all the world's a stage...

For the full story behind this, see this.

November-Present

Things have got pretty bad. Towards the end of November I was seeing the GP repeatedly, trying to get him to give me something to stop me being so debilitatingly tired all the time.

The only thing he was willing to offer was to increase my dose of sertraline from 50mg to 100mg- because I found that the 50mg dose seemed to stop me getting headaches as much or as often, so maybe increasing the dose might help in other ways.

I repeat, while it may be an antidepressant I was not taking it because I was depressed, but rather I was taking it because it seemed to help with my headaches- which is one of the symptoms of my ME. Something is better than nothing, I figured, so I agreed to the increased dosage. 

As I went through this new packet, I didn’t find that I was getting any additional improvement from the increased dosage.

So I’d take one pill a day but sometimes I’d miss a day but as I’d still have boosted serotonin levels in my system, I could just top up the next day and carry on as normal. Thus, it would be one tablet a day or at least one every other day. No big deal.

But as my condition seemed to take a turn for the worst, there would be more and days that I’d lose to sleeping because I’d be so tired and that was all I could do. This eventually led me to missing more than one day at time. It was at this point I realised that this was not working. Because on the second day without sertraline, I got the mother of all headaches.

It occurred to me that I was locking myself into a drug that provided minimal benefit which if I ever stopped taking, there would be a small bit of hell to pay. If I was benefiting more substantially, then it would be a different story. I’ve concluded that I would rather risk the occasional headache without sertraline than the guaranteed mega headache if I were on it and discontinued it.

I think I’ll see how things go without sertraline. Going onto 100mg tablets was counter-productive. If occasional headaches become a problem, I’ll consider taking a low dose as a prophylactic but otherwise I think the SSRI angle is a dead end.

Damn.

What I’d really like is for the doctor to let me try something else. Screw the “official guidelines”. Given that there’s no cure for ME/CFS anyway, lets forget about the diagnosis for a moment and focus on alleviating the actual symptoms. What I’d like is to be able to take something to fight off the constant tiredness and need to sleep.

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, 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