Here I go...

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
badnights
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Re: Here I go...

Postby badnights » Sat May 28, 2016 5:40 am

I would advise anyone with mild WED/RLS to avoid medications. \
For severe PLMS - - not sure. Now that we know about augmentation, is it possible that the risks are more manageable? or are there dangers we don't know about that will offset the advantages in some future, as happened with Ann and Deb? (and me, but I don't think I had PLMS - I just woke up a lot. I had RLS, but I didnt regard that as my problem. It sure is now hahah).
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sat May 28, 2016 6:20 am

I would hope everyone would advise people with mild RLS/WED to avoid meds (though I imagine some out of the loop doctors would not!).

This seems to be saying that people with severe PLMS and NO RLS/WED should NOT medicate without really thinking it through. As you noted, what if the PLMS is the trigger that separates some of us who augmented? That once we take meds, we turn something on by mistake?

I honestly thought I woke up a lot, too. Even after I knew I kicked my bed partner, I STILL thought that I woke up just because I woke up. I recorded how many times - 20, 30 - and went to see a bladder specialist because I was sure I peed too much. Maybe you should not discount having PLMS...
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sat May 28, 2016 10:57 am

Strange day.

I was nauseous again today and hadn't taken any vitamins as I had before. I realized I was late taking the kratom. This went with a killer headache. I was able to ingest the kratom and the nausea slowly abated. Finally the headache went away a few hours later. It was also the first day I didn't have breakthrough symptoms. I took my nightly kratom dose before bed and all seemed fine, so I went to bed - back in my real bed instead of the couch where I have been since I started this.

About an hour later I was in a deep sleep, but something kept tugging me out of it. I finally realized it was my arms. I tried exercising them but it wouldn't stop. So, back downstairs, TV on, laptop on, etc.

I haven't read up on opioid withdrawal and the movements that go with it, so I poked around tonight. They are often called RLS and sometimes parathesias. Dr. B says they are not RLS. Interestingly, they often affect people's arms! So, my legs are quiet - the true RLS - and the withdrawal is causing issues with my arms. Just like Deb. Huh.

For me, the feeling is a bit different than RLS. It is hard to describe - my arm is warm along with what is more painful for me than how I experience RLS. Also, less of the internal anxiety I experience with RLS. It's more a constant heaviness that hurts somewhat and makes it hard to ignore. When Deb said her arms hurt, I'd have to agree - mine sort of hurt.

I am wondering if a heating pad would help - even though it's sort of warm inside my arms, somehow it seems like it could work. It's also time I can take some more kratom - not sure if it will help.

But, I'd say this is officially opioid withdrawal, though very mild. The kratom does seem to really help - very glad I was able to get it before I started. And, it makes sense that on day 5 I'd finally really feel it. With the long half live, my body is finally feeling the lack of it. I imagine this is VERY mild compared to what many people go through and doesn't compare to the benzo withdrawal I went through. I am grateful for its mildness.

Guess I won't get much sleep today, though. Maybe I'll get lucky and be able to nap later. For now, it's Netflix binge-watching and munching in rice chips...
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.

mh380
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Re: Here I go...

Postby mh380 » Sat May 28, 2016 10:15 pm

Hi Ann,
That sounds awful! Since your sleep is already so lousy, it probably makes the most sense to take the band-aid approach to your methadone. Hopefully you can upregulate your endorphin receptors, get your baseline RLS/PLMS levels, and return to a lower dose of methadone as quickly as possible. Past will probably be prologue here, so I'm guessing the methadone won't lead to very bad withdrawal, and if it does, it will probably happen whether you wait or not.

About your experimentation with treatment with opiates, did you try the other opiates while you were on methadone, or did you switch one out for the other? I only ask because there was the recent video by Dr. Earley where he discussed using opiates to treat RLS, and he said that if methadone doesn't cover all symptoms, you could possibly add a second opiate that targets different endorphin receptors.

By the way, I'm impressed with how coherent you are, since you are sleeping so badly. I think if I were in your place, I'd just stare blankly at my computer and decide to write about my ordeal after it was over.

debbluebird
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Re: Here I go...

