Severe RLS, med works only at night

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I take Pramipexole 1 mg every evening.  I’ve had RLS since being pregnant with my daughter 27 years ago.  I’ve taken the med for quite some time, but have been suffering for the last five or more years with symptoms during the day.  Sitting or relaxing is almost unbearable.  Flying is now painful and embarrassing.  I was told many years ago by the prescribing Dr that 1 mg daily is the max dose for non-Parkinson’s use.  I’m truly at my wits end.    Can someone help me?  Thanks!

Jackie

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  • Posted

    Hi Jackie,

    I know all to well what your feeling i was similar on 1mg pramapexole for some time then i started to have it during day, my dr did up the dose it worked for a time but has many side effects that are not worth it.

    So to cut a long story short i really suggest you make an appointment with a neurologist who will work best with you to find something that works to relieve the symptoms he/she are the best to consult on the matter not saying your dr. is not but some aren’t really in the knowledge of RLS that was my experience.

    I met with neurologist and we tried many options he recommended i come of the Pramapexole, it’s a lot of trial and error to find right meds to suit i know it won’t completely relieve symptoms but bearable.

    If you need any info on medications I’ve tried and any of the side effects of any you only need to ask me, but make that appointment as soon as you can there will be a waiting list I’m sure.

    Good luck

    Frankie

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    • Posted

      Thanks so much for the info, Frankie!  My thought was a neurologist for the next step, too.  What side effects did you experience on Pramipexole?  I’m amazed at all the people on this forum that take higher doses of this med when I was told one mg is the highest dose for non-Parkinson’s.  People are also on other meds that they take throughout the day!  I fly often - short stints - but I suffer from take off to landing.  Most movies and shows I spend standing in the back of the theater, but am completely exhausted when they end.  I really thought it was my mind doing this, so I never really pushed or pursued.  This last flight on Saturday was the straw that broke the camel’s back.  I will consult with a neurologist and thank you so much for making me realize it’s not in my head!

      Jackie

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  • Posted

    Sounds pretty awful Jackie, I started with RLS 10 years ago (aged 60!) on a long hail flight to Australia - wondered what was happening to my legs. Spent half the journey walking up and down the plane. I was put on pramipexole 0.08mg - now up to 0.27mg - I hope I never get to 1mg, but it looks like I will, eventually.

    Some good advice from Frankie, which I think we should all consider.

    Take care and I hope you find relief soon.

    Norman

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    • Posted

      Thanks so much, Norman!  I’m just amazed at how many of us are suffering so badly with this condition!  I thought it was all in my head!  I will pursue with a neurologist as I have several upcoming flights I’m really dreading.  Wishing you peaceful legs!

      Jackie

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  • Posted

    Hi jxkrus5

    I have had severe RLS for more than 30 years.  I am currently 64 and my RLS also started with a pregnancy.  Your story is identical to mine.  Pramipexole, although a great and effective drug to relieve symptoms of RLS, will over time augment the disease (make it worse) so that you experience daytime symptoms and are basically miserable all the time -- exactly your experience.  You will need to come off of Pramipexole, but you need to do it slowly, very slowly.  Coming off of Pramipexole was a nightmare for me.  I didn't do it with a doctor's help and I wish I would have.  My experience with medical doctors (and my husband and son are both doctors) is that as a whole they are uninformed and untrained to treat patients with RLS.  That's why forums such as this are good.  Those of us who suffer with this horrible syndrome can relate with each other and tell their personal stories and also share how they are coping.  All medications will over time lose their efficacy.  You have to increase and increase your dosage until you reach the max dosage and have to change drugs.  Sad but true.  I currently take Lyrica (this is a miracle drug as far as I am concerned as it has taken away all of my daytime symptoms and I can ride in a car all day -- something I haven't been able to do for a long long time).  And Lyrica will not augment RLS.  And you don't have to keep increasing the dosage.  BUT it doesn't help with sleep or with middle of the night symptoms.  I currently take Temazapam to get to sleep.  Then, four or so hours later, when I am jolted awake and miserable with RLS, I have discovered CBD oil relieves my symptoms and allows me to get back to sleep.  I am so very hopeful about CBD oil. It is ingested orally.  Research it.  I get mine from CBD+ Plus.  I get the large 10mg tube ( the green is less expensive than the gold, but the gold provides more CBD per dose.  Both work well for me.)  It is not a cure, but it currently works for me and I can't sing the praises of it enough.  CBD is from the hemp plant, but it has had the THC properties removed (the property that provides psychogenic effects and makes it illegal in most states) and it is legal in all states.  I take 30-40 mg of actual CBD per dose.  Am hoping this is a long-term coping measure for me.  Blessings to you on your journey.  

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    • Posted

      Can’t thank you enough for all of this wonderful information, Laura!  I think my next step will be with a neurologist because I have so many medication allergies.? But, at least now I can go armed with tons of information!  Thank you again for your help!

      Jackie

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    • Posted

      As Jackie says, lots of very useful information. I'm just a bit intrigued as to why you can't take Lyrica again before you go to bed, as it seems to last through the day.

      Regards Norm

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    • Posted

      Hi Norm

      I’ve also been baffled about why Lyrica isn’t effective for my middle of the night symptoms. I only take it at bedtime. And like I said before it helps me tremendously when I am awake during the day. My husband and I are traveling a lot nowadays and I know it’s the Lyrica that allows me car travel. If anyone could provide a reason to our question I also would be appreciative!

      Blessings!

      Laura

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  • Posted

    I have suffered since 1994 . About 4 years ago a friend said I should see the doctor about some 24 hour patches which were available for restless legs. The patches are Nero transdermal patch Rotigotine. I started on a low dose but quickly went onto the higher dose. (3mg) . I have no side effects other than the patches Burn my skin but I can put up with that ! They have literally changed my life.

    I can now go to the theatre, , go out for dinner, go on an aeroplane and all the normal things we do and take for granted.  Prior to getting the patches I was becoming suicidal - they actually saved my life. I also take I cocodomol on a night. I know that not everything works for everybody but do try them- they might make your life normal ad they have for me

    Good luck and please post how you get on with them

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  • Posted

    Pramipexole, Ropinorole and Neupro patch are dopamine agonists and when they stop working (Tolerance), GP’s often mistakenly increase the dose. Augmentation often results, RLS starts earlier in the day and symptoms spread to arms, hands etc. It is then necessary to come off the drug slowly with GP help and using a drug such as Tramadol (an opioid). Gaba’s are another useful RLS drug eg Gabapentin and opioids can be used as an effective treatment for long periods without Augmenting. It is best to use the minimum amount of drugs that you can and to keep a diary to try and find your triggers. Caffeine, alcohol in quantity, spicy food, sugary foods, even potatoes can be triggers. My Neuro told me to read up, google and join RLS groups to educate myself and become my own expert! Good luck.
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