Pit of despair.

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frickets
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Joined: Thu Mar 18, 2021 7:03 am

Pit of despair.

Post by frickets »

Hello all! I’ve been dealing with RLS for more than 15 years. Pramipexole had worked, until it didn’t, and my PCP would prescribe more. This continued for many years. Eventually I found myself trying extended release (ER) complimented with smaller doses when necessary. We walked ourselves right into augmentation. Now I have new doctors who also seem to be learning their way through this and it’s disconcerting. From this site I can see that there is hope in getting off Pramipexole and onto a better, and more judicious RX plan. We’ve developed a plan that starts with Gabapentin 300, three times a day, adds Oxycodone at night, and reduces my Pramipexole intake by .25MG every 10 days for more than 2 months. Once off and clean from Pramipexole, there’s discussion of using Methadone - TBD.

It’s a slow process and I am often completely miserable with extreme RLS symptoms for at least half of every day. I’ll take sleep whenever I can get it, but it’s doesn’t often come in more than a couple hours a night. Is this a good plan? How do you deal with the complete misery for so long? THC? Am I getting to a better place, cuz this isn’t sustainable as is?

Also, any recommendations for RLS doctors in the Central Virginia area? Thanks

Rustsmith
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Re: Pit of despair.

Post by Rustsmith »

frickets, you cannot understand how incredibly lucky you are to have found these new doctors. The plan that they have you on is far better than most people get when trying to come down off a very high dose of pramipexole. Stopping too quickly runs the risk of developing dopamine agonist withdrawal syndrome (DAWS), which can cause permanent damage. Your prescription for oxycodone at night is also proper, but unusual. And the discussed plan to eventually move on to methadone is appropriate.

My only suggestion would be to discuss switching to methadone before you actually get totally free of pramipexole. A low dose of methadone (5-10mg) would cover your pramipexole withdrawal and methadone has the benefit of lasting 24 hrs. When I was augmented (max of 1mg pramipexole), my doctor started me on 5mg methadone and I dropped to 0.25mg that day with now problems. In fact, I felt better than I had in over a year. But then, everyone is different and I have no idea of what other conditions that your doctors may be considering.

As for THC, many of us have found that it helps with sleep. I use an edible THC and feel that it helps me stay asleep. Edibles take some time to kick in compared to vaping or smoking (which is near instantaneous), but edibles also last longer and there isn't any smell.

Finally, since your doctors are still learning, you might want to get a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It costs about $35 on Amazon. It was intended for doctors but is written so that most patients can also understand what they have to say. Many of us use it to help our doctors by marking a relevant section and then sharing that with our doctor. Some have even bought a second copy for their doctor if the doctor seems receptive to learning more about RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

frickets
Posts: 6
Joined: Thu Mar 18, 2021 7:03 am

Re: Pit of despair.

Post by frickets »

Thanks, Steve. Your reply alone is soothing. Really appreciate it, and the advice. Stay well.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Pit of despair.

Post by debbluebird »

There is hope. I took pramipexole for about 9 years and then like you, the Doctor prescribed more not realizing I was augmenting. I didn't know what it was at that time. Then I was switched to a host of meds that turned me into a zombie. Finally I changed Doctors and she put me on methadone. I was able to wean off the 5 other meds. It changed my life.
I just recently weaned off methadone because I developed central sleep apnea. I'm sure this does not happen to most people. I took methadone for 10 years.
Methadone worked better for me than oxy. I agree with Steve. I would start the methadone now while weaning off everything else
It will work. All my best to you.

frickets
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Joined: Thu Mar 18, 2021 7:03 am

Re: Pit of despair.

Post by frickets »

Thanks, debbluebird. I am also being treated for sleep apnea going on a year now, and it has worked well - when I'm able to sleep. Potential Methadone conflicts have not come up, but I will be sure to ask. Thanks, again.

Rustsmith
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Location: Colorado Springs, Colorado

Re: Pit of despair.

Post by Rustsmith »

Potential Methadone conflicts have not come up, but I will be sure to ask.
Deb and I both use a CPAP machine (I have UARS and Deb has central apnea) and we both live at elevation in the Rockies. I also take gabapentin, which is a central nervous system depressant like all of the opioids. Every time I see my doctor she asks to be sure that I am using my CPAP just to make sure that it will be available to counteract the effects that both drugs can have on breathing.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Pit of despair.

