Hello everyone, this is my first post here! I have recently started taking 75mg of pregabalin per day to try and reduce my RLS. Lately, it got so bad that I honestly felt I had no other options (tried magnesium and iron supplements with no luck).
I feel like I am starting to sleep better, but I'm not sure whether that's because I feel quite sedated! If I wake up in the night, or to be fair even in the morning when my alarm goes off, it's very easy for me to fall asleep again almost immediately afterwards (never been the case for me!!) and I feel quite dizzy, tired and confused even during the day.
Is anyone else experiencing side effects at this low dose?
I have an appointment with my GP in 10 days to discuss and review but I'd be grateful for anyone sharing their experience!
This is the first medication I try for RLS.
Thank you all!
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It's encouraging that your doctor prescribed pregabalin as first line treatment.Sedation, daytime dizziness, weight gain are common side effects and they will settle after 2 months.
Pregabalin takes 3 weeks to take full effect. 75mg is the starting dose. It seems to be covering your RLS so if you do increase, go slowly by 25mg every few days. You may be able to stick at 75mg.
If you read this site regularly you will know that your serum ferritin needs to be above 100, preferably 200 and so do keep an eye on your levels and ask your doctor for regular blood tests to check numbers.
Thank you so much for your quick reply! Yes the doctor has been very good in listening and in discussing my RLS with me, and she did say that 75mg was a low, starting dose, and she also reassured me that I could stop taking it without the need to reduce and without fearing withdrawal effects. Do you know if this is actually the case? Not to undermine the doctor's experience and knowledge of course...
Yes I read the site regularly and I'm aware re the 100 for ferritin levels, I think last time I had the blood tests done I didn't ask for exact level, definitely something to keep in mind and to go back and ask for!
If you're on pregabalin for less than 3 or 4 weeks then stopping cold turkey might be alright BUT there are too many horror stories out there about withdrawal symptoms from Alpha2Delta ligands. If you're on these brain chemical altering drugs, any reduction should be done slowly.
I was on 150mg of pregabalin for 4 years. It didn't help my RLS at all so I reduced slowly by 6.25mg ( a quarter of a 25mg pill) every 2 weeks. I had no withdrawal symptoms.
I was determined not to have another hellish withdrawal after being on Ropinirole for over a decade.
Most doctors are unaware of drug withdrawal symptoms because most patients don't report them officially.
So, if you're on it for less than a month, no problem. If you're on it for longer, reduce slowly. The longer you're on it, the longer the withdrawal time schedule.
Sorry to hear about your experience with ropinerole, I put off trying medication for years as I was a bit wary of trying dopamine agonists and experiencing augmentation and withdrawal effects...How are you currently managing your RLS if you don't mind me asking?
It's definitely been less than a month, and it's actually those horror stories that are making me worry now! Those plus stories about side effects not subsiding! I know not having RLS should be worth using the medication, and I did think a lot before starting, but can't help worrying!
You were sensible to be wary of dopamine agonists. Augmentation is terrible. Experts believe DAs cause permanent damage to our dopamine receptors and that is probably why pregabalin and gabapentin don't work for us.
I'm now on Buprenorphine. It completely covers my RLS and I sleep 7/8 hours every night.
I'm extremely grateful to Shumbah for posting about it on this forum.
For many of us, it has been a life saver. Nothing else worked.
I'm glad to hear you found something that helps, although going through augmentation and the endless conversations with doctors etc must have been extremely difficult and exhausting...
To be fair I'm a bit wary of pregabalin as well. I'm experiencing some weird mood swings and extreme fatigue which I find difficult to deal with. I know I'm only a few weeks in and I can't say 100% it's pregabalin as life has been extremely stressful lately and I find the Christmas period very sad in itself. I hope the GP will be able to shed some light on this at our next appointment. I definitely want to sort this out as I need and want to sleep!!
Pregabalin can cause mood swings (typically when changing dose) as well as extreme fatigue. That's why some people can't take it. I take 300mg and also experience chronic daytime fatigue but for me, it's preferable to sleep deprivation.
Thank you for sharing your experience, yes sleep deprivation is awful. So far I am enjoying being able to watch a movie in the evening without my legs constantly moving, and I haven't slept like this in ages! I'm quite surprised it's already making a difference to be honest. I do hope tiredness and mood changes will settle though!
Welcome to the forum. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If they don't and you can't put up with them, then you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses if you need more than 600 mg. of gabapentin, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiple the pregabalin amount by 6 to get the correct dose. So for 75 mg of pregabalin, that would be 450 mg of gabapentin.
Also if the only problem that really bothers you that you are left with is tiredness, there is medicine you can take in the morning for this.
I feel it's maybe a bit early to say as only a few weeks in, however I didn't take it on Christmas Day as I had a few drinks during the day and I felt I didn't sleep as well as other nights - not sure if this is a placebo effect and my own imagination kicking in. My partner has mentioned that he noticed my legs being less restless whist watching movies in the evening though, so maybe a good sign? I'm very concerned about becoming addicted to it, side effects and withdrawal, hence why I put off medication for years as I was a bit scared of trying pramipexole or ropinerole...I was relived when the GP said they now suggest pregabalin or gabapentin as first line treatment! (Thank you for your quick reply!)
