Round 50?: Hi all - I've searched the... - Restless Legs Syn...

Restless Legs Syndrome

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Round 50?

erinjee profile image
27 Replies

Hi all - I've searched the forum trying to figure out the answer to my question but it all seems to vary so much. I am 3 years in on buprenorphine now with RLS being pretty well managed (WOOHOO). I had been struggling to lower that 2mg sublingual dose due to extreme fatigue. I had tried pregablin previous to the buprenorphine and it didn't do much for me but after some discussion here, I started that again. With 150mg of pregablin added to the buprenorphine having been on it awhile, I was able to get the bup down to 1mg ...but still experiencing extreme fatigue. I was also aware that my fatigue could be exacerbated by sedated breathing at night due to both of the drugs and I started listening (app on my phone) which confirmed something was going on there where it had not been an issue prior. I suspected it was more buprenorphine than pregablin and tried increasing pregablin to 225mg (all I had were 75mg) but that kicked off my RLS. Somewhere in all the constant reading I stumbled on NAC. I saw that people had mixed results here with it but decided to try it. Almost immediately I felt a bit more clear headed and after a weekish of NAC, I tried to go back up to 225mg pregablin with no RLS and was able to then reduce the buprenorphine to (roughly) .5mg of sublingual. I am going to ask my doc for some 25mg pregablin to see if I can lower that 225mg dose just a bit too but I am still in the 'incredibly tired ALL the time' place. While I do feel like it is a slight bit better, I almost feel like that better has more to do with the NAC than anything else. All that while realizing that my RLS is fairly managed and I am off the nightmare of pramipexole - I am beyond relieved and excited for that. I do experience some PTSD around sleep/going to bed/a lifetime of RLS in general that I think Shumbah mentioned which is frustrating but have not let that take over. Does anybody have any thoughts or ideas (or their own expriences or wins) in relation to the fatigue with buprenorphine or pregablin or any of it? I am so tired of being soo soo tired.

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erinjee
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27 Replies
SueJohnson profile image
SueJohnson

You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other and pregabalin is known to be more sedating. Multiply the pregabalin amount by 6 to get the correct dose. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

erinjee profile image
erinjee in reply toSueJohnson

I had no idea. Thanks for that - I'll ask my doc!!

erinjee profile image
erinjee in reply toSueJohnson

Sue - do you know if it's a straight switch or do I do better slowly moving down on pregab and then up on gaba?

SueJohnson profile image
SueJohnson in reply toerinjee

It's a straight switch.

erinjee profile image
erinjee in reply toSueJohnson

Thanks. I am forgetting to mention the front end of fatigue with the 2mg buprenorphine. That fatigue was the main reason I was trying to lessen the amount. At that time I was not taking pregablin at all. As I decreased the buprenorphine, I do feel like the fatigue is better, just still enough to impact my daily. So that makes me go back to wondering whether it’s more buprenorphine related or hell…both now?

Pippins2 profile image
Pippins2

Have you been tested for sleep apnea?

erinjee profile image
erinjee in reply toPippins2

Not yet - that's actually what I am trying to avoid. I know the breathing issues are different with these meds and have heard several people talking about dealing with sleep apnea now that they are taking them. I am trying to figure that out before testing since I know that what is happening is specifically new to buprenorphine. It's hard to keep stacking things on top of each other just in the effort of 'management'.

707twitcher profile image
707twitcher

I've been trying to research buprenorphine usage recently. Unfortunately, there is still so much guesswork involved.... That being said, I believe that the buprenorphine side effects on the transdermal patch are less than on sublinguals. One possible reason for this is that one ultimately winds up with about 3 times more drug in your system on the sublingual than when using a comparably effective dose on the patch. Using a 30 hour half life, and comparing 400 mcg of sublingual vs. 7.5mcg/hour patch (comparably effective doses), one ultimately (after a couple weeks usage) winds up with a max of about 300 micrograms of buprenorphine in your system on the patch, compared to about 900 micrograms using sublinguals. I'll caveat this by saying that the effective half life of buprenorphine (looking at the period during which the analgesia effect is present) is much less than the 30+ hour elimination half life (maybe 5-6 hours). But I suspect that some side effects may be more driven by the longer half life than the shorter, effective half life. Pharmacokinetics aside (I know nothing about this field), other comments on this site do confirm that many people have fewer side effects on the patch. I've found that to be true for my constipation.

