Friday 4 February 2011

Reboxetine-inspired blogging

So, my first ever blog. I'm not even going to try and avoid being a little emo, so like it or lump it. I decided I wanted to track my progress with the CFS/ME service I've just been referred to after three years of fatigue.

My first appointment was yesterday. After finding the place and a long wait in a depressing reception area, I met my assessor. This particular service is based in a psychiatric outpatient clinic at a hospital site which apparently used to be a "mental institution". Fab. There's even a euphemistically named "clock tower" which is blatantly an old watch post - it has the exterior balcony and everything. Way to make a girl feel welcome...

Anyhow, my doc was lovely. The appointment was surprisingly long, but apparently I definitely have CFS (whoop.) and to her credit she was good at explaining how they will be taking forward my treatment based on the idea that from an initial bad illness, I developed coping strategies which led to adverse mental side effects - e.g. Anxiety and low self esteem - which in turn impact on me physically. So it's a two pronged approach, focusing both on my physical health and my mental health. Makes sense to me anyway.

I also got a lovely diagnosis of co-morbid depression and anxiety. This was a bit of a 'no shit, sherlock' moment - after all, if you feel as crap as I have for as long as I have, it's bound to get you down. My new GP - who had arranged this referral - had put me on sertraline last October as the questionnaire she gave me indicated I was depressed. Well, I would rather stay on the right side of my docs so I went with it, despite some nasty side effects. Dry mouth and insomnia, par for the course. I can even -just about - cope with the horrendously vivd dreams where you wake up feeling like you haven't slept a wink. But it also affected me in a more personal area... Let's just say it's been getting very... Frustrating...

So, I asked the hospital doc if anything could be done about this. After all, the drugs had levelled me out emotionally a bit, but the side effects themselves were beginning to *really* get me down. After a fair bit of discussion with the pharmacist and that big book doctors always have which seems to be the bible of prescription drugs, they came up with reboxetine.

To fast forward a fair bit - I am now lying in bed, feeling pretty darn seasick, dizzy black spots whenever I stand up, and so decided to blog about it. Logical I know. Every symptom I have could easily be caused by this new drug - equally, I could have picked up any kind of stomach bug from being out and about yesterday. Who knows. I'm going with the 'more than coincidence' theory though. Anyway, I had a google of this new drug - and guess what: the latest, bmj published meta-analysis, suggests it's no better than placebo. And I'm a cynic, so I'm not great with placebos. But still - I'd rather put my faith in the NHS than in google, however mad that might seem.

So, this is going to be a record of my progress with this clinic and the various drugs. I also get to try GET - graded exercise therapy - the nemesis of inter web-based cfs support groups - so I figure it'll be interesting to see how I get along. For me anyway! I also plan to explore my new identity as a mental health service user - because I'm assuming I now fall into that category. Alongside all this fun, I'm also doing a masters, planning a wedding, and getting ready to bid farewell to my biggest source of support - my parents - as they head overseas for a spot of missionary work. No wonder the docs want me heavily medicated...

3 comments:

  1. Hiya,
    I enjoyed your blog, although I noticed you haven't written again since feb.

    Does this mean that you were 'cured' by the Reboxetine and are now running around getting on with life?
    or
    Does this mean you have fallen into the dark pit of 'relapse' which haunts us me/cfs sufferers?
    or
    Are you simply too busy doing your masters, wedding planning and looking after yourself to blog?

    I ask because I am starting Reboxetine and hoping that it helps give me more energy and lets me sleep. (seemingly contradictory outcomes).

    :) Kiwikchat

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  2. Ha, I should probably write an update, you are right!

    The reboxetine has actually improved my energy levels - that is to say, my energy levels have increased, but then the weather has also gotten warmer, I received increased support this last semester at university due to how much I was struggling the last, and I made an agreement with myself to severely curtail my social life, so who knows what did what.

    The horrible dizziness wore off after a day, the nausea is more of a problem although the doc says a) it could be also due to stress and b) that if I take the reboxetine with food it should be less of a problem. b) has helped but it's hard to break out of the cycle - i.e. you have to eat even tho your nauseaous(sp?) to stop feeling nauseous, so I'm not particularly successful with that, esp as I'm now on the two doses (one morning, one evening) and I find if I take it after 5pm it affects my sleep and who wants to eat at 5pm...

    I'm also a little suspicious, due to a) talking to a pharmacist friend and b) various other symptoms that have popped up that it might jsut be crazily overstimulating my adrenals so I am constantly expecting a huge crash, but other than a cold that left me in bed for a week (helpfully coinciding with an assessment deadline) crashing has not yet come and the wedding is now less than two weeks away - yay!

    So I guess mixed reviews from me, over all I'd say it's probably on the positive side, but I've also been trying to lie low re the me/cfs stuff as the docs' assessment of me as the 'type A' 'classic' CFS patient did make a lot of sense, and symptom-wise I am definitely towards the mild end, so I don't want to either cause problems for people who are more seriously unwell or attract unhelpful criticism from the hardliners who would say I don't have it either. I do feel a little bit out on a limb though! Hope some of this ramble helps in some way...

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  3. Reboxetine, also called as Vestra, 2-((2-ethoxyphenoxy)benzyl)morpholine methanesulfonate, exists as two enantiomers, (R,R)-(-)- and (S,S)-(+)-reboxetine. Reboxetine

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