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Starting Gabapentin all over again!

Just got back from the GP for a medication review.

Discussed my lack of response to Gabapentin - which I quit after a month, for that reason.

I knew that my neuro had placed me on a very small, “beginner’s” dose - just 100mg 3 x a day. However, he had not explained to me the procedure, should I fail to get a response at that dose. I only got a copy of his letter to my GP, saying that he would be grateful if she would raise the dose as necessary, AFTER I’d already quit.

So when I spoke to her this morning, she wasn’t at all surprised it did nothing, as she says that was a very tiny dose, and she would normally start people at three times that (after a bit of weaning on) - i.e. 300mg 3 x daily. So on that basis, she thinks it wasn’t a fair trial, as it was too small to do anything, and that I should begin again, but this time weaning UP to 3x300.

OK, I suppose no harm done, in the grand scheme of things, but I’m a bit peeved that I’ve done - in effect - a pointless trial for a month, and that if I’d been told how soon and by how much to go up if it didn’t work, I could have experimented with that myself!

In fact, the doctor has not written a new prescription at all, but just described to me verbally how to titrate the dose, with the tablets I still have, and left it to my commonsense to come home and do it! She says that IF that works out OK, arrange a telephone consultation when I’m almost out of them, and she will do a repeat 'scrip for a higher dose, so I don’t have to take as many pills. All sensible, but if my GP is trusting to verbal advice, and that I won’t screw up, the neuro could have done the same, instead of leaving me to give up in disappointment, when such a titchy dose didn’t work. So it’s really quite odd that the GP is saying without hesitation: “Oh, it wasn’t enough: Go up!”, when the neuro could have left me that option himself.

Anyway, in better news, to my unending surprise, my blood-pressure is absolutely fine - so I can continue taking the mini-pill, which I am not using for contraception, but to limit symptom flare-ups linked to my monthly cycle. Also got the go-ahead to run two packs back-to-pack (which I’ve secretly been doing anyway sometimes), for half the number of periods! Yippee!

And I finally got my flu’ jab done. I do find it varies, depending on who’s doing it, but this nurse was so super-slick I barely felt it, and afterwards couldn’t find the puncture wound! I’m just slightly aware I’ve had it, as the muscle is starting to feel a little stiff two hours later, but what a neat job - there wasn’t a spot of blood. I’m sure I’ve come out holding cotton wool over it in the past. So hopefully one less worry this winter.

Feel absolutely knackered now - one visit to the doctor does me in (but have walked 30 minutes total as well). But quite a positive morning, I thought.

Tina

x

Cheers folks!

Moyna, the common weight-gain side effect was one of the reasons I’ve been reluctant to try for so long. Not just out of vanity, but because if I’m tired all the time, and have aches and pains, lugging extra weight around would obviously not help matters.

It was suggested for intractable foot pain on the tops of my feet. But to me, the pain feels muscular. I’m 99% sure it’s related to cramp/spasticity, as it feels just like a cramp, except that it’s permanent, instead of discrete attacks. But I do get actual cramps, on top of the ongoing pain, and they strike at exactly the same place, and are like an extreme version of the same thing.

Baclofen, diazepam and quinine all afford some relief, but their effectiveness has diminished over time. Sadly, I feel it’s not a case of tolerance, but that the pain has actually worsened.

So I agreed to Gabapentin more in desperation than hope, as although the pain is not disabling (yet), I’m getting really miserable with it being so constant. It’s not excruciating, but neither is it mild enough to ignore. It’s a constant reminder I’m not well, and is intrusive enough to disturb sleep at night, and concentration during the day.

So to say I’m fed up with it is putting it mildly.

My GP seems quite interested in the mechanics of pain (think she’s been on a course or something), and she says that even if I’m right that it’s predominantly muscular, longstanding pain does induce neural changes that increase sensitivity to it, and she thinks it’s possible Gabapentin may interrupt this vicious circle.

She’s firmly of the belief that just living with pain does NOT eventually increase your tolerance of it, as many people hope, but instead, encourages the CNS to be more finely-tuned to pain, so you notice it even more! So she is always in favour of intervening, and not letting it take hold. Despite not being fully convinced about the Gabapentin, I’m getting desperate for something to work!

Hope it was OK to mention your name here, as I don’t think you intended to go anonymous.

Tina

xx

Hi Tina, I dont know how that went annonymous I am sure I didnt click it. Anyway I also sometimes get pain on the top of my foot. My physio says that the muscles on the front of my foot are working so hard to keep my foot up. Essentially they are having to work so hard against the calf muscles that are trying to pull the foot down. I have functional foot drop which is caused by spasticity in the calves. When out walking if I use the footup brace then the pain on the top of my foot is less probably because the muscles on the front of the foot have a little help.

Moyna xxx

Interesting you should say that, because just after I was diagnosed, a private physio noted that I do have foot drop. I think it was possibly the reason I did not have any problems with the “ongoing disability” clause of my insurance policy, because they accepted the foot drop as enough.

But the funny thing was, I was not consciously aware of it - as in tripping over my feet or anything - and still am not.

So it may be that I am working very hard to pick my feet up, and this is partly responsible for the pain, but I’m simply not conscious of doing it, because it’s a coping strategy that has evolved very gradually, over time, so I’ve never noticed. I was completely surprised to be told I had foot drop - as well as a weak left ankle, apparently. It seems I must have adapted not to notice.

Tina

xx