Any advice would be wonderful - Restless Legs Syn...

Restless Legs Syndrome
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Any advice would be wonderful

Mulberry100
Mulberry100

I constantly follow the posts on this sight and have found a lot of comfort from knowing there are others out there that know what I’m going through. I am hoping someone will be able to advise me about coming off the nupro patches. I have used them for almost 6 years. I started on 1 mg and quickly moved onto 2 mg, then 3mg. Because of what I had read about augmentation I chose to drop back to 2mg and having a supply of 1mg patches for when things got really bad! For the last 4 or 5 months I am convinced I am experiencing augmentation as my legs started to, frankly, drive me insane in the afternoon and continue through the night. On average I have absolutely no sleep 3 nights a week. I have seen my lovely GP and she has prescribed Gabapentin and have reduced the patches to 1mg with 100mg Gabapentin taken 3 times one at 6 another at 8 and the last at 10pm. I am still having some horrible crazy legs every evening, although I feel I am coping better. What I’m not sure of is whether I should continue with the 1mg patch and increase the Gabapentin up to a maximum of 900mg or if at that stage I should be finished with the patches altogether. My GP is very sympathetic, but admits she isn’t an expert and knows that I have gathered a lot of information from this brilliant forum. I have suffered the most horrendous nights for almost 30 years and I am now really desperate to find something that will help. I would very much appreciate some advice. Many thanks, in advance.

19 Replies
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Hello.

It does sound as if you have quite a good doctor who confesses to knowing little about RLS and is willing to negotiate its treatment with you.

By all accounts, a total of 300mg gabapentin is insufficient to be effective for RLS and 900mg is considered the minimum.

It also needs to be considered that it takes a few weeks for gabapentin to become effective.

I suggest you increase to 900mg before reducing the neupro any further, and perhaps 2 or 3 weeks before. Then reduce and stop the neupro.

Note that the lower the dose of neupro gets, the harder it is to reduce it further. It is harder to reduce from 1mg to nothing, than it is to reduce from 2mg to 1mg. To reduce slowly you can cut the patches in hakf, or even quarters.

There is some rationale for splitting the dose of gabapentin as you do. The main reason is that the higher the dose of gabapentin you take at any one time, the proportionally the less of it is absorbed. However, this doesn't really make a difference at lower doses. It only really has an effect if you take more than 600mg.

Accordingly, to ensure you have the maximum amount available when you most need it, i.e. bedtime, it's probably better to take up to 600mg 2 - 3 hours before bed in one dose. (It takes 3 hours to ge fully sbsorbed).

If you take more than 600mg, split the dose, 2/3. 2 - 3 hours before bed and you could take 1/3 at least 3 hours before that.

A 900mg dose could then be split into 2 i.e. 600mg and 300mg.

Hopefully you're aware that initial side effects of gabapentin drowsiness, dizziness and gait problems (stumbling). This can cause falls. If you take it too early, then this can be a problem. When I first started taking gabapentin, some nights I had to go to bed early and had to literally crawl on all fours to get there.

Luckily this wears off after a while.

Here's a link to an article which, more or kess, supports my suggestion.

uptodate.com/contents/treat...

Note that once you've stopped neupro and any withdrawal effects have vanished, you may need to increase the gabapentin, anything up to 1200mg.

Mulberry100
Mulberry100 in reply to Manerva

Thank you so much for the information, it has helped a lot and I’m wondering if you would mind if I showed your response to my GP?

Manerva
Manerva in reply to Mulberry100

It's not usually a good idea to show posts on here to a doctor, you might not get the response you want!

However, you could show your doctor the article I gave a link to. The author is an American Professor of Neurology and a RLS specialist.

Mulberry100
Mulberry100 in reply to Manerva

Thanks, I will do that.

raffs
raffs in reply to Manerva

Fantastic advice as always Manerva. Continue with the patch while the Gabapentin reaches a decent therapeutic level.

You might be in the position to access cannabis and if so that can help in the withdrawal and move over to Gabapentin.

Also moving away from drug control - stretching helps, check out some of the yoga videos on youtube for ideas of good stretches that will ease things a little.

Hot baths and showers - as hot as you can take it! I'm am going to throw in something someone suggested recently here - hot water bottle placed on sacral area of the back.

Get your iron levels checked - lower iron means higher RLS. Search gentle iron in the search box at top right of page.

Double check you aren't taking any drugs that could be making things worse like antidepressants.

Can I also add - HANG ON TO YOUR DR. They sound like a keeper. So many know as little as she does but refuse to admit to it in case they don't look like the all knowing gods some think they are(making them actually look stupid). Far too few actually allow the patient to play an active role in their health (other than maybe loose weight or take up exercise). Certainly they pay lip service to it but when you arrive to a Dr with well researched information and they refuse to even look at it you know its time to be looking elsewhere.

Good luck in the change over.

Mulberry100
Mulberry100 in reply to raffs

Thank you very much. I am so grateful that this site exists, I would be in a sorry state without it. I definitely consider myself very lucky to have my amazing doctor.

