I'm new to this forum and am desperate for some help and don't know where else to turn.There may be posts here already that would be useful to me, but having tried to read up myself I've become so overwhelmed that I don't know where to start, so I would really appreciate any guidance from fellow ME sufferers.
I was diagnosed with ME/CFS (Canadian criteria) in 2007 after falling ill during the winter of 2006. At the time I was almost housebound, and over a 12-18 month period of strict pacing I was able to return to work and have been mostly managing since then, albeit difficult to do much outside of work. During 2007 my GP put me on 20mg of citalopram a day, which was mostly because I had hit a wall in recovery and was struggling emotionally with the impact of the illness on my life.
I have wanted to come off citalopram for a while, and around 2009/2010 I did reduce the dose to 10mg a day for about a year, but stress in my job meant I decided to return to 20mg again. I finally started coming off fully it in February 2012. The decision was two-fold, it has severely affected by libido which I am no longer prepared to put up with, and also my husband and I are thinking of starting a family. My GP advised it is dangerous to be on it during pregnancy.
It took me to around October to slowly reduce the dose of 10mg a day (the lowest I'd been on) and each time I reduced the dose (and I was doing it very slowly) I had quite severe symptoms of shaking and dizziness. I felt I was doing fine, but during the onset of winter I began to struggle and then was hit by a 3 week flu virus in December which has knocked me right down to the worst I've been since I was originally ill.
Whilst I've been recovering slowly other the past few months, I've now hit a bad wall and am struggling. In particular the worst symptoms seem to come from my head; mostly dizziness, pressure and disorientation. My blood pressure is usually fine when I see my GP. I haven't been tested for POTS; so far my GP is extremely unhelpful with the dizziness and keeps sending me away.
I've started to wonder if part of the problem is that I'm now only on 10mg of citalopram every other day, and perhaps the drug is actually helping in other ways to the mood? Would increasing the dose again help? I really would rather not do that if there were other ways to try but I need to do something.
The problem is that at my local surgery, the four GPs I have seen all believe ME to be psychological and told be when I had flu to just increase the antidepressant dose and I'd get better again. I therefore can't ask them to suggest alternatives to antidepressants that I can try to help with the ME symptoms and need to present ideas/research to them instead. I'm not depressed and my mood is fine (except for when I have very bad days just like anyone else).
Does anyone have any experience in what other effects the citalopram may be having, and also what alternatives I could try to help reduce the severity of the dizziness and pressure in my head? I'm getting to the point where it's becoming unbearable and I just don't know how to cope with it anymore. I'm also struggling to keep working at the moment, having to rely on taxis to get me to work and back (I used to get a bus and then a short walk the rest of the way - driving isn't an option) and even then collapsing for the rest of the day and the whole weekend.
And if you've got to the bottom of this, then thanks for reading though!
I was diagnosed with ME/CFS (Canadian criteria) in 2007 after falling ill during the winter of 2006. At the time I was almost housebound, and over a 12-18 month period of strict pacing I was able to return to work and have been mostly managing since then, albeit difficult to do much outside of work. During 2007 my GP put me on 20mg of citalopram a day, which was mostly because I had hit a wall in recovery and was struggling emotionally with the impact of the illness on my life.
I have wanted to come off citalopram for a while, and around 2009/2010 I did reduce the dose to 10mg a day for about a year, but stress in my job meant I decided to return to 20mg again. I finally started coming off fully it in February 2012. The decision was two-fold, it has severely affected by libido which I am no longer prepared to put up with, and also my husband and I are thinking of starting a family. My GP advised it is dangerous to be on it during pregnancy.
It took me to around October to slowly reduce the dose of 10mg a day (the lowest I'd been on) and each time I reduced the dose (and I was doing it very slowly) I had quite severe symptoms of shaking and dizziness. I felt I was doing fine, but during the onset of winter I began to struggle and then was hit by a 3 week flu virus in December which has knocked me right down to the worst I've been since I was originally ill.
Whilst I've been recovering slowly other the past few months, I've now hit a bad wall and am struggling. In particular the worst symptoms seem to come from my head; mostly dizziness, pressure and disorientation. My blood pressure is usually fine when I see my GP. I haven't been tested for POTS; so far my GP is extremely unhelpful with the dizziness and keeps sending me away.
I've started to wonder if part of the problem is that I'm now only on 10mg of citalopram every other day, and perhaps the drug is actually helping in other ways to the mood? Would increasing the dose again help? I really would rather not do that if there were other ways to try but I need to do something.
The problem is that at my local surgery, the four GPs I have seen all believe ME to be psychological and told be when I had flu to just increase the antidepressant dose and I'd get better again. I therefore can't ask them to suggest alternatives to antidepressants that I can try to help with the ME symptoms and need to present ideas/research to them instead. I'm not depressed and my mood is fine (except for when I have very bad days just like anyone else).
Does anyone have any experience in what other effects the citalopram may be having, and also what alternatives I could try to help reduce the severity of the dizziness and pressure in my head? I'm getting to the point where it's becoming unbearable and I just don't know how to cope with it anymore. I'm also struggling to keep working at the moment, having to rely on taxis to get me to work and back (I used to get a bus and then a short walk the rest of the way - driving isn't an option) and even then collapsing for the rest of the day and the whole weekend.
And if you've got to the bottom of this, then thanks for reading though!
