Dark night of the soul on Ropinirole

Everyday living
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I hardly slept last night (maybe two hours) after taking Ropinirole for twitchy leg last night and Fampyra for walking problems in the morning. So much for my good idea for replacing Clonazepam with Ropinirole. I might try Quinine as a replacement next because I find it so hard to give up.

In the night I was thinking of all the people who think I shouldn’t worry about the risks of dementia that come from taking Clonazepam every day. Really, they’re right aren’t they? The effects of my quite advanced MS are going to kill me before I’m old enough to get dementia. Probably I’m going to kill myself when I can’t bear to carry on because I’m so disabled. There’s not going to be a cure for MS soon enough to help me and I’m bothered about Clonzepam when no-one else is because I’m stupidly optimistic and not living in the real world. Dark thoughts.

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Hello Sewingchick. Was clonazepam working for you? all drugs have side effects. My husband has been taking temazepam for years for bipolar ( manic depression) because sleep is essential with this condition. The alternative doesn’t bear thinking about. Take a look on www.patient.co.uk regarding ropinarole, that too has some interesting side effects. Sorry, I can’t do paragraphs, I’m on my mobile x

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Have you tried taking magnesium to see if that can help? I find 375mg does the trick and it greatly eases problems with spasm and cramp too. Of course, you might have to experiment a bit before finding the dose that suits you, but it is a beneficial mineral and worth trying before the more serious drugs.

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I hinted at it before, but it’s worth mentioning again: correlation is NOT causation.

They have yet to establish whether prolonged benzodiazepine use actually caused higher incidence of dementia, or if there are other factors that explain both. It’s thought that (a bit like MS) dementia is often diagnosed years after first onset. So, rather than being a warning of the perils of benzodiazepines, could these findings be an intriguing insight into the types of early problem people are going to the doctor about, many years before dementia is diagnosed, or even suspected?

I know you will argue that if they do go on to prove it, by that time it will be too late. You’ll wish you’d stopped taking them as soon as there was any hint.

But even if it was proved there was a causative link, it wouldn’t mean everyone who takes benzos for a prolonged period would go on to develop dementia. It would just be an increased risk. If I’m not mistaken, pretty much all drugs (not just those for MS) carry an increased risk of something or other. There is no such thing as a 100% risk-free drug.

So exactly how miserable to you want your life to be, in the cause of risk minimisation? And is it worth it?

I have a pretty conservative approach to drugs - I always have. I’m very risk-conscious. But even I am not going to rush to quit a drug that helps, unless I see a lot firmer evidence that it is the cause, and not just an intriguing correlation, that might lead to a breakthrough in our understanding of the earliest signs of dementia.

And if it does increase the risk, then by how much? If it turns out to be 1% or something, I’ll take the chance. Dementia is indeed a terrible thing (a friend was diagnosed this year). But MS is pretty horrible too. Too horrible to struggle along without the things that help.

Tina

x

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I’m trying to cure the sleeping problems as well as the twitchy leg problems. From experience, I’d say that even half the recommended dose of Fampyra keeps me awake at night, even if my leg is not twitching and waking me up. The Fampyra makes my walking better. Clonazepam is a sleeping drug as well as a anti-twitch drug. I was hoping that Ropinirole would help me sleep as well as stopping the twitching. It stopped the twitching but I was awake for a long time last night.

I’m OK again now. Just articulating on here that my reason for wanting to stop the Clonazepam - that I think there’s going to be a cure for MS soon - made me realise how ridiculous that is. I don’t need to worry about dementia. That’s an upside of having advanced MS.

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Have you tried ldn at all, i havent but read as much as possible and looking at the facebook page people claim it helps with many ms ailments xx

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I was on it for three or four years. My health took a sharp nosedive in that time.

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There is another take on this:
Fampyra functions by facilitating the transmission of an impulse down a nerve fibre.
While this can improve walking for about 10% of the people who try it, this means that it improves the transmission of an impulse down EVERY nerve fibre. That will include the ones that make your legs twitch.

If you look at the side effects of Fampyra - the one that leaps out is “sleep disturbances”.
It may be - note the “may” word - that you will have to trade better sleep for better walking.
Of course, Clonazepam has a list of side effects as long as your arm (not just “sleep disturbances”)

The big general problem is that while the pharmacists can look in the BNF and see that drug A has no reaction when taken with drug B, there is no information on what happens when you take drugs A, B, and C all in the same day.

Probably, you will have to work out which side effect(s) are the worst ones for you and which drug-induced benefits are best for you, and decide on the best all round package.

But do keep us updated.

