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.
ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Wed May 25, 2016 4:06 am

I definitely have thought of that and it's one more reason to stop the opioid for awhile. I am sooooo tired when I take it, to my husband's dismay I do not care about sex at all (pramipexole causes its own set of issues with that, so no love with either regarding sex!), and definitely is the cause of daytime lethargy, if not fatigue. I haven't felt true joyfulness of life in years. I know it colors everything.

But so do all the drugs I have had to take. So. I think that for now, I'd rather pace and wander all night if I can connect with the old psychological me. I know that the issues that I (and all of us) have faced in the last twelve years will have changed me to some extent, but I truly have often felt that most of the malaise and depression that I've felt off and on is caused by the medications, rather than internal mechanisms - if that makes any sense. Long before I started meds, I experienced a short bout of depression - it felt very different than the 4 or 5 bouts I've had in the last few years.

So, I hear you about the 2 on, 2 off or whatever the plan. There truly isn't anything I haven't tried. And, all of them affect me in ways I find objectionable. Guess it's about finding the one that bothers me the least.

As an update, it's now about 48 hours since the last 2.5 mg of methadone as well as the last 1/4 tab of the escitalopram. I feel more clear-headed today. I did use a green-vein kratom after I got up - that may have contributed. The gabapentin still makes me SO tired for about 14 hours after I take it. Doesn't leave much time to be functional during the day! I took it at 10 PM, hoping that it would be worn off when I awakened. I went to sleep at 4 AM, slept fitfully until about 10 - up at least 10 times - then finally fell to sleep until about 1 PM. I MADE myself get out of bed and sat on the couch drinking coffee for an hour until I could even get dressed. At 100 mg it doesn't seem to counteract the pramipexole quite enough. I may try 200 mg tonight. Red-veined kratom doesn't counteract it, either, unfortunately.

Oh - no issues so far other then creepy-crawlies. No headache, no stomach upset, etc. Hopefully this will be as it was the last two or three times I stopped it and I won't have any problems.
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 May 25, 2016 5:04 am

I hate the creepy crawlies. They are driving me crazy. I hope they end soon for me and you.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Wed May 25, 2016 8:33 am

Yup - me, too. They are not too bad, just enough to prevent me from going to sleep. As long as I keep busy, I'm fine. It's almost 4 AM, though, and I really am ready for bed!
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 » Wed May 25, 2016 9:34 am

Hope everyone gets some sleep tonight. (or today, as the case may be)
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
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Re: Here I go...

Postby debbluebird » Wed May 25, 2016 7:04 pm

I was up until 4 am with the creepy crawlies. Had to get up about 9 to be somewhere. I am so tried. I hope it gets better for all of us soon.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Thu May 26, 2016 6:11 am

I bet you are. I got to sleep between 4 and 5, too. As with the other nights, it was very fitful initially - for the first 4-5 hours I awakened quite often, had to move/exercise/walk a bit. But, I could get back to sleep relatively quickly. Around 10 or so I actually got a full 90 minutes in, then another 60-70 after that. I think I got up around 12:30 to 1 PM. I was initially very tired, but woke up faster than usual. No question that I am lethargic with the opioid and that waking up takes hours for me to be functional.

I can't prove anything with one day, but I felt more awake today than I've felt in a LONG time. I've had a few days like this along the way, but not enough.

I do have a headache today that doesn't want to stop and I had a bit of nausea after I awakened. But, I'd also taken iron on an empty stomach, so it could have been that. All in all, after 72 hours, my primary symptom is increased creepy-crawlies and a lot of breakthrough. That could be the withdrawal, it also could be that I'm being too careful with the pramipexole! So far, I'd say that I have symptoms exactly the same as before. What will be interesting to see is how the symptoms are in about ten days, then again when I stop the pramipexole (if I am that brave!).

Either way, if I can stay off the methadone for 30 days, I'm hoping to try a shorter-life opioid. I've not had success in the past and have tried all but two, if I remember correctly. With the exception of tramadol and methadone, all of them make me uptight/anxious/mad. I have a short temper, my jaw is clenched (which causes intense headaches), and I am not a nice person. Tramadol wasn't enough in the past to cover symptoms. Unless it is now, not sure what I can use. Then again, I'll cross that bridge when I get to it.

I may also try a different DA. I've only used ropinerole once - I was already augmented and it sent me through the roof. The side effect profile can be different between the two, so maybe it's worth it to try it and see if I can avoid some of the worst of pramipexole side effects.
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.

stjohnh
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Re: Here I go...

Postby stjohnh » Thu May 26, 2016 1:10 pm

ViewsAskew wrote: ....I may also try a different DA. I've only used ropinerole once - I was already augmented and it sent me through the roof. The side effect profile can be different between the two,y so maybe it's worth it to try it and see if I can avoid some of the worst of pramipexole side effects.


Why not try Neupro patches ?
Blessings,
Holland

Rustsmith
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Re: Here I go...