So, if you want to try the patch, take the dose in micrograms of the sublingual that is working for you (500 if I understand your post correctly) and divide by 60. So 8.3 for the patch. That isn't an option (only choices are 5. 7.5, 10, 15, 20), so probably the 10mcg patch. It takes over 24 hours for a patch to reach full effectiveness when you first start. (Not the case for subsequent patches when you are removing one and replacing it with a new one.) So you'll need some of your subligual the first night.

There are downsides to the patch. Some people have reactions to the adhesive. You likely will need to replace them earlier than the prescribed 7 days because charting the effective dose in your body looks a bit like a bell curve - peaking from days 2-4, but tapering down on either side of that. I'm getting 6 1/2 days out of a patch, but many others only get 5 days before needing a change. The patch is also far more expensive for US insurance purposes -my copay for 4 patches [26 day supply] is $47, vs. $14 for 15 suboxone strips that last me 75 days or so.

erinjee profile image
erinjee in reply to707twitcher

That’s great information, thank you. I asked about the patch way back and my doc looked at me like I was crazy. I haven’t had that conversation since. They looked at me that way for buprenorphine in general too but then continued the conversation.

Insurance doesn’t cover the sublingual for me so I’m sure the patch wouldn’t be either. That might end up being an issue. I’m only out of pocket $19 per refill which is now lasting me at least 60 days and longer.

LotteM profile image
LotteM

Do you feel that the NAC help led to lift the fatigue if the buprenorphine? I have severe fatigue probably due to buprenorphine too. And I still have some NAC somewhere…

erinjee profile image
erinjee in reply toLotteM

Yes I do. I notice the clarity in my thinking and overall energy levels (once I finally can make my body work with me in the morning). I also feel like it’s helped somewhat with the RLS and getting down on the amount of buprenorphine I was taking. There’s research out there on the breathing component - people take it for copd issues and other lung/breathing problems. A colleague of mine was just told to take it for long covid symptoms and it’s really helping her too. So whether it’s clearing my breathing some from the sedated buprenorphine or it’s clearing the fog some separately during the day, I do feel that it’s helping with my overall fatigue I just wish I could get rid of it altogether.

Let me know if you try it again. I’d love to know if you feel like it helps you!!

LotteM profile image
LotteM in reply toerinjee

Can you tell me a bit more? Like how you take and when?

erinjee profile image
erinjee in reply toLotteM

I started with 600 early evening which is 1 pill and then after a few days added the 2nd for 1200mg which is what was recommended in the reading and from people I talked to. After a week or so, I did the same in the morning. Started with 600 and then some days later added the second for 1200mg. The information out there says to take it 30 min before or after food, that its better on an empty stomach so I try to do that as well.

I have not recreated it yet so I can't say definitively but there were two or three days in there where I took the NAC in the evening and did not take my regular others (hadn't refilled yet) which included magnesium. I was up alnight long - zero sleep (no rls) just awake. So I stopped taking them at night for a minute as it seems, for me, like that magnesium is the necessary pair to it. As soon as I was refilled on my magnesium I started again and it's been fine.

LotteM profile image
LotteM in reply toerinjee

Hi erinjee, I (re) started the NAC. Nothing leftover, as it was some 6 years ago anyway. I did find in a reply of that time that it helped me a little with the tired-but-wired feeling. I now have only the tired feeling. Almost more mental than physical.

This is my third morning with a 500mg dose of NAC on an empty stomach (first thing in morning. I anyway always prepare breakfast first, get dressed and then sit and eat and now try to have about 30min in between the NAC and breakfast).

The past two days I felt indeed better. Didn’t need to lay down and sleep/nap in the afternoon and got more done than usual (which was next to nothing). I couldn’t get started earlier and had often little perseverance, and at least the starting bit was less of a problem.

Very early days, we’ll see. And that with only 500mg in the morning. Btw, I am on a buprenorphine patch, I didn’t find it made any difference on my fatigue . Unfortunately. As I am on 5 mcg/h I can’t go lower unless cutting the patch and then my RLS breaks through. Tried that, unsuccessfully.

Meanwhile how are you doing on the NAC?

