I am 81 and I have had evening and nighttime RLS since having both hips replaced twelve years ago. My GP tells me it’s due to nerve damage during surgery and very common. I never asked for help until last August, thinking none was available. Did anyone see a tv documentary about RLS a few years ago? These were people who had relentless RLS, and I remember thinking if there’s no help for them, there can’t be any cure for this and I must just put up with it. Even in my sleep my husband said my leg jumped every15 seconds. Evenings watching TV were miserable, standing up more than I sat. Looking after my poor husband during his cancer treatment was wearing me out and I asked my doctor for help. She prescribed Pramipexole 0.088 and the calming effect was instant. We both thought I was cured! However, augmentation kicked in and as I did not want a higher dose I decided to try Thermapulse. Up until now, a combination of using my little Thermapulse gadgets strapped to my leg has kept me reasonably comfortable and I cannot recommend Thermapulse too highly. It isn’t a cure but it is a distraction and can be worn in bed. I don’t think Pramipexole is doing anything for me now other than prolonging the agony and I’m going to ask my doctor to help me come off it. A doctor friend has said don’t take Gabapentin. He recommends a benzodiazepine such as Clonazepam. Has anyone tried this drug? I’d be very grateful for advice re Clonazepam.
Harlequin 88: I am 81 and I have had... - Restless Legs Syn...
Harlequin 88
I'm glad Therapulse is a distraction for you. It's a great shame that you were put on Pramipexole. RLS UK now follows the Mayo algorithm, and gabapentin and pregabalin are now the preferred medications AFTER iron treatment.First, you need to get a full panel fasting blood test in the morning. Your GP should have done this and treated you with iron supplements or infusions before prescribing medications.
Hip replacements can lead to a great loss of blood and therefore iron.
Raising serum ferritin above 100, preferably 200 relieves the majority of RLS cases.
In your case it may also help reduce the severe RLS you are experiencing on Pramipexole.
Gabapentin can cause dizziness and loss of balance and that's why many GPs don't like to prescribe it for older patients. However, many older patients do well on gabapentin. Clonazepam has a similar effect. Also, Clonazepam does tend to lose effectiveness more than gabapentin or opioids.
I suggest you arrange blood tests, increase your serum ferritin, start reducing Pramipexole slowly by half a 0.088 pill every 2 weeks and start gabapentin and increase by 100mg pills up to 1200mg. The side effects of gabapentin reduce after the first 2 months.
If gabapentin doesn't settle the RLS or the side effects are intolerable, you can ask for a low dose opioid.
It's also quite possible that if you were on opioid painkillers after the operations, that you would have experienced withdrawal symptoms from that. The main symptom being RLS.
However ,that is all trumped now by your being given Pramipexol innapropriately.
The above advices are important to follow.
Good luck.
I agree with Joolsg. Just to continue with what she has said. You need to stop taking any iron tablets or multivitamins 48 hours before the full panel iron test. Afterwards be sure to ask your doctor what your ferritin is and don't accept his/her saying it is normal because what is normal for others is not normal for those of us with RLS. post on the forum what it is and we can give you further advice.
Clonazepam mainly helps you sleep but it has a long half life of 40 hours and can cause next day drowsiness.
On reducing the pramipexole 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.
On the gabapentin you could start it now, but it takes 3 weeks to be fully effective so don't increase it until then and it also won't be fully effective until you are off pramipexole for several weeks. Then increase by 100 mg every couple of days. I would stop at 900 mg until you have been off pramipexole for several weeks and symptoms have settled. After that you can continue increasing every couple of days until you find the dose that works for you. Take it 1-2 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.Most of the side effects of gabapentin or 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. If you take magnesium take it at least 3 hours before or after taking gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."
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...
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.
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.
Sue, following thyroid cancer fifteen years ago, I take levothyroxine; candesartan for BP; Lansoprazole 15 for reflux; amitriptylene for arthritis in my neck. I take B12, vit D and drink decaf tea and coffee. Have sent for liquid magnesium malate and glycinate - which has just arrived. I do find that a thirty minute walk earlier in the day can help to lessen the severity when it kicks off around 8pm in the evening (so long as I stay on my feet till sevenish.) Thank you for that list. Alcohol is a prime trigger for me.
Lansoprazole is a proton pump inhibitor and RLS. RLS-UK says most proton pump Inhibitors worsen RLS. Gaviscon Extra Strength Tablets and Liquids are safe for RLS. Amitriptyline is a tricyclic antidepressant that is also used in low doses for pain as you are using it for arthritis. Unfortunately it is known for make RLS worse. Hydroxychloroquine (Plaquenil) - treats arthritis - may even help RLS. Unfortunately all thyroid medicines make RLS worse. The others are fine.
hi harlequin 88 i also take levothyroxine, i dont have a thyroid gland i take irbesartan for B/P im withdrawing from pramipexole so have cut my pill into 1/4s i take 3/4s at the moment and 75mg of lyrica my RLs are terrible and nites without sleep are 4 out of 5.excess of sugar brings them on, eating late, gluten then some nights my legs are ok but my arms jump i am taking it slow coming off dopamines my doc wont give me anything except pregabalin i wish you luck and pain free nites soon xx
I have no thyroid either. Last night I didn’t take amitryptilene and this morning left out the proton pump inhibitor., just to see if that makes any difference. I tried my first night without pramipexole and had little sleep. Yes, my arms join in the fun too. Because I’m going away for a few days, I’ve decided now isn’t the time to stop pramipexole. With my Therapulse gadgets I’ll keep going to the end of the month, then make serious effort to get off this medication. Am so tempted by that patient’s account of discovering that CBD is the answer. Wonder if anyone else is considering discussing referral to that clinic with their doctor?
hi i dont know if any one is ...I got some thing called Reset from a chemist near me i took it to my doc because it said its a blend of terpenes in cannabis sativa oil she said yes its cannabis.. its to help me sleep but it doesnt and its no good for RLs either well lets say not for mine anyway xx
Don't be afraid of gabapentin. It has helped many on this forum including me. I am 82 and take 1500 mg. I have slight dizziness when I wake up but drink coffee immediately and it goes away. And if you do find it has side effects you can't stand you can always come off it by reducing it very slowly and by doing that you won't have any side effects.
I will bear that in mind. Thank you.
That is interesting. I was advised that gabapentin can play with your mind. I am recently bereaved and my emotions are all over the place as it is.
It's a possible side effect but not a common one.
Good to know - thank you, Sue
Sue, as an experiment, three days ago I stopped taking both Lansoprazole and amitriptylene. Since then - nothing! No RLS at all. Not one twinge. Have not needed my Therapulse devices.
I would be most grateful for your advice re gradually coming off Pramipexole. If I can stop the Pramipexole and still have no symptoms, it will be astounding. Am still not brave enough to risk the final test - a glass of wine
That's great. To come off pramipexole, reduce by .088 mg 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.
thank you, Sue - but that is the dose I currently take. One 0.088 every evening around 9pm. Would every other day be appropriate? I have a small supply of codeine left over from knee surgery which might help get me through.
No that is not a good idea. You could get a pill cutter and cut it in half and reduce by half every 2 weeks. That would spread out the probable severe withdrawal you will get.
This is going to be an ordeal, I can see. But it must be done. Thank you once again, Sue, for your guidance.
RLS back this evening. So disappointing.
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