I've been to see Prof Walker who has prescribed me Clonazepam, if that doesn't work he wants me to try Targinact (Oxy) or Perampanel.
I'd love to hear back from y'all with your experiences with these medications (positive or negative).
Perampanel:
Think this is taken just before bed and works in a similar way to gabapentin etc. I don't know much else about it.
Targinact (Oxy):
If anyone is on Targinact (Oxy) and had to increase their dose? Have you had to use it every night? Prof Walker indicated it's a once a night, long-acting medication - which I'd prefer. But I seem to recall reading you have to take it a couple of times throughout the day - is this correct?
I get properly constipated from codeine medications, so having something that blocks that issue would be great which Targinact has. When taking codeine, it worked well and I only had to take it before bed. But the constipation for me was too much. (Sorry if TMI!) Ideally I could just take codeine and not be constipated!
Clonazepam:
I trialed it out at a very low dose and it knocked the snot out of me for 2 solid days. I worked my through a lower and lower dose but still couldn't get a clear head the next day, all day. I've basically lost 3 weeks to being a giant ball of confusion and mind fog, fatigue. It also made my ADHD far worse! But I slept and no RLS/PLMD!
Anyone know how to get rid of the major head fog and confusion the next day from this stuff? Coffee didn't do anything. Would vitamin C work? Anything?!
Ideally, I'd like to be on as little meds as possible. I'm already on quite a lot for other health conditions. And, likely to be adding in more in the near future.
Feel free to share your thoughts.
And, may all our jazzy legs be calm and silent tonight!
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HappyGreenBean
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While i find clonazepam to be really helpful, benzodiazepines really aren't recommended for long term use. Benzodiazepines can cause rebound insomnia, and also result in tolerance (where you need more and more to get the same effect).
I have taken 0.25 to 0.5mg clonazepam on and off for several years now (in addition to pregabalin). I feel spaced out generally from pregabalin so I don't really notice any additional spaciness. I'm tapering down very slowly as i don't wish to be on clonazepam any longer. I have read numerous articles explaining why they shouldn't be used long term - unfortunately i can't recall any of the specifics at this point in time (took my sleep meds over two hours ago!).
Have you tried pregabalin or gabapentin? If a) yes, and b) unsuccessfully then opiods such as Targinact would be the logical next step.
It doesn't sound like clonazepam is right for you. It has a long half life of 40 hours which is why you are affected the next day. I can't imagine vitamin C would help. You could take your medicine for your ADHD when you get up. That is the most likely thing to help.
Since you have breathing issues I would be leary of Targinact which can also cause them.
Another one to try for RLS is clonidine.
And still another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
The ADHD meds don't touch the side of the Clonazepam! Seriously, it's nuts. I'll mention clonidine to Prof Walker, thanks kindly for this.
Dipyridamole seems interesting (!!) but I can't take it. I have a clotting disorder. Dang it!
I'm starting to feel like a drug addict, not trying to sound melodramatic but I've got uppers, downers and it just feels awful to be taking all these pills just to function. I feel like a failed human being. But I sincerely never, ever recall having restful sleep in my entire life.
Found some medications that could block the constipating impacts of opioids AND the opioid would only need to be taken at night prior to rest unlike Targinact. Looking at codynamol (spelling?!) to see if it works. Prof Walker is very reluctant to prescribe anything outside his wheelhouse of experience and he's at least familiar with this one.
My mum takes same dose clonazepam as part of Parkinson’s medication regime,2 hours before bedtime to help with insomnia, which it does, but… it is supposed to help with RLS as well for some people but not in my mum’s case.
This drug is part of the benzo group of drugs and are only really meant to be short term if possible, as they are well known as highly addictive and difficult to come off if taken longer term.
My mum also has the morning brain fog , we haven’t as yet come up with anything that helps.
My mum is looking to reduce dose slowly and come off completely to see where she is at sleep wise.
As you say the least amount of cocktail drugs the better.
Sorry I can’t be of more help at this point , but I do keep looking at posts.
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