What do you do at night wRLS? - Restless Legs Syn...

Restless Legs Syndrome
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What do you do at night wRLS?

Bks429
Bks429

As my RLS has been especially acting up lately (2 hrs sleep), I wonder what sufferers do at night when the symptoms are relentless? I find I go to bed with a positive attitude telling myself tonight will be different, and when I wake up again and again, I’m so disgusted and angry. Sometimes I find myself popping other pills extra gabapentin, Advil, melatonin. What do you do at night to get through the nights??

47 Replies
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You need to discern what is causing your rls.

What medications are you taking?

You mention extra Gabapentin, what is your normal dose?

Have you got a handle on triggers?

Please let us know so that we can help.

Cheers.

I think you need to follow the advice you were given 4 weeks ago. Reduce the Pramipexole very slowly whilst increasing the Gabapentin.

Withdrawal is really tough- with each dose reduction your RLS will flare up and you’ll get little sleep.

However, once through withdrawal the Gabapentin should start to really help about 10-14 days after the last dose of DA.

During withdrawal I took really hot baths, sprayed legs with freeze spray and deep heat to distract me. Put my legs up against the wall.

Cannabis really helped so if you can get hold of some- it’ll give you an hour’s sleep when withdrawal is at its worst.

Currently I am on 400 mg gabapentin. I know that everyone suggests I should go off the pramipexole, but I’m terrified of worsening conditions. I just emailed the Doctor Who prescribed the codeine, and he says he feels something else must be going on as well. He suggested I try not taking the codeine for five days and then if I’m still bad he’ll prescribe two pills. When I wake up with onenpill, I am in such a fog, dizzy with a headache, what will two pills do for me?

Currently I am on 400 mg gabapentin. I know that everyone suggests I should go off the pramipexole, but I’m terrified of worsening conditions. I just emailed the Doctor Who prescribed the codeine, and he says he feels something else must be going on as well. He suggested I try not taking the codeine for five days and then if I’m still bad he’ll prescribe two pills. When I wake up with onenpill, I am in such a fog, dizzy with a headache, what will two pills do for me?

I don’t know of any specific triggers. I think beer is one but I haven’t had a beer in ages. I’ve been trying to lose a few Isolation pounds so I’m on a pretty stable diet and really haven’t introduced anything different.

I think some people find melatonin makes matters worse but, as previously advised, you really need to start the slow wean off pramipexole.

You will be looking back on all this at some point, life will be better without it, it is only turning the volume up at present.

Jools is correct, your problem still seems to be the pramipexole. Until you have stopped this and withdrawals have diminished you will continue to suffer.

Symptoms and sleeplessness will get worse as you wean off pramipexole. However, withdrawals and sleeplessness will be worse if you wean off the pramipexole too fast. It's worth going through this temporary worsening as once you have things will improve.

You may find that reducing the pramipexole in steps of no more than 44ug every 3 - 4 weeks will make withdrawal more bearable.

You also still need to increase the gabapentin further, the minimum effective dose is usually about 900mg. Take it regularly, not as an extra!

Melatonin is not ideal for RLS. A benzodiazepine or zopiclone would be better for the insomnia.

Advil has little value for RLS or insomnia. Cocodamol, (paracetamol/acetaminophen and codiene) will be more effective if you can't get an opiate prescription.

Hopefully you have had your ferritin leve; checked recently and if it is below 100ug/L you may benefit from taking an iron supplement.

The "other thing" your doctor thinks is going on is most likely augmentation , and if you don't reduce the pramipexole this will not improve and may get worse.

The main triggers for RLS are -

Caffeine, alcohol and refined sugar

SSRI and tricyclic antidepressants.

Proton pump inhibitor and H2 inhibitor anatacids

Anti-nausea/anti-reflux medicines e.g. metoclopramide, domperidone

Some blood pressure medicines

Sedating anti-histamines as found in cough medicines some anti-allergy medicines and some sleep aids.

