I just thought I would post my progress with Pregabalin a week in, given my reservations in taking it.
I’m on 100mg which I take at night. All really positive so far, honestly no more RLS! Side effects minimal, slight dizziness if I get up in the night, and for the first time this morning a slight headache. No weight gain but it’s only been a week!
I know it’s early days and plenty of time for things to backfire but I try to remain positive and keep pinching myself that this is really me and I’m sleeping 6-8 hours a night. I know there is every chance this won’t last but for now it’s bliss 😊.
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Pam34
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It's a lovely feeling, but just be patient. You may manage with 100mg of Pregabalin, but if things start to tumble don't lose heart you've usually just got to find the right dose for you, and that can take time.
Yes, I know I’ll probably have to increase it at some time, it is a very low dose. Thanks for the encouragement though, these things need time and patience don’t they?!!
I’ll keep posting, there are a lot of stories of suffering out there, and I’ve had my share - it’s nice to have a positive story for a change 😊
Hi Pam, that is wonderful news to hear. I found the same with low dose Pregabalin for several years and the bliss at the time was so very good, like a dream.
A note of caution though. I have experience of pregabalin from way back, starting around 10 years ago as I discovered it worked by chance when it wasn't really known about and the trials hadn't been done, when I was prescribed it for another reason.
Augmentation I don't think was known about either - i mean with the DA's.
Although it is not yet recognised as a major problem I'm pretty certain I augmented on Pregabalin in that a dose that worked stopped working and I had to increase it several times. I never got above 150mg at night as had side effects beyond this. I also found that symptoms spread to other areas.
This has never completely gone away either.
I cut down and stopped it gradually which was pretty hard too.
So my advice would be to definitely enjoy it for the moment but if I knew then what I know now I wouldn't increase the dose if the effect of the current one wears off.
I haven't found an alternative either but the thought of a few months or years of peace just now would be lovely.
I once tried Pregabalin again at 75mg when I was becoming desperate as my initial starting dose had been 50mg. It didn't work and the side effects kicked in quickly but it was still hard to withdraw from as the withdrawal made the symptoms worse short term.
Thanks for the words of caution. After ropinirole augmentation I am very wary of increasing doses and also looking out for symptoms spreading elsewhere.
I've just stopped Tramadol and although I think it was just loss of efficiency, rather than augmentation I was aware that the RLS had spread to my arms. It's always hard to say if this is natural progression or caused by the drugs. From my experience there is no drug we can take for a prolonged period of time.
Yes, I hope this continues as long as possible, if it fails, I may try the Tramadol again; after a break of hopefully a couple of years it might work again. But that's for the future and at the moment I'm taking what I've got!
Incidentally by son in law is a vascular consultant and he says many of his patients with vascular disease suffer from secondary RLS that disappears as soon as the problem is treated. He is insistent I try to arrange an ultrasound of my legs which will prove if I have any vascular problems - there are none apparent by looking at me but that's not to say I haven't. Although I have primary RLS who is to say I don't have secondary as well and the effects could be lessened with treatment. My neurologist is reluctant as I have no apparent problems so I'm a bit stuck! Clutching at straws anyway - but it could certainly be something for people with varicose veins and RLS to think about. I posted a PubMed article on it a while back.
I hope you manage to get something sorted - there is so little support and knowledge it can be very frustrating and upsetting. Gook luck...
Pam, your son-in-law is right. I had no visible signs of vascular problems beyond a few spider veins at my the sides of my knees, but I had an ultrasound done of both legs when I heard that the symptoms could be all or partially caused by venous insufficiency. Turns out I had quite severe venous insufficiency. I was able to see it on the screen, so I know it was true. I decided to have oblation done (which wasn’t bad, but has its own set of potential issues) and was able to cut my dose of Mirapex (.5x4/day) in 1/2 within a week or so - I simply forgot to take it, and discovered I only needed 2/day as the symptoms were greatly reduced. With the addition of CBD/THC (legal where I am) I’ve been able to take just 1, .5 Mirapex a day (about 8 out of 10 days), though getting off that last one is problematic. So I encourage you to consider having the ultrasound, and deciding after it if oblation is needed, and even if so, do you want to have it done? I have some ankle swelling if I’m on my feet all day on a hot day, but otherwise have no side effects from the procedure except reduced symptoms of RLS. Good luck!
Hmmm that is really interesting. I’m back at the doctors next week. Maybe I need to push harder for an ultrasound. I’ll take a copy of the report with me. Thanks so much for sharing your experience.
That's very interesting Pam. My RLS is both primary and secondary as well. I have the addition of peripheral neuropathy which started off painful but isn't now which is how I was given pregabalin in the 1st place - and the RLS miracle occurred so even when the neuropathy stopped hurting or maybe I stopped noticing as it was 'old pain' I begged to be allowed to continue pregabalin for quite a while. I did put on a lot of weight though but couldn't work out why. It came off without effort when I stopped it though.
I think I've read that tramadol can cause augmentation too.
This condition is foul as we all know. But a spell or longer of respite for you will be great. I think I got about 5 years from it though the dose increases occurred during this time.
It allowed me to continue to work till retirement age for which I am grateful. I doubt I could now as too much brain fog.
