After The Last Post …

I've been away for a while! In my next few blog posts I’ll tell you what's been going on in my world since I last touched base with you. 

Are you sitting comfortably?

Then I shall begin.

For a number of weeks before my last post, there had been a few adjustments to my medication. I was getting bad migraines due to my codeine so had to come off that which was effectively my bone pain meds. The challenge now was to trial a few options. During the week of my last post, I had started having seizures. Small ones at first which just felt like a judder or a long cramp but were diagnosed as a possible reaction to a new medication the doc was trying me with. Nefopam. At first i thought it was a wonderful painkiller, my migraines stopped as i came slowly off the codeine and I was starting to feel a little brighter. My pain was still there and at night i was prescribed Oramorph which, again, seemed to be helping. 

My own novel redraft began in earnest, I had small spurts of energy but then I would spiral down again in to sleep or fatigued. I was managing longer on chores and admin than I was used to. I was enjoying the ups but the downs? Not so much.

I started getting organised: Me and Mum made our first official post-Lockdown trip to our local opticians and organised eye tests, new glasses/contact lenses. I now need to wear sunglasses in bright light as my eyes are becoming more sensitive due to ME. As it was our first outing to a shop of any description we thought we’d treat ourselves each to a soya latte at the Costa Coffee next door. There were three tables - two taken with tables of workmen so we took the third.  Just as we started our coffees the heavens opened and all the men ran for cover. Me and Mum rather coolly popped up our umbrellas and carried on chatting much to thewaitress’s amusement who ran out to clear the redundant crockery. As we sat there, the rain persisting it down, we decided that it must have been our many English summer camping holidays over the years having made us such tough cookies!

But that night I had a small number of seizures. More noticeable now, more violent. One seemed to ricochet through me like a bullet and caught my breath. The next day was worse and these judders were at least six an hour. I was also beginning to see figures, not quite in my line of vision, not quite there but would make me turn to see them. I rang NHS 111 in the end as I felt so ill. After talking through symptoms and meds, the doctor told me that I seemed to have had a number of seizures. It wasn’t a stroke thankfully. My own doctor was referring me back to the pain clinic and neurology. My vision was becoming more blurred and my head dizzier than ever.
By Tuesday, I was booked in with my doctor and the Pain Clinic both over the phone to discuss next steps. I felt as though we were finally getting somewhere. But the next day I was having small reactions and seizures in quite quick succession.

Wednesday was quite the day. It twirled double time. So bizarre. My doctor and the pain clinic seemed to be on a loop while they organised me. I was being referred to neurology for an MRI or CT scan and they ran a meds review, discussing and agreeing on my new medication regime! Immediate retraction of Nefopam, in case it’s that that’s causing the seizures. Continue Gabapentin, which is my nerve pain meds but is also great for epilepsy so win, win! Also, I had to wean myself slowly from Oramorph as that’s not great if you’re having seizures.I’m going to miss my Oramorph. Is that terrible?! 

I found out that a symptom of ME can, in some cases, be small seizures called myoclonic seizures.

‘Myoclonic seizures are brief shock-like jerks of a muscle or group of muscles. They occur in a variety of epilepsy syndromes that have different characteristics. During a myoclonic seizure, the person is usually awake and able to think clearly.’
Epilepsy Foundation.

This was most likely explanation for some of the seizures but the more severe ones caused black outs which didn’t link to ME or Fibromyalgia. So, at this point, we were looking at epilepsy or a stroke. Not quite what I was expecting!

That evening after working on the first edit of my latest novel, I was watching TV with my youngest when I lost consciousness and had a series of seizures. When I came round, he described what had happened and recalled details about the location and duration of the seizures. Also, the fact that I felt exhausted, could be related. My lads were amazing - very little fazes them where my health is concerned. They’re quite incredible. They sat with me, rang the paramedics who arrived in record time and then calmly explained what had happened. Apparently I was handing these amazing human beings (God Bless the NHS!) copies of my books to say Thankyou! I was then whizzed up to A&E, where I spent the night.