Restless Legs and treatment with only morfin ?

[Gibbel]

I have gained a lot of knowledge and experience here - now I am here again.

After many years of treatment with pramipexole, had augmentation and is now using morphine to taper off and then have to start on pregabalin. Is 82 years old.

I have previously tried both pregabalin and gabapentin - but perhaps in too low a dose, because neither of them meant more sleep at night, on the contrary, dizziness well into the day! Both preparations can probably also result in augmentation?

Sleep deprivation is a well-known torture method - and the fear of continued no sleep and perhaps also augmentation again can perhaps even the thought of a preparation with that risk cause what is called a non-placebo or nocebo effect?

My question is: Does anyone have knowledge or experience of ONLY being treated with a morphine preparation? Know very well that morphine is only a pain reliever and may not take the neurologically conditioned symptoms of RLS - and yet?

When I am interested in hearing about any knowledge and experience with only morphine preparation, it is because this alone helped my mother who suffered from severe RLS. For years she stood tripping at night at a shelf she had set up at standingheight and wrote her memoirs. During the day she was dead tired and the lust for life was gone. It has been in the years up to 1990, when doctors in DK barely knew what kind of disease RLS was. My mother was then about 78 years old.

Then it happened that she had a collapse in her back with excruciating pain. Her doctor prescribed morphine tablets and a single sleeping pill. And what happened? My mother could now sleep up to 5 - 6 hours a night. We got our old mother back. All the many tasks that had previously filled her life were resumed - and that was until she died of a blood clot one early morning at the age of 88.At no time was her morphine dose increased.

My 10 year older sister also had severe RLS. But her doctor thought he knew that KININ was just the thing! It didn't help track. She only lived to be 75 and I think she died of yes - lack of sleep.

Excuse my bad English -using Google Translate

Gibble

[Joolsg]

Morphine was the first drug ever used to treat RLS successfully in 1670, by Dr Willis. Willis-Ekbom disease.And yes, many people use low dose opioids to treat RLS.

I use 0.4mg Buprenorphine and have zero RLS, night or day and sleep 8 hours a night.

It depends on your doctors.

In the UK, many doctors are not up to date on RLS and still hold the mistaken belief that everyone taking opioids will develop addiction and tolerance. That doesn't happen when RLS patients use opioids for RLS, unless there's a history of abuse, which medical screening should reveal.

Gabapentin and pregabalin will not help RLS while you are still taking Pramipexole. They start to work around 3 to 4 weeks after the last dose of Pramipexole. They should only be taken at night. Not during the day. The dizziness settles after 2 or 3 months.

If your doctors are willing to prescribe morphine, or another opioid for RLS, then you can stay on it for decades without increasing the dose.

Dr Winkelman's opioid register sets out the various opioids used for RLS, and the average doses. Methadone is the most widely used opioid in the USA.

massgeneral.org/rls-registry

[Bikerguy1 in reply to Joolsg]

Hi JoolsgDo you take anything in addition to the opioid you take?

Thanks!

[Joolsg in reply to Bikerguy1]

I take 0.4mg of Buprenorphine and 25mg of pregabalin to counter opioid induced panic attacks and sweats.

[careerSquirrel in reply to Joolsg]

Is Dr Winkleman’s register known in the UK amongst medical professionals?

My recent trip to hospital in UK and the mention of opioids left the consultant reeling. It is astonishing how much they are closed to the idea that this is a legitimate method

[Joolsg in reply to careerSquirrel]

I despair. They are so reluctant to read the research. They are fixated with opioids causing addiction and losing effectiveness. That may be the case for pain treatment, but RLS treatment is different.The evidence is becoming harder to ignore.

Targinact is an opioid and is expressly licensed for RLS. It has its limitations - many find its short half life produced mini opioid withdrawals.

There are a few hospitals scattered around the UK that are aware of the benefits of long half life opioids for RLS. Bart's in London now prescribes methadone and Buprenorphine for MS patients experiencing RLS.

But we have an uphill battle.

Sigh....

[SueJohnson]

The main problem with morphine as with most opioids is that it only lasts 4 to 6 hours and needs to be taken that often or your will suffer mini withdrawals. I would recommend buprenorphine or methadone as they are long lasting.

[SueJohnson]

I wouldn't worry about augmentation on gabapentin nor pregabalin as it is extremely rare. And Joolsg is correct about when to start them and about dizziness.

[Kaarina Administrator]

Hi Gibbel, Thank you for using Google Translate. I see you have already received replies.

[TheDoDahMan]

Dr. Mark Buchfuhrer, world-renowned RLS specialist, has me on low-dose (10mg/day) methadone which immediately allowed me to sleep 8 hours a day. I consider this prescription to have saved my life. I'm 78 and have been on the same dosage for 5 years. The biggest problem is finding a doctor brave and knowledgeable enough to write the prescription.

[HipHop1972]

Hi Gibbel. Well done with translation never easy. I see you have replies already and think Joolsg in England and Sue Johnson in America have given you the best information to help you.

Good luck from Hiphop1972

[HipHop1972]

hello Gibbel. I sent you a message earlier suggesting you follow the posts of Sue Johnson in America and Joolsg in England, two extremely knowledgeable people on this forum. We are all different and react differently to meditation and unfortunately my reaction to Progabalin was not good with very bad side effects so had to slowly withdraw from it.