You can't become addicted to it. You can become dependent. But if it works - who cares. And if you ever need to come off it, you can avoid any withdrawal effects by stopping it very slowly.
Having been on pregabalin for approx 8 years, I don't believe all of the side effects lessen. One possibly gets used to them but they don't necessarily lessen.75mg is a low dose and if you can control your RLS on that, then great!
And I very much second the other posters comments about withdrawing slowly should you decide to come off it.
No need to fear medication if your symptoms are such that you need it.
I had the same problem when I started taking pregabalin for my RLS But with time that got a lot better. Making certain that your iron levels are adequate is also very important if your iron levels are low, correcting that can enhance your response to the medication and oftentimes you can reduce how much you’re taking a bit so that helps. You should have your ferritin levels checked and transferrin saturation. When you have RLS, Iron requirements are a lot higher and the normal ranges are not adequate. Ferritin needs to be at least 75ng/mL and the transferrin saturation needs to be at least 45%. It is not uncommon to see an elevated ferritin level but a low transferrin saturation… serum ferritin can be artificially elevated so you always go to the transferrin saturation and that will help you decide if you need more iron or not and even though the ferritin might be high if the transparent saturation is below 45%, you will benefit from iron supplementation. A lot of excellent general practitioners are not aware of this so you might want to consult a sleep specialist in your area. IF it is decided that your iron is indeed low, you can purchase over-the-counter iron sulfate 325 mg taken with 200 mg of vitamin C daily and retest in three months but do not start taking iron until you’ve had a test because you don’t want to overload your system… That’s bad! I hope that this is helpful!
Ferritin needs to be over 100. and on transferrin saturation even though you corrected yourself later in your post, I want to make this comment so others will not be confused: It needs to be over 20% and under 45%.
Hi I take pergablin 75 mg for spine problems. I've been on them 6 weeks. I get exactally the same side effects very dizzy effects balance big time and blurry eyes
Hi there, I started on Pregabalin about 6 months ago to help me reduce and eventually come off Ropinirole which I had been taking for about 10 years. . I'm down from 3mg to my last.0.25mg of Ropinirole. I'm having abit of trouble coming off completely, but it's alot better than being on 3mg per day. I'm sure I will get off it eventually but I will need to increase my Pregabalin again to do so. I see the Neurologist next month. I started on 50mg am and 100mg pm. Like you, I felt very sedated and slightly dizzy but I persevered with it and my body soon adjusted. Dose was increased to 100mg am and 150mg pm. Im sure my dose will have to be increased again but then hopefully, I will get off the 0. 25mg of Ropinirole. Fingers crossed. I wish I had never been put on Ropinirole. Horrible drug. Helped at first then I Augmented. My RLS became unbearable, I also started getting it, in my arms. Still do now but not as bad. I'm coping well at the moment. Still hsve RLS, but mostly in the evenings. Sleeping better at night. Thanks to the Pregabalin. Persevere with the Pregabalin and I hope your body will soon get adjusted to the drug. It might not help everybody , what suits one person might not necessarily suit another with RLS, but it's worth a try. Good luck.
I take gabepentin for seizure disorder and migraines and rls. When you first start these meds you will always feel that way however after approximately 2 to 3 weeks your brain chemistry works well with it and it doesnt have the side effects anymore. I always know when someone starts these drugs because of behavior. I always ask "did you get gabepentin recently?" They always say yes. I walk them through what to do. If its a capsule ask for tablets instead then cut it down into small amounts through out the day.
This doesnt overwhelm your brain. Remember these meds are for seizures first then all the rest. Seizures are a brain disorder so you have to let your brain get used to it. However taking it at night is best at first so you sleep through the side effects.
It helps rls some but not enough. I take opiod for pain management and it stops rls completely, also, zolpeidem stopped my rls completely (non time release ambien) it only lasts 4 hrs though and is xonsidered a barbituate/sedative in the usa, so i cant take with opiod unfortunately they just dont allow it even though i never took together. Im not trying to die just want peaceful sleep and lower pain levels during the day.
I hear kratom helps but keep in mind it acts like an opiod so it can be addictive. Just monitor the gabepentin for a while and break it up until your body is used to it. Then the effects go away.
One more thing it seems gabepentin has less side effects than the ones you described for pregabalin, i take 3200mg a day because of seizures, i dont get mood swings or issues, however i have a seizure disorder which is what it was made for. However with that said i havent had a seizure since if you stop gabepentin suddenly you do have withdrawl symptoms so make sure to stage off!!! Ive had to.stop suddenly because i forgot my meds when traveling and it sucked. However i just called the pharmacy and they provided my dose while i was there and then i got home. Always remember your meds because the symptoms of withdrawls were bad. However its a good drug if not abused.
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