Can anyone advise me? I have had RLS for more than 30 years, familial predisposition. Been on Pramipexole for about 10 years - started with 0.088 mg. Over the years with the need to increase the dose - now 0.7 mg.
Sleeps only about 2 + 2 hours a night. Has severe restlessness in the legs, like a wasps' nest that has been disturbed. Also occasional restlessness in the arms.
Gabapentin has been tried without success. Amitriptyline as well - it was even less successful. None of them could take away the restlessness in the legs and just made me dizzy.
Now referred to a neurologist who has prescribed Pregabalin 75 mg, 1-2 tbl. evening. Was not told about e.g. tapering pramipexole.
So I took 75 mg Pregabalin the first night (the previous night only slept about 3 hours) - and did not close an eye all night due to constant restless legs. A little dizzy in the morning - but stayed awake all day until 21:00. Not slept for 40 hours.
Then took a quarter pramipexole + 1 Pregabatin on the 2nd evening and slept uninterrupted for 8 hours. Very dizzy and completely groggy all day.
Then 3rd evening took 2 Pregabatin (last night) - no pramipexole. Slept 7 hours. But is dizzy and groggy - creeps around and does not dare to go out for a walk when so dizzy.
Does anyone know if the dizziness will subside?
My ferritin is a little too low - not yet spoken to my neurologist about this (lab results just arrived). But even if iron therapy can help, surely treatment with Pregabatin will still cause dizziness?
I live in Denmark and not many doctors know much about RLS - not even neurologists. I'm 82 years old and every day is too precious to lose due to perhaps incorrect medical treatment of my RLS.
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Gibbel
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It looks like you have stopped an extremely high dose of Pramipexole cold turkey. And you are sleeping!
That is incredible. Most people on such a high dose of Pramipexole for 10 years suffer horrendous non stop withdrawal for at least a month. You seem to have only had 3 days of sleeplessness.
Normally I would advise a very slow withdrawal, but you've done it and are sleeping.
Keep on the pregabalin, but increase from 75mg to 150mg slowly by 25mg every few days.
The daytime dizziness is a common side effect and should settle after a few weeks. It does settle for most people after a few months.
Amitriptyline worsens RLS and is on the list of medicines to avoid.
Definitely get the full iron panel, morning, fasting blood tests. Raising serum ferritin above 100, preferably 200 resolves the majority of RLS and is now first line treatment.
Congratulations on getting off Pramipexole so quickly and with such fast results.
Wow - that is extremely low - even below normal. You probably have anemia and will need to get an iron infusion. And as Joolsg said improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
On the pregabalin it takes 3 weeks to be fully effective. I would wait until then to increase it since you are having side effects. 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 as the peak plasma level is 2 hours. As Joolsg said 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 200 to 300 mg of 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 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.
Ferritin; P10 – Hemoglobin; B 7,9 – Iron; P 9 – Transferrin; 37 – Transferrin dilution; P 0.12.
I receive the following medication:
Pradaxa 110 mg X 2 for atrial fibrillation (had a blood clot in the brain).
Lipistad 40 mg for high cholesterol
Metoprolol Succinate 12.5mg For Palpitations.
Panodil 665 mg 1 - 2 tbl. until the night.
Then I take Magnesium, D. vitamin, Calcium and Multivitamin.
I eat healthily, pay attention to foods containing iron, comply with all the good advice regarding Restless legs.
I doubt my neurologist knows enough about Restless Legs. He has just emailed me - that with iron supplements there are good chances that I will get better: "Buy some Krauterblut". And that's it.
It will take months before my iron will be o.k. I think he don`t understand how life is without sleep
Metoprolol is a beta blocker and they make RLS worse for most. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Lipistad contains atorvastatin a statin and all statins make RLS worse for most. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.If you take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL. Since you take pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL
Pradaxa is a blood thinner and is probably safe for RLS. However the problem with blood thinners is that iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron. This is why you should try to get an iron infusion even if you have to pay privately as that will be the best way to quickly bring your ferritin up and won't affect your blood thinner. Also the Floradix Kräuterblut has only 10 mg of elemental iron and you need 85 mg and probably more because of the blood thinner problem and that would affect your blood thinner.
Gibbel, I am 75 and had RLS since my 20's and just put up with it for years. About 15 years ago I finally talked to my doctor about it and was prescribed .125 dose of pramipexole and it worked. As time went by symtoms came back and my dosage was increased to .25 mg. Over time, the dosage was slowly increased to 1.0 mg, eight times my starting dose. Until I found this forum, I wasn't aware of iron being a factor. Next doctor visit I'll see about having my iron level checked. I was taking vitamin E without effect and was advised to take more and I did and it seemed to help. Salty foods and sweets seemed to make evenings worse for me. I have only discovered this forum a month or two ago and have been advised pramipexole is not the best answer so I probably will switch soon. Sue Johnson seems to have more knowledge about RLS than any doctor I have ever had. I take my pramipexole early evening and if I forget to take it and the RLS kicks in it takes about two hours of misery until it starts to ease up. If I take a 10 mg opiate it will go away in 15 minutes but I have a doctor that has caved in to government pressure and won't prescribe pain meds so I rarely have access to them.
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