my story is simple. I’ve had restless leg, moderate to severe for almost 14 years, and I am looking for some more advice? Most of my time is spent on mirapex was increased dosage as you can see in my previous post. That made me have terrible withdrawals. Once my current doctor took me off the Mirapex, what I am now on is a Neupro patch of 3 mg Lyrica of 100 mg clonazepam 1.5 mg and with that said it’s difficult to be awake and alert the following day. So it makes me groggy. Can anyone out there give me some possible ideas on possibly replacing the clonazepam or getting off phone as a Pam I still control my restless leg? Currently, I am having those symptoms in both my legs at night below my knee I’ve had restless leg symptoms of a complete leg length below the knee length one leg at a time or both legs so I’m confused , I would appreciate anybody’s honest advice Thank you.
RLS Question : my story is simple. I... - Restless Legs Syn...
RLS Question
First off clonazepam has a half life of 40 hours so it is not surprising you are having trouble staying awake the next day. Unfortunately you cannot just stop it. You need to wean off it slowly. What are you using the clonazepam for? If it is to help you sleep you are better off with a shorter acting sleep aid like ambien or Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.
You are suffering augmentation from the neupro and need to come off it. Neupro which is ropinirole in a patch form along with mirapex and ropinirole are no longer the first-line treatment for RLS, gabapentin or pregabalin (lyrica) are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. 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.
To come off Neupro, ask your doctor for 1 mg patches and cut one of them in quarters. Reduce by by one quarter patch 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. But in the long run, you will be glad you came off it.
On the lyrica you can increase it to 150 mg but it is not going to help you much until you are off neupro for several weeks and your symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of lyrica daily." if you take calcium don't take it within 2 hours. 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 doesn'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.
SueJohnson has given you excellent advice. Follow it & don't let your doctors prescribe another dopamine agonist. Sadly, once you've augmented on one dopamine agonist, it's just a matter of time before it happens again.Experts will no longer prescribe these meds because augmentation is inevitable for the overwhelming majority.
I agree and my doc happens to be at Mayo????
Did they consider a low dose opioid or methadone or Buprenorphine? I'm stunned that a doctor at the Mayo would prescribe another DA when you had experienced such bad augmentation on Mirapex.Time for a new doctor. Dr Andy Berkowski does tele medicine, as does Dr Buchfuhrer.
yes she’s afraid of side affects
are these docs the best??
In my opinion, yes.Dr Buchfuhrer operates out of California. Dr Berkowski out of Ohio and Florida.
See Dr Berkowski's website. He does excellent webcasts.
Here in the UK, doctors are not up to date and there are only a few neurologists who know more than the basics.
Surprisingly not all Mayo doctors are familiar with the Mayo Algorithm.
As a patient of Dr. Buchfuhrer, the 2nd-listed author of the Mayo Algorithm, I am stunned to learn that. "Surprisingly" is right.
Hi I’ve had restless legs for over 20 yrs now ,they put me on clonazapan in the first place it was heaven to feel normal after nearly ready to commit suicide but it wasn’t very long and I was back to square one ,so I was put on pramipexel as well and was good for quite some time ,and then same old story so I was put on tramadol as well and ( touch wood ) have hardly had any more symptoms after awhile managed to cut my clonazapan down to half tab at night and was still good ,but when I tried to cut down to a quarter my legs started to twitch again so went back on a half and been stable on these 3 meds for over 3 years now ,hope there’s something in here that might help cheers Chrissy
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