Hi all!After 30 years of Pramipexole I went on Pergabalin. I was dizzy with it and had many falls. I am now on Gabapentin 600 mg 2 hrs before sleep and it doesn't seem to help enough to give me quality sleep. I still wake several times a night with RLS
I changed to a part time job as it was too much working a 40 hour week. Working hours are 17.00 until 21.00 hrs from Monday to Friday.
Unable to take Gabapentin when working as it makes me feel sleepy.
Shall I switch back to Pergabalin?
Try to ask my GP to switch to something else?
Thanks in advance!
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Moonwalker1967
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Add 100 mg every couple of days until you find the dose that works for you as you leave work at 2100 . Then take your 600 mg at 2300 and go to bed at midnight. This may be later than you have been going to bed but since you don't have to go to work in the morning you can sleep later.
Sue, super valuable advice. I will do as suggested. Thanks 🙏 so much for your help. I will need to contact my GP (I am in the UK) to up the dose by 100 mg. I soooo want my quality of life back!
I was on Mirapexin for 22 years and had reached the maximum dose. Augmentation made my symptoms much worse, and life was awful. I started taking pregabalin late evening about four years ago. It helped me reduce my Mirapexin dose down to one tablet (from five) over three years. I did not suffer any side effects from pregabalin. However, despite increasing pregabalin to way over the maximum dose (575 mg vs 450 mg) I could not reduce my Mirapexin to less than one tablet.
Based on advice from people on this forum I used the Mayo Clinic Algorithm to help convince my GP to prescribe opioids. They worked like a dream! I took my last Mirapexin on 7th July and returned all my unused tablets to my local chemist – I will never take that drug again!
I now take 25 mg of a morphine sulphate medication (brand name MST Continus 5 mg and Zomorph 10 mg) when I go to bed and have reduced my pregabalin to 300 mg over a period of many weeks. My plan is to keep reducing the pregabalin until my symptoms return and then work on the right balance between the two medications.
I live in the UK and the above was all via my NHS GP.
It's taken 4 months to reduce my pregablin down from.300mg ...I'm on 75mg now, legs are awful again but the cocktail of medication over the past 18months has made me just want to be medication free due to the side effects,especially the pregablin reductions.I'm back on 4 x iron byglicinite before bed ,which works until it doesn't. X
Oh so u r saying u took pamiprexole for 30 + years but had to augment it as the RLS spread to your arms and had to keep increasing pamiprexole? Ok so what side effects encouraged u to quit taking it . Or did u quit taking it and what was your highest dosage?
I am taking it now and want to be prepared. It certainly is working on a half of the lowest dose 0.125mg.
I was on it a year ago and my hair was falling out and wt fan, so I stopped and holy hell with other meds causing side effects, one caused suicidal ideation thought, the levodopa, sonI have suffered so bad this past year and had no life so decided to b a bald fat woman and go back on pamiprexole cause it did work for me: I even had to quit working due to no sleep. I was scared I would make a mistake or miss something with my patients as I am a nurse practitioner.
RLS results from the gut dysbiosis arising from chronic consumption of vegetable carbohydrates. With a carnivore way of eating RLS symptoms fade to nothing. It's not what you have to do, it's what you have to stop doing. No drugs, doesn't cost a penny. After 30 years of RLS I hardly remember what it was like. Do your research. Get off the drug racketeers.
Here's a Reddit thread about Carnivore Diet and RLS...
Lots of folks ascribe different diets for RLS, keto, paleo, vegetarian, carnivore. Bear in mind - everyone is different and no diet is immediate - many months to see results or lack of.
I’m interested in your research, my son has been interested in this for years but found it extremely difficult to maintain for long periods of time. It allows very few choices or variety especially in a society that includes meals in almost everything they do together.
This is very interesting. No none ever mentioned it Andy his is first I have read about it. Please share more of your experience. Jan in Alberta Canada
Very interesting, I'm convinced rls and the microbiome are related but wouldn't know where to start with diet, suggestions welcome, 40 years of rls hell, I'll try anything!
Just because you had problems with pregabalin did not mean there weren't other alternatives than going back on pramipexole to control your RLS. You will soon suffer augmentation again. If you want to know about other alternatives, reply to this.
My neurologist also suffers from RLS so he is very knowledgable on the topic, thank goodness. After I weaned of Pramipexole, he put me on 150 mg pregabalin and 50 mg tramadol. Occasionally if my RLS is really acting up because of stress or very hot weather, I am allowed to take an additional 25 mg. Tramadol (I just break the pill in half). It has been a real game changer to me.
For anyone's information, I live in Vancouver, BC and my doctor is Dr. Valerio at UBC
How much do you take? According to the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... the usual effective amount is 200 to 300 mg.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
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