Lack of sleep!

Anxiety.

As well as doing things to relieve symptoms it's also useful to use strategies to relieve anxiety.

Staying in bed struggling to sleep when you can't is counter productive and you should get up.

Plan to do something with your time that doesn’t involve too much exertion and which you will find distracting. I.e. something that requires active thought NOT watching TV. It's best to avoid using anything that's backlit e.g. TV, Laptop, Tablet, smartphone etc unless you can adjust the display to filter out the blue end of the spectrum.

It's too easy to dwell on the fact that you're not sleeping, how are you going to be tomorrow, how long can you go on like this etc. None of these thoughts help.

Distract yourself and do something that you will be pleased to achieve (but don't make it something hard to achieve).

It is hard to withdraw from pramipexole, but well worth doing it. However, you need patience with it and with yourself.

Bks429
Bks429
in reply to Manerva

Thank you dearly for all your thoughts. I will get through this!!!

Joolsg
Joolsg
in reply to Bks429

It’s really tough but loads of us have done it and found life so much better off dopamine agonists. Don’t give up just go very slowly.

Most doctors have no knowledge of Augmentation or how bad it is.

Struggling to stay in bed is the worst - I just get up, have a decaffeinated drink, get out my recipe book and do a bit of cooking or baking. This is distracting, keeps me on my feet and pottering about the kitchen, and has a positive outcome! However, I still feel exhausted the next day but I keep going as normally as possible. Good luck!

You can do it

Try knee length compression sport socks also don't stay in bed I'm about to wean myself of pramipexole for pregabalin co codamol if you can get it might help

I've had 3 nights running with little or no sleep ( last night I managed a whole 2 hours ). Because I live in a detached bungalow I have resorted to hoovering ( always a problem when on oxygen 24/7 ), I've also had a shower at 2am & last night I sat & watched a dvd & I also always have music on but it's beginning to take its toll as I can't concentrate during the day. Stay safe & well. Chris

Hidden
Hidden

I know what you mean! Sometimes I just want to scream at the top of my lungs I'm so annoyed. I actually wish I could do this. I look over at my sleeping husband and just burst into tears. Sometimes I want to make as much noise as possible so he'll get up and stay up with me all night and feel the pain of unbearable exhaustion the next day. Cruel I know, but RLS makes our thoughts go to weird places....

I was up all night a few nights ago. I got so frustrated that I got online and ordered a stand-alone bathtub (we only have a shower). It was expensive, but I was hanging on by such a thin thread and needed something to put hope towards. He was a bit annoyed when I told him of the purchase the next morning, but I didn't care. I don't think anyone can know the extent of the sh*t we go through with this syndrome. It is so unfair!!!!

I have some non-medical remedies I can list for you if you'd like.

For now, I can recommend a hot shower before bed each night.

Let me know if you want my list.🙂

involuntarydancer
involuntarydancer
in reply to Hidden

I don't think you'll regret that purchase. I find that applying cold water to the legs after a hot shower often has very good results. It's not enjoyable but it only needs about 45 seconds on each legs. I think it is the counter-stimulation that helps. The legs go mad while I'm doing it but afterwards they calm right down.

Hidden
Hidden
in reply to involuntarydancer

Really?! I'll have to try the hot then cold, so thank you!🙂

I don't regret the purchase at all. In fact, once I told my husband he could use it too, he was all for it! Then I told him what color I ordered it in (pink)...

I'm really looking forward to getting it! I hope it comes soon. Thankfully I've had good nights since.

involuntarydancer
involuntarydancer
in reply to Hidden

A pink bath! Now I want one too! It should cheer you up if you have to have recourse to it during the night.

Hidden
Hidden
in reply to involuntarydancer

So true!🙂

I'll have to post a picture of it once it gets here. It is coming from someplace else in my country, so it shouldn't take too long.

