I am on day 5 of being off Pramipexole and switching to Gabapentin. My days are bearable but my nights are really miserable. I am taking 2.05 Buprenorphine and Naloxone.
No sleep at night and an hour nap during the day. I will not give in!! I’ve done the normal things like hot showers, screaming and crying, etc. Is there any other pain medication that will help?
Sue I am sorry I missed your TV (?) appearance on RLS. I must have missed the announcement. Is it being shown in the US? Will it be shown on Utube ?
Thanks for everyone’s help over the last 6 months
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Yorkie111
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Oh Yorkie111 I feel so for you having recently come off a dopamine agonists & starting on Pregablin. I have come out of the hell but it’s not for the faint hearted! Well done & don’t give in .. You will get there & it does get easier!! I took massive doses of codeine but only at night… easier to suffer & to try and distract oneself during the day … the nights are pure hell.. as the Pregablin started kicking in ( took 3 weeks after I was off the dopamine ) the relief started to happen!! I am now able to go without codeine at all!! You WILL get there too!! Xx
Question for Annieapple. I am withdrawing from Ropinirole. It's been a 20 week journey down from 3.5 to 0.5. I take codeine at night. But not sure how much to take. I try 30mg at 9pm and then another 30mg at 2am. But am averaging 5 hours of broken sleep over the night. Would a higher dose of codeine help? Also I am about to move down to my last step of 0.25 and hope to be off Ropinirole finally in the next two weeks. My legs of course are wild at night in bed but pacing around house gas decreased. However I am hesitant to move over to pregabalin due to weight gain. Have you experienced this?
Oh it’s such a struggle isn’t it!!! Feeling for you! I had to take 60mg codeine (with a laxative )at 10pm to get through the night. I never ever took any during the day! Once I started the Pregablin I reduced it every second night until I was only taking 15mg.. continued with that for the 3 weeks till the Pregablin kicked in. I am on 225mg which I take at 8pm & am in bed asleep 😴 by 10pm. I did put on 2kg but because I am sleeping well without codeine and NO RLS I don’t care. Now I am getting SLEEP I am exercising more & able to be far more active in the day.. already lost 0.5kg Watching my diet carefully & drinking lots of water 💦
I really pray you can get through this dark, horrible bit to the sunshiny side.
You might want to try gabapentin instead as it is much less likely to cause weight gain then pregabalin. I only gained around 2 to 3 pounds on it. Start it now since it takes 3 weeks to be fully effective. Beginning dose is usually 300 mg gabapentin. After your withdrawal symptoms have settled increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason (not sure about pregabalin).
Sue, I have run into a family emergency that I need to deal with and have all my facilities about me. I am on day 6 of the switchover from pram to gagipentin.
How I do this and no lose all that sleep have been thru? Help!
It's not surprising that the gabapentin isn't doing much this soon after stopping DAs. It is surprising that the buprenorphine isn't working for you. Sounds like you have the typical dose - 2mg buprenorphine & .5mg naloxone. Pills or films? What time do you take it? Are you taking it correctly - letting it dissolve under your tongue? It doesn't do any good if swallowed. 2mg of buprenorphine is a high dose for many of us - .5mg - 1mg is more common, although the Mayo guidance says up to 6mg is needed for some.
Hello Yorkie111. I am 5 weeks off of Pramipexole and am taking Suboxone sublingual film (Buprenorphine/Naloxone) so I understand completely what you are going through! As 707twitcher mentioned, make sure that you are taking the films in the correct way. I say this because I have only just discovered in the last week or so that I was not. I was so concerned about some reports of people having dental issues from the medication that I was rinsing my mouth a bit right after the film had melted. I now believe that was the wrong thing to do.
I felt the Suboxone was not working as well as it should and was up to 1.5 mg per night, and still experiencing some spasms strong enough to wake me up a few times a night. But, once I stopped the mouth rinsing, and just let the medication remain in my mouth without consuming anything for about one hour, it became much more effective. I have since been able to reduce it down to 1mg per night. I am not necessarily entirely spasm free but very close to it.
After 5 weeks Prami free, I do still experience depression and anxiety. However, I am beginning to have fewer such difficult days and more periods where I suddenly realize my mood is much more upbeat. It feels good! So as everyone who has gone before us says, I guess it just takes time for our brain to respond to this sudden lack of DA.
I have absolutely no medical background but I have wondered whether the Buprenorphine (Suboxone) we get here in North America (I’m in Canada) is as effective as that produced in Europe. I do have severe RLS, but I had hoped to be able to get away with taking .5mg max of Bup like so many in the UK find works for them. Perhaps in time I’ll be able to reduce it as my body begins to heal. Hopefully, you’ll find that too.
It’s a slow, tough journey but we’re getting there! I wish you all the best.
GoForward, I would suggest trying a little more suboxone in order to completely eliminate your symptoms. It takes a few weeks for the body to adjust to buprenorphine, and for many that involves needing to increase the dosage a bit. Unless your side effects are really bad, I think it's better to take a bit more. You can always cut back a bit occasionally to check whether you contue to need as much. Dosage is a continual process of experimentation for me, unlike some like Joolsg who has stayed constant almost from Day 1.
Thank you very much 707twitcher. I will play with the dosage over the coming weeks. That is what is so nice about the sublingual film format. It’s an easy way to increase/decrease the amounts as needed.
Thanks for the helpful hints GoForward. I am taking the Buprenorphine …dissolve., don’t rinse, etc. And I’ve been taking it for over a month. It isn’t the Buprenorphine that causes the problem with the teeth. The Buprenorphine causes dry mouth which causes the problems with the teeth. Lots of help out there to help reduce the dry mouth.
I was taking .25mg of pramipexole and .75mg of tramadol (both 3x daily) at the time that I quit them both. I hadn't yet started taking buprenorphine, but out of desperation I downloaded a couple hypnosis sessions from hypnosisdownloads.com. I had no withdrawal symptoms at all, and continued to feel pretty good for a few days. At that point, I finally got my buprenorphine prescription filled. I now take 1 -2 mg of buprenorphine a day and have continued with the hypnosis several times a week. I feel fantastic! The hypnosis downloads are only about $20.00, and it's a one time purchase. If you're still feeling badly, I highly encourage you to try them. Good luck, and let us know the results of hypnosis, if you choose to try it.
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