all the world's a stage...

For the full story behind this, see this.

Days 11-19: Wednesday 5th - Thursday 13th October

With the start of term approaching, things had become busy. I was focussing on making progress with my project work- or trying to anyway.

My GP assured me that as a side effect, my jumpiness would subside over time.

While at the Medical Practice, I discovered something annoying: starting this month, there will a £10 charge to process Extenuating Circumstances forms - i.e. for my doctor to confirm that I’m not making up my illness/symptoms. I do concede that’s in line with what most GPs would probably charge for supplying similar forms of evidence.

Because I tend to think ahead, I usually put a lot of thought into graduate jobs. So, unusually for me, I hadn’t been thinking about it for a while because I’ve just become focussed on doing well this year. Yesterday I popped in to the SSE Placement/Graduate Fair for a bit. It’s mainly for Part 2 students looking for placements but I was on campus and I had some time to kill. I could be imagining it but it feels smaller this year. I’ve had my eye on FDM for a while now so I had a chat with them to get a bit more information. I’m seriously considering it as an option because it would be nice to gain professional qualifications and practical experience which I rather desire.

Freedom and flexibility

Still, it’s annoying because they never charged anything before to do these forms. Hopefully I won’t have to resort to Extenuating Circumstances forms at all this year. Yes, that’s what I think at the start of every year. I aim for it and hope it will be so. This year though, I really think it may actually be the case- but not because of the disincentive of a £10 charge per form. I think I’ll be able to get through this year without any ECFs because I have a lot more freedom and flexibility this year.

Yesterday I met the new “mentor” I’ve been assigned by the uni. There was a discussion on scheduling or pacing of work. which I believe is largely missing the point because my wellness/illness cannot be scheduled. All I can do is work around it. And to the extent that I can pace my working, I do that anyway already.

Now, the times that I’m feeling well there is nothing stopping me and I will plough my way through an assignment. That doesn’t mean I don’t know to take breaks or that I will overwork myself to the point of exhaustion. I’ve lived with M.E. long enough to know better. Something which they seemed keen to reiterate was that I shouldn’t leave things to the last minute. Well, duh! I would actually always aim for an assignment to be completed by 1-2 weeks before the deadline, at the latest.

The problem is that if I’m really not well then however much leeway I plan in, it still won’t be enough. Case in point: I should have fully completed a draft version of my UI design for my project but in the time that I would have done it over the summer (after resits), I haven’t been well enough.

They seemed keen that I have some sort of rigid schedule planned out on paper. That’s just not how I work- I literally can’t work like that. I have to be flexible because I have no way of predicting if or when I’ll be too ill to work. I will work as much as I can (within reason, of course) when I’m up to it so that I won’t fall behind when I can’t do any work. I prefer to plan fluidly. For a plan on paper to be fluid in that way, I’d have to keep revising it. It would just become paperwork. It would be a chore. It wouldn’t work.

If I miss deadlines, it’s not because I’ve not planned properly. It’s because I’ve been ill over such an extended period. No amount of planning will give me back time that I’ve lost to illness.

This year will be better because I only have two hours of timetabled lectures a week while the rest of the time I will be free to work on my project.

I’m not against scheduling. I guess I just haven’t found a way that fits my style. I can organise myself well enough. I just need enough flexibility to do it.

For the full story behind this, see this.

Day 9: Monday 3rd October 2011

Heatwave continues. Again not much to say here because I would just be repeating what I said the previous few days! (Too hot, can’t think!)

I noticed that I got a link wrong in the main article. Fixed it now. Not that it matters much because I doubt these posts have that many readers. I’m making these posts mainly as a personal record.

Day 10: Tuesday 4th October 2011

Definitely cooler today. Lovely autumn weather. Such bliss.

I can finally think properly. Finally able to develop my design for my project.

Have booked appointment with GP for tomorrow to ask about the jumpiness. Will wander around the Freshers Fayre (Fair?) too.

For the full story behind this, see this.

Day 8: Sunday 2nd October 2011

I was wrong. It was not cooler today. Well, it started off cool first thing in the morning but as the day went on it just got hotter.

I think I’ve noticed something that may be a side effect of this sertraline I’m taking: I seem to be quite jumpy these past few days. Just now I was in the kitchen and I jumped when a housemate entered from the hallway.

You’ll probably think you probably would have jumped too but the thing is, I usually wouldn’t - or at least not as much as I have been. Usually I’ll just notice and glance up at whoever is approaching and it doesn’t make me jump. I don’t know if maybe it’s because my senses have been affected somehow or I’m less aware of my surroundings or what.

