going "cold turkey"

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stjohnh
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Re: going "cold turkey"

Post by stjohnh »

Hmmm... So you have been off pramipexole for 2 nights, tonight will be the third. correct? And you are taking 300 mg gabapentin three times daily? And the passing out spell was due to the combination of gabapentin and baclofan?

Assuming that is true, tonight will likely be fairly bad but likely the sleeplessness will be getting better after tonight. Still bad, but better. Don't take any meds w/o doctor's ok.

The game plan for the future doesn't sound right to me. The general recommendation is that someone who augments should not take dopamine agonists at all. Going back to pramipexole at 0.25 mg sounds like asking for problems. I did restart pramipexole after augmenting and subsequent wash out, but at 0.0625mg (1/2 of a 0.125mg tablet). If you are set on going with pramipexole, that is the dose I would use, and certainly never again go above 0.125mg.
Blessings,
Holland

Yankiwi
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Re: going "cold turkey"

Post by Yankiwi »

Wow, that's really terrible. Glad you had the wherewithal to phone a friend to drive you to the ER and are now safely home.

ViewsAskew
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Re: going "cold turkey"

Post by ViewsAskew »

retiredfg5 wrote:
Sun Mar 28, 2021 12:40 am
Wow, what a rocky few days, culminating with a trip to the ER today. Before I fill you in, please let me know if I should stay where I am or post under another category. Now, here's the story. Wednesday I took my last .25 mg of pramipexole (my friend has the rest of the bottle). Also on Wednesday I had a virtual appointment with the PA in neurology who has been treating me. She said she was not comfortable prescribing clinazepam or opioids so sent me to pain management. In my clinic pain management is paired with spine care, thus I was already a patient with them. By the way, I was supposed to have my arthritic hip injected Tuesday but they wouldn't do it because I have an open sore on my foot. So Thursday I literally spent the day with my case being bounced between pain management and neurology. Finally I got a call that I had an appointment Friday with a MD neurologist. I had actually seen him 5-6 years ago with a mirapex related problem. I trusted and admired him then and I still do after Friday.
Treatment plan: I am to try to stay off the pramipexole as long as I can stand it, at least 2 weeks. By then my body will have "reset" itself and I start with .25 mg at bedtime of pramipexole. You read that right, back on pramipexole. And only increase it slowly if I feel I need more. And the PA had me increase the gabapentin from 300 to 600 mg 3 times a day. Dr. asked me if it helped and I told him not really. So he told me to go back down to 300 mg. Of course there was very little sleep Thursday night and no sleep last night, Friday.
This brings me to my trip, literally, to the ER. I was stupid. No sleep, legs and arms twitching constantly, hip in so much pain I couldn't lie down, and the knee wasn't much better. So I had some muscle relaxer, baclofan, lying around so I took 2 (20 mg total) about 7am. About 9am I found myself on the living room floor dripping blood from my face. I struggled up, grabbed some kleenex for my face and made it into the bathroom. The left side of my face was bruised up with a skin tear on the cheek. I stood there trying to decide what to do, then called my friend and asked her if she was busy. I'm real subtle sometimes. My bad hip really hurt, and several other joints. Anyway, common sense finally arrived in my old age (I've been known to drive myself to the hospital with appendicitis and pancreatitis). After blood work, x-rays, and CT scans, they put some steri-strips on my cheek and sent me home. Of course my legs are still twitching, my hip and knee hurt more and I really would like to sleep.
I hope to continue sharing my journey with you. Good night, I hope.
Oh, my. Lack of sleep can truly make our brains seriously consider just about ANYTHING to make those sensations and movements go away.
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.

retiredfg5
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Re: going "cold turkey"

Post by retiredfg5 »

SUCCESS! I have completed my withdrawal from pramipexole after it augmented. It's taken me over 3 months, but I was totally off of pramipexole for 15 days. I took .25 mg at bedtime on Friday, and have continued that way since then. My twitching stopped Friday night and hasn't come back (knock on wood)!!! I can sleep again, even in my own bed. For the last week I have been sleeping in my recliner, sleeping from 2am to 4am if I was lucky. Between the restless legs, the muscle cramps from being dehydrated, and the hip pain, sleep was pretty much impossible.
The last week has been pretty rough. I had a panic attack on Monday, passed out a couple more times and am now wearing a 7 day Holter monitor. I also found out I need to schedule 2 joint injections, the biopsy on a scalp lesion was squamous cell cancer, and I need to schedule 3 surgeries soon.
But now I have a cat to love me, I can finally sleep and the plants I ordered are being shipped this coming week. I want to thank you all and this organization for your support, information and well wishes. The last few months would have otherwise been impossible. Thank you.