Post by debbluebird »

I should have added that I moved to New Mexico to get out of the high altitude, which for me was 8,000 feet. That contributed to my central sleep apnea. Moving helped me.

frickets
Posts: 6
Joined: Thu Mar 18, 2021 7:03 am

Re: Pit of despair.

Post by frickets »

UPDATE: I began drawing down Prmipexole by .25MG every ten days and added Gagapentin 300s 3 times a day. That was OK w/4-5 hours of sleep and moderate RLS symptoms the entire afternoon and evening. Once the reduction got my total daily Pramipexole intake below 1MG/day, the wheels came off. 1-2 hours of sleep per night, and RLS symptoms more extreme than ever. It was nearly intolerable - sore legs, multiple showers and many tears of frustration. After a few days, we went back to 1.0MG Pramipexole and I got back to the 4-5 hours of sleep and less intense RLS. I'm starting Methadone tonight at 2.5 MG for 6 days (took a few weeks messing with insurance), then we'll adjust as necessary and start thinking about further reductions in Pramipexole. It ain't easy, but I'm hanging on. Hope for a better day keeps me going.

Polar Bear
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Re: Pit of despair.

Post by Polar Bear »

frickets - It's wonderful that you are still on track to come off the pramipexole. You have a plan -- Keep hanging on.....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Pit of despair.

Post by ViewsAskew »

Polar Bear wrote:
Fri May 07, 2021 1:36 pm
frickets - It's wonderful that you are still on track to come off the pramipexole. You have a plan -- Keep hanging on.....
What she said!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Pit of despair.

Post by badnights »

I'm starting Methadone tonight at 2.5 MG for 6 days (took a few weeks messing with insurance), then we'll adjust as necessary and start thinking about further reductions in Pramipexole. It ain't easy, but I'm hanging on. Hope for a better day keeps me going.
There will be better days! It's wonderful that you've reduced to 1 mg. I wonder if the plan is to reduce further during the 6 days that you'll have methadone coverage? Or is the methadone to give you some recovery from the prolonged torture without sleep? 6 days is not enough to cover the full withdrawal but it would certainly help. Either way, I hope you carry on and get off the pramipexole, because you WILL feel better, your symptoms will be better, you just have to get over that hump. It's worth it. And thank goodness for your doctors, who seem to know what they;re doing, by and large.

Have they been checking your iron status? Do you meet the criteria to receive an iron infusion? That also might go a long way toward reducing your need for medication. The effects might not be as noticeable while you're in the throws of augmentation, but once you heal up from that, having an iron infusion in you can reduce the dose of methadone or whatever post-pramipexole medication you might use.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

frickets
Posts: 6
Joined: Thu Mar 18, 2021 7:03 am

Re: Pit of despair.

Post by frickets »

After the initial 6 days at 2.5MG Methadone, we increased to 5MG and have been holding there for now. Sleep has been pretty good, getting 6-7 hours a night is so much better. The plan to reduce Pramipexole proved to be too fast and things got very ugly. We found a compromise by holding Parmipexole at 1MG/day, letting things settle and getting through some travel without disruption. Now, RLS symptoms are fairly mild through the day, though build up a bit toward late afternoon and evening, and none at night with the Methadone. It's all tolerable for now. Just happy to be sleeping. Iron has been, and continues to be ok. Now that travel is over we're going to discuss next steps, like further reductions in Pramipexole doses. Best wishes for anyone battling augmentation. Just know that it isn't a permanent condition.

Polar Bear
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Re: Pit of despair.

Post by Polar Bear »

frickets - It is so good to hear how things have improved for you. Yes, you have some way to go but just look at how far you have come. Give yourself a pat on the back.
Now as you will go forward please remember that you will get there.

Just one thing... you said that your iron has been, and continues to be ok. You may already have covered this but are you talking about a normal blood panel, or your Ferritin levels. Your iron can be ok and yet you can still have low Ferritin. Your Ferritin is best up over 100. For a non RLS/WED sufferer Ferritin at 20 is considered OK.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

frickets
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Joined: Thu Mar 18, 2021 7:03 am

Re: Pit of despair.

Post by frickets »

Yes. Ferritin is above 100. Thanks

Polar Bear
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Re: Pit of despair.

Post by Polar Bear »

It's always good to know what your Ferritin is.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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