First night without at all pram. Awfu... - Restless Legs Syn...

Restless Legs Syndrome

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First night without at all pram. Awful withdrawal

Katerina22 profile image
21 Replies

Its 4 in the morning and i cant get sleep at all.Rls is awfulI and i am exhausted.The paracetamol /codeine pills (2) I have taken to help me did nothing.Compression socks ,cold baths,massages.No help at all...I am supposed to go to work in the morning...What can i do to get some sleep?Help!!

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Katerina22 profile image
Katerina22
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21 Replies

Oh man, I am so sorry! It is awful, isn’t it? I just had a bad night myself, so I’m too fogged up to offer concrete advice. Just know that I (and all of us) know what you’re goung through and are cheering you on.

In regards to work: could you explain the situation and have your workload decreased during this time? Or maybe go on health leave until this blows over (and I promise it will) ?

LotteM profile image
LotteM

Hi Katarina, call in sick if you can. Don’t know about your work situation, but you won’t be much use today.

And contact your md and ask dor a stronger painkiller. Often, tramadol is a good one. Once the withdrawal starts to ease, you may be able to lower your dose. By that time you will have started the gabapentin or pregabalin - if I remember correctly your md and your plans - whichon its own in not good enough during withdrawal.

I hope that at least during the aay the rls will keep relatively quiet.

Katerina22 profile image
Katerina22 in reply to LotteM

Ι cant find my doctor.He doesnt answer the phone. I asked for an opiod from the neurologist who works at hospital.She didnt give me any...I am desperate.Rls drives me crazy!No sleep at all!

Joolsg profile image
Joolsg in reply to Katerina22

katerina,

I was in that state 18 months ago. I took my husband with me to the GP and I bawled my eyes out. My husband confirmed to the doctor how horrendous withdrawal was and the GP relented and gave me tramadol and zolpidem sleeping pills.

Take a video on your phone of what it is like. The evidence of your legs jerking and the distress should persuade your doctor to give you tramadol AND a sick note to sign you off for a week to allow you to get through withdrawal.

Print off pages from this website and show them to your GP. Do not give up. The more printed info you can show your GP and neurologist, the better.

Most GPs and neurologists are completely ignorant of how horrendous DAWS really is. You need to show them hard evidence. Phone videos and printed pages from here and take in a family member or friend for extra support.

Joolsg profile image
Joolsg in reply to Joolsg

If all else fails, go toA& E with all the evidence and make the on call registrar look at this website and the articles on augmentation and withdrawal.

Katerina22 profile image
Katerina22 in reply to Joolsg

Thanks Jools!

jan_ET profile image
jan_ET

oh you poor thing I had a terrible night last night the worst - only thing I could do was walk I live in large complex so all lit and go for long walk then came home and distracted myself with video on UTube and just let the legs do their thing - im learning the worst thing I can do is throw more meds on board - just move and get your mind on something that will take concentration - thats what I did but the people I work with didnt have a very good day!!!! Take care - Jan ❤️🌺🙏🦋🌸

desperatedan1 profile image
desperatedan1

hi Katerina,i take 600mg of gabapentin at 10pm+1pramipexole,then repeat 2hrs later hope this helps you as it helps me get better soon

This is a truly brutal condition. Your doctor has recommended you to withdraw from this medication; he should take responsibility for the impact. I do not think that it is possible to work during the acute withdrawal phase from a dopamine agonist. Your doctor should give you a sick note (if that is a viable option at all for you). He should also prescribe tramadol. Jools' suggestion of bringing a video in is a good idea. Another would be to email your doctor repeatedly through the night so that he cannot suggest that you are exaggerating. It would also be a pain for him to have to trawl through the emails which might make him more amenable to accommodating you.