Polar Bear
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Re: going "cold turkey"

Post by Polar Bear »

retiredfg5 - Thankyou for updating us on your progress. How wonderful, you've done it. I'm so glad that we were able to help and support you, Sleep is wonderful.
How lovely to hear you now have a cat, (I love cats).
Enjoy your beautiful cat and your plants.
Please do stay in touch.
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

badnights
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Re: going "cold turkey"

Post by badnights »

hi retiredfg5
did you try re-starting at 0.125? Maybe it's not too late to try dropping it? Cuz 0.25 is the max you should take. You have no room to increase it when you begin to augment again. You should, in fact, not increase it, but immediately stop the pramipexole when the augmentation returns.

There was someone on this board who successfully managed her WED/RLS that way, by stopping pramipexole herself whenever she felt the augmentation starting, doing without for a period of time (I forget how long) and re-starting at a lower dose. She had to do this re-set once every 6 months iirc. But she's pretty unusual. Most of us are not willing to do that withdrawal over and over again.

How's your iron status? Have you had your ferritin tested during all this? It is extra important to keep your iron up when taking DAs cuz it somehow delays the onset of augmentation.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

retiredfg5
Posts: 16
Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Badnights, I'm glad I decided to log in tonight. I saw your reply and I guess I'll be calling neurology in the morning. I have been taking .25 of pramipexole at bedtime for 10 days now. I was going to ask your opinion about what I should do now. The first 2 days on pram. I was totally free of symptoms all day and all night. The most sleep I've had in months I might add. Well, then came day 3 or 4, my legs started feeling "tense" in the late afternoon or bedtime each day. I know enough to get up from wherever I'm sitting or lying and walk and it is relieved. So my question was going to be which of 4 options do you recommend - 1. increase the daily dosage 2. switch to a different med 3. stop the pram 4. something else.
I have an appointment with the neurology P.A. this Thursday (then I go to a different clinic site to have my right hip injected). As I said I am going to call the office tomorrow to share your information, give them time to digest the info and formulate a plan. I have to decide tonight if I am going to stop the pram. on my own. I could say more, but I was looking back and noticed I had already filled you in on my plethora of medical problems. I will just say I am glad that the letter I recently received from the rls foundation included an information card for surgery staff referring to my rls info. This was timely because I have a double surgery scheduled for May 7 and got the good news that I need a hip replacement (will wait til fall for the hip).
Thanks again, I will check in frequently for any replies and will keep you posted on what's happening.

badnights
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Re: going "cold turkey"

Post by badnights »

I wish I had checked in sooner! I hope this information is still useful although you've already talked to the neurology office.
The first 2 days on pram. I was totally free of symptoms all day and all night. The most sleep I've had in months I might add. Well, then came day 3 or 4, my legs started feeling "tense" in the late afternoon or bedtime each day. I know enough to get up from wherever I'm sitting or lying and walk and it is relieved. So my question was going to be which of 4 options do you recommend - 1. increase the daily dosage 2. switch to a different med 3. stop the pram 4. something else
What's happening: you started to augment on day 3 or 4.
What to do: stop it completely. You will suffer badly for 4 or 5 days; possibly you will be unable to sleep during that whole time. But if you don't stop now, it will be worse later, and because you haven't been on it for long, there's a good chance you will only have one really bad day.
Now that I've said that, if there's a chance you can get a prescription for an opioid to get you through the withdrawal sometime in teh next week or max two, then cut back to 0.125 and hang on til you can get it.( This is not medical advice, it's simply a suggestion based on my experiences. Personally, if I could do it all over again, I would stop completely right away no matter how much grief it caused, because I had such horrifying grief later.)

You should have a better reference than "someone on an internet discussion board". I'm, not sure what your main need is - - to convince them that you're augmenting, to convince them you need iron? to convince them you need opioids? If you look in my signature, you'll see a link - that leads you to a page of links to useful papers. If you need to tell them about pramipexole causing augmentation, the paper you should print is the 5th item on the list, Buchfuhrer 2012. Highlight the part where he talks about WED/RLS specialists using lower maximum doses for pramipexole and ropinirole, and anything else that you think is relevant to your situation (but not too much - you want them to focus in on the most important things).

