Hello. I am sharing my journey with RLS, in the hope it may help others.
I have been suffering from RLS over the past 3 years but symptoms have gotten worse over the past year and were happening every night, in the past few months in spite of taking iron supplements, vitamin C, D, B1, B12 and magnesium. I met a neurologist last month who recommended a dopamine agonist but I decided to stay away from that due to augmentation risks, as per the AASM’s recommendations (aasm.org/wp-content/uploads.... I have also spoken to another sleep specialist, who advised me against dopamine agonist for the same reason. I have since seen several specialists on YouTube warning against the risk of augmentation.
The AASM recommends an iron IV infusion as a first line of care, but I am non-anemic; My ferritin is in the normal range (100-153 µg/L) and TSAT (41%). I initially pursued the infusion therapy but I was told by a sleep specialist that I most likely don’t have brain iron deficiency and would risk iron overload. I therefore decided to stop pursuing that line of treatment.
Two weeks ago I began taking gabapentin because I was suffering from severe insomnia. According to the AASM guidelines, the recommended effective dosage varies between 400 mg and 600 mg and that patients should start on this medication gradually to minimize the side effects. I started with 200 mg at bedtime and adding 100 mg during the night if needed. My RLS symptoms have dramatically reduced and so far, I have minimal symptoms and sleep much better. I initially experienced some brain fog during the day, but that has cleared up. So, for the time being, I will maintain a low-dose of the medication and will try to keep a good sleep hygiene.
For those taking this medication, what has been your experience? Do you find that you could maintain your dosage or have you had to increase it?
I will continue pursuing my research on non-drug therapies, as there are apparently emerging therapies that seem promising. One of them is Transcranial magnetic stimulation (TMS) for RLS and I include some links below:
TMS to Explore Restless Leg Syndrome | The Insomnia and Sleep Institute
It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason (not sure about pregabalin).
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 at Https://mayoclinicproceedings.org/a...
You might have to add 100 mg after say a decade but otherwise the same dose will continue to work.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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 like therapulse, 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 have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
I am only taking levothyroxine in the morning for hypothyroidism. Although gabapentin is not known to cause augmentation of RLS, I wonder about tolerance buildup (the body getting used to the drug, making a given dose less effective)? I am not finding much research on this specific topic.
Time your medicines so that you take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.
During the first year of taking gabapentin it is common to have to adjust your dose but after that as I mentioned above it might be as long as a decade before you have to add 100 mg again. Since you can take as much as 3600 mg that is obviously not a problem. I have been taking gabapentin for 4 years with no increase. In fact I found 6 months ago that I could decrease it.
I’ve had 40 rTMS treatments (which included 10 TBS treatments), for TRD. I have had RLS FOR 50 years. It was great for the TRD for about 4 months, and did not change the RLS. At $500 a treatment that required restructuring my life for 10 week for the daily treatments, I would not do it again
Search this site as there are one or two others who also tried it. Just make sure that any reports that you read are in relation to treatments which target the motor cortex of the brain. Different medical conditions require different brain regions to be targeted.
Many take prescribed meds for RLS but I haven't. Worried about augmentation, long term side effects etc.. Magnesium products are working for me,..cream, butter, sprays, tablets etc.. Also tried Therapulse ( mine has stopped working ...needs replacing).And avoiding alcohol, sugary drinks etc...Hope you find relief.
It is good news to hear that the advice you have been getting is now advising against pramipexole, in Canada at least.When I went down the medication route pramipexole & ropinerole were the go to meds to take for RLS & not much was known about augmentation, so I suffered hugely.
Some years ago I was put on gabapentin and had no side effects.
However, for me personally gabapentin was too ineffective for me, even when I went up to 2,100 my!
So, I have had to move on to buprenorphine which works a treat but if gabapentin is working for you I would stick with it.
But in answer to your question a low dose of gabapentin did nothing for me so I very gradually went up to the 2,100mg with no side effects and that did work for a short period.
I was on gabapentin for approx. 6 months, during which time my dosages increased to over 1000 mgs; while it helped at first, over time it made my condition much worse. I also gained close to 20 lbs while on it! At my age, 57 now, this was not healthy and I am still working to get the weight off. But maybe it will work for you!! Good luck!
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And now for the good news
Nausea and pramipexole
Horizant for RLS
Neupro