Postby debbluebird » Sat May 28, 2016 11:16 pm

ViewsAskew wrote:I would hope everyone would advise people with mild RLS/WED to avoid meds (though I imagine some out of the loop doctors would not!).

This seems to be saying that people with severe PLMS and NO RLS/WED should NOT medicate without really thinking it through. As you noted, what if the PLMS is the trigger that separates some of us who augmented? That once we take meds, we turn something on by mistake?

I honestly thought I woke up a lot, too. Even after I knew I kicked my bed partner, I STILL thought that I woke up just because I woke up. I recorded how many times - 20, 30 - and went to see a bladder specialist because I was sure I peed too much. Maybe you should not discount having PLMS...


Very interesting. I don't know how I could have lived with PLMs, and not do something. At first I was given Klonopin. It didn't really work. Then they gave me Mirapex. It worked for several years. I wonder if there was something else that could have been done. I couldn't sit through a movie. I couldn't take a long drive and of course I couldn't sleep. I don't know.

debbluebird
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Re: Here I go...

Postby debbluebird » Sat May 28, 2016 11:24 pm

ViewsAskew wrote:Strange day.

I was nauseous again today and hadn't taken any vitamins as I had before. I realized I was late taking the kratom. This went with a killer headache. I was able to ingest the kratom and the nausea slowly abated. Finally the headache went away a few hours later. It was also the first day I didn't have breakthrough symptoms. I took my nightly kratom dose before bed and all seemed fine, so I went to bed - back in my real bed instead of the couch where I have been since I started this.

I haven't read up on opioid withdrawal and the movements that go with it, so I poked around tonight. They are often called RLS and sometimes parathesias. Dr. B says they are not RLS. Interestingly, they often affect people's arms! So, my legs are quiet - the true RLS - and the withdrawal is causing issues with my arms. Just like Deb. Huh.

For me, the feeling is a bit different than RLS. It is hard to describe - my arm is warm along with what is more painful for me than how I experience RLS. Also, less of the internal anxiety I experience with RLS. It's more a constant heaviness that hurts somewhat and makes it hard to ignore. When Deb said her arms hurt, I'd have to agree .


Well, at least now I know what is happening to me. Like you say, my legs are quiet. Arms, especially the right arm was still bad last night. Any idea on how long this will last. I hope, not a month or two. 60 days half life.
Also, I was only taking 15 mg a night. I thought that was a very long dose.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sun May 29, 2016 2:48 am

Deb, my right was also the worst - how strange! I found that wrapping it with an Ace bandage helped quite a bit.
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.

ViewsAskew
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Posts: 15650
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Location: Los Angeles

Re: Here I go...

Postby ViewsAskew » Sun May 29, 2016 2:55 am

mh380 wrote:Hi Ann,
That sounds awful! Since your sleep is already so lousy, it probably makes the most sense to take the band-aid approach to your methadone. Hopefully you can upregulate your endorphin receptors, get your baseline RLS/PLMS levels, and return to a lower dose of methadone as quickly as possible. Past will probably be prologue here, so I'm guessing the methadone won't lead to very bad withdrawal, and if it does, it will probably happen whether you wait or not.

About your experimentation with treatment with opiates, did you try the other opiates while you were on methadone, or did you switch one out for the other? I only ask because there was the recent video by Dr. Earley where he discussed using opiates to treat RLS, and he said that if methadone doesn't cover all symptoms, you could possibly add a second opiate that targets different endorphin receptors.

By the way, I'm impressed with how coherent you are, since you are sleeping so badly. I think if I were in your place, I'd just stare blankly at my computer and decide to write about my ordeal after it was over.


In many ways, it's been pretty easy. Augmentation still kicks just about everything else - maybe except the benzo withdrawal, which took 6 months. If I could write through that, I can write through anything, lol.

Per your question, I did try them. But, two odd things - first, I needed the max dose for all of them, so it didn't help reduce my methadone or stall tolerance. Second, and most important, every one I tried was intolerable in terms of side effects. Same primary side effect: jaw clenching, anger, annoyedness at EVERYTHING, and all of that led to incredible tension headaches. I lived with one long headache for the two months we tried all the other opioids. Well, not completely true - I didn't try one (can't remember which now) and tramadol did not cause side effects, but didn't cover symptoms.