There is also more information on augmentation in the brochures and pamphlets published by the RLS Foundation. I describe how to access them in my page of links, 4th item on the list. Unfortunately, there are 4 or 5 brochures on augmentation, which is too many to pick through - but see which one makes most sense to you and print it for your doctor/PA.

If you get really keen, you can download more from my page of links:
  • 2016 WED need for new treatments -editorial.pdf
  • 2015 IRLSSG _Summary of recommendations RLS augmentation.pdf
    (this deals with prevention and treatment, with recommendations to keep ferritin over 50 or 75 ng/ml and transferrin saturation above 20%, and use of opioids in severe case)
  • extract_Clincial_Mgmt_Augmentation_Treatment.pdf
There is also a physician's educational webinar series; you could leave him a postcard with that information on it. https://www.rls.org/file/PhysicianEd-info.pdf

Knowledge will be your best tool when dealing with ignorance on the part of the healthcare community. Get yourself educated, then share that knowledge with whoever is willing to listen. Keep posting how things are going, and I will try to get back here more regularly.
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.

retiredfg5
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Re: going "cold turkey"

Post by retiredfg5 »

Tomorrow is my surgery day. I'm having 2 surgeries - first the podiatrist is going to remove a bone in my left foot to relieve the pain of a tailor's bunion. Then the surgeon who did my sleeve gastrectomy 18 months ago is going to excise 2-4 hydradenitis cysts. And it is a day surgery and I will be sleeping in my own bed tomorrow night.
And how am I doing with my restless legs you ask. I did see my neurologist and we discussed some of the info I got from here and she looked up the recommended dosage for pramipexole. So, I am keeping with the .25 mg at bedtime. And I have no twitching about a third of the days. Since she said to keep her updated, I messaged her a couple of days ago and told her how I was doing. I also let her know about the surgery tomorrow and I will be non-weight-bearing for a while and so will be unable to "walk it off". I suggested I would like to add .125 mg at suppertime for a week. She said that would be alright and she hoped my surgeon would be giving me pain killers.
Just today I thought of plan B. Today I am going to try .125 mg at supper and .125 at bedtime. Any thoughts? I don't leave for the hospital until noon tomorrow. Wish me luck!

ViewsAskew
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Re: going "cold turkey"

Post by ViewsAskew »

retiredfg5 wrote:
Thu May 06, 2021 8:30 pm
Tomorrow is my surgery day. I'm having 2 surgeries - first the podiatrist is going to remove a bone in my left foot to relieve the pain of a tailor's bunion. Then the surgeon who did my sleeve gastrectomy 18 months ago is going to excise 2-4 hydradenitis cysts. And it is a day surgery and I will be sleeping in my own bed tomorrow night.
And how am I doing with my restless legs you ask. I did see my neurologist and we discussed some of the info I got from here and she looked up the recommended dosage for pramipexole. So, I am keeping with the .25 mg at bedtime. And I have no twitching about a third of the days. Since she said to keep her updated, I messaged her a couple of days ago and told her how I was doing. I also let her know about the surgery tomorrow and I will be non-weight-bearing for a while and so will be unable to "walk it off". I suggested I would like to add .125 mg at suppertime for a week. She said that would be alright and she hoped my surgeon would be giving me pain killers.
Just today I thought of plan B. Today I am going to try .125 mg at supper and .125 at bedtime. Any thoughts? I don't leave for the hospital until noon tomorrow. Wish me luck!
Splitting it might work. Mostly likely, though, your doc is right. With a likely opioid in the works after surgery, you actually may have fewer symptoms (many of us do) and need less of the pramipexole.

Good luck with the surgery!
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: going "cold turkey"

Post by badnights »

I also let her know about the surgery tomorrow and I will be non-weight-bearing for a while and so will be unable to "walk it off". I suggested I would like to add .125 mg at suppertime for a week. She said that would be alright and she hoped my surgeon would be giving me pain killers.
Just today I thought of plan B. Today I am going to try .125 mg at supper and .125 at bedtime. Any thoughts? I don't leave for the hospital until noon tomorrow. Wish me luck!
Good belated luck! I hope it went well.

Your idea of splitting the dose instead of adding an extra .125 was a good one. Did it work?

Your doctor was right that the opioids. They hopefully gave you some for post-surgery pain, and those should help the WED/RLS too.

