Update on my PKD since being diagnosed

It’s been a couple of weeks since I finally got my diagnosis for PKD (paroxsmal kinsiegenic dyskinesia) and I thought it was only right that I come back on here to provide an update on how life has been since I started medication and what’s going to happen next.

I first of all want to start off by thanking everyone for your kind words and well wishes on my PKD & Me post – it got a lot of love, traffic (wahey!) and gave everyone some insight on why they might see me being odd IRL! In the past week I’ve had a lot of people come up to me and mention my post, which is funny as I always assumed nobody read this blog 😂.

Anyway, my last post on this was 20 days ago and I started to take a medication called carbamazepine which is more commonly used for epilepsy, but is used to treat PKD too. Life was WEIRD after I started to take it, the trembles completely stopped but I had some pretty hard core side effects at the beginning; constipation (sorry if that’s TMI!), lethargy, nausea, sickness and feeling off balance – some of these not unfamiliar to me! I began on 200mg once a day and then increased to twice a day after a week. Within the first couple of days I was completely wiped out and in the days that followed my increase I was the same again.

ill cant go anywhere

When I say life was weird, I don’t mean because the side effects weren’t pleasant – I’ve had my fair share of illness over the past 18 months so it wasn’t unfamiliar territory to be in – I mean that I could go about my life without my normal coping mechanisms or having to avoid things. The Tuesday after I started taking my meds I walked into town with my team at work for lunch, linked arms with my colleague (coping mechanism) but I didn’t really need to! I was strutting around like a sass queen, knocking things over, jumping up to get things and even burnt myself whilst cooking and NADA! Yes I was exhausted and yes I was having to work from home some days due to being that off balance I would have fallen into the cupboards at work causing paperwork to go flying everywhere – but it wasn’t controlling me!

So you’ll understand my disappointment that whilst driving down my road on my way to work that a car pulling out on me caused it to happen. Nowhere near as bad as usual and the strange sensation I normally get after wasn’t there, but it still felt a bit meh. I had a couple more sporadic episodes over the following days, but by Sunday they’d pretty much stopped.

I joined a PD group on Facebook where other sufferers share their stories and give each other advice on the day of my diagnosis. It was refreshing and really weird to have other people that understand my weird complexes about stairs and roads – and there are other people that refer to their episodes as the wobblies! Over the last couple of weeks I’ve made one post to introduce myself and have scrolled back through months of posts to research a bit more as there’s next to nothing on Google. I’m glad I did this as I started to relate to a lot of other people’s struggles and take better note of when my episodes happen. I’ve started a list on my phone where I log every time it happens, what has been going on with my body like if I’m on my period (hormones seem to be a huge factor in how this manifests) or if I haven’t had much sleep etc. to make sure I’m fully prepared when I next see my neurologist.

wobbly legs

I’ve got my tests back in London on the 5th of October – I’ll be having an MRI, EEG, lumbar puncture and probably some blood tests too (the day after I’m having a coil fitted as I can’t take the pill anymore due to my new meds – I’ve Googled it and it doesn’t sound pleasant lol) – and although I’m nervous about the lumbar puncture and having to go into the doom machine, otherwise known as an MRI scanner, I’m happy to be finally getting some answers.

I’ll keep you all updated on progress with this and let me know in the comments if you have any questions about anything to do with PKD, I’d love to continue spreading the word about it so others don’t have to struggle in getting a diagnosis in the way that I did.

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2 thoughts on “Update on my PKD since being diagnosed

  1. Oh gosh that’s today!! I really hope it goes well for you Gaby and I don’t find MRIs too bad, although last time I had one I desperately needed a wee the entire time cos of the 2 litres of prep they made me drink, IT WAS AWFUL. It’s so lovely to know your medication has been helping and forums with other sufferers can be so beneficial! Although take what they say with a pinch of salt as you always get the people on there who make out they’re 10x worse than everyone else for the attention or that will try and scare you off with a load of crap. Looking forward to seeing you go from strength to strength hopefully!
    Alice Xx

    Liked by 1 person

    1. Yeah thank you lovely! I didn’t get home until half 7 and the lumbar puncture didn’t go to plan – they couldn’t find the spinal fluid to test before the labs all shut for the weekend so I’ve been pricked and prodded around for no reason 😩 I’m sure I’ll be better tomorrow, just a bit grumpy now 😂 ❤️❤️

      Like

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