Clonazepam vs. Gabapentin/Lyrica

[Frunobulax]

I'm curious. There seems to be some consensus in the forum that Gabapentin/Lyrica/Horizant only helps a part of us sufferers.

From my knowledge, Clonazepam works on the Gaba receptors too. Any experiences if there are similarities? Are there people here where Gabapentin/Lyrica helped but Clonazepam didn't, or the other way around? Or is there a correlation, that Clonazepam tends to help those who also get relief from Gabapentin/Lyrica?

My reason for asking is that I'm exploring my options to lower my Oxycodone dose. Even though I have a doctor that prescribes it, there are some metabolic anomalies coming from my organic acid test that may be caused/exacarbated by Oxycodone, so it might help me a lot if I could find something that works besides opioids. Unfortunately both Gabapentin and Lyrica didn't do much for me -- maybe 1 night of relief after doubling the dosis, then I was back to nightwalking. And dopamine agonists are out of the question because I developed very severe impulse control disorders. Cannabis is unfortunately still illegal here in Germany, and being an ex-smoker I have no drive at all to smoke again, legal or illegal. (But I'm not sure if that isn't working on the same receptors as Oxycodone, basically)

[Rustsmith]

I cannot help when it comes to gabapentin vs clonazepam when it comes to relieving RLS movement symptoms since neither one helped me from that standpoint. I have been on gabapentin for many years because it is the most effective medication that I have found when it comes to helping prevent migraines. It also helps with the insomnia side of RLS, but isn't all that strong (the normal prescribed sedatives were totally ineffective). However, clonazepam was highly effective when it came to treating my insomnia. I used a quick acting form and had to take it after I got into bed to avoid a groggy, stumbling walk to climb into bed.

However, my neurologist was very unhappy when she found out that another doctor had written a script for me for clonazepam. Like the opioids, it is a central nervous system depressant and the combination of an opioid, gabapentin and clonazepam plus my mild sleep apnea was treading on thin ice when it came to breathing throughout the night and waking in the morning, especially since I live at an elevation of almost 2000m. When I asked the doctor who wrote the script, she agreed that it was a risky combination but that the doses were not that large.

Also, there has been some recent research that indicates that clonazepam MIGHT hasten the onset of dementia. Since dementia runs in my mother's family, this alone was reason enough to stop taking it and never starting again.

[Frunobulax]

I'm not a fan of Clonazepam or benzos in general either, and I believe opioids are safest long-term solution for severe RLS patients -- in general.

However, medicine is always a game of chances -- some drugs work better for some, worse for some others and not at all for the rest. I had some extremely rare side effects from several drugs, so I'm kind of a side effect magnet. And my CFS started right after I went on opioids, gradually at first. So I can't rule out a connection there. Considering that my life choices at this point seem to be (1) accepting my CFS as untreatable and living as a vegetable for the rest of my life (confined to home, no social interactions until I've progressed enough to need care, in which case I can probably chat 5 minutes a day with a nurse) or (2) take chances to fight my CFS, my choice is clear. (I'm way too young for option 1.) So I'm absolutely willing to switch to any drug with a different mechanism than opioids for a while, in order to see if it makes any difference for my CFS. If it does, well, I'll cross that bridge when I come to it. If it doesn't, well, then I'll go back to opioids, and opioids only.

[Stainless]

I've been on Clonazepam for 25 years with a year off, 8 years ago. I quit then because of a large Canadian study that indicates that Clonazepam MIGHT hasten the onset of dementia. I told that to my GP who added Gabapentin and six months later told me to reduce clonazepam 3-2-1. I did exactly that but dropping from 1 to none was impossible. It took months longer, cutting pills into smaller and smaller pieces to quit. Gabapentin did not cut it. Maybe I didn't give it enough of a chance but next thing I know I'm on 1 mg Ropinirole, then 2 then 4 extended release. It was a bad, bad year and I ended up back on clonazepam. I'm sure I augmented. Handled properly it may have worked out better.

