Saturday, 26 February 2011

POTS ahoy!

So, to follow up from my last post (gah, it was so long ago!), in my cardiology referral I didn't have a tilt test. Instead, I had a chest xray, an ECG and a heart monitor given to me for 48 hours to record my heart's behaviour over that period. Then it was the Christmas break, and when I got back to Bristol I had a referral letter to see a POTS specialist. That made me presume they had noticed POTS-type-behaviour on the 48 hour ECG (which they did).

The referral was for the 24th Feb (this Thursday just gone) and it could well be a day that changes my life. I saw a lovely guy - not the guy I was meant to see, I was meant to see the doctor my friend calls "Dr Genius" because he's so amazing, but I saw his senior registrar instead who was equally lovely. Honestly, he was so friendly and made me feel so so "listened to". As soon as I sat down he said "we're very interested in you" and smiled, asking what I think I have wrong with me. I replied "erm... POTS?" and he was like "I think so!" so... voila! I gave him a written list of my symptoms just to sort of clarify what it is that I suffer from, and he went down the list saying "yes" to every single point. I haven't even had a tilt test yet (he's scheduled one for next week, along with an echo) but he's so convinced that I have POTS that regardless of whether my tilt test is relatively normal or not, he's starting me on treatment. The treatment consists of an injection called Octreotide, and I was really surprised that he was so keen to jump in to giving me that because it's very very expensive, and I thought you had to try all sorts of other medication before you'd be put on Octreotide - I know that's the case with the friend I have who has POTS too. But I'm not complaining, I'm touched and seriously pleased that he wants to put me on it, especially as it seems to have made a huge difference to a lot of POTS sufferers. Anyway, so yes, he was absolutely lovely and was confirming the fact that the POTS diagnosis is unsurprising because of my hypermobility (a lot of people with hypermobility or EDS have POTS, or go on to develop it) and my CFS/ ME type symptoms. I don't know if this means I "don't" have ME - but the way I see it, I have ME, which is possibly partly caused by POTS. Does that make sense? I see the POTS as a cause and the ME as a consequence. The symptoms are so similar they might as well be interchangeable, at least for me. Obviously it won't apply to people who don't have tachycardia and the physical phenomenons you find in POTS, but for me it works to use the two together.

Generally I'm so glad I've been diagnosed. There are mixed feelings of course - it's confirmation that something's not right with my heart and who knows if I'll ever get better. But at least there are treatments (albeit not cures) to make POTS a bit more manageable, unlike ME at the moment. So it'll be nice to try some medication and see what happens. I'm also privileged to automatically be part of a POTS research group as a result of my diagnosis, so hopefully that means I'll be kept up to date with new leads in the field, and also I'm hoping it means I get to meet fellow sufferers which would be lovely. Speaking of which, my best friend recently said that she can't comprehend how I feel and what I go through physically and that I must have some sort of special bond with other people who have the same thing. In a way she's right, only fellow sufferers can understand how you're feeling, and it is nice to be around people who you don't have to 'try' with; if you feel ill you don't have to hide it to the same extent you do with healthy friends. But equally, she's my best friend and that means she understands me more than she could possibly imagine. And it's not the knowing how I feel which I need, it's the compassion, love and friendship that she gives me regardless of whether she knows how I feel or not. Just a random aside there :)

I don't really know what else to say - it's 05.30am and I can't sleep which is why I'm writing this post. I don't even think anyone is going to read it so it feels a little bit pointless but never mind... what else is there to do at this time in the morning when you don't know anyone else who's up?!

I might have to write another post soon on my life as I envisage it after uni - i.e. utterly bollocks :P all I can see for my future at the moment is ESA (Employment Support Allowance), DLA (Disability Living Allowance), a scabby flat which I live in alone, and my days completely void of purpose. I'm terrified. But I will elaborate on that, as I said, in a new post. I don't have the energy to continue this one/ start a new one, so for now I'll try and go back to bed.


Creative Chaos Art said...

I read it!! So glad you had a positive experience at the hospital, and hope the new medication works for you :) xx

anji_campbell said...
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gazanj said...

Thanks for doing your blog. I have full blown ME and I find it helps reading about others who have the same thing. I have only found one or two blogs that I actually enjoy reading, your included, without making me feel that if I get as bad as they are, I think I'd be suicidal. Your blog is funny and sweet and you laugh at things that could otherwise make you cry. Some bloggers are so serious, and believe me I know how serious ME is - I live it every day. It's lovely hearing you find ways of coping; with the awful sleep disturbances, the dizziness on standing, the muscle weakness, this list goes on as you know. I find your blog refreshing as I am guilty of many of the things you do. When I was in my (very naive) teens I did a lot of modelling but was secretly very much a geek and still very much am. I am hoping to go back to uni myself in Sept to study psychology which I have deferred for a year because of the ME. Just keep doing what you do, you're great. Don't let anyone ever tell you any differently.

chemilyx said...

Eee thank you Helen!

And Gazanj - wow, thank you so much! I honestly didn't expect anyone to read it and I thought my blog would be boring for everyone, it's just something I do when I get bored myself! But I can't tell you how much I appreciate your comment, it was lovely to read it :) feel free to contact me on here whenever, I love speaking to new people :)