Desperate.

[Whymelord]

Hi,I've stopped Pramipexole in the last few months which I'm happy about but and this is a BIG but,I've been taking Pregabalin without any ease at all,I'm at my wit's end,what do I do now and what do I take.my RLS is never ending, every night and sometimes during the day,really not sure if I can continue like this.The Pregabalin is affecting my eyes in the morning ,couldn't possibly drive.Going to ring my GP tomorrow, "one more time"cant see how they will help or even if they want to as they know zilch.I take Gentle Iron as advised, I take Magnesium go walking when I have the energy as I have not slept in days,this cannot be all the help there is,I wish you all EASE and SLEEP.

[SueJohnson]

It's time for a stronger opioid. Buprenorphine is the one usually suggested. You might want to print out the section on opioids on the Mayo Clinic Updated Algorithm to show your GP if needed. Since the pregabalin is bothering your eyes wean off it very slowly like 25 mg every 2 weeks to avoid withdrawal effects.

[Whymelord in reply to SueJohnson]

Hi SueJohnson,thankyou for replying, I'm in the North of Ireland so I'm unsure if Buprenorphine is even prescribed here,I'm finding that when I happen to get to speak to a gp it's a different one each time and feel that they just look me up on the screen in front of them and try to push a med.that I've already tried without success, going round in circles😡,with a bit of luck I may get to speak to one of the senior gps.whom I'm familiar with and who will understand.

[SueJohnson in reply to Whymelord]

See irishnews.com/lifestyle/hea... It mentions tramadol which many take for RLS. Buprenorphine and Methadone are prescribed but apparently for opioid use disorder. Either would be good if you could get them. I don't know if they would be willing to look at the Mayo Clinic Updated Algorithm but you can sure try. Good luck.

[Joolsg in reply to Whymelord]

Jelbea is in Northern Ireland and has been prescribed Buprenorphine. I know different areas have different rules, but Pregabalin isn't covering your severe RLS, which is now Refractory.Arrange an appointment with your GP and show them this site. The GP will see that in many cases, after augmentation on dopaminergic drugs, Pregabalin and gabapentin don't help at all. Low dose opioids like Buprenorphine and methadone do NOT cause addiction or tolerance and save lives.

What are we expected to do? Never sleep again.

Take someone with you to help argue your case.

Ropinirole and Pramipexole cause permanent damage to many of us and only low dose opioids will work.

[Moonwalker1967]

I have stopped driving a long time ago. Due to being over tired. Not safe to drive. Now on Pregabalin I don't feel safe, too. Had a bad fall since I have started on those tablets.

[Whymelord in reply to Moonwalker1967]

Hi,Moonwalker1967,sorry to hear about your bad fall I hope your alright. I'm sure Pregabalin works for some sufferers but not for me,I'm a 78 year old ,reasonably fit lady ,I live in the North of Ireland, its 7.24pm here and I will be going to bed in a few hours knowing full well that I will be up again walking the floors because that's been my life for far too long ,while the advice we get on this Forum is really helpful, my RLS is going from bad to worse, hopefully I WILL get to speak to a gp tomorrow, thankyou for replying.

[Moonwalker1967]

Hi Whymelord, so sorry about your scenario! I live in the UK (near Sheffield). The fall was quite bad and to make things worse, I broke my new expensive varifocalglasses. Sob, sob....! Smashed my knee and bit onto my lips. I have got used to the tablets! On Pregabalin 175 mg.

I still don't get brilliant sleep and struggle working full time!!! I am just about surviving on the usual little sleep. Super tired all day.

No, Idea how I am going to cope, your age! It's steadily gotten worse over the years.

Good luck with your GP tomorrow. Hope he/she will be able to help.

Will add you to my prayer list.

Hopefully you will get some relief!

Thanks 🙏

[Pippins2 in reply to Moonwalker1967]

Hi ,I am in Sheffield

[Moonwalker1967 in reply to Pippins2]

Cool, did you go to neurology department in Sheffield teaching hospital?

