new meds

[nick-the-turk]

Hi all been put on my new med today are you ready ????????????????????? Pregabalin one 50mg tablet twice daily then after 7 days can can go up to 100mg twice daily any thoughts please because i,m not convinced ,,,,,,,,,, nick

[Hidden]

Hi Nick, i am not that experienced with Pregabalin also known as Lyrica. I know some find it helpful and get relief. I hope someone who does take it can give you more info about it. Are you completely off the dopamine med yet.. ?

[nick-the-turk in reply to Hidden]

yes first day today on new med to be honest Elisse i,m really worried that it aint going to give relief and running out of options

[Hidden in reply to nick-the-turk]

Ok, dont panic yet, it will take a while to build up in your body. not like the dopamines which work straight away.

[nightdancer in reply to nick-the-turk]

How long did it take you to come off the dopamine?

[Pippins2]

Hi nick as Elisse has said it does take a while to build up sometimes around a month or so. I take it for pain 150 mg at night, for me it doesn't help with my RLS but some people get amazing results from Pregablin so I hope that you are one of them. Unfortunately like most things in RLS world it is try it and see. Howlong have you been off the Dopamine med now? Are you taking anything else alongside the Pregablin? X

[Madlegs1 in reply to Pippins2]

As far as I understand it, Pregabalin and Gabapentin work better in conjunction with other meds rather than just on their own , for rls.

Worth checking out Dr B's site- I'm sure he has addressed this topic many times.

All the best.

Don't forget to avoid all the triggers.

[nick-the-turk in reply to Madlegs1]

will check it out thank you i have tramadol and codiene phosphate for back pain in reserve if needed feel better already just talking to you good folk

[Hidden in reply to nick-the-turk]

Nick take the Tramadol if you need it, it will help more than the codeine as its stronger and help while you are waiting for the pregabalin to build up in your system.

[nick-the-turk in reply to Hidden]

yes thinking of doing just that now have to be in work at 4 in morning so i take rest what little i get at strange times

[nightdancer in reply to nick-the-turk]

awwww, Nick, hope your day was not toooooooooo bad, and you should have Sunday off, right?

[Grammieof4 in reply to Madlegs1]

I take 600 mg gabapentin at 7 pm and 300 mg more at 10:15 pm. It's working well for me thank goodness.

[nick-the-turk in reply to Pippins2]

HI PIPPIN2 first day today need sleep and relief now last few months have been hard i,m knackered trying to hold down full time job like i said to Elisse not holding out much hope but like as all we deserve a break now and again its good people like yourself and Elisse with your advice that keep me going and there is light somewhere at the end of the tunnel

[Pippins2 in reply to nick-the-turk]

Nick if this is your first night off dopamine all together I wouldn't hold the painkillers in reserve I would throw everything at it..Tramadol is the strongest so personally I would take that alongside the Pregablin easier to catch it before it gets full control rather than try to stem it once it takes hold. You have done amazingly well to get to where you are and hold down a job.

,I take a break from my dopamine med every few months to try to stave off augmentation and I am currently on night2 off so I am walking the walk with you.

Very often a combination of meds works best so fingers crossed the Tramadol /Codeine and Pregablin together will help Good luck let us know how you go on

Pippins2 x

[nick-the-turk in reply to Pippins2]

needing to take one or two now for sure walking the walk already out in garden now with lap top will let you good folk know what night i,ve had when get in from my post round tomorrow lunch time please all hope you have some relief tonight

[Hidden]

Nick you were taking codeine, are you still taking it. It would be helpful if you are.

[nick-the-turk in reply to Hidden]

have arthritis and disc bulges in back so only take when needed have tramadol as well but they upset on stomach

[Hidden in reply to nick-the-turk]

Oh thats not good about the Tramadol. I am sure there must be something you can take for the upset stomach. Are you meaning they make you use the loo more than usual. Or something different they do to your stomach.

[nick-the-turk in reply to Hidden]

just make me feel sick and heart burn strange i know

[Hidden in reply to nick-the-turk]

No not strange at all. They did the same to me, when i took two of them, made me violently sick. I got some anti-nausea pills from the doctor which worked a dream, they are called domperidone. Also taking a antacid would help with the heartburn. BUT, run this pass your doctor and see if they agree.

[nick-the-turk in reply to Hidden]

will do she,s ringing me monday to see what weekend ive had if im still around monday and not fallen off the walls i,m climbing

[Hidden in reply to nick-the-turk]

Hold on Nick. Try the Tramdol and put up with feeling sick, better than climbing walls.

[nightdancer in reply to nick-the-turk]

Some people get very nauseous, depends on the person and the med, but at this point if Tramadol is helping your legs I echo Elisse's comment. Also, baking soda and water is great fro heartburn, it is my go to home remedy, plus ginger crystals for nausea when I do have nausea, which is not often these days, thank goodness.

