Slowest ever titration: I am returning... - Restless Legs Syn...

Restless Legs Syndrome

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Slowest ever titration

Julesjewels profile image
10 Replies

I am returning to this site again as I am enormously grateful for all of the stories/comments/etc. Since Sept. 2024 when I was down to 1 mg. of Pramipexole, I am now taking .4375 mg divided into .125 increments starting at 4 p.m. (.25 mg + 3/4 of second .25 mg). I am also taking 200 mg Pregabalin and .75 Clonazepam (since 2/1/25 when I had an entire night of uncontrollable RLS symptoms. The Clonazepam has definitely helped).

I get between 5-7 hours sleep/night. Right after a titration I am typically symptomatic for at least an hour between 6- 8 pm. I am so eager to get off Pramipezole after 20+ years. It takes me approximately 4 weeks to reduce another .0625 mg increment which seems interminable.

I am actually finally open to trying a small dose of methadone but now that I am using Clonazepam clearly both medications cannot be used simultaneously. I desperately hope that if I use Methadone to completely get off of Pramipezole, it will be time limited (less than 6 months.)

Has anyone gone from using a Benzo like Clonazepam to an opioid to finally get off of this horrendous dopamine agonist?

Thanks

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Julesjewels
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10 Replies
SueJohnson profile image
SueJohnson

Remember clonazepam can't just be stopped. You have to wean off it.

Joolsg profile image
Joolsg

Sorry- I can't think of anyone on here who has switched from a benzo to an opioid.As SueJohnson says- you can't switch overnight. You will need a slow titration from clonazepam as well.

I do know a few on here that have used methadone or Buprenorphine to get off dopamine agonists more quickly though.

So you will have to decide whether to continue the very slow titration using clonazepam OR start reducing clonazepam slowly now and once off it- use methadone or Buprenorphine to get off the remaining Pramipexole within a month.

amrob123 profile image
amrob123

So you've been taking clonazepam for 2 months? If so, you can probably taper down over a 4 to 6 week period. See how you go with each dose reduction, and go slower if need be. But you're still stuck with a likely inadequate clonazepam dose to help sleep/ mitigate effects of pramipexole withdrawal. Check with your doctor/pharmacist if you can start the opiod when you reach 0.25 or 0.125mg clonazepam. Also look at palmitoylethanolamide (P.E.A) supplement for sleep, I have found it very helpful.

PoorRichard profile image
PoorRichard in reply toamrob123

Wow - looking at Palmitoylethanolamide (PEA) - is very interesting stuff. Thanks for mentioning it.

Fishhag profile image
Fishhag

Yes, was taking 1.5 mg of Pramipexole with clonazapam and tramadol for break through of RLS Symptoms which was every night. I finally found this space and got educated. I finally convinced my neurologist to put me on methadone and it has been literally a life saver. No one will tell you to do this but I went cold turkey off of the Pramipexole and all of the other drugs I was prescribed. The first night I took .75 mg of Pramipexole and 10 mg of methadone. It was as if a magic wand had passed over my body. I knew I was on the right track. After years of nightly symptoms and lack of sleep, I was symptom free and slept for 6 hours. The next night I quit the Pramipexole altogether and only took 5 mg of methadone and that has been my routine for 6 weeks. My compulsive eating has stopped, sleep attacks during the day has stopped. I have increased my average sleep hours by 2 hours each night and nary a wiggle. Good luck to you and may you find rest.

Julesjewels profile image
Julesjewels in reply toFishhag

Thanks so much for your story. Just wondering about getting off of the Clonazepam. Did you withdraw over time? I know I can’t take C and methadone together. Just wondering how you managed that transition. Great to hear how effective the Methadone has been.

Fishhag profile image
Fishhag in reply toJulesjewels

I was taking Clonazepam on an “as needed basis” maybe 3-4 times a week for breakthrough symptoms. As I mentioned I went cold turkey off everything. No one ever told me to taper the Clonazepam, maybe I just got lucky with no ill effects. Seriously the methadone has been a miracle drug for me. I wish you lists of luck in your journey.

Qalba profile image
Qalba

I can't speak to withdrawal, but I can share my experience on methadone. I switched from 10 mg of hydrocodone to 10 mg of methadone a couple of years ago. It is inexpensive, easier to get prescribed in Kentucky, fewer side effects ie constipation, and unlike a patch I can take only tge dose that I need. I take 5 mg at 8 pm when I am slowing down and first rls symptoms usually begin. I take another 5 mg at bedtime, about 10:30. I also take half a cbd sleep gummy then to counter insomnia. Both work within 15 minutes. Sometimes I awake with symptoms between 2-3 a.m. and will take a third 5mg methadone. Usually though I sleep until 5-6 a.m. and just get up and start my day if rls symptoms appear. Some nights I only need one early dose. I think it depends on triggers from diet, activities or stress that determines my needs. I also listen to 528 hz sounds to relax, reduce symptoms, and encoutage sleep. Those have been shown to act similar to deep sleep waves and are more effective for me than other sleep sounds. I prefer to keep all meds to a minimum. Here is the one I use.

open.spotify.com/track/2GDD...

We are all different. Keep trying until you find what works best for you! Accept that this is something you can manage and live with! I kept fighting it, and that wasn't helpful! Good luck everyone. Your support has helped me so much!

Chiefskiwi profile image
Chiefskiwi

I haven't tried an opoid. I've taken Clonazepam off and on for 30 years. My Dr has tried me on numerous Rx but I find Clonazepam works for me. I still get RLS but it's controlled with the diet and mild exercise. When I had the Moderna vaccine for Covid I had no RLS for 3 months!

ACRELANE profile image
ACRELANE

I have found that RLS does not have one type of medication for all. It seems that each individual must find their own way of calming down this horrendous disease. Unfortunately I can’t help you off of pramipexol as (touch wood) it helps me twice a day together with a dopamine addition of targinact. It doesn’t cure but it does make a huge difference to me. Good luck with your quest.

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