Best wishes

Hiphop1972

[Beater in reply to HipHop1972]

Hi Hiphop, I am having the same experience with pregabalin and looking for a safe taper. May I ask you how you your method of withdrawing from it. It's been over 1.5 years that I have been looking. I have come down by 50mg but it was 25mg cuts and the second one did me in, it was too much. I'm now on 100mg 50pm and 50am and struggling. Prescribed for pain and never helped. I'm somewhat bedridden and the withdrawals are exacerbating my pain. Thank you for reading. PS. I'm not on any pain meds but I am on benzos which is a whole other issue that I have to deal with. I'm 65 and it all began with open heart surgery 3 years ago.

[HipHop1972 in reply to Beater]

Hello Beater. I hadn’t been taking Pregabalin for very long when I started to suffer swollen legs, blurry vision and what was of more concern was Renal Impairment (kidney function) . At that stage I was taking 200mg Progabalin so reduced by 50mg every couple of weeks. I think the secret is reduce by small doses very slowly I think I rushed it a bit owing to bad side effects but I’d not been taking it for as long as you have.so would suggest try 0.25mg every 2 weeks and see how it goes.

Good luck and best wishes Hiphop1972-

[Beater in reply to HipHop1972]

Thank you so much. Yes slower wins the race. I think that .25 might be a bit too slow to start out but if that's what it takes I'll do it.

[SueJohnson in reply to Beater]

I didn't see your reply on the withdrawal from pregabalin 16 days ago because it wasn't a reply to me and therefore I wasn't notified although you intended it to be. Since reducing by 25 mg every 2 weeks was too much, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

[Beater in reply to SueJohnson]

Thanks Sue. The comment was actually meant for the person who responded to you, I guess it got lost in translation. I really do appreciate your help but there really is a no one size fits all for withdrawal and there are so many factors to figure in, ie: comorbidities, other medications, allergies, side effects, etc.. I do actually own a jeweler's scale but to say shave a little off and then again in 2 weeks is not very helpful or safe advice particularly for people who don't have a clue. They may shave off more this week and less in 2 weeks which can lead to a boatload of more problems including seizures and death. So while I genuinely do appreciate all the help that I see you provide as you obviously care a great deal, it's not always safe advice. No offense intended. I am currently in withdrawal from pregabalin after a failed benzo taper using the Ashton Manual while recovering from open heart surgery and in withdrawal from beta blockers which caused tolerance withdrawal from the benzos. Went to 98lbs, collapsed in the street and off to the hospital where they refused to help with my taper. I had gone from 1mg kpin to less than .5 and they put me right back on them. I had a rebound effect and had to switch to diazepam but I am taking 10mg less than they prescribed as I was already down on the benzos. My CNS got damaged in the process and they put me on lyrica which I have never tolerated in over 1.5 years yet they have no problem with me wobbling all over when I manage to get myself up and moving around because my back is now atrophied due to being bedridden for 3 years. I have not left my house alone for 3 years as I am too weak and dizzy. My cottage sits empty and my car hasn't moved in 3 years. I can't even cuddle with my dog or spouse. If you have any advice on how to make the side effects of withdrawal a little better I would be so grateful. I am using Nacet and L-theanine as well as my regular magnesium, vitamin c and d. I was using a ton of supplements but I'm iffy about that too. I'm open to any and all advice.

[SueJohnson in reply to Beater]

Oh I am so sorry. That is terrible what you have been through and the ignorance of the doctors.

The whole point of the jewelry scale is so one can measure what they shave off and use the same amount at each reduction. Unfortunately I can't help people who don't follow this advice.

I'm afraid I don't have any other advice to help your withdrawal. Except, 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. 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 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. Then to withdraw from it try the same method.

[Beater in reply to SueJohnson]

Hi Sue, thank you so much for your information, I really appreciate your advice. I wanted to ask you about the absorption of pregabalin and magnesium. I often see you to advise people to take their gabapentin 3 hours after the magnesium, I am wondering if the same holds true for pregabalin and magnesium? I have been taking it 3 hours after but I would rather take a at the same time being bedtime as I am in withdrawals now from pregabalin and taking l-theanine to help with the withdrawal symptoms and that needs to be taken on an empty stomach My issue is that there's not enough time in my day to take my meds and supplements on an empty stomach? I hope that makes sense and once again thank you so many for your kind help. PS. I have already cut my dose from 150mg a day to 75mg a day. The first cut was 25mg and it was a breeze 2nd cut was 25% and it was a beast and I held for 6 weeks. 3rd cut was 12.5mg and it was hard but I managed and held for 10 days and yesterday I made a 4th cut of 12.5 mg and it's been rough. I'm taking nacet/NAC to help with the withdrawal symptoms also. I think that I should probably reduce my cuts now to 10% probably. I do have jewellers scales.

[SueJohnson in reply to Beater]

You can take magnesium at the same time as pregabalin. That only applies to gabapentin.

[Beater in reply to SueJohnson]

Thank you so much. That saves me a boatload of problems. It's so hard to get any such concise answers. I've been trying to find that out for 2 years now.