I have had RLS for about 6 years. The first medication was Levodopa 100mg as usual. After about 2 years it didn‘t do anything for me anymore. My new medication was Pramipexol 0.088 mg, which for 6 months worked OK. Then continuesly insomnia set in and I was sleeping or better just dosing off for 1-2 h at night . I had found out that doing some exercises helped me fall a sleep again, but just for another 1 or 1,5h hours.
My doctor recomenned increasing my Prami doage to 0.18mg. After 1 year the benefit disapeared again and I was told by my doctor to just talk the next dosage. I refused, fearing the side effects.
I had read about spitting my medication. So now I‘m taking 1/2 of the 0.18 mg (0.088) about 2-3 hours before bedtime and the 2 part 1h before going to bed. It stopped the RLS syptomatic, most of the time, but I still couldn‘t sleep. Then I heard about using GABA. I was very reluctant to go to the doctor again, because telling him to help me sleep was like pulling teeth.
I ordered GABA as a nutrient supplement from amazon 750mg /capsules (350 capsules €24.90). I now take 1 capsule 1h before going to. About the same time with the 2. portion of Prami. In addition, sitting on the bed, I take 5mg Melatonin in a sublinugal tablett. After 0.5h I can fall asleep and have at least 4-5 h of continuous sleep. Waking up is OK, because I’ve leanred that exercising. ( shadow boxing or shadow chopping wood ) helps me fall asleep again for at least another 3-4h.
Now my question is, is Gabepentin or any of the other prescription drugs of the same sort any better? What is the difference between these substances? Has anybody else ever tried GABA instead of the prescription drugs. My guess is if nutrient supplements do the same you don’t need to see the GP and his salery goes down, That sounds cruel, but has any doctor ever recommended GABA as a supplement?
Thank you for you time time reading and I’m looking forwart to hearing your comments. Ohmg
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Ohmg
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First off melatonin makes RLS worse for most people. I take GABA as part of an OTC supplement that contains other things and it slightly helps me sleep but would never have helped me alone. I take 1500 mg of gabapentin which completely controls my symptoms. I have pulsatile tinnitis which keeps me awake at night so I take ambien 2 to 3 times a week. One should not take it continuously. It puts me out like a light and I easily sleep for 7 to 8 hours. Levodopa and pramipexole are dopamine agonists and used to be the first line treatment for RLS but no longer are because up to 70% of people will eventually suffer augmentation which believe me you don't want. The fact you are having to increase your dose is one of the symptoms of augmentation. Gabapentin or pregabalin are now the first line treatments. If you want to come off the pramipexole, To come off ropinirole, reduce by .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. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole 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 take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. 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." As always discuss this with your doctor. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion post back here and we can give you some advice. 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, estrogen, 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, 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, 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, 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.
I dare say that your Pramipexol is the big player in your regime. Increasing the dosage of Prami is a VERY slippery slope. You could be starting on the path to augmentation. GABA as a supplement has limited effectiveness - apparently it is too big to cross the blood/brain barrier. It is intuitive to think it will help sleep as it is the relaxing neuro transmitter opposing the excitable neuro transmitter, Glutamate. Glutamate is the reason many people can get only a few hours of sleep/night yet get up - go to work and go about their day 'till the next night - excitable all day and sadly all night! Melatonin is generally not that effective and 5mg is a large dose. I have used 0.25 mg sublingual to initiate sleep.
I can only use 200mg of Gabapentin because of kidney disease. I’d like to increase this dosage, but because of my renal count. I am unable. Some people on here take 900mg of Gabapentin for their restless leg syndrome. I can only take 200mg of Gabapentin and 400mg of Clonazepam. I still have restless legs everyday and night. I see my Neurologist in April, lets see what she recommends.
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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.
I take GABA, but I hesitate to reply. It was suggested by my mental health provider to take 500 mg of GABA as a nutritional supplement to assist with CPTSD symptoms. It was completely unrelated to RLS treatment.
In fact, I am unclear if GABA provides any relief for RLS symptoms. I feel like I've missed something. Is this strictly about better sleep or is this about RLS as well?
Researching studies is my go-to when trying to decide what to take to make my body feel better.
If you've done any research on GABA and sleep, you probably realize there isn't much research out there.
At the end of the day, having done as much careful research as possible, it only matters what works for your body.
GABA does not act like a sleeping pill; good sleep hygiene is still critical.
In fact, if there's one thing that has improved my sleep by several hours (if my RLS is under control) it is by stopping my supposedly benign OTC allergy medication.
When all else fails, listen to your body. What is it telling you?
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