I’m about to make an appointment with my sleep specialist .
At present I am on .15 daily sifrol - I understand .5 is recommended as highest daily dose. This dose was prescribed by a neurologist who thought 1.5 was fine in fact I could increase it if needed. He mostly works with Parkinson’s patients. My sleep specialist was very uncomfortable about the high dose.
Whatever it has not been effective for RLS - I am still up most nights, and I have afternoon episodes every day. I also am fatigued and , have muscle weakness after minimal exertion, havefrequent lightheadedness and sometimes proper dizzy spells , am breathless and can only walk short distances. I cannot read as I once did because I fall asleep so often.And my memory is getting worse and some confusion.
In addition Iam on the antidepressant Effexor which I understand can react badly with Sifrol.
It seems to me that it highly probable that most of my problems are a result of these drugs.i am going to request to come off Sifrol and change my treatment . My GP mentioned Clonazepan as a possible alternative. What experience have people had with this drug? I would appreciate any advice about this problem including that of the Antidepressant impact.
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Possumcatcher
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I presume you mean you are on 1.5mg Sifrol? And you are in Australia? Can you complete your profile to show age, whereabouts as it helps us guide you.If you're on 1.5mg Sifrol, that is negligence on the part of your neurologist. Dr Winkelman has written an article about over prescription of dopamine agonists and Parkinson's doctors are the worst.
You'll need a new neurologist, so tell us where you are and a fellow Australian can guide you to a decent Doctor.
You need to come off Sifrol very, very slowly. By half a 0.125 pill every 2 weeks. Experts recommend taking a year to reduce when the dose is so high.
Effexor, like ALL anti depressants is known to trigger/worsen RLS. If you take it for depression, discuss safe alternatives ( trazodone and wellbutrin) and ask your doctor to monitor the switch.
Read all the posts from the last 2 or 3 weeks headed Pramipexole. You will see the advice is the same. Reduce the Sifrol and start a replacement medication ( pregabalin or gabapentin) around a month before you stop Sifrol.
And ensure your serum ferritin is raised above 200ųg/L as low brain iron is the main cause of RLS.
Yes 1.5 mg is 3 times the maximum. Plus you are experiencing augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
To come off sifrol , ask for .125 mg tablets and then reduce by half of a .125 tablet 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and sifrol are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off sifrol 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 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
It is going to be a long time before you need this information on gabapentin or pregabalin so I suggest you either bookmark this or copy it or ask for the information when you are closer to the time you need it.
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. 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, let us know and we can advise you further.
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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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. Keep a food diary to see if any food make your RLS worse.
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.
Effexor makes RLS worse for most. Wellbutrin and trazodone are the only 2 antidepressants that are safe for RLS.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
The one symptom that does not seem to be a result of sifrol nor augmentation is your breathlessness. I would get that checked out as it can affect your taking gabapentin/pregabalin or an opioid.
By the way although a sleep specialist can treat RLS, the better one is a neurologist although obviously not the one who prescribed sifrol. Where do you live? I or someone else on this forum might be able to recommend a doctor who is uptodate on RLS. Also who is your sleep specialist? I may be able to advise if s/he is uptodate. And to find out yourself you can ask if they follow the Mayo Clinic Algorithm.
Clonazepam can help restless leg syndrome. It is prescribed for anxiety, involuntary muscle spasms, epilepsy, panic disorder and sometimes restless leg syndrome. (Quote from NHS website).
Sertraline, a highly effective antidepressant can be used alongside Pregabalin. I take 75mg of sertraline in the morning and 300mg Pregabalin 2 hours before bedtime and 1mg Clonazepam as I go to sleep. This regime has given me a full nights’s sleep for the first time in my whole life. (I am 73) and relief from RLS for the first time, since I started suffering it as a child.
You are lucky. Sertraline makes RLS worse for many as it is a SSRI antidepressant,. I'm glad it works for you.
I'm aware that many people use clonazepam, but alone it does not help and that was what his/her doctor was suggesting. . "The efficiency has not been established and it should not be used to treat RLS symptoms" according to NightWalkers Fall 2021 which is the official magazine of the Restless Legs Foundation which includes many of the experts that wrote the Mayo Clinic Algorithm.
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