[nightdancer in reply to nick-the-turk]

Can you take the Tramadol with a little food? like some crackers, and ginger ale? Ginger ale is a good thing for nausea, too. xx

[nightdancer]

Well, all you can do is try it. I am starting to forget what you have tried and not tried. Lyrica is approved in the US for treatment of nerve pain, as in Fibromyalgia. It is used "off label" for RLS. I know SOME people who like it and it helps them. MY personal experience was that it made me very edgy and did not do anything for my nerve pain, my Fibro and my RLS. But, we always say 'trial and error' and we are always afraid the next new thing will not work. Can you please remind us what else you are taking for ANYTHING, for RLS or any other condition? if you were or still on codeine, the Lyrica will mix well with it, but cannot promise on the RLS for sure, because we can never promise anything. But, the BEST idea is not to panic. I have been through what you are going through now. I have to say, and NOT to panic you at all, that Lyrica/pregabalin would never be the first, second or third choice for RLS treatment, it just is not designed to work for that. But, we never know until we try. I completely understand why you are stressed about it. But, really would like a med list of what you are taking and what you have tried already. You can PM me or Elisse if you would like. I just do not want you to panic, please. We do care and will walk this journey with you, but I need a little more info on your med history, and also anything you might be taking now, prescription or non prescription.

[nick-the-turk]

many thanks for taking the time to reply ive taken all RLS MEDS including patches just been weened off pramiopexole first day today clean [ that sounds bad ] got tramadol and code-phosphate for back pain no other meds and illness apart from severe lack of sleep

[mantel]

Nick have you tried staggering the Tramadol. I take 100mg all at once but when I 1st started taking them for back pain some years ago they made me sick and very light headed . Found if I took two 50mg tabs an hour apart this stopped this. Now used to them so they don't cause problems . Taking them on an empty stomach was not good either. I started Lyrica just over a week ago . I am taking 100mg at night with Tramadol. I was taking Ropinerol . 1/2 mg and came off as it was not helping after 15 years of working. Did not want to up the dose after hearing of all the problems people on here have had doing that. As I was on a low dose I just stopped taking it and went straight on to the Lyrica . Not a good idea , had 48 hour with 2 hours sleep . Added Tramadol and have slept as well as I ever do . Never been a great sleeper since having my children 26 years ago. I. Am too scared to drop the Tramadol yet to see if the Lyrica works on its own.

[involuntarydancer]

Well done for getting off the dopamine agonist. And doubly so while in full time employment. Respect for that.

Lyrica does work for some people but I would say more often it is not hugely effective. It can have slightly unpleasant side effects. It's definitely worth trying though. BUT even if you are one of those who responds well to Lyrica, it is unlikely to be effective in the early days after coming off a dopamine agonist as you will typically have stronger than usual symptoms then. I would have thought that you will definitely need the tramadol for that early stage. Alternatively, you could try asking your doctor for Oxycontin which is also effective for the early stages. I would say that it is generally more effective than Lyrica for rls - though not always.

For nausea you should certainly try splitting the dose. You could also try ginger - chew chrystalised ginger and/or try steeping fresh ginger in hot water. It is well known and for its anti-nausea and very effective. I am too tired to check now but I have half an idea some of the prescription anti-nausea drugs can exacerbate rls.

[nightdancer in reply to involuntarydancer]

yes, Compazine and Phenergan are the prescription anti nausea drugs that will send us into the stratosohere. Zofran is one that is very safe for us. I had it when I was having chemo, for both times. Zofran used to only be used for chemo, now they have realized that the general populations needs to be able to use this on now. I have had it for every surgery I have had, and have never had a problem with it. It is prescription of course, but there are no adverse effects for 99.9% of RLSer's, so Elisse is right,

[Hidden]

Yes most anti-nausea meds can make RLS worse, but the one i mentioned to Nick is considered RLS friendly.

[nick-the-turk]

Elise it's 2.34 in morning feel like I've been cut in two top half of me feels sleepy due to taking new med and tramadol the bottom half feels it's running a marathon not a wink of sleep so far legs have won have work at 5 so up at 4 LOL must of covered every inch of lounge floor I've smacked my head on chairs etc feel like sh@@ could actually if this is life now forget it lack of sleep is one thing crazy bloody legs with it NO could easily break my legs but it's not there fault so desperate it's unreal had bad nights but this is of the scale worried I could myself or someone else I'm spent out

[Pippins2 in reply to nick-the-turk]

Nick so sorry but sadly I expected it as getting off that last pill is the hardest part for almost everyone I know including myself. You will be at work now Nick I would try the out of hours GP or even AandE anywhere to try to get something stronger, they may prescribe you Targinact as it is licensed for RLS. When this happened to me my hubby rang doctors and instead of just saying lack of sleep he told them I was dizzy, feeling faint, hallucinating (I was all 3 by that stage ) and I was admitted and"knocked out " I hope being weekend you aren't working next couple of days. Get some more help Nick make sure they know your state of mind. Please don't hurt yourself Nick, keep talking to us or Samaritans free phone number 116 123, Hold on Nick

