‘Progress’ with medication

Ah, the scare quotes are too cynical. Progress is being made even though it doesn’t feel much like it at this precise moment

I’ve halved my dose of Pregabolin from 600mg to 300. I’ll stick at this dose while the pills last (a month) then down to zero.

I have noticed three things:

  • The pain is bad, even by my usual standards. It is very, very bad and in new and exciting ways
  • I’m learning to extend my usual defences and I’m slowly, slowly starting to think I can probably get on top of it in time
  • The fog I’ve been thinking through for a year is clearing already

That last point alone makes me feel it’s worth it, even though I’m resigned to never being free of this pain and never being able to fully relax my defences. I’m starting to feel a lot more like me and more aware and creative than I have in a while.

I’ll write about what I’m doing to control pain – or at least my response to it – another time. Any and all suggestions are very welcome, but don’t be upset if I’m skeptical. it’s my default setting.

NOTE: I am not anti-pain medication and nor should anyone else be. I couldn’t have coped so far without pain medicine. I’m stopping because I think this particular medication is not right for me at this time. I do not encourage anyone else to do the same and certainly not without consultation with the appropriate medical professionals.

Medication, that’s what you (hopefully don’t) need

After consultation with my physios and GP, I’m weaning myself off my current medication. I take Pregabolin, a nerve blocker, for neurological pain. The pain is very bad, unbearable at times, and is constant. It comes in several varieties. It’s worse and more debilitating than my actual disability.

But the Pregabolin, like the similar, older Gabapentin I took previously, has side-effects I like even less than the pain and it doesn’t seem to give much relief anyway. Those side-effects are:

  • Violent and indescribably painful muscle cramps, coming in irregular bursts lasting for around an hour, twice per day.
  • Tremors, which occur with only one noticeable pattern: whenever fine motor control and digital dexterity are required.
  • Cognitive impairment: at various times throughout the day, I find concentration extremely difficult and both mental capacity and agility drastically reduced. I also find myself searching for words and losing track of sentences by the time I get to the end of them.
  • Quite severe anxiety resulting from the cognitive impairment. More, in fact, than can be explained by my frustration and concern. Anxiety that is dramatically out of proportion with what I’m anxious about.

Those last two are dealbreakers for me. I can’t function normally, I don’t seem like myself and the loss is a far greater disability than my loss of mobility.

So I’m coming off the drugs. There are a few others I might try, but first I’d like to get a baseline to see how well (if at all) I can cope without them. I’d need to wean myself off the Pregabolin before I could start on any of the others (Duloxetine and Carbamazepine have been suggested) anyway, so I’ve little to lose. Hopefully, I’ll be able to cope reasonably well and live without any drugs at all. We’ll see.

There should be no significant withdrawal effects from the Pregabolin, but I expect the pain to hit me hard. I use various mindfulness and centreing techniques to keep the pain at bay, but I’m expecting some unpredictability at least until the drugs are out of my system, which will make that stuff challenging. I’ve been prescribed a month’s supply of Pregabolin at a lower dose and then after that, I’m on my own.

I expect I’ll write about how it’s going. Expect some swear words, real and imaginary.

Note: I don’t recommend that anyone come off any prescribed drugs whatsoever, unless they have an overwhelming desire to do so, have consulted with their doctors and have a coping plan. Also remember that if you do decide to come off prescribed drugs, you can always change your mind later.