Hi everyone, I am writing this to try to get some order to the disorder that my brain has become. I'm feeling so sad, angry frustrated unloved, alone, 'oh what's the point', which bit can I hurt next. etc etc.
I'm so cross that after 15 years of RL I'm now at the stage where no one knows what to do next. I started with levodopa and that didn't do much so hey, let's add sifrol, and hey, that didn't work for long so lets add more of it, and then hey, if that didn't help much, lets add gabapentin and then more and more of that, and eventually when it becomes obvious- not by the neurologist but the support of the wonderful people on the forum, that I was augmenting on the sifrol/pramipexole, and possibly the tramadol and that the gabapentin was at such a high dose that over half that dose was probably not doing much good anyway except possibly wrecking my body; then lets remove all these drugs and see where we are then.
I tried fentanyl to no effect and the dose of Targin which gave some relief and some sleep my GP thought was too high (30 mg as suggested by Dr B) and therefore wasn't going to allow me to continue on it. Now he's prescribed clonazempam 2mg at bedtime which certainly has helped with sleep (I was going for 4 nights out of 5 or 6 with NO sleep at all and my job is on the line,) though now it's waking up that the difficulty!
Easier said than done! I've reduced the gabapentin to 400 mg, tramadol to 50 mg as required though not sustained release, no pramipexole, no baclofen (though what that was added for at all is beyond me (and Dr B!) ) In fact, I'm left high and dry with almost nothing/no-one to support the awfulness of life at the moment. I've taken the last dose of the SSRI I was on for 20 years and suffering from head-shocks but not intolerable, having decreased to 1 mg per day from 10 - 20 -over the years depending on circumstances and boy, there have been some hellish times that I've had to deal with.) I'm often in tears, feel very frustrated and angry, wanting to throw things, hopeless and wondering what the point of anything is. Usually, I'm very placid, the glass is always half full- at least, I'm kind and I'm thoughtful of others. I'm creative and love beauty and try to bring the same into other people's lives. Now though, I'm close to tears all the time, and wonder what the point of all this is.
I have my daughter who lives with me who suffers from Asperger's. severe OCD and eating disorder and has done for 20 years, and I want to protect her has much as possible from the roller coaster that my life seems to have become.
I need to be clear of the SSRI for a wash out period of ??? days/weeks before I can go back onto something else. goodness knows what that will/can be, I want to work out how much if any gabapentin I need if in fact it is helping my RL at all. I want to sleep but not at the expense of losing half the day. And I don't want to crying all the time or angry or wanting to throw things. and above all, I hate feeling sorry for myself like I seem to be doing.
I'm continuing with my meditation practice as that seems to bring some semblance of serenity to my life, even if it's just while I listen to the soothing voice of the presenter.
I'm on a waiting list to see a haematologist to try to increase my ferritin levels. I was on 75 and in spite of over 6 months of oral iron, am now only on 78. Given the public health system here, it could be a year before I actually get to see one, even if she agrees to support the request for an iron infusion.
I have read and re-read the info on the forum and wish I could magic some answers. I'd like to try methadone or try some cannabinoids but the chances of obtaining those are as likely as flying the moon.
Sorry to be so negative. I just had to let off some steam and I guess have some feedback that may offer some hope or understanding.. and maybe the feeling that I'm not as alone as I feel.