I was Diagnosed with RLS yesterday, began Pramipexole but twitching has worsened.

[jdawg77]

After undergoing a surgery, I was experiencing severe insomnia, my brain just would not turn off, almost as if it had forgotten how to sleep. The only thing that turned my brain off was klonopin, but I have been trying to ween off that as I do not prefer the long time side effects of that drug. Yesterday, the neurologist prescribed me pramipexole, after diagnosing me with RLS, but it seemed to be a double edged sword. First, it did calm the burning and tingling in my legs and I did not have to move whatsoever. However, it made me constantly twitch and have very minor spasms that would wake me up right as I would doze off. To counter this, and finally get some sleep, I had to take .5mg of klonopin. My dose right now on Mirapax is .125mg and I only take it once 2-3 hrs before bed. Should I continue with this medication? Is this spasm a common side effect in one who has not receieved this medication prior?

[SueJohnson]

Do not continue with pramipexole. Stop it while you easily can. Up to 70% of people of dopamine agonists like pramipexole and ropinirole will suffer from augmentation which believe me you do not want. When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Dopamine agonists used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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 and 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. 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." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. 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...

[SueJohnson]

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, 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.

[jdawg77 in reply to SueJohnson]

Hey Sue, thank you for the time in your response.

As of right now, the medications I have access to are both the pramipexole and the klonopin, and I cannot see my Dr. for at least another week. Would you suggest taking the pramipexole for this short duration until I can see her next week and request a change of medication? (Something to at least hold me over and prevent me from being sleep deprived and going for days without sleep.)

At that time, I will also request a full iron panel as per your recommendation.

[SueJohnson in reply to jdawg77]

For a week would be OK.

[Theonlypetied]

Hi there. My experience of Pram was that it was a miracle drug for me. I fought hard to be allowed to stay on it when another medical practitioner refused to give me repeat prescriptions. I eventually ‘won’, that is, until I very quickly needed ever increasing dose. I soon reached the maximum dose allowed and after a few months augmentation set in. RLS and PLMD went into overdrive! How naive I’d been as now I am having to wean off Pram and have been to hell and back. I’m still not there yet and it suck’s! IMHO stay the hell away from Pramipexole! Best of luck.

[jdawg77 in reply to Theonlypetied]

What did you use as a substitute? For me, it's less of the constant moving of the feet that keeps me awake, it is that my brain will not shut down or if I am about to doze off, I have a twitch/spasm/jolt.

[Theonlypetied in reply to jdawg77]

I’m still weaning off Pram. I’m down to 1 pill per day but I used to be in 6 per day. I have briefly tried Gabapentin, which turned me into a zombie and ropinerole which didn’t work. Pram was amazing until it stopped working and making things worse. My GP wants me to try Pregabalin once I’m off Pram.

[jdawg77 in reply to Theonlypetied]

I see. I'm very sorry you have to deal with this but at least you're down to 1 pill! Congratulations on the success and sympathies to any hardships that you have had. May I ask, if your symptoms are similar to mine? My insomnia is akin to a light switch not shutting off in the brain. Even if my body is fatigued, my brain will not turn off. Once it does, I run the risk of spasming/twitching whenever I am about to doze off. This ofc wakes me up fully.

[grassgree in reply to jdawg77]

How long ago was the surgery? I had this happen after surgery too, but it tapered off after a few weeks. It was some years ago and I don't remember what the doc prescribed. I could not sleep at all because relaxing my body triggered involuntary whole-body twitches (hypnic jerking). That is different from RLS, but both can occur. With RLS there is an urge to move, and some twitching, but with hypnic jerking the body flops like a rag doll, without muscle tension and without warning. I don't know what to advise you, but it sounds like your neurologist is trying different things, which is all he or she can do. The low dose of Mirapex shouldn't be a problem for a while, but don't increase it. Keep bugging the doctor. Hopefully things will settle.

[jdawg77 in reply to grassgree]

Hey Grass, thanks for your reply. I had a 7 hour surgery for my nose. On December 15th. Immediately like you, I could not sleep and also experienced hypnic jerks. My symptoms were definitely moreso of hypnic jerking and less so an urge to move. I was still as a rock. And I told my neuro this, but she still is adamant that it is RLS. As of right now, I am inclined to believe her, as late during the evenings now I do feel a tingling/burning in my feet that is relieved when my foot is moved. Mine still has not tapered off, but my sleep is up to 8-10 hours now thanks to Klonopin, an anti-seizure med. (I have no history with seizures, only hypnic jerks after the surgery like you.) At what week did your insomnia/hypnic jerks taper off? Do you know what the drug that your doc prescribed did? Also, were you aware you had RLS prior to the surgery?

[grassgree in reply to jdawg77]

The surgery was 30 years ago and unfortunately I don't know what drug was prescribed. The hypnic jerking got a bit better each day and wasn't a problem after two weeks. I've had RLS all my life but didn't know what it was at that time.

The definition of RLS is: A condition in which a person has a strong urge to move his or her legs in order to stop uncomfortable sensations. These include burning, itching, creeping, tugging, crawling, or pain. These feelings usually happen when a person is lying or sitting down, and are worse at night. They can also occur in other parts of the body.

At 25 years old, you'll want to avoid getting locked into a lifetime of drugs for RLS, which lose effectiveness over time. Symptoms of RLS ebb and wane, especially in younger people, and there is hope that things will improve on their own.

You can google any OTC drugs that you're taking, along with "RLS" to see if any of them are making the symptoms worse.

[Theonlypetied]

any insomnia, for me, is down to the ‘eebiejeebies’ in my legs. When I was on 6 Pram, I used to sleep for hours until augmentation set. Any spasms I get are at rest but random and occasional.