Manerva
Manerva
in reply to Hidden

I'd like one of those tubs too. It would have to have legs that look like lions' paws. Gold lions' paws and gold taps.

I wouldn't mind pink either, but it would have to be shocking pink, really shocking pink. My wife would love it.

Mind you, it would probably be so heavy it'd collapse through the bathroom floor.

I don't live in a bungalow.

Hidden
Hidden
in reply to Manerva

Sounds nice... I can see it now😂

Hidden
Hidden
in reply to Manerva

I dreamt of shockingly pink tubs with legs like gold lion's paws and taps made of gold last night.

You wouldn't happen to know why, would you?😜

Manerva
Manerva
in reply to Hidden

I can't imagine.

Hidden
Hidden
in reply to Manerva

Darn, I was hoping you'd know...

I guess it will remain a mystery.😉

In addition to Twice daily taking 2.5 mg of LDN ( Low Dose Naltrexone) I take 5 to 6 mg each of CBD and THC in pill or gummy form 2 hours before bed. I also have on my nightstand Hyland’s homeopathic Restful Legs tablets that I can just pop under my tongue 3 at a time in the middle of the night when RLS flares. I find that if I have consumed any trigger foods I may also need to rub Nighttime Leg Calm essential oil blend on my low back and bottoms of my feet in the middle of the night.

This disease is mountain we are all climbing the best way we know how. I so appreciate the helpful insights from everyone. It certainly does take a large village!

My wife at 77 suffers greatly after 11pm and may get 4 hours of sleep. She gets up 2 or 3 times for 1 to 2 hours and goes on her ipad where she looks at facebook or plays mind distracting games. Some life!

only drug i'm taking is 4.5 dose of LDN . other then that sometimes advil or tylenal , sometimes CBD oil or a puff of weed gets me through the night .

I am copy-and-pasting a reply I posted a few minutes ago because it includes some suggestions that I picked up over the years from RLS forums. Most of them work at least for a while - apologies that it largely repeats another post of mine and also repeats some of the excellent suggestions posted above:

... caffeine sometimes helps when I have an outbreak in the middle of the night. Many find that about 20 minutes of a very absorbing and diverting activity such as a computer games affords a few hours of relief. Yoga stretches can do that too and many people comment that orgasm is helpful as is emptying the bladder and/or bowels. I find that applying very cold water to the legs when symptoms strike sometimes helps a lot as does applying a magnesium rub to the legs. Support stockings also sometimes help but many would run shrieking in horror at the prospect of putting them on while suffering an rls attack.

It does seem to be helpful to many sufferers to watch what they eat and ensure they have a 'clean' diet. There are some strong proponents of individual diets also such as a low oxalic acid diet, keto diet etc etc. Going to bed hungry seems to be helpful also.

It is worth being aware that some otc and prescription meds can exacerbate rls so avoiding certain anti-histamines, cough medicine etc can also be helpful. It is very important for a majority (but - again - not all) to ensure that iron levels (serum ferritin) are over 100 so an iron supplement may be useful if you are below that figure. On the subject of otc remedies, I find that taking solpadeine or other otc codeine containing pain relief can boost the impact of my meds and get rid of break-through symptoms though I only resort to this intermittently to avoid developing codeine dependence.

So I have a question. Many people say to wean off the pramipexole. Do you need another /change medication after coming off the pramepexole??

Hidden
Hidden
in reply to Bks429

Hello. Are you asking if you need another medication after coming off Pramipexole? This would leave you without any RLS meds., right?

(I'll respond more once I know we're on the same page🙂)

Bks429
Bks429
in reply to Hidden

Correct. I do have gabapentin

Hidden
Hidden
in reply to Bks429

Do you take Gabapentin regularly?