I remember reading on here a response from someone (possibly Raffs or Manerva) to somebody asking her what Restless Legs felt like and the reply was exactly what I experience but would never have been able to articulate. If anyone knows where I could find that post I would love to read it again.

Again, thank you for your help.

Pippins2
Pippins2 in reply to Mulberry100

Hi it was me. I am a complete imbecile when it comes to anything techno but if you click on my pic it will take you to my profile then click on my posts and you will see it. It is way down about 33 posts down as was a couple of years ago but the title is "What does RLS feel "like. Or maybe someone clever could make it actually appear here? 😆 Or someone who is a genius could maybe repost it as many new members since then who may find it helpful to explain RLS x

Mulberry100
Mulberry100 in reply to Pippins2

Hi Pippin, thanks for the reply. I have read it again and I feel quite emotional as it very much describes what happens to me. I remember reading it before and was so moved by it that I posted for the first time also forwarded to a friend who felt the same. I have weaned myself down to 1mg patch with 300mg Gabapentin, but the patch worked for me for such a long time I’m wondering whether to go totally cold turkey and go back on them. I know I’m not taking a high enough dose of Gabapentin to help but They give me an awful dry mouth which is so bad, that on the occasions that I have slept, it wakes me with a feeling of choking! Can I ask how long you left it before you returned to using the patches?

As much as I’d like to, I too am a techno imbecile, so can’t help with reposting your “what does RLS feel like” post. I really hope there is someone that can.

Thanks again.x

Kaarina
KaarinaAdministrator in reply to Mulberry100

Is this the link: healthunlocked.com/rlsuk/po...

Pippins2
Pippins2 in reply to Kaarina

It is thankyou Kaarina x

Hi Mulberry. I'm not as knowledgable as many of the Ladies and Gentlemen on here but I have not long finished with 2mg Neupro after 15 years and suffered horrific withdrawal even with 1200 mg Gabapentin at night. After posting on here it seems I made the changeover too soon, however I have been sleeping well for a few hours with this dose for the last couple of weeks and getting back to sleep with 2 Co-codamol. I was told that most people need an opiate with the Gabapentin until withdrawal is complete and some continue to take a mixed dose of some sort. I tried taking Co-codamol with the Gabapentin before bedtime and that didn't work for me as I still awoke after a couple of hours. I've read of some people taking a small dose of Gabapentin at teatime and the rest at bedtime. Like everyone else I'm hoping to find a solution that will work for a number of years. I was one of the lucky ones as I was stable on the patches for around 15 years after first experiencing augmentation on just about every other dopamine agonist.

Good luck and please do post how you are getting along because I know it helps me to know what is and isn't working for others. X

Mulberry100
Mulberry100 in reply to omtenaj

Thanks for reply. I am pretty much identical to you in as much as I have been on Neupro patches for a very long time to a maximum of 3 mg. Because I was terrified of augmentation I started to reduce to 2mg and suffered for a few months (sometimes I would add a 1 mg patch when things got really bad) with horrendous legs. I then spent a couple of years on 2 mg until I was convinced I was suffering augmentation. Again I thought this is as bad as not taking anything at all so decided to start reducing and tried to use 1mg. It was when I felt I couldn’t cope any longer I went to my GP and had a bit of a melt down. She was very kind and understanding and between us decided that I needed to come off the Neupro altogether. I am currently still using 1 mg patch and taking 100 at 7 o’clock and 200 mg Gabapentin 2 hours before bed. Sometimes it’s working but still have a few horrendousnights, but I am going to persevere and up the Gabapentin until, hopefully, I can come off the patch. If it’s really bad I take co-codemol although it doesn’t always work. The one thing I am going to challenge my GP on is my iron levels as I did have a blood test and she said it was 100 and, apparently, that isn’t high enough for RLS sufferers. I too am hoping this will eventually help for a good few years.

Good luck with your journey, surely there must be a cure out there somewhere. X

omtenaj
omtenaj in reply to Mulberry100

Hi there Mulberry You seem to be withdrawing better than myself by taking things slower. I knew things were getting worse whilst on 2mg and asked to be taken off them. The neurologist I saw prescribed gabapentin but didn't give me any advice about withdrawal from the patches. I was told that there wasn't usually withdrawn symptoms with restless leg. Well as we know he was wrong. I definitely came off them too quickly over around 4 weeks cutting down a quarter patch a week. Its been another 4 weeks now and the amount of sleep I get varies from night to night. I have been taking all 1200 mg at once an hour before bed and I always wake up after around 2 hours. I take the 2 co-codamol and do some yoga or pilates (on my reformer) which combined have been relieving the symptoms to allow me to get back to sleep. If Im lucky I can then sleep through but sometimes I have to get up an do some more exercises. Last night was dreadful and I resorted to stretching my legs back in bed till I got back to sleep. So it appears that like you the co-codamol doesn't always work. I am to see my GP next week and will see if they can be changed to oxycontin or some other opioid. I read somewhere that paracetamol has no effect on restless legs only the codeine. I also asked to have my iron level tested in particular my ferritin level, which is said to be the most important and should be at least 100 or more for restless leg sufferers. When I asked for the result he said it was normal but wouldn't tell me what it was, so my appointment next week is with a different doctor. I hope you continue to improve with an increased dose of gabapentin. I'm going to try splitting my gabapentin dose like you to see if there is any improvement.