Postby Rustsmith » Thu May 26, 2016 2:24 pm

I have to go with Holland on that. Although they are considerably more expensive than generic pramipexole and ropinerole, I believe that they are less expensive than the ER versions of those 2 drugs and the time release function is supposed to reduce the likelihood of augmentation somewhat.
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.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Thu May 26, 2016 3:58 pm

l tried the patches about two years ago. Most importantly in this discussion is that:

1) side effect profile was identical, for me, as with pramipexole. Same disordered thoughts, same awakenings, same temperature regulation issues, and so on. I want to try ropinerole as it works on slightly different receptors and see if that changes this. If pramipexole didn't come with about 15 very annoying side effects, I'd not try to switch. It's inordinately effective for me.

2) since I don't plan on using them without very regular breaks, they are harder to use short term. It takes at least 3 days to get even levels in your body, so you don't have immediate relief.

Not related to this discussion, but as an aside, I augmented using the patches just as quickly as I did on pramipexole - pre-infusion days that is.
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 » Thu May 26, 2016 4:08 pm

OK - so last night I slept better initially, but only managed about 4.5 hours before the urges to move overcame me and I'm here typing instead of sleeping.

I took the gabapentin a bit later by accident. I got to sleep around 4 and awakened at 5:15 - so almost a full cycle, which is pretty darn good for me. Then again around 6:45 - a complete cycle. I woke with more frequency until I got up at 9 AM and tried some exercise and some kratom. I've been using the kratom as indicated for opioid withdrawal. It has seemed to reduce symptoms enough that I could get back to sleep, but not today. I tried for about 30 minutes - between the barrage of brain activity and the movements, I got up, checked email, etc. Tried again at about 10 AM, but didn't even make 5 minutes. Maybe I can sleep a bit later, maybe not.

Not having any opioids for about 84 hours has definitely cleared my brain, it seems. I'm a bit tired from the lack of sleep, but not foggy. And, I have more energy than I normally would. I am SO grateful for the opioids - they truly allowed me to get some semblance of my life back. But, they took another part of it. It seems that for many of us there is no middle ground. We have to lose something - often something significant - if we want to control the urge to move and get some 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.

debbluebird
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Re: Here I go...

Postby debbluebird » Thu May 26, 2016 9:35 pm

I got sleep last night too. What a relief. Glad you got some sleep too.

ViewsAskew
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Re: Here I go...

Postby ViewsAskew » Fri May 27, 2016 7:07 am

YAY!
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 » Fri May 27, 2016 10:16 am

Ann wrote:(opioids) truly allowed me to get some semblance of my life back. But, they took another part of it. It seems that for many of us there is no middle ground.

It's like we have to always be trying something different. We're either suffering and wondering what to change, planning a change, making a change, or having a bit of happy after the change, then it all begins again.

Steve wrote: the time release function (of Neupro) is supposed to reduce the likelihood of augmentation somewhat

I hesitate to say that Neupro reduces the likelihood of augmentation, even though that might technically be correct. I suspect that whatever physiological alterations cause augmentation, they're still happening in someone using Neupro. They're just being masked, and eventually the mask will not be strong enough. In my mind, it's roughly the same as taking an extra, earlier dose of pramipexole: you're treating the augmentation, not reducing its likelihood, and the treatment will work for a while but not forever.

I might be seeing this wrong, but if I'm not, the possible long-term damage to dopamine receptors that Earley speculated about (or was it Allen?) is happening even though the physical symptoms of augmentation are being masked.
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 » Fri May 27, 2016 9:11 pm

That makes sense to me, but I am not any expert in science!

It seems that many drugs cause long-term damage or alter receptors/chemistry. Opioids, Ecstasy, and many more. So, why wouldn't these? And, as someone who spent about 16 months augmented, it really didn't take much, initially, to cover the extra symptoms. First, I just took the same amount an hour earlier. Then two hours earlier. It wasn't until the third or fourth increase that I added a bit more - and it still wasn't much.

I just read something in this issue of NightWalkers that was very interesting. It was in the article about PLMS. I should write this elsewhere, but for now, here it is. The article said that, "Someone who does not have RLS, but rather has PLMS with poor sleep or daytime fatigue, may want to consider treatment options if PLMS symptoms are severe enough to offset the risk of medication side effects. ...most RLS and PLMS experts do not advocate treating these movement in isolation when there are no symptoms of RLS."

I had to wonder if I made a mistake all those years ago. Well, not me, but my doctor. While my PLMI was over 100, I rarely had RLS. I had had it for years and it was very manageable. I have to wonder if people with mild RLS should also NOT try most of these drugs. I am not sure what would have helped me - maybe nothing and I'd be very tired and still not able to work. Not sure if that is better or not. Either way, I suppose, it would have sucked.
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 » Fri May 27, 2016 11:47 pm

Very interesting. Really, the same with me. Very mild RLS, but severe PLMs.


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