I am worried about your doctor's lack of experience. Her acceptance of your suggestion to raise your pramipexole dose was evidence of her lack of experience. I think the action would be potentially dangerous to you. You started to augment only days after starting the dopaminergic medication, so an increase that lasted only a week could make your augmentation worse.

Usually people augment so quickly when their serum ferritin is very low - - below 20 even. Ferritin is a protein that stores iron in the body tissues. Iron, ferritin, and other iron-related measures can be obtained easily from a blood sample but are really only relevant to the blood, and don't tell us anything about the iron status of other organs in the body. It would be nice if we could measure those things directly in the brain or cerebrospinal fluid without danger/pain/time/expense but we can't. Ferritin is still useful sometimes, though. It can be high for many reasons, therefore high ferritin is not diagnotic of anything, but low ferritin always means there is a deficiency of iron somewhere in the body. If you have WED/RLS, that deficiency is probably in the brain.
(If you have high ferritin, you can still have an iron deficiency in the brain)

Please note these facts (papers in my link):
  • People with low ferritin augment more easily.
  • Augmentation is also more likely the higher your dose of a dopaminergic medication, and the longer you've been taking it.
  • Taking oral iron can relieve WED/RLS symptoms for some people. IV iron is even more successful.
Being able to "cure" your WED/RLS simply by taking iron becomes much more unlikely if you have already augmented (it seems from what I hear on this boar and read in the literature.)

You sound happy that you "have no twitching about a third of the days." but that leaves you twitching two thirds of the days. The goal of WED/RLS treatment is have mild "twitching" for only a short time - half an hour maybe - on most days. In other words, we can't hope for it to be gone completely, but we can and should hope for it to be a heck of a lot better than what you're living with.

Your doctor, by the way, likely has no idea what you're living with. It's so darn hard to describe to people - especially busy people. Sometimes it's easier to describe the impacts - lack of sleep, & poor decision making and other things that arise from lack of sleep.

I hope you recover quickly from your surgeries.
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.

retiredfg5
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Joined: Fri Nov 06, 2020 8:28 pm

Re: going "cold turkey"

Post by retiredfg5 »

Thanks for all the good thoughts and feedback. That has left me with lots to think about. I chickened out and didn't split the dose so am now taking .125 at supper and .25 at bedtime. No symptoms. My serum iron and ferritin have always been above normal range and I do take an iron supplement. As for the inexperience of my neurology care givers, I'm stumped on how to proceed.
Now that me surgeries are behind me, literally and figuratively, I am more inclined to do the .125 split and see what happens. The surgeries went quite well, other than being delayed nearly 2 hours. I was in surgery a little over 2 hours. The recovery was the best and quickest I've had in quite some time. The surgeon went first and I now have 4 huge holes about 3 inches diameter . They are being cleaned and repacked daily by a visiting nurse. I got a look at one yesterday because the packing came out, gross! Then the foot surgeon did his thing. I now have a bone missing the head and while he was at it he debrided my foot wound and placed a graft on it. So I'm home, sitting is not too comfortable, and I'm expecting the nurse any time now. One more addition to my litany of maladies, the Holter monitor I had done 2 weeks ago showed a few instances of ventricular tachycardia. Almost forgot, I made use of that info card I got from the foundation, the one explaining the necessary precautions to take when doing surgery on a patient with rls. I showed it to the anesthesiologist before surgery and with that information he went ahead and changed the medications he was ordering. So a big thanks to the foundation.

badnights
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Re: going "cold turkey"

Post by badnights »

I'm glad the surgeries went well. And fantastic, that the card worked and the anesthesiologist adjusted appropriately. I have had nothing but good experiences informing anesthesiologists that way.

Oh yikes, tachycardia! I am about to put on a Holter monitor, they just called me to schedule it. I hope they don't find anything (except that I won't know for sure that nothing is there, but still).

One thing to keep in mind when you reduce back to 0.25 total pramipexole, is that you may experience withdrawal symptoms. In pramipexole-treated WED/RLS, withdrawal means worse symptoms. Don't give up just because the first few days after you drop the dose are hellish. It will go away!

If they gave you opioids, now might be a good time to drop back. On the other hand, if you're keeping most of the opioids aside (which you could do if your pain isn't too bad), you could wait til you can walk, so you have a way to relieve the WED symptoms. The problem with waiting is that you might be making the withdrawal worse the longer you wait.
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.

Yankiwi
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Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: going "cold turkey"

Post by Yankiwi »

It's so important to notify the anesthesiologists, they really don't want any surprises during surgery.

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