Its ben a very long and emotional journey for me… So here it goes, make a coffee, cup of tea and get comfy…
Before my diagnosis back in April last year, I would have the occasional headaches but I always put them down to my eyes and having my glasses needing a new prescription. I was also diagnosed with POTs (Postural Orthostatic Tachycardia Syndrome) But just after Christmas 2016, me and my girlfriend went to Nottingham to visit family for the weekend. Whilst going around the outskirts of the castle, my heart condition kicked in and before I knew it I started feeling dizzy and I fainted. Next thing I knew, I was on the floor surrounded by several people including my girlfriend around me under a bridge. I was told I fell down the steep hilled path by 7ft-8ft and hit my head. That was the day we was traveling back home to the south east coast by car. Within 24 hours (not even that), I remember feeling really hot. The house wasn’t hot at all and all I had on was just literally my dressing gown. I was so hot that I was fighting with my self trying to get my dressing gown off… Next thing I know I’m laying on the sofa with several paramedics around me and my girlfriend holding my hand kneeling in front of me informing me that I had been fitting.
I was taken to hospital to be observed, and was discharged after a few hours. I was told to go home and rest, if more symptoms of vomiting or headaches I should go to my GP. So next 2 days I was tender and sore in places, but I did end up going to my GP. I had concussion as well as pulled and damaged muscles in my neck and shoulders.
Couple of days my girlfriend and I went out for a local New Years Eve party with out friends. I hadn’t been drinking due to how I had turned back in Nottingham and also being on painkillers (also you don’t need to drink to have a good time), next thing it started again, (I cant tell by the way when its going to happen. I have no warning, no sensation that its going to happen so I cant warn people around me. I tell people what others have told me how I go, what they see before it happens), before it came on completely my girlfriends and friends managed to get my out on the sofa away from danger and called an ambulance. The paramedics didn’t know what POTs was nor the doctors at A&E… They both had to GOOGLE it!
(Let me try and explain how these ‘episodes’ look like…
- I start looking like a daydream state/unresponsive
- Start jolting in my shoulders/arms/neck/legs
- Hands shape into claw like
- Scratch inner creases on elbows/lower arms/face/neck/chest/head/hands
- I become extremely strong event all 3 family member cant hold me to prevent
me hurting myself
- this can happen for how ever long … can go in and out… look as if I’m coming
round but go back into another
- When coming around, can take a while, slurred speech, confused, scared like
behaviour, can become very emotional and not want to be touched, have been
know to push people away (even showing these… Has been know for me to go
back into another episode)
So these ‘fits’ went on for a while… it was just the fact of trying to live my life around it, not letting it control me but me controlling it (even though I had no control)… for me it put pressure on mine and my girlfriends relationship. I felt I was a burden to her, an annoyance when these happened around her. I found myself pushing so hard to ignore my own issues to be there for her to fight my demons because I know what she was going through at the time was extremely important for her. So, with a number of things that was going on at that time, I felt like I needed to move back to London from the South East Coast.
Whilst living back in London, 8 months in, I finally was getting sent for tests regarding these ‘fits’ ‘episodes’ that I call them. They had become stronger, that to this day I have damaged myself so much I have scared my body from where my hands go in a claw shape and I scratch my arms, face, neck and chest… To the point I draw blood!
I went for a MRI via my Neurologist. Whilst waiting for and appointment to come through the post to get my results, I had a very bad turn with my episode. I was home on this specific evening relaxing on the sofa. the past 2 days I had to call in sick due to recovering from an episode that happened a few days before this evening. All I remember is laying on the sofa watching TV with my parents, then the next thing I have 6 Paramedics in my front room, my friend holding my hand calming me down, and my parents head peering around the door frame. Then the next thing I knew there was 2 paramedics with me and my friend still holding my hand whilst they try and put a needle in me. (where I had gone again) When I got in the back on the ambulance, my mum told me that I was in and out for at least 2-3 hours. I even have 2 fast response cars and an ambulance. Ended up being sick the whole way to the hospital.
I got taken straight to resus to be assessed and observed. I was weak, confused and emotional. Both my mum and friend explained to the nurse what has been going on and what had happened that night and that I had gone for and MRI. She then came back saying that the results was on the system… something has shown up but its not her place to say…( WHY EVEN SAY IT IN THE FIRST PLACE THEN!)…
What still disgusts me still to this days is that apparently when I had another one at 2am in A&E the nurse did nothing and apparently left my mum and my friend to deal with me!
So my visit to the hospital from 9pm to 8am was a waste of time!
Not long after I came out I had an appointment through from my neurologist to see her for my results that’s when she said about the 13mm herniation Chiari Malformation. But apparently, when I had a MRI previous to that it showed up then but I didn’t get told anything. so when and how she said it, it was like I should have known! So she put me on Lamotrigine start and 25mg twice a day then 50mg. Was admitted in to an Epilepsy Society Hospital for 5 days for a EEG and sleep study. When returning back for the results, it showed that my episodes isn’t epileptic or any form of seizure… but its my brains way of dealing with pain. She explained it like a computer that has so many errors that comes up, it gets confused and it restarts itself. but for me, by brain cant take the pain, so it gets the body to take over and physically take over.
So I’m currently weaning myself off Lamotrigine 50mg AM/PM (so 0mg AM and 25mg PM) and on to Topiramate 50mg AM/PM (so far 25mg AM and 50mg PM)
So far have been refused surgery … what is others opinions? What’s your journey been like?