More advice would be wonderful

[Mulberry100]

A while back I posted on here about my journey coming off Neupro patches and transferring to a Gabapentin and had some truly great advice.

I am now taking 900mg, split into 300 at around 5 o’clock and 600 around 8 o’clock. It occasionally helps and I do believe that the restless legs are not quite as intense. However, I still have many nights where I am still up all night going quite insane and literally walking around the house all night. I have tried to come off the patches but, will on a bad night, resort to using a 1mg. I have just experienced my worst night for a long time which was followed by having restless legs all the following day and had some pretty desperate thoughts (I have a wonderful family and husband so would never, ever do anything silly), I felt pretty desperate! I have avoided taking any other pain killers along with the Gabapentin and patch but I do have a few Tramadol and have, on the rare occasion, taken one. My lovely, helpful GP is very reluctant to prescribe Tramadol and as I have a good relationship with her I don’t want to push the point.

Currently, I’m considering moving onto 1200mg Gabapentin as I seem to have overcome all the side effects I have experienced along the way and I know, from comments here, that 1200mg is an acceptable dose. I’m not confident that even moving up to 1200 will bring me the relief I was hoping for and wondered what others take along side Gabapentin?

Apologies for the length of this post, but would welcome any thoughts.

Wishing everyone well and safe in these frightening and challenging times.

[Heatherlss]

Hi Mulberry,

When you say that you've come off but still take 1mg on desperate nights, how often do you do that ?

I completely understand. I've tried twice coming off DAs and failed. Sometimes I feel I won't ever be able to leave them but then relief is also very short lived.

It also depends on how much time it has been since you went off DAs. It could well be that you're still struggling from withdrawals.

[Mulberry100 in reply to Heatherlss]

Thanks Heatherless,

I think you are probably right, it’s been about 6weeks since I started the Gabapentin and I built up to 900mg which is when my doctor suggested I came of the patch, which is only about 2 weeks ago. On the days I don’t use a patch ( which I don’t use until things get really bad) I have always had some pretty awful nights. Sometimes I can be really strong and refuse to go for the patch, but if I have 2 nights in a row with no sleep at all I would take and use anything. I’m probably doing that 3-4 times a week. I have seen it suggested on here that some people use something beginning with”S” alongside Gabapentin but I can’t find what it is?

[Hidden]

Hi, I think increasing the gabapentin is worth trying and definotely do NOT resort to using a Neupro patch.

If you only stopped a couple of weeks ago, you may still have withdrawals. If you use one again, irregularly, you are just prolonging withdrawals.

I'm sorry, I can't think of anything beginning with S.

[Mulberry100 in reply to Hidden]

Thank you Minerva, for your reply. I really have messed up by using the patch as a backup, but have just felt so very desperate. As I have had very few side effects to Gabapentin, and the ones I have had haven’t lasted long, would it be ok to go straight from 900mg to 1200? Do you have any suggestion of what I could take alongside the Gabapentin?

Thank you very much.

[Hidden in reply to Mulberry100]

Yes it should be OK to go straight up to 1200mg.

I suggest you just try increasing the gabapentin first and stopping the Neupro.

If that's not enough, then you could try taking some co-codamol again, for a while. I wouldn't make the co-codamol a habit though. Codeine isn't the best thing for RLS and paracetamol is useless.

If the gabpentin doesn't work, you could also try switching to pregabalin, but give it few weeks first.

[WideBody in reply to Mulberry100]

When I came off the DA drugs, it took months. Sleep was by far the hardest part to get past. I found that naproxen sodium would help me sometimes when things get rough, even ibuprofen can help when things are bad. Definitely, using the patch just drags it out.

When I first started Gapapentin, I quickly moved up to 1800mg a day, I needed it. I know do only 900mg a day.

It is my necessary duty to ask, have you tested your iron levels? Supplementing with liquid Ferrous Sulfate, with vitamin C is my personal drug of choice. (my apologies if I already asked)

[Mulberry100 in reply to WideBody]

Thank you for your reply. There are, clearly, an awful lot of us that have experienced the horror of withdrawal and thanks to some I have learnt a lot. I guess everyone has there own way of managing but I now know it’s possible! I had my iron tested and asked my GP who said it was over 100, maybe I need to ask what it is exactly. Thanks again for the tip.

[WideBody in reply to Mulberry100]

I would ask, my ferritin was normal all the way till I got an infusion which saved me. A full iron panel is necessary and it should be done fasted and in the morning. There are four parameters, Ferritin, Serum Iron, TIBC and Transferrin Saturation Percentage. My Ferritin was normal, but I had no iron stores, my TSAT (Transferrin Saturation Percentage), was below 20% which is anemic.