Here I am seven years later, now on Clonazepam and Lyrica for the pain in my thighs caused by Periodic Limb Movement Syndrom. Strange thing is that RLS can cause the various pains in my thighs even without active PLMS. Just sitting there. I say various because the pain comes in various forms from aches like I ran a marathon to shooting pains like pins in my thighs and everything in between.

For about the last month I added 1/8 mg of Ropinirole at bedtime and have had incredible sleep. I read someone complaining about the vivid dreams but to me it was like being a kid again, a long time ago. I still struggle with evening RLS but that seems a small price to pay at this point. I would like to increase the dose to 1/4 mg but am afraid to kill the golden goose with augmentation.

I would have never considered mixing these nasty drugs before but at some point quality of life rules. The neurologist I see now gave me Tylenol with codeine but it gives me terrible constipation so I expect any opioid would. I used it as a silver bullet at 2 am but have since cut that from the mix.

I do not believe Clonazepam stops RLS like the DAs can but it did make daytime RLS manageable (somehow) and allowed me to sleep (or be on conscience). Ropinirole by itself gave me 24/7 RLS but at first worked wonders. All you can do is all you can do. Best of luck. Rick

[Frunobulax]

Also, there has been some recent research that indicates that clonazepam MIGHT hasten the onset of dementia.

Do you refer to studies like this? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325366/
I'm not a big fan of this study, to say the least. People who take benzos permanently will have some fairly serious underlying conditions, and pretty much all seruous conditions will significantly increase the risk of dementia. Clearly there is an association, but that's just like claiming that yellow fingers will cause lung cancer -- a strong association indeed, but the yellow finger is not causal to the lung cancer, only the smoking which causes both.

I just did a search and couldn't find a single long-term RCT on benzodiazepines and dementia, which would be the one thing that gives conclusive evidence.

The same appears to be true for opioids, btw (https://pubmed.ncbi.nlm.nih.gov/26289681/). Just as inconclusive if you ask me.

I guess the best cause of action is not to get sick in the first place

[Frunobulax]

Quick update: Seems that 0.5mg Clonazepam allows me to lower my Oxycodone from 25mg (10mg around noon, 15mg in the evening) to 15mg (5mg/10mg). A few breakthrough symptoms here and there, but the insomina is almost completely gone: I fall asleep like a baby and the occasional symptoms occur only after 5-6 hours of sleep. Now let's see what happens long term

[QyX]

You can get a FitBit watch and monitor deep sleep and REM sleep with it. Benzodiazepines usually lower deep sleep and REM sleep when taken over a longer period.

Also worth nothing: you could try some other opioid for RLS. Oxycodone is known to cause alertness and insomnia. You could try Morphine as an alternative.

[Frunobulax]

You can get a FitBit watch and monitor deep sleep and REM sleep with it. Benzodiazepines usually lower deep sleep and REM sleep when taken over a longer period.

Also worth nothing: you could try some other opioid for RLS. Oxycodone is known to cause alertness and insomnia. You could try Morphine as an alternative.

Well, unfortunately my doctor is not that flexible on his drugs I might convince him to switch to Tilidin. But with Clonazepam, alertness and insomnia isn't an issue anymore, and considering that I want to see how far I can lower the opioids in general.

The big issue here is that opioids decrease methylation and glutathione production and increase oxidative stress (https://pubmed.ncbi.nlm.nih.gov/24569088/), and I know from an organic acid test I've taken that both are a big issue for me. So there is a chance that the opioids are responsible for my ME/CFS, or at least exacerbate the symptoms. To find out if they do, I have to either cut them out altogether or reduce them as far as possible. And I'm quite happy to go to high doses of another drug, at least temporarily, to get to the root of this problem. And as I said, if I see no change (or a negative change) then I can always go back to Oxycodone or another opioid.