I’ve never felt nervous or anxious and I’m not feeling nervous or anxious now. I’m sure I’m not developing a nervous disposition.

For the full story behind this, see this.

Day 6: Friday 30th September 2011

Heatwave continues. Not much to say here because I would just be repeating what I said the previous two days! (Too hot, can’t think!)

Day 7: Saturday 1st October 2011

It felt relatively cooler today than previous days. I say relatively because I was still roasting- it couldn’t have been more than a few degrees less.

Was to be able to concentrate slightly better because it wasn’t as warm- sertraline or otherwise.

All this time though I think the sertraline has been working at least somewhat because I’ve had fewer or no headaches. And normally, my problem with headaches is compounded by high temperatures and I would have a headache the entire time.

I’m falling behind so much with my final year project - i.e. I should have made more progress than I have by this point - but hopefully conditions will be more comfortable over the coming week and so be conducive to productivity.

For the full story behind this, see this.

Day 5: Thursday 29th September 2011

Can’t function in this heatwave. 

Still getting temperatures in the high 20s (°C). I think I’m starting to acclimatise at least so perhaps tomorrow will be better.

With my windows open, my door open and the fan on, I finally started finding the temperature tolerable. But it’s 11pm. Damn.

This is stupid. I have to work on my project and this heat is stopping me.

For the full story behind this, see this.

Day 4: Wednesday 28th September 2011

Today was horrible. But not because of the sertraline.

Apart from the initial reaction on Sunday when I start taking the sertraline, I haven’t had any adverse effects. Although perhaps it’s still too early to tell.

No, today was horrible because it was so hot. We were getting highs of 27 °C. I’ve always been sensitive to heat - I like it cool… bring on autumn/winter! - so this was not pleasant. Anyway, ended up being exhausted by the heat most of the day.

I hope it will be cooler tomorrow.

For the full story behind this, see this.

Day 3: Tuesday 27th September 2011

I actually missed my dose today because I got carried away with my new found wakefulness and went to sleep late, last night. I then got up today around 1pm. Was tired either because of that or because I missed my morning dose.

I know I shouldn’t have done it but I ended up having a nap in the evening. I woke up again at 4am and decided I should start my day because I have a lot of work to do.

For the full story behind this, read this.

Day 2: Monday 26th September 2011

Second dose this morning. I’ve been trying to work out whether yesterday’s apparent positive effects were indeed due to this sertraline that I’ve started taking. The scientist in me is mindful that it could have been a placebo effect- that I felt better simply because I had started taking something rather than due to any pharmacological effect. I doubt it though because my attitude was just that I would try it to see what would happen, without any preconceptions. I don’t know, is it possible to believe something and not realise that you believe it?

As it turns out, peak plasma concentrations of sertraline occurs anywhere between 4-8.4 hours - that’s combining the figures from Wikipedia (4-6) and other sources (4.5-8.4). That’s how long it takes for sertraline to reach its maximum concentration in circulation. So at 2-3 hours when I began experiencing nausea and higher temperature, I think it must indeed have been the sertraline starting to kick in.

Didn’t experience any side effects today so perhaps it was just the initial mild shock to the system of having slightly higher (read: normal?) serotonin levels. I’m guessing yesterday’s adverse reaction was just an initial reaction to the new drug entering my system. As sertraline has a half-life of 26 hours, this morning I will have had about half of yesterday morning’s dose still in circulation. So today’s dose was just to top up the amount of sertraline I have in circulation.

What might have been another side effect is that I had a little trouble sleeping last night but that’s nothing new. There are times when I frequently have trouble sleeping anyway.

For the full story behind this, read this. 

Day 1: Sunday 25th September 2011

I took my first dose this morning.

I actually got my prescription on Friday but the instructions are to take one in the morning so I had planned to take it yesterday morning but I overslept and it was about 1pm by the time I got up. But I had an early-ish night last night and insomnia notwithstanding, I was up early this morning and when I took my dose it was about 8:30am.

As with SSRIs in general, side effects can present when you first start taking them but they disappear or lessen as your body gets used to them. Being aware of this I was fully prepared, within reason, to endure any resulting side effects. What I didn’t expect was that they would hit so quickly.

Still, I guess it’s proof that the sertraline is having some effect.

