Educate yourself on the effects of RL... - Restless Legs Syn...
Educate yourself on the effects of RLS meds
Thanks for posting that. Not only Augmentation to worry about then, but mental illness. Luckily I didn’t suffer impulse control issues but I definitely suffered severe depression & suicidal ideation going through withdrawal and for quite a few months afterwards.
Seriously scary drugs.
I’m sad I’ve lost my previous brain function and sadder drs keep pushing these on people!
Very interesting! Lately when I am reading, and am tired, I have experienced living in parallel situations. Things seem to be happening, or people seem to be present, other than just my wife and I reading. Odd!
Are you taking a dopamine agonist? I hope you don't need an exorcist.
Thanks! Yes and it is a little bit worrying. I couldn’t get on with Ropinerole or Pramipexole but Rotigotine is probably helpful. I need to discuss the side effects with the neurologist.
This all makes very sobering reading. Our hypocratic oath states 'first do no harm' and it is a very important concept. I think that patients assume that if they are given something it must be safe as in general folk trust Drs. Drs are not always aware of all the risks. Ok they are mentioned in the date sheets but there are so many potentials for every drug and if folk are desperate you want to help and just hope they won't get the side effects and also trust the drug licensers to have weighed it all up properly.
I was very aware of the intense marketing campaign which accompanied the first dopamine agonist for RLS.
I remember my GP saying their guidelines were that DA's were 1st line. I never took them and something made me very wary. I think they're 2nd line now aren't they?
I hate things which mess with brains. They aren't yet pure enough and are blockbluster. Folk who have impulse control disorders feel ashamed and are unlikely to mention it spontaneously. Also even if warned in advance it is hard to twig that's what is happening as it feels 'normal' at the time.
I also think Pregabalin messes with brains though via a different mechanism. It made me hungry and aimlessly grab biscuits during the night even though I tried not to. There was a sort of autopilot. I'm pretty convinced it made me overanxious too which hasn't entirely gone when off it.
If we can the natural remedies are best I'm sure. Everything has side effects I discovered when I was a prescriber. We are not dispensing smarties! It gave me a sense of huge responsibility. But there is so little time to discuss all these things in full at appointments and everything is so rushed.
I second your comments about impulse control disorder seeming natural. I developed a dreadful internet shopping habit (I knew nothing about the risk of it as a side effect of the d/a) centered particularly, but not exclusively, on shoes and bags. I had never been much of a shopper and while in the grip of the craze I would say to my husband "look at me suddenly gone all girlie after all these years". I never dreamed it was the drugs. I dread to think what pregabalin is doing to me (have just finished a second slice of cake) but really want to get some normal sleep to enable me to resume my career for a few years.
I don't think Pregabalin is anything like as bad as the DA's. I just warn folk who might not have severe RLS that there may be better alternatives.
I think it was responsible for allowing me to keep my career going for several years and I was extremely grateful for it at the time and regarded it as a miracle.
I just wonder now whether it had a detrimental effect causing the degree of RLS I have now. This may be rubbish though and it might well have been like this now even if I hadn't taken it.
The main thing at the time I took it was the extra eating I did. It also did affect my balance. These 2 are instantly reversible when you stop it and the weight fell off me again. I do wonder if it caused anxiety though.
Interestingly, to tell you a funny, though rather sad story, I had no idea about the eating potential until I worked in a charity shop when retired. The shop had folk who were nearing the end of prison terms working in there as a sort of start of rehab. Some of them 'bragged' a bit. One day one was telling me about what they could get hold of in prison. This included Pregabalin ( which they called a shorter name like pregabas or similar ) which I had no idea had become a drug of abuse. They took it in vast doses. The guy told me it caused 'the munchies". I kept very quiet but realised that yes it did!!
Thanks for that story - it made me laugh - you learning about the side effects of your prescription drug from the (almost) ex-prisoner abusers.
Like you, I was gob-smacked when I heard that it was one of the fastest growing recreation drugs. No wonder there is an obesity epidemic! I cannot get my head around why anyone would take that drug voluntarily.
Nor do I understand what effect the abusers are taking it for! I didn't find any buzz or anything beneficial to mood. But my 'contact' did seem to suggest the doses they took were huge.
omg i too cant stop internet shopping and smoking as siftol makes me impulsive and tired all the time so smoking to get energy - that explains it! Thanks - jan
What’s more sobering? Having 99% of the drs I’ve seen support these types of drugs only to find Once you stop ( which most do eventually) there very well may be irreversible damage. I think people are getting more educated, including drs, and hope they will go in eyes open.
Yes, that is incredibly sobering. Drs get fed information by drug companies of course and it takes ages for the grass roots GP's to be alerted to the problems by anyone. I think the onus is on the specialists to shout it from the rooftops when they see an important problem arises, but there is no clear mechanism for disseminating this information unless the drug company or central licensing people send out an alert.
The GP's are working on guidelines which aren't updated enough because it is so time consuming to look at evidence and update guidelines.
Specialists don't realise how many non specialists are being consulted so don't send out general alerts. If the GP's don't prescribe the waiting times would be vast.
The DA's were marketed directly at GP's I recall.
I eventually learned to always go in with my eyes open for every new drug as so many were 'wonder drugs' and then in my working life were either withdrawn or new side effects emerged. Because the augmentation wasn't apparent during the trials and licensing process it took ages for this problem to be recognised. Drug trials only go on for so long and it is reasonably common for new and important side effects to emerge years later.
It's all a big problem.
has any one tried mary jane?
Yes, I don't find it helps my rls at all but there are many who do. I use it as a sleep aid to counteract the alerting effect of other medications. There are lots of posts about it if you put a search in the bar - but use 'cannabis' or 'marajuana'.
And here I was thinking ‘who the f* is mary jane’. How naive can you be? 😇 Mind you, I was born and bred on (in?) the outskirts of Amsterdam.
Yes works for me. prefer CBDwith no high
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