I have had trigeminal neuralgia since July 2015 and I’ve been on and off medication for a while. I went into a period of remission in April 2016 and stopped taking my medication ‘cold turkey’. That is definitely a blog post for another day. That is the most difficult thing I’ve ever put my body through and I don’t think I would do that again!
In June 2017, I went back on my pain medication, after surviving just on Zapain for over a year. I took myself down to see my GP and stocked up on amitriptyline and pregabalin and started from square one. It felt like the biggest step backwards and the side effects felt even worse the second time around.
I am tired. I am so so tired. I’ve never felt fatigue like this. I’m also aware that I am so heavily reliant on my amitriptyline to sleep. When I’ve missed a dose due to sickness, I’ve been completely unable to sleep without it. I really think I’d rather brave the pain again than cope with the side effects of my medication.. for now at least.
So, before I start the dreadful task of coming off my medication again, here are my top tips from the last time (that I absolutely must not forget) for anyone else who is deciding to brave the pain too:
Speak to your GP. Do not do what I did the first time. I’d had enough of my medication and I just stopped it all at once. I know it’s really tempting, but I had the most awful withdrawal symptoms and it made me so sick! Speak to a professional, get the advice you need before you start.
Take it slowly. Really, really slowly. I’m currently on 40mg of amitriptyline and I’ve recently read online that some people were struggling to drop from 10mg to 5mg. It makes it even more worrying that I dropped from 40mg to nothing two years ago. This time, I’m planning on dropping by 10mg a time and really dragging it out.
Tell a friend. Last time I thought I could do it alone, with no support. This time, my fiance has been given some warning and now he’s there to support me.
Remember your reasons why. Sometimes it will be really tempting to take another tablet, to just make you feel a little bit better again, to make away the insomnia or the sick feeling.. or even the cravings! But remember your ‘why’, remember the reasons behind wanting to stop the medication. My ‘why’ is that I want my energy back and I want to feel like myself again.
And finally, the one I don’t really like – understand that coming off or down on medication may only be temporary. I was gutted when I went back on my medication after a year off it, but now I understand that I’m going to have periods of remission and I’m going to be in too much pain to handle sometimes too. I’ll probably be on and off medication for the rest of my life, but I will take this as a learning curve, for this time and next time and the time after.
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