Janet x

Mulberry100
Mulberry100 in reply to omtenaj

Hi Janet,

Always good to hear how others cope, I too do stretching exercises, but if I’m having a bad night (at least 3 a week) nothing but pacing around the house will help. Likewise, I had my iron tested and was told it was normal but have since realised normal for non RLS sufferers is very different to sufferers, so on my next GP appointment I will be asking for my actual levels. I am trying to take things very slowly and must admit that I am terrified of coming off the patch altogether but hoping I can take a break and go back to them, just not sure how long a break I have to take.

Good luck with splitting your dose of Gabapentin, I am hoping that as I increase the dose I will reduce the times I’m up all night, can but hope!!

Wendy x

omtenaj
omtenaj in reply to Mulberry100

Hi there Wendy The horror of this illness made me miss my Drs appointment on Thursday as I was up all night and fell asleep around 6.30 not waking till 10.30 and being late GP wouldn't see me. Spoke to a locum today who talked to me about addiction to opiates and the detriment of gabapentin type drugs to the body. He was also very good at telling me the problems with treating RLS. I sighed and politely told him just how awful it was to be up all night with RLS symptoms, how this ruined our lives and eventually caused depression, that was also difficult to treat because most antidepressants made our RLS worse. I then went on to talk about dopamine agonists and augmentation and at age 67 how I would rather take my chance with opiates as and when needed as all that was left without them was illegal cannabis to bake in buns, as full spectrum CBD oil wasn't licensed in the UK. To my surprise he told me people travel to holland forCBD oil and if I understood him correctly he seemed to be saying illegal cannabis was less harmful to my body than long term opiate use. On my persistence that I would rather stay legal if possible and my objections to the paracetamol in co- codamol, it being ineffective for RLS. I have managed to procure codeine Phosphate tablets 30mg. I have no idea how strong they are in relation to the codeine in co-codamol 30/500 so only time will tell. I only intend to take one if I awake, which I have done every night since coming off the patches, so it shouldn't take long. It says take 1, 4 x a day which definitely can't be correct for RLS and if the 30 in the co-codamol refers to the codeine element as 30mg 1 will need at least 2. I do hope your withdrawal symptoms are settling down. I personally don't get any side effects fro 1200mg of gabapentin, maybe you will get some relief with a higher dose. Oh how we suffer but the reality does seem to be opiates. I definitely do not want to go back on the patches. They worked for a long time but the last couple of years they were more of a problem. You're not the only one pacing at night. I find the laying on my back on a rug, scissoring my legs up and down can enable me to watch TV Sony entertainment 48 Freeview is about the best option available all night. i think I must have seen every episode of the Waltons going. MASH is my favourite as they can still amuse me if not totally past it. Splitting the Gabapentin dose didn't work for me Wendy. If I take it all at once I can usually get 2hrs sleep before it all starts.

Janet X

Pippins2
Pippins2 in reply to omtenaj

Yes the 30 mg in Co-Codamol refers to the amount of Codeine and the 500 mg is the Paracetamol x

omtenaj
omtenaj in reply to Pippins2

Thank you Pippin As I thought, so I will take 2 tonight if I wake up after a couple of hours which is increasingly becoming the norm for me on 1200mg Gabapentin but being positive in the event that I may not. I was up twice last night for 2-3 hours after taking 1 the first time and vigorous exercise in desperation the second time. x

Pippins2
Pippins2 in reply to omtenaj

Good luck x

Mulberry100
Mulberry100 in reply to omtenaj

Sorry to hear your experience with the locum, it must have been very frustrating. As I said before, I have a very understanding GP, who seems happy to listen and work with me, so consider myself very lucky.

I think the thing I find most frustrating is that RLS mainly occurs at night, when the rest of the world is sleeping, and it doesn’t matter how sympathetic people are they cannot really understand the torture we suffer. My husband has seen me at my worst, but admits he doesn’t know what to say or do and if he tries to help usually gets his head ripped off!!! I can understand people not realising how horrendous it is because even when I try to explain it sounds pretty mild compared to what a lot of people have to suffer. I can actually walk around the house from 7 at night until 7 the following morning, not just walking but anxious with a rapid heartbeat and silently (not always silently) pleading for it to stop. I can’t concentrate on doing anything apart from ironing and cleaning, goodness knows why they help, but they do. However, the minute I stop it starts again.

That said, I do think that the Gabapentin is helping, it doesn’t seem quite so intense and I am now up to 400mg, so have a lot of hope that by the time I get to 900, things will be much better. I am still using the 1mg patch but will start cutting it in half when I get to 600mg.

I very much hope the codeine is working for you.

Apologies, for ranting!

Wendy x

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