Geoff

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I’ve worked out that I need to choose between walking a bit better and sleeping properly. I’m thinking I’ll take the Fampyra sometimes, but most days I won’t take it because sleep is more valuable to me than walking improvement. Totally aside from this, I will carry on taking the Clonazepam without worrying about dementia. I’m not going to make old bones and I love the undisturbed-by-leg-twitching sleep I get on Clonazepam.

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Well done for making the best decision for you, I always think it’s about the quality of life now, not what might be years in the future.

Jan x

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For Tina - I only just read your post and wanted to reply to it. I’m a pure mathematician, rather than a statistician but I have done some stats in the past. The study about benzos in the BMJ was big (1796 people as cases and matched with 7184 controls) and seemed well-designed to me. The academics that did it were specifically trying to avoid including people who were being prescribed benzos because they had symptoms of dementia. Their findings suggest benzo use of more than a few months increases the risk of dementia by 1.82 i.e. gets near to doubling it. I thought that was a bad thing to have in my life - but now, I think I was being unrealistic about the future and it doesn’t matter.

After my experiments with Ropinirole, I am going to stop worrying about this. You and Janhhh are both right that what’s happening right now is more important than a hypothetical future.

Ropinirole has been horrible for me - walking worse and bladder control much worse. Weird and interesting but I’m going to stop messing with my drugs for now.

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Whilst I don’t dispute the findings, I still feel the evidence of causation is missing.

What were these people being prescribed benzodiazepines for? Obviously, there must have been some sort of medical problem, even if not one conventionally associated with Alzheimer’s. But what if all it means is there has been a gap in our understanding of what the early symptoms might be, and it just so happens they are exactly the type of thing for which benzodiazepines are commonly prescribed?

I am by no means an expert in Alzheimer’s/dementia, but cannot help taking an interest, given that a friend was recently diagnosed. And I do know that anxiety and sleep disturbance are common. Both problems for which a prescription of benzos might be considered - even in patients not known or suspected of having Alzheimer’s. So I find it difficult to see how the study could effectively rule out patients with symptoms that might already be linked to Alzheimer’s, unless they limited it strictly to patients who were only prescribed benzos for purely muscular problems. Whilst that is a possible grounds for prescribing, I do not think it is the key reason, outside the MS population. So it is likely most patients had anxiety, or sleep disturbance, or both.

I am sure if you analyse a group of people with anxiety or sleep disorders, more of them will progress to a diagnosis of Alzheimer’s within the next few years, than a control group without these symptoms. I’m not suggesting causation here either. Obviously it is possible to have anxiety or sleep disturbance in isolation, without it being a portent of Alzheimer’s. But in some cases, it may be an early sign. So that would explain why people being actively treated for anxiety or sleep disorders do have a significantly higher “risk” of Alzheimer’s. It’s not their treatment that is raising the risk, but that their symptom profile already places them in a higher risk category.

Anyway, for what it’s worth, I think you’ve made the right decision. As someone else has already said, quality of life NOW is important. No, it’s not the only consideration, and ultimately, everything is a weighing up of risks and benefits, but we don’t always have the luxury of saying no to things that may (not will) cause problems further down the line.

I dread to think what my poor liver and kidneys think of all the stuff that’s getting thrown at them. I fully expect them to rebel at some point. I won’t say I don’t worry about it, because I do. But on the other hand, none of us are going to live forever, no matter what we do about it, so I can only hope to strike the right balance of staying as comfortable as possible, for as long as possible. I went without symptom relief for a long time - not out of choice, but because I wasn’t diagnosed, so nobody, including me, realised I had settled for quite a poor quality of life, without ever considering it might not be “normal”.

Of course, once I realised it wasn’t normal to feel so bad, and that all my friends weren’t feeling the same, I understood at least some of it should be treated. Of course, things have moved on a bit since then (not in a good way), so I probably couldn’t make do without symptom relief now, even if I wanted to. In return for some relief, I have had to accept some risks, but I don’t want to go back to my own personal Dark Ages of living with untreated pain and accepting it as normal.

Tina

x

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The way the study was done was looking at people who were prescribed benzodiaziapines between 10 and 6 years before they got a diagnosis of Alzheimer’s. The idea was that this was long enough for the benzo prescription to be nothing to do with early symptoms if Alzheimer’s.

The study is here

if you want to have a look at it - I thought it was really interesting, even if I’m not going to take any notice of it now.

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Just realised that ‘benzos’ is the street name for benzodiazepines, when people are taking them illegally. Probably not an abbreviation I should have used on here. The Horizon site I was looking at stated that 406 people died from taking them illegally (which year? I don’t know). Small numbers compared to those who died from the effects of alcohol (40,000) or tobacco (114,000).