & Coffee , Chocolate , Coke , Fish , Milk and other dairy products. I was so scared about having a attack again that i stayed away from coke , Chocolate , Fish for over 2 years because i didn't want to experience a attack again.
Once i had finished with the professor in Bristol i went back to school to get on with my exams and i did sit them and done pretty well in them witch i was pretty shocked about as i was't there half of the time and i was even pulled out of lessons just to catch up on work,My dad and Debbie (My dad's girlfriend) experienced me having a Margarine attack the first month after i was diagnosed with them and my dad couldn't believe how pale i went and how hard it was for me to walk into the car park and speak to him, My dad had to carry me upstairs to bed and got me into bed and let me sleep of the attack, My dad was pretty shocked what i was going though when he saw me like that and he said that it scared him a little bit and thought that i was having a stroke and then i explained to him the side effects from these Migraine attacks.
My dad was very understanding and very supported about me suffering from these attacks and my dad's girlfriend too, As these attacks are also a serve disability too and i have now been on the same medication since i was 15 and they have worked wonders and i can't understand that i haven't had a bad attack for years now and i have been so happy as i have been able to go out and do things without me having a attack in the early hours every mornings,I have had some treatment in the pass for my Migraines and they have also helped me and provided support while i was having treatment / tests done and i believe that this caused me to grow out of them or the medication is stopping them, I am also scared about having a Migraine attack again because of the stoke side effects and also missing out on things. I also joined the Migraine trust in 2004 where they offer help / advice to Migraine suffers with information and support and they have been very helpful towards me ever since and they are only a phone call away if i ever need to see them or speak to them witch is fantastic.
No one knows what caused me to have these rare Migraine attacks as a few people less then a 1000 are diagnosed with them and some people told me from my doctors and specialists that my Migraines are caused from my scaring on my brain from my Virtual encephalitis when i was 2 but no one still doesn't know what the reason is, I have now been living with them for over 15 years now and to tell you the truth i am still scared about getting a attack at any time of the day and night so this is why i now carry a injection kit with me if a Migraine does happen as medication while i am in the attack doesn't work and i am so pleased that i have managed to get this kit after so long.I have been able to eat things like chocolate , Cheese , Milk , Butter and coke once again but i have to limit things like chocolate and cheese because that does give me a headache sometimes and i usually limit myself to 1 - 2 bags of small packets of chocolate every 3 - 6 weeks and since i have been doing that it has helped me so much,
At this current time i am still on medication and i am now only taking 1 tablet per night and i still haven't a attack now and sometime next year i am hoping that i can come off the medication as i am getting kinda fed up of taking them now and usually i sometimes forget if i have taken the tablet or not when i am about to go to bed,
I would like to thank all my family and friends who has supported me though my Migraines since i was diagnosed and helped me with attending appointments / Tests throughout.
Rianna