In the end, my doctor was so upset over trialing these (she was local working with Dr. B.) that I finally just said I'd go back on methadone. That's when i came up with the idea to alternate methadone with pramipexole because I couldn't stand the thought of having nothing to help me prevent more tolerance and of maxing out the methadone in a year or so.
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: Here I go...

Postby badnights » Sun May 29, 2016 7:35 am

Ann, I'm fascinated by your description of how you perceive the differences between WED and opioid withdrawal, and by the coincidence of the arm symptoms between you and Deb. I can't help thinking that might be valuable information for some of us.

Maybe you should not discount having PLMS...
- it's quite possible that was my main problem. I was living alone at the time, so all I knew was that I was waking up a lot.
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.

debbluebird
Posts: 2030
Joined: Mon May 21, 2012 3:27 pm

Re: Here I go...

Postby debbluebird » Sun May 29, 2016 8:49 am

ViewsAskew wrote:Deb, my right was also the worst - how strange! I found that wrapping it with an Ace bandage helped quite a bit.


I will try that. I hope you wrapped it from your hand up your arm. That is better for your circulation.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Sun May 29, 2016 1:39 pm

I wouldn't recommend this to anyone, lol, but I am glad Deb and I did it at the same time. It may be a fluke, but given how many people I saw on other forums who were going through withdrawal and had these RLS-like sensations in their arms - it must be a thing.

It's definitely not the same as my RLS, but I had to study it to figure that out. It's going on right now - warm, heavy, uncomfortable, a bit painful. It's mostly in my upper arm, almost into my shoulder. Ingesting kratom absolutely helps it go away.

I managed 2.5 hours sleep so far tonight. As the methadone wears off, I need more pramipexole and I'm a but reluctant to do so. I'm up to 300 mg gabapentin and a total of .25 mg pramipexole per day. Interestingly, I don't have the severe tiredness that I have had other times when taking gabapentin. Assuming I woke at noon and planned to go to sleep at around 4 AM, my schedule would be:

noon - iron on empty stomach
12:30 green/white kratom mix
4:30 PM - .0625 pramipexole
6 PM - first iron, then another kratom - usually a green
9 PM - .0625 pramipexole and 100 mg gabapentin
11 PM - red kratom
12 AM - .0625 pramipexole and 200 mg gabapentin
Another iron at some point
4 AM - .0625 pramipexole, then another red kratom

So, I could easily add another .125 mg pramipexole and not be over a daily limit by any means. In fact, I just took .0625....2.5 hours of sleep isn't enough...I have 8 people coming over for a dinner, drat it - I need more sleep!
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Mon May 30, 2016 2:41 pm

I was able to get another 2 hours yesterday; woke up in time to prepare food and finish getting ready for the guests. Nice party.

I think I got to sleep around 2 AM or so, but I didn't check. My husband went up around 12:30 or 1 and I watched an episode of Hinterland - they are around 1.5 hours and I think I was able to sleep right after that. I woke up at around 8 AM and haven't been able to get back to sleep, yet. Maybe soon. I think that is the longest I've slept since in awhile, though, so maybe things are looking up.

I had a nasty headache yesterday. I didn't keep track of the kratom, so I could have missed a dose or gotten behind, resulting in more noticeable withdrawal symptoms. Not sure. It's a mild headache this morning.
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Wed Jun 01, 2016 2:17 am

Since pramipexole makes me tired, I've been trying to sleep at night. This is futile. Tonight I hope to just stay up until at least 6 or 7 AM, then try to sleep. That often worked in the past. Hope it does tonight.
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.

debbluebird
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Re: Here I go...

Postby debbluebird » Wed Jun 01, 2016 2:27 am

Good luck. I can't imagine doing that. It would cause me to be a zombie. That's how I was Sunday night and Monday. I just don't know anymore.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Wed Jun 01, 2016 11:32 am

That's always worked for me - but it was really hard last night. I am damn tired from the lack of sleep, but I made it until 6 AM. Except my legs are not quiet and I'd forgotten to take the kratom so my arm started aching as soon as I tried to sleep. So, I'm back up! I really hope I can sleep soon...
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.


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