Hidden
Hidden
in reply to Bks429

It's perfectly okay to say you don't take it regularly. I'm not here to judge; I'm just trying to figure out where you're at.🙂

Bks429
Bks429
in reply to Hidden

I think I misunderstool your question. My stash of RLS medication is gabapentin, clonazepam, pramipexole, and recently was prescribed Tylenol three with codeine, but my body resists that medication, So I’m crossing that off the list

Bks429
Bks429
in reply to Bks429

Currently I’m taking 600 mg of gabapentin, .25 of pramipexole and a minimal dose of clonazepam

Hidden
Hidden
in reply to Bks429

Ok, thanks.🙂 That's what I wanted to know.

I've never taken Pramipexole and Gabapentin together (separate yes, but not together), so I'm going to let others jump in here if that's fine with you.

What I can help you with is a list of natural things that I try. Would you like those?

I think I misunderstool your question. My stash of RLS medication is gabapentin, clonazepam, pramipexole, and recently was prescribed Tylenol three with codeine, but my body resists that medication, So I’m crossing that off the list. I take 600 mg of gabapentin at night with the pramipexole in the clonazepam

Hidden
Hidden
in reply to Bks429

Ok, thanks.🙂 That's what I wanted to know.

I've never taken Pramipexole and Gabapentin together (separate yes, but not together), so I'm going to let others jump in here if that's fine with you.

What I can help you with is a list of natural things that I try. Would you like those?

I think I misunderstool your question. My stash of RLS medication is gabapentin, clonazepam, pramipexole, and recently was prescribed Tylenol three with codeine, but my body resists that medication, So I’m crossing that off the list. I take 600 mg of gabapentin at night with the pramipexole in the clonazepam

Did I really read that 3 times?

You can take pramipexole and gabapentin together. The effects add up, i.e. they combine to relieve the RLS.

The side effects can add up too!

Once I was well established on gabapentin and wasn't experiencing major side effects, I weaned off the prami. Now I just take the gaba.

Hidden
Hidden
in reply to Manerva

Don't worry, you're not losing it. I read it 3 times too!

Manerva
Manerva
in reply to Hidden

OK, OK, OK :-)

Bks429
Bks429
in reply to Manerva

Wow, didn’t send that three times????? Again thank you!!!! Hopefully this only posts once😳

Manerva
Manerva
in reply to Bks429

It did! 😃

Bks429
Bks429
in reply to Manerva

👍

Stretch legs...HARD... take schweppes indian tonic water ...at least 1 bottle. If does not work vape high thc cannabis bud if possible....stops it in couple of minutes....very reliable. Works for me but we are all different ...good luck.

Manerva
Manerva
in reply to finder1234

The commonly accepted myth about tonic water arose because it has a small amount of quinine in it. Quinine used to be tried for RLS. It was never particularly effective.

It is a myth though. The amount of quinine is so small that in order to get a sufficient amount of quinine you'd have to drink at least 20 litres, which isn't really possible.

Unless you really like tonic water it's not worth it.

Hello,

I have never posted before. I have RLS for a good part of each night, but have not been taking any prescriptions for it (yet). Here are some of the things I have used, sometimes they work, sometimes not, in no particular order:

1. take some calcium lactate (not any other form of calcium) - I use the one from Standard Process when I try this

2. take some magnesium - sometimes oxide, sometimes citrate

3. take a small dose of niacin, but not the no-flush kind - I am looking for a flush that opens up the capillaries and sometimes can provide relief and for me, it actually feels pretty good - I usually do this more toward morning when I do it, and not when going to bed or in the middle of the night

4. rub some magnesium oil or cream on the legs

5. go to a doorway and do some calf stretches, also do heel lifts up and down, about 40-50x

6. bought some Kenkoh massage sandals, specifically the style with the double velcro straps... I pull the velcro as tight as possible and then walk around for a few minutes on these (it does take some getting used to).. I haven't had these very long but I think I'm liking the feeling afterward after taking them off...especially when the "jumpy legs" are centered around the feet and not the back of the legs as in other times

I am getting a lot of nice tips from everyone on this forum, things I haven't tried. Thanks to all.

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