Good luck, learn as much as you can. It will help.

[Hidden in reply to WideBody]

Just to point out that a low iron store doesn't necessarily mean anaemia. Iron stores can be low even if there is no anaemia. Thats why it's important to have the tests for iron storage, because somebody may have no symptoms or signs of anaemia, or in fact, no anaemia.

The normal tests for anaemia may not detect low iron storage.

Iron deficiency anaemia is a lack of haemoglobin.

[WideBody in reply to Hidden]

You are absolutely correct Manerva. And you explain things much better than I do. This is exactly what happened to me. My ferritin was normal, hence I was not officially anemic.

The official name is "Iron Deficiency Without Anemia".

My favorite paper on the subject is "Iron Deficiency Without Anemia–Common, Important, Neglected"

E Soppi - pdfs.semanticscholar.org

The benefits of hindsight are amazing. BTW, good luck getting an insurance company to pay for an infusion, since infusions only treat anemia. I can say, the infusion saved my sanity and life.

I have the PDF if anyone is interested. It was available online, but I can't find it anymore.

[Hidden in reply to WideBody]

There are quite a few sources of information about iron deficiency without anaemia. It apprars even with "normal" ferritin levels, there can be iron deficiency.

Here's one source

ncbi.nlm.nih.gov/pubmed/286...

[Dogdoo in reply to Hidden]

Sifrol?

[Mulberry100 in reply to Dogdoo]

Thank you, that’s the one!

[Hidden in reply to Mulberry100]

Sifrol is pramipexole, a dopamine agonist. It isn't often given alongside gabapentin, that's why I couldn't think of it. It's usually one or the other. If you've suffered loss of efficacy or even augmentation because of neupro, pramipexole is far worse for this.

I suggest you avoid ALL dopamine agonists.

[rls-insomniac]

Hi, I'm currently taking 1200 mgs of gabapentin, split between 300mgs mid afternoon and 900mgs around 8.00pm. In addition I'm also taking 2 x 30/500 co-codamol and 2mgs of ropinirole. I'm going to start reducing the ropinirole by 0.25mgs every 2/3 weeks starting nect week as I suffered terrible augmentation on it. I just want rid of the ropinirole if I can get off it. Although I haven't been taking the gabapentin very long, I am seeing some benefits from it. I'm now getting around 5 hours sleep a night before I start getting break through, usually around 5.00am. I was previously getting around 3 maybe 4 hours (if I was lucky) of broken sleep a night.

[Mulberry100 in reply to rls-insomniac]

Thank you for your reply, I am thinking that 1200mg Gabapentin is the way forward. I find that co-codomol does nothing for me which is why I have used the Tramadol I have left. I would love to have 5 hours sleep or even 3-4 hours but am very pleased for you that you are getting good results on the 1200mgs and wish you well with your withdrawal from ropinirole.

[rls-insomniac in reply to Mulberry100]

Thank you.

Do give the increased gabapentin a go. It may just help. I found that once I increased to 1200mgs things did get a bit better, but I've only been at this dose for 2 weeks. It does take 3/4 weeks for it to kick in. I'm not sure if the co-codamol is of use or whether it's the gabapentin that is helping but I'll continue to take it whilst my GP is prepared to prescribe it! I was a walking bag of nerves before with little or no sleep whilst I was tapering down from the ropinirole. (I was taking up to 9 mgs a day). The 3 to 4 hours of broken sleep which eventually came (a half hour here, a half hour there!) was bliss at the time. Then up to 5 hours now is positively euphoric!!

I do hope things get better for you and I wish you luck.

[Joolsg]

I feel for you. Trying to get off dopamine agonists is hellish. Sadly- if you keep going back on the patch you are just prolonging the agony. There is no easy way. Withdrawal means at least 2 weeks of hell with no sleep and 24/7 severe RLS.

If you can manage it, you find that the Gabapentin will start to work and the daytime RLS disappears and the nighttime RLS is not as often and less severe.

Withdrawal from DAs has been likened to withdrawal from crystal meth. I’ve never been on crystal meth but I’m sure it’s correct.

During this lockdown- now is the best time to grasp the nettle and get through withdrawal. Tramadol will ease the symptoms slightly- cannabis is better if you can get hold of some.

[Mulberry100 in reply to Joolsg]

Thank you Jools,

it makes such a difference when one gets a response from folk on this site, just knowing that people have, or are going through, what you are going through, though I wouldn’t wish it on my worst enemy! I knew I shouldn’t be using the patch but have been so very desperate at times. I can cope with absolutely no sleep once or twice a week, but 3 or 4 nights was just too much. Also, it’s not just a case of not sleeping, I find I can’t sit down at all and just have to keep walking all night, guess others have to go through this too.