Pippins2 x

[nick-the-turk in reply to Pippins2]

thank you and i have experienced all the above the last few days but feel they keep making the wall higher for me to get over and the light at the end of the tunnel has gone out ive told doctor how i feel about hurting myself but they just don,t understand how horrific this curse is they might understand more if i end up in A&E

[Hidden in reply to nick-the-turk]

Hi Nick, i am sorry i wasnt around when you needed me. But you got the best people who were here for you. I am agreeing with them, they are right, that last bit of the dopamine med you took was the worse ever for giving you raging RLS. PLEASE, take some time of work, you cant do this and work. You need to be able when sleep, nap, when the RLS lets you. whether that be day or night. Jools and Pippins have both been through this so completely understand how you are feeling. You HAVE to believe this will get better, it WILL get better, your body will calm down. I want to hear from you today, i want to know you are ok. I cant stress enough that you need to be at home and not work while going through this. x

[Joolsg]

Nick, that will be your body screaming in protest at being denied that last dopamine pill. Like others mention above, Lyrica won't kick in for a while and take the tramadol to help get through this final stage of withdrawal, with some ginger or the antacids Elisse has recommended. If you can take a few days off work that would help at this stage until you're through withdrawal ( can take 10/14 days after last dopamine pill). Really rooting for you and hope it gets a little easier for you as Lyrica and tramadol kick in.

Take care,

Jools

[nightdancer]

Hey, Nick. While you are at work, I also agree with Pippin and jools2. Your body, as they have said is really screaming out for the last of the dopamine. I am so sorry, but again, we know how bad it can get. IF you made it to work, I am proud of you. But hopefully, maybe, you can take a few days off. You are at the very end and have made it this far. You are stronger than you think right now. Please hang in there. Elisse will be up in a couple of hours, I am sure. In the meantime, we are here for you. You have made it to the worst part now, so in a few days to a week or a little more, things ARE going to get better, Dopamine withdrawal is a wicked thing to deal with, and people who think this does not happen, it DOES. So, please, am sending you positive vibes, and wishes for you to be strong. I am sorry I do not know what you do for work, so really hope you have the weekend off, and can just take time for yourself to get thru this. I wish we could help more, words seem empty right now. Just know you have people here that care about you, and we know you can do it. Not going to spout any cliches to you, just be strong. It IS going to get better. I swear by ginger for nausea, use it a lot. Sending white light and strong thoughts to you. xx

[nick-the-turk in reply to nightdancer]

many thanks for your kind words and thoughts i am a postman so walking nearly all day but drive to collect post in afternoons i know i have these thoughts in my head but hopefully i,m stronger than these thoughts time will tell that never ever thought it would be this hard not just to get of med but just to survive i will try to keep posting updates but you good people on here are better than any doctor i,ve seen and are worth your weight in gold x

[nightdancer in reply to nick-the-turk]

Good to hear from you, Nick!!! We are here for you always,. All I know is, you are a VERY strong person, and you can do this for sure! I am amazed that you can keep working, but good for you. I still think if you have any sick time, it might be a good idea to take a few days off now that you are towards the end of the dopamine withdrawal. You sound much better today. x

[Jeanniebeannie]

Hi .i take pregablin 75mg with a one and a half premipexole every night sometimes one pregablin in the day . but try to avoid it .must say sometimes im fine for long enuf and sometimes not .but are ok for me .

[mantel]

So sorry nick, what a horrible time for you . I agree with the others , you should take a few days off until this settles down.

[involuntarydancer]

Nick, this is the worst time and it does improve. Be very careful about driving and depending on what you work at be cautious. Also when pacing in your living room. It is possible to fall asleep while walking across the room and you can hurt yourself. RLS brings you face to face with your own resilience and ability to cope with the truly awful. As you say the lack of sleep is very hard to bear but it is the combination of the lack of sleep and the horrible symptoms that is the pits. I came off pramipexole without the aid of medication apart from Lyrica which was totally ineffective but if I was to do it again, I would insist on having a prescription for 30mg of Oxycontin per day. We are all rooting for you. You will never forget how awful this time has been but you will know in future just what a strong person you are.

[nick-the-turk in reply to involuntarydancer]

Thank you horrific couple off days to me honest at this moment in time I can't see a future just a massive long tunnel with no light at the end x

[Hidden]

Nick, i wish we had heard from you today, really want to know you are ok.

[nick-the-turk]

Sorry all for not going on site yesterday it's been horrific worse two days of my life not been climbing walls been bouncing off them all sorts of strange things going on my good wife filmed me whilst I eventually got 10 minutes cat nap yesterday evening and when she showed me I thought I was have a fit taking this evidence to doctor ASAP again people sorry if I'm don't reply but I'm knackered and yes I did work Saturday thank you all for caring but the struggle continues and think I'm losing the fight at the time x

[involuntarydancer in reply to nick-the-turk]

You are winning it. It was a very clever idea to film you asleep - evidence for your doctor to see what you are going through. You don't have to check in here. It's just that so many people here know exactly what you are going through and are concerned for you.