davidadill profile image
davidadill

I take 24 milligrams of codeine each night, which is less than half of what you are using. Last night I slept 8 hours and 3 minutes without a problem. Without the codeine, I usually get up 2-3 times per night due to RLS. I have 4 pieces of advice for you. First, I take 500mg of magnesium each night at 6pm. I used to take it at 11pm, but it did not work nearly as well that way. The second thing I do is walk rapidly for 15 minutes just before going to bed. When I do suffer from RLS during the night, I also walk rapidly for 15 minutes and that solves the problem for at least a couple of hours. The last piece of advice is that usually after about 6-8 weeks, the efficacy of the codeine starts to decline. So I stop using it for 8-10 days, which is painful. Fortunately, after that time efficacy always returns for me, at least. I hope some part of this works for you.

jan_ET profile image
jan_ET in reply to davidadill

omg yes! I have learned that I am hypersensitive to all chemicals and I have magnesium and have found that a walk always stops the RLS. thank you so much!!! I have felt so overdrugged and you have given me the answer!!! blessings davidadill I will absolutely take your advice - thanks Jan

jan_ET profile image
jan_ET in reply to jan_ET

hi david i have just checked my magnesium and it is 350mg per tablet do you think 1.25? is it important what brand we use I just bought Cenovis which has Mangenese and Vitamin6 added - sound ok?

jan_ET profile image
jan_ET in reply to jan_ET

i tried to edit but not successful - when you say Rls wakes you up - in what way do your legs and arms move ? or do you just wake up?

davidadill profile image
davidadill in reply to jan_ET

My legs just move. 500mg seems to work for me. I weigh 170 pounds. Maybe that matters but I am not sure.

Sunshine458 profile image
Sunshine458 in reply to davidadill

What kind of magnesium do you take? I have problems finding a magnesium that doesn't give me diarrhea!! Thanks so much!!

Sunshine

davidadill profile image
davidadill in reply to Sunshine458

I take Sundown Naturals Magnesium about 5-6 hours before going to bed. The label says that it is really magnesium oxide.

Sunshine458 profile image
Sunshine458 in reply to davidadill

Thank you very much I will DEFINATELY try it too!!

Sunshine458

Billdel profile image
Billdel

Katerina22, I had the same withdrawal problem from pramipexole. The only thing that I eventually, found to relieve the 24/7 problem was a Oxycodon/acetaminphen - 10/325 pain pill I had not used after a recent surgery. 1 pill took the edge off, but still couldn't sleep. 2 pills allowed me DEEP sleep. I was hesitant to use them regularly, not wanting to precipitate another withdrawal problem. The further I got thru the withdrawal from augmentation that I got, I found 1.5 pills worked without leaving me groggy and hungover the next morning. I still tried to use them only every few days as I really needed it.

Hope this helps and good luck.

Katerina22 profile image
Katerina22

Dear Billdel,my doctor put me back to 1 pill 0.18 pramipexol and added 1 lyrica 25 mg.I havent been able to talk again to him as its difficult to find him.I dont know what he has on mind but its first goal was to take me off pramipexol believing its augmentation.I will let you know when i talk to him again.Thanks all of you for the support!

Joolsg profile image
Joolsg in reply to Katerina22

The man is an idiot. Does he really think adding Lyrica 25mg during acute DAWS will help?

Withdrawal from prami is absolute hell and you absolutely have to have a strong opioid during this phase. Tramadol or oxycontin. You will not get addicted to them- they are used during withdrawal and then as you increase dose of Lyrica slowly up to 300mg, you can slowly reduce the opioids.

Anyone who has gone through withdrawal knows how you feel Katerina.

Why is your doctor putting you back on prami when you have stopped it and gone through hell? He needs to give you an opioid. Walking won't stop the hellish jerks during withdrawal. Magnesium won't help during withdrawal either- that may help once through the other side but not while you're going through it.

I can only urge you once again to email him all the info on withdrawal and the link to the video on opioid use for RLS. Involuntary Dancer's suggestion to email every 10/15 minutes with an account of what you're going through is a great idea.

I despair of GPs and their ignorance of how to withdraw from dopamine agonists in a humane way!

nathanwilde profile image
nathanwilde in reply to Joolsg

I second this. I cannot see 25mg of Pregabalin having any effect. I presume he's hoping the placebo will be enough.

Opiates aren't effective for me, but have you ever tried Cannabis, Katerina? I hear it can provide very effective short term relief.

Best of luck to you.

Nathan.

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