[Pippins2 in reply to Moonwalker1967]

Yes I did but many years ago .The Neurologist was useless unfortunately

[Moonwalker1967 in reply to Pippins2]

Yes, I agree. No examination and walked out with a prescription of Pregabalin. Pretty poor.

[Hoochybaby in reply to Moonwalker1967]

hi Moonwalker

I have been under Sheffield Hallamshire hospital for 4years now although I live in Wakefield i did research and found that Sheffield had a good neurological department. I have been taking Pregabalin 250 mg for some years now as well as codeine 60 mg nightly I wouldn’t say that I’m 100% happy but better than I used to be some years ago. I have problems with sleep and constipation but years ago I was suicidal with rls and at least now I am still alive!

[pennygates]

I feel for you. I tried Pregablin and Gabapentin. It didn't work for me either. I couldn't focus my eyes, was hospitalised for two falls. Thought I'd broken my wrist, but it was deep tissue damage, still having problems with it. My legs became horribly swollen and ten days in hospital. The doctors took me off it finally. It was a disaster for me for many months. They put me back on Pramipexole which of course, worked for a while, until augmentation returned. It is a roller coaster I know. I eventually was given oxycodone for my arthritis, and happened to help my RLS, but I was still on Pramipexole. I didn't have enough opioids to really be effective but you struggle on.

Sue and Jules have been a tremendous help during the last stages I have had, when I joined this forum. Also SalemLake and others, who have suggested iron supplements, taken carefully in the right way, and other suggestions to help RL.

It is trial and error I'm afraid.

I understand how you feel going to the doctors, who cant see the hell you are going through.1 Sue and Jules both know that Bupenophrine is very successful in treating RL. I have been given sound solid help by so many who really know how you feel.

I remember telling my GP, that I couldn't continue to live with myself if this was all I was given for my condition, as it had made me much worse. He began to take me more seriously when he saw how broken I had become. He doesn't still have a clue about RLS, but at least recognised how serious it was for me.

It is still an ongoing journey, but have recently have had some success with iron supplements taken every day at night. .

Let the doctor see how it affects your daily life, rather than explanations of symptoms only. That doesn't probably give him a full picture. Lay it on thick, until someone listens. They are there to help you and are paid for it.

Best of luck, don't give up.

[Truthsword]

With me glutamine is a factor . Any nightshade vegetables, MSG, soy sauce. It stimulates the nerves...not what we need. It's even in my protein powder! Also, low blood sugar triggers me. I have a snack. And...distraction helps...but it has to be something participatory, knitting, sketching,etc...TV won't help.Pain is also a trigger for me.. that, I have no controll over.

Hope this helps.

[RLSofManyYears]

You are experiencing the same as many of us ☹️. The advice is to start taking Buprenorphine and I would 100% agree. I too take Pregabalin and have just come off the dreadful Pramipexole. Prior to the Pramipexole I was taking Temgesic and using a Pramipexole table about twice a week and taking Zopiclone other nights as needed. However my GP stopped the Zopiclone and so I was forced to start taking the Pramipexole every night in order to get some sleep. Now that I'm off the Pramipexole I'm taking Tramadol and Pregabalin. However I've not found the Tramadol to be very effective and so I'm now about to go back to the Temgesic. Three years ago when I first started taking Temgesic I slept right through the night for 9 months - bliss!

I do hope, and pray, that your GP will agree to the Temgesic as mine did here in Scotland.

[Jetto]

Gagapentin and there is a new better Gabepentin that is even better if that does not work

Go for Methadone.

[Amrob]

How much pregabalin were you taking? Some side effects do settle in time as your body becomes accustomed to the drug.

[Whymelord in reply to Amrob]

Hi Amrob,I was taking 75mgs for a while then went to 150mgs along with two 300/500 cocodamol at night,I probably should have tried bigger dose of Pregabalin, I had a good gp which I did see quite a few times who was not a fan of it plus I have been reading some negative reviews, unfortunately the gp in question has since left my surgery, she was helpful and willing to listen.

[Amrob in reply to Whymelord]

The mean effective dose is around 312mg so you still had room to move. I understand the side effects can be difficult to bear. I have been on pregabalin for many years and it really helps (most of the time).