I started pregabalin in May and the first time i took it at 150mg i started with hallucinations but slept well. I haven’t slept well on it since. I have been checking in on this health site and taking your advice. I
Have gradually increased dose to 275 but my sleep has got worse and worse. My partner describes me dropping off to sleep and then seconds later, i am shouting and thrashing about. It has got worse on a higher dose so am very reluctant to increase it. It now feels like theRLS is different, its all of me, and the legs are a lot crazier, different to my old familiar RLS.
I am now at the end of my rope. I am too scared to keep taking pregabalin, esp as i now know it is a street drug.
My docs says i can have another iron test in September, not till then, i am due to speak to the clinical pharmacist in mid august about taking HRT as i had an early menopause at 47. I was never offered HRT. So now i am clutching at straws… will these be the answer?
Your help and suggestions always welcome, thanks in advance.
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Jukebox55
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I would suggest you slowly come off pregabalin like reducing .25 every week or 2. Don't just stop it or you will have withdrawal effects. If you reduce slowly you won't have any.
Unfortunately HRT can make RLS worse as it contains estrogen.
That's ridiculous that your doctor won't let you check your ferritin until September as your last test was in April.
The Mayo Clinic Updated Algorithm on RLS says: "Follow-up ferritin determinations are needed, initially after 3 to 4 months and then every 3 to 6 months until the serum ferritin level is greater than 100 μg/L." Perhaps you could print this out and show your doctor.
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.
Since the pregabalin is causing side effects so that is not the answer for your RLS, you will probably need a low dose opioid. The one that is used most by the forum members is buprenorphine as it works for 24 hours as most of the others don't so you need to take them every 4 to 6 hours or you get mini withdrawals. Again the Mayo Clinic Algorithm discusses these.
That's good to hear. Has she given you a schedule of how to take it? Oxycodone can work well for many, but the average effective dose is 30mg according to the Mayo Algorithm.Oxycodone is the immediate release version and lasts around 4 or 5 hours. Many people find that they need to take it at regular intervals over 24 hours ( every 6 hours) to avoid mini opioid withdrawals (main symptom of which is RLS).
Some on here manage well taking a dose of Oxycodone a few hours before sleep and than another just before bed.
It will be a case of trial and error.
Take your magnesium citrate at night just before bed and it should help opioid induced constipation.
I hope the pregabalin side effects disappear and that your RLS is controlled on Oxycodone.
HRT worsens RLS for some, and helps others. The usual RLS conundrum.As you are having such bad side effects on pregabalin and it doesn't seem to be helping your RLS, you should insist on another full panel blood test. Raising serum ferritin can really help RLS and might enable you to dramatically reduce RLS medication. Sadly, the link with low brain iron isn't known here in the UK, hence the nonsense about delaying your bloods until September. Can you pay to see a private sleep doctor or neurologist in the meantime? They are more likely to prescribe an iv iron infusion to raise levels more quickly.
All drugs used to treat RLS have the potential to be abused, so do not let that put you off. The doses used in RLS are lower than used for pain relief or drug abuse and there is less risk of addiction, (unless there is a history of drug abuse.)
It would appear that your RLS is refractory and low dose opioids would be the next treatment option.
You state that opioids have caused side effects for you in the past. Most can be dealt with. Constipation can be resolved by taking magnesium citrate at night and ensuring you add lots of brassica to your diet.
Discuss with your GP and if you switch to a low dose opioid, reduce the pregabalin slowly over several weeks/months to avoid withdrawal symptoms. I came off 150mg of pregabalin by splitting the powder in 25mg pills and reducing by a quarter every 2 weeks. Extremely slowly. I didn't experience any withdrawal.
You can start the opioid and then reduce the pregabalin so your RLS is covered.
Oh you poor thing. I also found that both Gabapentin and Pregabalin (even at 450mg nightly) were not particularly effective.
As Sue says below, "Since the pregabalin is causing side effects so that is not the answer for your RLS, you will probably need a low dose opioid. The one that is used most by the forum members is buprenorphine as it works for 24 hours."
Last week I had an appointment with Professor Walker at Queen Square in London and asked if I could go on Buprenorphine instead. Interestingly, he said that he would prefer to prescribe Oxycodone ... so I start 5mg of that nightly in a couple of days time.
I am aware of what Sue says about its time efficiency - the tablets that I have only have a life of 12 hours, so I wonder if there will be a daily "withdrawal" feeling.
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