Pregabalin side effects or RLS?

Hello, I am new to this forum but am desperate for some advice and support from people who understand what impact RLS has on your life.

It took over three years to get a diagnosis of RLS and PLMS to explain why I was exhausted all the time - GPs just kept telling me I was depressed (and I was because I was so fed up of being tired all the time!). My ferritin levels were low so we addressed that but it didn't make a difference. My consultant decided not to try dopamine agonists as she thought I would get augmentation, so put me on Pregabalin starting at 25mg and increasing to 100mg. It has now been seven weeks and I have another three weeks until I see the consultant again for review. I asked my GP to incease the Pregabalin dose and he wouldn't but gave me Zopliclone. I took one and felt so awful I won't ever take one again! I have upped my dose gradually of the Pregabalin as the consultant said 100mg was low and I know that 300mg is usual for RLS. So I have been taking 150mg.

I've been keeping a diary of how it is working, and it is really depressing reading it. In the first couple of weeks I had the odd - wonderful - moment where I felt like my old self was coming back again. I had energy and my brain was sharp. But now I feel as bad as I ever had. I am sleeping more solidly than I have done for a very long time, but I can't shake what I call the pregabalin hangover. I can't wake up in the morning, feel fuzzy headed all day, can't remember simple words, need to nap in the afternoon, and have no motivation or energy.

I woud really welcome hearing other's experiences of Pregabalin. Is this just side effects? Will it all wear off? Do I stick with it or give up? I'm concerned the longer I take it the worse it will be.

I am also having other side effects - massive weight gain in just a few weeks, water retention, sweating, and changes to bowl habits. I am feeling very low (I have been on Sertraline for three years on and off, which possibly is making the RLS worse which my GP acknowledges but won't change it.)

I would be very grateful for anyone's insight on this.

Thanks for reading.

[involuntarydancer]

You poor thing. It’s very disheartening when the side effects have such an impact. I think the pregabalin exhaustion hangover might settle down as your system accustoms. I’m pretty sure I’ve read accounts of others saying that it does. Some of the other side effects might improve also although the drug is notorious for weight gain.

I didn’t get along well when I relied on pregabalin solely for my rls but it does help as part of my complicated drug regime of small doses of a variety of drugs. In general I found that my daytime exhaustion improved greatly when I started taking dipyridamole (a blood thinner which is the subject of studies for a potential benefit for rls sufferers) and even more so when I added ldn to the mix.

I hope things settle down for you. In your shoes I would be inclined to stick with the drug for another few weeks if you can bear to. You don’t specifically say but I assume that it is helping deal with the rls at the current dose.

[Hidden]

Sorry to hear you're going through this. It sounds awful. Excuse me for not being quite clear what the Pregablin is for. I have been taking Pramipexole for years for my RLS, it's never been entirely effective but enough for me not to seek alternatives. However recently I started on Gabapentin, which I believe Pregablin is the precursor of. But it's not for my RLS but for nerve pain caused by a compressed nerve in my spine. This might be a positive thing since previously I was on Amitriptyline for the pain which I have just discovered is not good for RLS whereas Gabapentin is used for treating RLS.

I agreed to the Gabapentin because I was in a lot of pain at the time and couldn't even stand up or walk for more than about 30 seconds before it got unbearable.

I did have some reluctance though, to start on Gaba because I've heard of it's pretty bad side effects. When I first started on Pramipexole I recall it virtually knocked me out and some days I had to literally crawl up the stairs to bed. I got used to it though.

I'm now on 900mg Gabaoentin a day and don;t know how that compares to Pregablin and I'm not having , as yet, the side effects I expected.

All to say, I have read and I experienced with Pramipexole, that side effects wear off after a few weeks as you get used to it. So I suggest you stick with it for a few weeks to see if that happens or not. Then you can make a choice to continue or not. If the Gabapentin side effects kick in for me, that;s what I'll do. If they become permanent, then that;s another matter.

Quality if life is a balancing act I guess, if the side effects of a treatment are worse than the condition it's supposed to be treating, then what's the point. But you have to take into account permanence. I've had cancer and got off lightly with relatively untraumatic treatment. I know people who have given up on treatment because of it's side effects. In this case it's a matter of whether the treatment is intended to be curative or palliative. The treatment (and it's side effects) is not permanent. Not having the treatment could have permanent consequences.#

Stick it out for a while.

Good luck

[Pippins2 in reply to Hidden]

Pregablin and Gabapentin are used for RLS as well as pain .Very hit and miss didnt help my RLS but many get excellent results from it .Like most things in RLS world its trial and error

[Dcb55]

Pregabalin is marketed in the US as Lyrica. Supposed to help nerve pain among other things. I tried it after I had augmented on roprinerole (Requip, similar to mirapex) and had no effect, no relief, from gabapentin. So they put me on Lyrica once the other crap was out of my system and I hatred it. I had the side effect you identify except I wasn’t on it long enough to gain weight. Besides waking up like a zombie, I kept falling. It wasn’t that I was dizzy or off balance and fell because of that, it was that if I tripped on something or turned around too fast or all the millions of little things we do daily that we don’t notice because we naturally recover our balance, I’d end up on the ground. I lost the ability to catch my balance. It was almost like I didn’t know where my feet were. I fell a couple of times where it was no big deal, and then I landed on my knee and needed a cane to get around. I recovered, I fell again, needed the cane again, and decided I was totally done with waiting to see if “the side effects cleared up.” It also did nothing for my RLS. Lyrica is a bad fit for me. I went on to try two other things before I got to the diagnosis of refractory RLS which means none of the standard treatments work. I take a combination of hydrocodone (low dose opiates) and clonazepam (a benzodiazepine because opiates keep me awake at night.). Works very well although the clonazepam makes my brain not feel as sharp. I am writing a book though and it’s coming along great so I think maybe I just feel dull rather than actually being dull, if that makes sense. Wish I could just sleep with then opiates — it would be so much easier.

Anyway long story. Sorry. I just added all that because when people are struggling with one drug there is a temptation to think that nothing will ever work. Yes it will. You just have to find it!!

[Hidden]

i found pregabalin worled like a miracle at first ( and had never taken a DA ), started at 50mg and it worked straight away. Gradually over the years the effect wore off and the side effects kicked in as the dose was increased. max i took was 150mg. I definitely put on weight quickly and i too felt unsteady on feet and also used to get sudden drops in blood sugar with need to cram in eg biscuits as felt so shaky and sweaty.

i also think it caused augmentation and the worsening has never worn off but that could be coincidence and the natural worsening over time.

I never had drowsiness i could blame on the pregabalin - always blamed the actual RLS - but my dose increase was very very gradual.

i enjoyed the time when it worked. Would I take it again? - not sure. I retried it a couple of years ago at 75mg, put on weight again and hated it.

i also think it made me feel very anxious and i couldn't get concerns into perspective. That also stopped when I stopped it.

Does your Sertraline affect your RLS in any way. I think there may be better antidepressants for this even though your GP doesn't want to change. I don't have that answer at my finger tips but will look up and you might want to too though others on this site will know the answer.

I'm afraid I haven't yet found any decent sort of answer for my horrible RLS. Keep hoping!

[Hidden]

Thank you everyone for taking the time to respond. I will try and stick with it until at least I next see the consultant. Looking around this site, it is clear there is no easy answer to RLS, sadly.