Just curious

[Keitha]

After many, many hours and days on end without sleep, I finally found a certified sleep medicine physician that really listened to me. Here is the drug regime he put me on: 1 neupro patch every 24 hrs. plus Horizant with the patch. Somehow they work together. Clonazepam (1 1mg tablet 3 times a day), belsomra at bedtime. I have slept like the dead for the last three nights, but I also feel like the dead all the next day. Question: Has anyone else ever tried anything close to this regime. Understand my RLS was so bad I walked the floor every night until the break of dawn and then I might get a few hrs. sleep. I will go back to the dr. later this week and maybe we can tweak this just a little bit.

Any and all comments are welcome. I'm desperate.

[ookla]

Clonazepam interferes with sleep architecture and destroys your quality of sleep, practically preventing you from getting the restful recharge from sleep. When I tried that med, I could barely get out of bed in the morning and the day was a complete fog. I was never able to adjust. I hope you have better luck.

[Hidden]

I have no idea how to help except to send you shiploads of sad sympathy... which probably doesn't help at all, but I couldn't pass by your post without saying something! Really hope something can be sorted out for you soon.

[Amber111788]

Maybe some Effexor in the morning.. I was on remeron at night to help with sleep and Effexor to help motivate me during the day... just a thought...

[Hidden in reply to Amber111788]

Effexor can make RLS worse. rlshelp.org the treatment page for meds that should be avoided.

[Hidden]

Clonazepam has a long half life and can be very sedating for alot of people, i dont understand why you are taking that dose during the day..? The Neupro Patch is a 24hr patch and should work for 24hrs, without needing a sedating med like Clonazepam during the day, AND three times a day. Did your doctor explain why he gave them to you and why during the day,,?

[Keitha in reply to Hidden]

one reason probably being my RLS has morphed into a monster day and night over the last 3-4 months without relief. Foggy is a cheap price to pay for some nighttime relief. However, we are still tweaking. Only been tweaking for a couple of weeks, so maybe we will find just the right fix soon.

[involuntarydancer in reply to Keitha]

I think tweaking is the optimal way to deal with rls and drug side effects. I am constantly tweaking in an effort to get the best results and I would say I have gradually, gradually moved to a system where I have (some) sleep at nights with not too much disturbance by rls and a good level of alertness and few symptoms during the day. It takes a long time as your body has to adjust to the drugs etc.

diet is also important.

[involuntarydancer]

I’ve never taken clonazapem so can’t comment in it but I have read many accounts of horizant causing daytime drowsiness - particularly when it is first started. You don’t say what dose you are on. I would expect the level of daytime tiredness to be somewhat dose dependent.

It does sound like you might be slightly over-medicated now. Be careful not to increase the neupro patches beyond 2mg which is the current recommended upper limit by rls experts.

I like your description of your response to the meds - it made me smile.

I hope you get the daytime tiredness under control.

[Lolly53]

Keitha

Elisse and Involuntary dancer are both right. The Clonazepam should only be taken to help you sleep so I’m not understanding why it is being given to you during the day. Of course you feel like the dead during the day! You are being way over medicated. I’m glad though that you are sleeping well at night! That’s a good thing right? Hope you can get the right regime so that you are rested and energized for the day and also sleeping well at night. What I wouldn’t give for that! Blessings!

[Alyson66 in reply to Lolly53]

It also helps with extreme sweating.

[Keitha in reply to Lolly53]

You know, Lolly, with this terrible condition, it really comes down to choices and balances. Which would you rather have sleepless nights and sometimes days, or the choice to sit down anytime of the day or night and enjoy reading a book or watching a tv movie? It has been a long time since I have had that choice. Will still work with my specialists to find the right fit for me. Thanks for your comments.

[Bonbon32]

Everyone is different but I agree Effexor made my rls worse but my rls is my whole body plus many other medical issues keep trying and work with your doctor been working with my doc 2 yrs now still not the best but getting there goodluck wish you the best I know it’s awful

[DicCarlson]

Effexor is the devil incarnate - withdrawal and discontinuation syndrome is a nightmare. Couple that with RLS and you've dug a deep pharmaceutical hole.

[Bajatom]

If u have anxiety or panic attacks clonazapam is useful short term while you learn cognitive behavior therapy. Long term it is addictive and causes memory problems and becomes less effective! For RLS my doc allows 0.25 to 0.5 mg at bedtime if I can't fall asleep, but only once or twice a week. Preferably never. In combo with 300-600 mg gabapentin this gives me 5-6 hours sleep. Don't use alcohol with either of these. Get rid of triggers and get serum ferritin over 100.

[gyanapendleton]

Methadone works very well for me, for RLS. Have you tried this?

[Hidden]

I use balneum superplus cream -i know its for skin complaints but it works well - i recommend it to you