I am determined to beat this and will get rid of the patches to be sure there is no temptation and move onto 1200mgs Gabapentin, as you say, lockdown is a good time to get on with it. Will try and get hold of some cannabis.

Thanks again.

[Joolsg in reply to Mulberry100]

Yep- I spent 3/4 days with zero sleep and the severe leg twitches were every 10 seconds. I would have ended it all if I my husband had not stayed with me constantly and massaged my legs to distract me. Cannabis ( illegally obtained from my adult children) gave me 30 mins sleep after 4 days. Then the awful, constant RLS began to subside and after 14 days I could manage 3/4 hours sleep which was a life saver.

It then took me 3/4 months to find the right combination of meds.

I really hope you can manage to get off the DAs as life is much better without them.

I wish you strength.

[MATTIELUKE]

I took gabapentin 600 mg which did not help. My doctor changed the dose to 600 mg @ 7 am, 600 mg @ 3pm, 300mg @ 5pm and 600 mg @10 pm. Has worked like a charm for the last 3 months. I tried Tramadol in the past but it kept me awake and eventually was not effective. I took 50 mg and my doctor did not want me to increase the dose.

[Mulberry100 in reply to MATTIELUKE]

Thanks for your reply, everyone has been so helpful and I’m so impressed with the help and kindness I’ve had from this site. That’s a lot of Gabapentin you are taking, I’m not sure I would be able to function if I took that much, but I have wondered about spacing out the 1200 over a 24 hour period because I am getting restless legs over 24 hours! Then again I am clearly augmenting and trying to get off the Neupro patches so guess as Jools and others have said withdrawal is hell and I will just have to get on with it!

[Hidden in reply to MATTIELUKE]

There shouldn't be a need to take gabapentin so many times during the day.

It is normally prescribed a maximum of 3 times a day. However that is if it's prescribed for seizures or nerve pain. For RLS, it's usually only necessary to take it once a day, or at most twice.

Better to take 2/3 of the daily dose 2 - 3 hours before bed and 1/3 2 - 3 hours before that. You will find that gives more effective relief when you most need it. ie. at night. You may find that you could even then reduce the dose a little.

This means you get less side effects during the day.

Additionally if you're taking more than 1200mg gabapentin a day, it might be better to switch to pregabalin. Pregabalin is more potent than gabapentin and more consistently absorbed, you need less and only once a day.

The problem with gabapentin is that increasing the dose you take above 1200mg doesn't greatly increase the amount you absorb.

[Tamaroy]

I have been off Gabapentin for approx a month, it did initially but then I noticed that I had weight gain and oedema, weaned myself off, with Docs advice,

I am now trialling a different drug as well as taking opioids. We all wish there was a drug that once and for all would stop us from having to do what we do, maybe one day.

[RLSdaily]

I did withdraw from dopamine agonists worse 2 weeks ever!!! Toss out the patches , it gets better. It is hell without a doubt.

Gabapentin will help over time. You won't know the true relief until the DA is out of your system. Me, myself would not increase gabapentin until you quit the patches. I have also read, been told, your body can only absorb so much gabapentin at one time so staggering the dose may help.

I am taking 600mg - 200 at 6pm 2 00 at 8pm and 200 at 10pm, I sleep until 6 am. Good luck, stay strong, the horrid thoughts go away. - Christina - U.S. 48 yrs old

[Mulberry100 in reply to RLSdaily]

Thank you Christina, I have thrown away the patches and I am just going to go for it while we are on lockdown. I guess what we are going through, albeit hell, it’s small fry to what’s going on in the world at the moment!

Thanks again, it all helps to know I’m not alone.

[Hazelbutler]

I taking 1200 mg gabapentin three times a day, and have been told by a neurologist that this is fine although it is a very high-dose. It has cured my daytime RL S but I still cannot stop my legs moving at nighttime sometimes . When this happens I find that one codeine tablets ( I actually use codydramol) or one Clonazepam .5 mg cures it immediately. I hope this helps you .

[Durose36]

When I get an attack of rls I use Chris's oil and pain slayer and upto now it's helped. It is all natural herbal products so it doesn't mess with my other meds (pregablin) I just massage them both on my troublesome leg and I can then get a good night's sleep or what's left of it. If you look up M. C. C motorcyclists cosmetic company they also give really good advice on their products on a fb page. Hope this helps