I’m still worrying about taking Clonazepam long term. I’ve tried Ropinirole (for one night, already posted about this), just wondering what else people have tried. I think I had suggestions of Magnesium and Quinine. Have people done well on these? Any side effects? Any other good drugs that people would like to recommend?
I should have said, I’m looking for drugs to help with my legs twitching at night and waking me up.
I was on clonazepam a few years ago to alleviate leg spasms. It didn’t suit me at all. Seemed to be in a daze all day and felt unsafe to drive. So, I stopped after only two weeks and found I was already severely addicted. Had to take the drug again and stop slowly. It took me a horrendous three or four months to stop, eventually going ‘cold turkey’!
Anyway, I now take a magnesium supplement and rub magnesium oil into my calves. I recently started drinking a small can of Indian tonic water at night (with gin!). All this seems to help. The leg spasms are less frequent and much less severe.
I’m on nightly diazepam - same class, same issue. My neuro didn’t know anything about the possible link with dementia.
I have decided I am not going to do anything about it, because (a) the relief I get from it is too significant to give up, and (b) the data was inconclusive about whether any links were causal, or whether people with early, undiagnosed dementia are simply more likely to have symptoms for which they are prescribed benzos!
In an ideal world, it’s not great for me to be taking any of this muck, but it’s not an ideal world; I got sick, and have symptoms that need controlling.
Everything I’m taking has risks. I’d give them all up tomorrow if I thought life would still be tolerable, but it wouldn’t be.
I did take magnesium supplements for quite a time, but ran out of them a few weeks ago, and somehow never got round to replacing them. I’ve noticed absolutely no difference, so was probably wasting my money there (I don’t find the magnesium oil does much apart from sting slightly, either).
I am on quinine, which has helped to some extent with cramp and cramp-like pain - but that is not quite the same problem you are having. Also, I do not think the quinine would be sufficient on its own, without the baclofen and diazepam I also take. I don’t think any of it would work on its own (maybe for some people, but not me). Sometimes all of it together only half works, but I’m sure it’s still better than if I didn’t take anything at all.
Some or all of these drugs probably will have some long-term health-effects, but I don’t know if they are any worse than MS will do anyway, eventually, so I don’t know if it’s worth worrying about. I don’t want to live to a very old age if the price is untreated pain for years, so when looked at that way, I don’t feel there’s much of a choice.
Being woken up in the night is a tougher one. Are the twitches painful? If not, I’d be considering whether I could learn to put up with them, but I’m not so stoical when it comes to pain.
Not at all painful, I just don’t want to be lying awake at night with my legs twitching. I’m going to have another try with the Ropinirole tonight. I’m a bit puzzled as to why so few people with MS are given this. Would love to hear if anyone’s been told something about it.