I know. Can’t quite believe it but I’ll take it! Hope you had another good night, I keep thinking of you. So glad I’m through all that. I’m there if you need support x
Ah bless you thank you Pam, it’s quite a big thing in my life right now
I was doing ok last night but I had my 2 year old nephew and he woke up at 12.30 and kept me up all night which stressed me and then legs started about 3am 😩
Iron was 75? Do they mean your ferritin level - you need to get clarification. If they do mean your ferritin that’s not bad but it could do with being over 100. Anything up to 300 is ideal but you’ll never get it there with just supplements. Iron bisglycinate (gentle iron) is probably the best one. One tablet every other night on an empty stomach. Orange helps it’s absorption. Get agreement from your doctor though.
Diabetes can’t help things but I guess the best diet to cope with that is also the sort of things you should be eating/avoiding for RLS.
Good luck with the doctor and here’s to good night sleeps alround 💤💤💤
hi pregabalin also worked for me and has been for 18 months maybe not 100% but i,m happy with that.I,m interested in the comment about weight gain is there a link with pregabalin and weight gain
It’s nice to know its working for you and has been for so long. Long may it last!
And I hope it doesn’t go the same way as ropinirole for either of us - I couldn’t bear that again!
Yes, weight gain is a notorious side effect for some, the drug can increase your appetite and also can cause water retention. As long as you are aware and eat healthily it should stabilise. To be honest, I really hope I don’t put weight on but I’d rather have a campaign to lose weight than a struggle to sleep....
So pleased for you Pam. Hopefully you will get a good run with it and maybe if it does start to loose effectiveness over time you could go back onto Tramadol which could work again after a break from it..Imagine 2 years on Pregablin then 2 years on Tramadol each working well!
Wish Pregablin worked for me, I do take it though as I find it very good for nerve pain. Good luck x
Hi Pam I don't get on here so much in the summer months as spend time at our caravan with limited phone mobile data. I am doing ok RLS still get the odd bad night of course and taking a cocktail of meds but generally it could be much, much worse. Thankyou for asking and I hope the Pregablin is working well for you x
On train now going to conference first that I'm helping to organise, then post conference 'holiday' programme, then real holiday on Isles of Scilly - can't wait for that bit, so long as I can sleep reasonably! Hope your days are going even better after improved nights.
I'm really appreciating being part of this and listening to everyone's experiences as it will help me to know what to discuss with my Dr.
Great to hear i can only speak for myself and i,m exactly like you still can,t belief my luck and pinch myself every morning after 18 months still good have the odd night here and there but few and far between long may it continue for you
Hello Pam - sorry not to have replied - have just been incredibly busy!
Just to let you know that things remain steady for me. I coped with the conference, despite some very late nights and a couple of poor nights' sleep (not RLS, just poor sleep). I was supposed to go to Scilly yesterday but the flight was cancelled - hope to get there this afternoon.
I have really appreciated seeing all the posts, and am trying to work out exactly what to say to my GP when I see him in a fortnight. My main objective is to come off ropinirole. He is usually very receptive to what I say so am hopeful.
I gather from some posts that the Royal Devon and Exeter is a good place for consultants. It is one of my nearest hospitals so I am hopeful for a referral there. The question will be, do I wait to see a consultant (however long that may be) before changing medication or try to begin coming off ropinirole now if the GP will give me, I believe, Tramadol and Oxycontin - is that right? It's the exact combination of things that I am still unsure of, and the doses needed, and how and what to replace ropinirole with - pregabalin or gabapentin? Do you have any specific advice on that? Have you tried the magnesium citrate, or spray, or anything else (cannabis oil - can't remember the initials!)?
I used to just be on codeine phosphate 45mg per night, but swapped to the ropinirole as it would help my sleep more, so would it help to go back onto that at all? I now realise the ropinirole was a bad move despite the fact that I'm actually coping pretty well on it. But I realise that augmentation is a problem and would rather come off it now as I've already had to gradually increase to 1.5mg with earlier onset of RLS symptoms at much increased intensity and getting it more in my arm again, with some very dire nights until I increase the dose again.
How are things going with you and the pregabalin? I hope it's going well. You say that side effects are weight gain and water retention - I'm slim and tall so some weight would be OK, but not much as I have arthritis in my spine and cannot afford to carry weight around!
The Pregabalin is going really well thanks. I’m on 150mg, sleeping for the first time in ages and waking up not tired for the first time in ages! I don’t want to raise the dose so let’s see what happens. No weight gain either yet 😊
Speaking about my experience I used Tramadol to withdraw from the ropinirole, just 50mg in the evening with another 50mg in the night if I needed it. My appt with my neurologist took 8mths to come through and I was in a mess with augmentation so my doctor prescribed me the Tramadol and I reduced the ropinirole by 0.5mg every week. Slowly does it so don’t worry if it takes longer. It will probably be the hardest thing you’ve done so do it in your own time. And be prepared for some awful nights. It gets worse before it gets better!
By the time my appt came through I was managing on just the Tramadol 50mg a day and it was working pretty well. The neurologist recommended Pregabalin but as the Tramadol was working so well I stayed on it for about 2 years until it lost its efficiency - then I swapped to Pregabalin.
I also take iron bisglycinate every other night to maintain my ferritin levels. I used to take magnesium but was never convinced it did anything for me. Other people swear by it!
Hope you find that helpful- don’t hesitate to message me if you want any more information.
From that I gather that you did your start on pregabalin during the school summer holidays. Probably a wise move and I hope the stability of its effect will continue for a long time. Working in a school is no easy task, but must be much worse if you don't sleep well!
You might get light headed! I didn’t and most side effects abate after a couple of weeks anyway so don’t let that put you off!
If we took notice of all the side effects of drugs we would never take anything. By all means read them so you are aware but don’t assume you will get them all!
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