PS I lived for some 7 mo in OK in 1999 Stillwater, working at OSU. I liked Tulsa, but otherwise felt very much a stranger there. People were nice though!

in reply toLotteM

Hi Lotte, I don't know if I have mentioned this already but I experience daytime fatigue and two things that definitely help are LDN (1.5mg approx) and COQ10. Both give insomnia but the latter far more so. I thought I would mention it in case the NAC doesn't work for you long term.

LotteM profile image
LotteM in reply to

Thanks. Interesting. I tried them both at a much earlier state. Q10 for the fatigue (no noticeable effect), LDN for the RLS. I couldn’t get the latter to work for me either. Was still taking oxycontin 10mg in the evening at the time, and took the LDN in the morning. Gave up at some point.

I’ll keep them in mind though. How do they work for you? Keep the edge off?

in reply toLotteM

That's interesting they didn't work well for you. COQ10 was amazing for me in terms of the energy boost, i felt i had 3x my usual energy. The downside was the insomnia, even on a low dose so i couldn't continue it. LDN improved my energy but not as much as COQ10..it was a subtle but definitely noticeable effect in that i didn't need to rest on days that i took it. It also gave me mild insomnia.

LDN is being used for ME/CFS and Long Covid (if there is such a thing as there now seems to be doubt over that diagnosis).

I have been investigating the cause of my daytime fatigue for some time now. Doctors think that it is likely the medication i take i.e. pregabalin (it was worse when i also took a low dose of clonazepam) but may be due to other things. I do hope you find something that helps because i know how debilitating it can be.

Simkin profile image
Simkin

I also take buprenorphine (with gabapentin) & I do need to sleep a lot and I have to have a 45 minute sleep in the afternoons.Can you tell me what NAC stands for??

Erinjee are you in the States or UK? Maybe it is an American drug?

SueJohnson profile image
SueJohnson in reply toSimkin

N-acety Cysteine It OTC

Simkin profile image
Simkin in reply toSueJohnson

Gosh. I have never heard anyone mention it in the UK.

erinjee profile image
erinjee in reply toSimkin

It's just a supplement and I had not heard anything of it either. I don't think people are readily asking or talking about it because it's been around for years. After looking it up and reading about it there are lots of things that it may or may not touch on depending on who you are but does seem to get into the glutamate production which impacts us with RLS and the breathing/sleeping etc. It's an interesting read.

Oh - and US here, Oklahoma.

Simkin profile image
Simkin in reply toerinjee

Oh thanks. That's interesting.When I go to the States to visit my son your chemists usually give me completely different medicines to the ones I use in the UK. Or they have different names.

RiversW profile image
RiversW

I can't add much to what has already been said, but I will say my experience with the BUP patch had been very positive. No constipation or fatigue issues. The only side effect I have noticed is an increase in anxiety as the patch loses strength. A change of the patch takes care of that problem. Also the patch, as has been stated here many times, does not last the prescribed 7 days. I change every 5 days. Good luck, Rivers

DicCarlson profile image
DicCarlson

NAC - I tried this I guess years ago for RLS with little effect. But, recently re-instituted a 500mg dose in the morning (empty stomach). I started it as a therapy for Covid symptoms like brain fog that can hang on for many months. NAC is N-Acetyl-Cystine and is used for Tylenol poisoning in emergency rooms and also has liver and lung function improvements. It can also help manage Glutamate levels - the leading excitable neurotransmitter, widely associated with sleep issues. Side effects are marginal - read more about it here...

healthline.com/nutrition/na...

LotteM profile image
LotteM in reply toDicCarlson

Hi Dic, yes, I remember you were on it years ago. How long since you started it recently ? And any noticeable effects?

DicCarlson profile image
DicCarlson in reply toLotteM

I started it maybe 2-3 weeks ago. I would guess it has assuaged any Covid lingering symptoms including a persistent cough from post nasal drip, brain fogginess, and perhaps helping with Glutamate excitability which can interfere with sleep. There is a timed release version from Jarrow - NAC-sustain that might be an option if taking it later in the day. I think you can take as much as 1500mg without side effects. However, if on other meds I would consult a doctor or pharmacist for advice.

LotteM profile image
LotteM in reply toDicCarlson

Thanks for the details, Dic. I found in my earlier replies (about 6 y ago!) that it helped ‘a little’. Shall give it another try.

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