← Return to Restless Legs - Any suggestions as seen many doctors and medications

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@3dogs

Thanks for the info and waited to reply as had an appointment with a neurologist couple of days ago. First it was the 2nd time I saw him and disliked him even more after this appointment...lol so he was not any help. I need to find another. I take B-Complex but wonder if I should try the B12 instead. On the Magnesium you stated that you take 6 capsules. What mg is each one? While waiting for this appointment I asked 2 different pharmacist, and both said that magnesium is not just flushed from your system like some vitamins and so should be careful how much I take. Tried to talk to this neurologist about it, but he could not be bothered to answer other to say what I take now was sufficient. I have had Iron test in past and even took extra Iron for about 8 months with no change so current primary said to stop since my levels were good. This neurologist mentioned another Iron test but said levels could end up being good, but body/brain not absorbing which I had just read about....he said no way to test that part. because I have had reactions to 4 different types of meds for RLS he wanted to give me pregabalin, but he got mad when I said no. My primary had given to me and when reading the side effects, it scared me. I know everything has side effect, but pregabalin seemed to have very serious side effects and because I have reactions to many types of medication including the 4 given for RLS that I was scared to take. I even have reactions to benadryl so I'm the person with the bright pink wrist band when in hospital for surgery...lol Will see what this new Iron test shows and think I will try the extra magnesium. While I don't think my mom had RLS she did have leg cramps all the time...I remember even as a kid that my mom would jump up from leg cramps. I get leg cramps often; some medications give me foot/ankle cramps. example recently I started taking prescription Omega 3 and now have leg/foot/ankle cramps every day, which I had planned to discuss with the neurologist, but after I said no to the pregabalin he was mad and he said he had another patient and left. think I was with him for about 10 maybe 12 minutes. I take 150 mg trazadone to help me sleep and even with that I move so much that have worn a hole in bottom sheets. I've taken that for about 25 years when a doctor discovered I hardly slept and just had surgery which is not good. my brother only sleeps about 3 or 4 hours a night and several things have not helped him... I know trazadone can irritate RLS so tried to stop in 2019 and didn't sleep for 30 days. Recently my primary said I should not have stopped cold turkey on my own...he had me take 100 for 2 weeks, then 50 then none...for 6 weeks I had almost no sleep and my legs bothered me even more or rather with no trazadone to help me sleep I feel the full effect of RLS so after 2 weeks of nothing and no difference in my legs I started taking it again. My legs will bother me even during the day or evening and can be worse if too much activity or if too little...lol Its a rare evening when my legs don't bother me so when they don't, I will sit and not move my legs....I will not even twitch my toes...and wait until the very last minute to get up and go to the bathroom and then hope my legs don't start bothering me. Ive tried so many things it crazy.

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Replies to "Thanks for the info and waited to reply as had an appointment with a neurologist couple..."

Ropinerol completely stopped my RLS. Another drug that worked nearly as well was Sinemet. Before finding these drugs, prescribed by my neurologist, I had taken all the supplements you mentioned and got no relief at all.
I highly recommend these drugs and suggest you see a neurologist for treatment. The problem is in your brain rather than your legs.
Blessings,
Karen

The magnesium glycerinate per pill is 240 mg ( I believe; I ran out and need to purchase more) one pill wasn't enough, and I doubled it. Then I read 500 mg is the dosage, and began using 4 pills, then determined though another forum I am with, that six pills at 240 ( I can't recall if 240 g was two pills) The pain management doctor recommended magnesium glycerinate, not citrate, as the glycerinate works through your body. Many RLS suffers use glycerinate at well.
I would look into using another neurologist. How dare he abruptly walks out on you, because he wants you to stay on the pregabalin. The defense agonist (DA)of pregabalin is not used today by neurologists due to augmentation, which I suffered as well two years ago. The neurologist I saw had me go off pramipexole due to an increased dosage in one year. It was hell, and I had nothing to counter it. I slowly tampered it down, and lost many nights of sleep. He then prescribed methadone, of which I was set-dead against. I switched to another neurologist who is a good one, only to find out he too prescribed methadone, and knew after research, this is the correct path. I began small, and worked up to 20 mg, too high in my opinion, but it did work, except for the painic attacks. This struck me at any time, airplanes, medical testing, and it was alarming. I tapered down from 20-5 mg over 2-3 months, where I am at currently. I continue to have break-through RLS after the nightly methadone pill, and take a codeine with acetaphemin. I am set to see a sleep specialist with Mayo soon, and curious to see what they say. I have had two sleep studies, one in 2016 and one in 2023.Both inconclusive. I hope the Mayo doesn't prescribe another one. After experiencing RLS for over 25 years, I am doomed for life with this crazy disease, and can operate well the next day with only a few hours of sleep.
I would search for another neurologist. Since arriving at our current location, I have seen four, yet I am not a textbook case, and I am not wild about the methadone. I don't know what else is out there, as I have exhausted all medications out there for this wicked disease.