Update to previous posts: GP has prescribed Pregabalin for RLS.
Currently been advised to take two 25mg tablets before bedtime. First night was great. No symptoms but still some fractured sleep.
Since then, my legs have been truly awful. Jerking, moving from 2am/3am until morning.
I have had to get up, walk around the garden etc.
I perhaps stupidly have also been taking codeine to try to literally knock me out and I’ve had vivid dreams, often unpleasant plus heart palpitations, sweating and still fractured sleep.
I had everything pinned on this medication but I’m worried that it is exacerbating symptoms and causing me to have very trippy experiences.
I know you guys will be able to help. This forum is a real lifeline to us. Thank you in advance for any replies
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careerSquirrel
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There is a 1.7% risk of augmentation with pregabalin over a 52 week period in a study but that was with 300 mg of pregabalin and over 52 weeks and the longer one was taking pregabalin the more likely so that is very very strange that it happened after 2 days. You might want to switch to gabapentin and start with a low 100 mg. Otherwise did you do anything different - eat anything different - take an OTC supplement? What medicines and OTC supplements are you taking?
The heart palpitations is probably the result of the codeine although usually the pregabalin helps with that. Low magnesium can cause heart palpitations but that is not likely to be the cause since it happened when it did.
Nothing different apart from taking iron supplement in the morning. My results came back after fasting and early morning bloods to be lower on ferritin but slightly higher in TSAT to 20.
Do you think the dosage is too low as the mayo algorithm says I should start on 75mg?
Interestingoh, I sleep soundly from 6am - 11am so maybe I need to take the Pregabalin earlier ?? I doubt the GP would offer Gabapentin after such a short time on Pregabalin. She was horrified that I was suggesting an iron infusion and told me that iron is a toxin and it went against everything she was taught at medical school.
Iron is a toxin - now that is a new one. Too much iron yes. Unbelievable!
Taking pregabalin earlier would only cause it to wear off earlier. I assume you are taking it 1 to 2 hours before bedtime. I guess let's see what happens tonight. If the same thing happens you have a good argument for switching to gabapentin.
RLS follows the dopamine cycle. Dopamine starts to fall at 6 pm and starts to increase at 6am. That's why most RLS sufferers sleep well between 6am and Noon. We're vampires!Seriously though, you should see another GP. This one is very out of date on her knowledge.
Newer formulations of iron are now safe with very small risk of anaphylaxis.
Also, pregabalin starting dose is 75mg, not 25mg. 50mg is too low.
Heart palpitations and sweating are common opioid side effects so probably caused by the codeine, NOT the pregabalin.
Find another GP, then ask for an increase in pregabalin. The average dose is 150-200mg at night.
If you have trouble with changing GP, can you see a specialist privately?
Dr Jose Thomas at Gwent Sleep Clinic or Prof. Walker at Queen Sq would both arrange an iron infusion for you and would prescribe the correct dose of pregabalin.
The rhetoric you get from GP’s is interesting. One GP told me that taking more than 25mg would make me into a zombie. All joking aside, it’s misinformation that scares sufferers like me into fearing the worst.
I contacted Gwent but was told that referrals between nhs wales and nhs england are complicated so to try a sleep clinic in England. I have been referred to Dr Andrew Hall and Leicester General Sleep Clinic.
Can I take the 25mg x 3 capsules?
Also think I might need to take earlier in the evening.
As 75mg is the recommended starting dose for RLS, yes!But you will need higher doses to cover the RLS.
I attach the NICE guidance on RLS. It specifically says 75mg is starting dose and to increase up. Max dose is 450mg. Perhaps print off to show your GP. They're supposed to research for themselves if they aren't aware of a particular disease or treatment. But we know that doesn't happen.
I started pregabalin on 150mg a day on doctors advice and and went up to 300 after a week or two. I certainly wasn’t a zombie although I did have a couple of mild side effects including a sort of speech stammer and a bit of “cognitive fog” although hardly noticeable most of the time. I took it for neuropathic pain which is different to RLS but the side-effects are likely to be similar whatever you take it for. I didn’t feel any real benefit until about 300 mg a day. Some people do abuse pregabalin and it is a class C drug so some doctors are probably overcautious but if you read this forum for any length of time you can see that a lot of people get on with it okay although some do have side-effects such as weight gain or oedema.
Thank you so much for your reply. This forum does what medical professionals don’t it would appear and that is provide some perspective.
I’m still not sleeping but last night my legs were better. This coincided with splitting the dose and taking it earlier in the evening. I automatically reach for codeine when I wake at night (I know this isn’t advisable) and I need to not do it but I get panicked when I can’t sleep.
I agree that GP’s are extremely cautious. I’ve asked a different doctor to prescribe 75mg capsules and she has agreed. I feel there is still a suspicion that the drug will be abused although zero factors to support that.
Hiya. I personally found that firstly, Gabapentin, and then the subsequent prescription of Pregabalin, did very little if not nothing for my RLS. In desperation, I also started taking co-codamol during the night, just to knock myself out.
After eight months of trialling these two drugs, my RLS specialist has now put me on a low dosage of opioid (5mg Oxycodone) with just 150mg of Pregabalin. I am only on day three, so cannot really provide any meaningful data, but I have had two nights with barely any RLS.