Within 2 or 3 hours, I experienced slight nausea, increased temperature and I believe, increased heartrate. I was a bit light headed and went for a lie down while I checked the list of side effects on the package leaflet. For a moment I thought it might have been a case of Serotonin Syndrome and was about to call NHS Direct, but after some thought I decided this was unlikely because I was only exhibiting a few of the signs, and only mildly.

Another 2 or 3 hours later I was fine.

I do now feel more alert and my thinking feels sharper, more like how I am when I’m not in a relapse. It could be a placebo effect- that’s possible. Maybe it’s because I went for a lie down- very unlikely as that’s never done anything for me before. Or perhaps the SSRI may be may actually be working as hoped and the hunch was correct.

Time will tell.

Background

I was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalopathy) at the start of 2010. Not so long after, I wrote a somewhat long post discussing what I was going through and what my plan was.

That was during my temporary withdrawal from my course for the 2009-2010 academic year. Since then I’ve attempted to complete the last year of my degree on a part time basis. This past year, the first half of my final year, has been far from satisfactory. I’ve been plagued by constant headaches, incapacitated by the fatigue and for much of the time found it impossible (or at least very difficult) to concentrate.

I’m due to begin the other half of my final year in a week’s time -well, two weeks in earnest but I use freshers’ week to settle back in. There’s a lot riding on this year. Things are serious. I need to be able to perform at my best, so I must not have a repeat of last year in terms of symptoms.

The Serotonin Experiment

…because all else has failed. Or rather, I should say that all else according to the NICE guidelines has failed. I’ve looked. It basically recommends a combination of CBT (Cognitive Behaviour Therapy) and GET (Graded Exercise Therapy). I was really hoping to be put on a programme of GET but that’s not available in my area.

29/09/2011 Edit: Have been doing some reading and actually after further consideration, in a way I’m glad I’ve not been signed up for GET. CBT may not alleviate any symptoms but at least it won’t make me worse either. To be honest, neither GET nor CBT do anything to treat the underlying causes of my condition. At best they are simply coping strategies. At least in my own endeavour to boost my serotonin levels, I’m seeking to put right something that research suspects ME has caused to go haywire - i.e. caused low sertonin levels.

So officially, all I have available to me is CBT. It may or may not be helpful in some way down the line but I’ve yet to hear back as to when my first appointment will be. But however helpful it is, it will do nothing to alleviate the actual symptoms (the CBT practitioner at the assessment concurred).

So I’m faced with having to endure the constant headaches, fatigue and difficulty concentrating. Those are the main three symptoms for me anyway, other sufferers of the condition, your mileage will vary.

My GP hasn’t been particularly forthcoming in terms of recommending possible treatments or medications beyond referring me to the regional CFS service as per NICE guidelines. Something needed to done and it needed to be done now because I need to be completely on the ball this year. I’m thinking in terms of last resorts and I will to try anything that might help alleviate symptoms and help me not fail my degree due to the illness.

I’d done some reading and found research suggesting that a feature of CFS is low serotonin levels. I’d been given the SSRI fluoxetine before and tolerated it well enough with minimal side effects. SSRIs are normally used as antidepressants but have other applications too. Let me reiterate that my symptoms are not the result of clinical depression and nor am I currently suffering from depression. For good measure, a quote from that article:

It needs to be emphasized that these drugs are helpful not because patients are primarily depressed (although depression may occur as a result of the illness), but because they often have low levels of the neurotransmitters serotonin and dopamine

There were other sources too but this one was the most concise. So based a hunch I went to the GP to ask about taking an SSRI to increase my serotonin levels. I was confident that I could get the go ahead because I was no stranger to SSRIs so we’d already knew that I would not react badly to it. As it turns out, my GP was very amenable to the idea saying that treating CFS was often a matter of trial and error so it was worth a try.

The Serotonin Experiment has begun.

I’m going to try to keeping a diary as I work my way through my 4 week supply of sertraline. It’ll be helpful in monitoring effectiveness and who knows, maybe it might be of help to someone else. I’m going to file all these entries under the tag “serotonin experiment” so if you’re only interested in reading about this then click/bookmark this link. [Link fixed!]

Update:

Day 01  |  Day 02  |  Day 03  |  Day 04  |  Day 05  |  Day 06  &  Day 07
Day 08  |  Day 09  &  Day 10  |  Day 11 to Day 19  |  Day 20  |  Day 21
Day 22  |  Day 23  |  Day 24  |  Day 25  |  Day 26  |  Day 27  |  Day 28 
Epilogue

Links:

• Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011 - PDF of short version.
• An analysis of the above: 10 Things I love about the International Consensus Criteria for Myalgic Encephalomyelitis