I am on Pregabalin , I started on 150 mg as I was previously on Gabapentin ( straight swap). I increased it to 200 mg which controlled the RLS and allowed me to sleep through the night. I moved the timings about before finding times which worked best, 100mg at 9.00pm and 100mg at 10.00 pm, taking the whole dose together increased the side effects. It took time to find the right dose and timings. I reduced my tablets to 150 mg as I couldn’t tolerate the side effects, now I wake more frequently in the early hours but 2 paracetamol and 30 minutes distraction and I can get back to sleep. I would be interested in your experience at Leicester, I only saw a registrar.
This is really interesting. What kind of side effects did you experience? I’m currently feeling a bit panicky, groggy during the day (I could live as a vampire) and a bit cognitively foggy.
I’m very concerned about swelling and weight gain. My confidence is rock bottom as it is.
My doctor has prescribed a higher dose capsule of 75mg but I think they would hit the roof if o took more than that.
I originally spoke to Gwent Sleep Clinic as many on this forum had recommended Dr Jose Thomas. They weren’t too keen to accept a referral as I am in England so they suggested contacting the sleep apnea trust and finding a sleep clinic nearer to me. Some sleep clinics are mostly about respiratory issues but others deal with sleep disorders including RLS. It remains to be seen how long this referral will take and longer still to see if Dr Hall approves an iron infusion.
Did you check your iron levels before starting medication?!
I haven’t put on any weight, I often feel hungry so I tend to eat fruit etc. I had awful brain fog on 200mg but it is minor at 150mg. The worst side effect for me was difficulty sometimes finding words, so big pauses in conversations and I started to stutter, at 150 mg this has now gone. I have accepted the minor sleep disturbance rather than total control and the side effects. My gp is useless so I just adjust the tablets to fit my needs. My referral took about 6 months, I had low expectations but the advice I was given was dire.
Hi, I take Pregabalin 3 x 25mg at night. Works well most nights if I am not too stressed. No experience of codeine. I also take one Tramadol midday which helps.
I had exactly that on pregablin and one night the room was lit round all the picture frames with brightly coloured stars.I rang 111 as I was also getting chest pains and they told me to go to A & E.
The doctor there did all sorts of tests and told me I had been on a "drugs trip"!!!
He took me straight off pregablin & put me on gabapentin & I have had no side effects whatsoever.
Can I ask whether you were prescribed gabapentin through your HP or through a specialist or consultant??
I’ve also experienced unpleasant dreams and quite scary ones to be honest. I am still waking up and walking round the house but I did better last night as regards RLS.
Have you experienced any unwanted side effects on gabapentin??
Glad you are managing your sleep and symptoms. Hope I can too
My dreams/nightmares on pregablin were absolutely terrifying.The hospital doctor got in touch with my GP (both in the same town so all the doctors know of each other which makes life easier) & recommended I go straight on to gabapentin.
Hi. I recently started taking Pregabalin after weaning off Pramipexole. I started on lower dose but am now up to 350mg. I don’t know if my experience is common but your dose of just 50mg per night seems very low. Also, each time I have increased my dose, it has taken a couple of weeks to have any real effect. My RLS is well controlled but my PLMD has been barely affected. I hope that helps. CareerSquirrel.
Yes it would appear that I have been instructed to take a very low dose. Another doctor has agreed a small increase to 75mg. I know I need to give it time.
I’m experiencing waking in the night still but I feel so groggy in the day. I could curl up and sleep most of the morning and afternoon.
Have you experienced any side effects with Pregabalin? I’m very concerned about this as I don’t want to gain weight and have a full time job. I’ve had some time off to get used to this medication but I cannot imagine working and feeling this groggy all day.
Hi again. It’s difficult to say as I have other health issues which muddy the water some what. I also came off Pramipexole which is said to take months to leave one’s system. As I said in my original reply, I mentioned Pregab had helped with RLS not PLMD. I find it difficult to get to sleep most nights. I always used to be up with the Lark but now I can and have slept in till mid day. Some times I wake up with a dizzy head, can’t drive and feel unstable on my feet. That usually clears by mid afternoon. I did see a post from another sufferer saying she had muscle weakness in her thighs. I have had the same since being on Pregab but can’t say for sure it’s connected. Hope that helps.
Give it some time. You've just started. I am a little groggy in the AM but my 2 cups of coffee (if it doesn't make your RLS worse) right out of bed helps a lot. I only gained a couple pounds and the usual reason is it makes you more hungry. Otherwise by itself it isn't a problem.
Thanks, Sue. Last two nights were good. 75mg around 9.30pm and no jumpy legs. Insomnia is still a pain but one thing at a time. I guess our bodies and brain gets used to disturbed sleep so it will take time but I’m grabbing the positive where I can.
I’m so grateful to you all for your guidance- it’s a godsend.
One final Pregabalin question: can I have an occasional glass of wine and still take this medication????
Pramipexole was a miracle drug for me until my symptoms started getting worse after a few months after each increased dose and I reached the maximum dose. Then the drug caused augmentation which means it starts making RLS worse. To go onto another drug, I had to go through the hell of weaning off it. Months of RLS worse than ever, feeling like crap, not sleeping, depression and mind fog. My advice would be to ask your GP to put you on Pregabalin or Gabapentin before you go through what so many of us have. All the best.
To come off pramipexole, reduce by 1/2 of a .088 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or 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 you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
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