my restless leg battle

I'm 75 and have battled a severe case of restless leg syn. for thirty five years. At the present time I am controlling the symptoms with three 1.5 mg pramipexole tablets and one 100 mg gabapentin capsule at the same time at least three hrs. before I go t bed. If I forget to take them and the symptoms start the drugs won't help and its a nightmare for the next 10 to 12 hrs. About two years ago and before I started taking this drug cocktail I had an episode with the symptoms for seventy two contentious hrs. and on the verge of taking my own life, finally passed out from shear exhaustion. I'm supposed to take the pramipexole one 1.5 mg three times a day, but it does not work for me that way. My question to all is, am I doing harm to my self with this drug cocktail and if so I need some suggestions.

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  • For a start can I clarify - are you taking a total of 4.5mg of pramipexole daily? If so you are taking too much and it could very well be making things worse. Please take a look at this article on augmentation:

    sleepreviewmag.com/2015/02/...

    Also there are other drugs both prescribed and non-prescribed that can be used to bring relief. A good starting place to look at drugs is here:

    rlshelp.org

    &

    rls-uk.org/treatment/

    Also worth checking if you are taking any other medications like antihistamines and antidepressants which could be making things worse.

    Many here are getting relief from excluding things like sugar, sweeteners and some spices from their diets too.

    Finally there is the gentle iron which is helping many too.

    Rest assured you are in a great spot with many who understand and can help.

    Take care.

  • Raffs i think we were typing at almost the same time. :)

  • WOW! I have learned so very much from this post. I have had RLS for years, but have not learned as much info as you have provided. Your info substantiated much of what I have learned on my own from my personal experience. My new practitioner nurse recently decided to give me one higher dose of Ropinrole pill instead of the three smaller does I took at different times. The result was terrible: sleepless nights of continuous moving. On the third night, I figured out what it was. The initial dose was too high. I cut the pill in half and took them at different times. It worked! I have just discovered a new, unlikely product which is helping me tremendously. Unfortunately, it is not mailed outside of Canada and USA at this time, but I THINK an associate could mail them. The product is VoxxLife Wellness Socks. My chiropractor gave me a pair to try and test--we were both skeptical. They worked! in that I can RELAX when I sit and sleep. I have been able to cut my Ropinirole med in half. The socks are rather expensive--like medication--but I am so thankful I can get them.

  • Hi EEW, i am sorry to tell you that your dose of the Pramipexole is too much. The recommended dose these days from the RLS experts is no higher than just two pills at the lowest dose. Your dose maybe working right now, but at some time it will stop working and your RLS will become worse. its called Augmentation. What dose did you start off with when you first started to take Pramipexole. ? The experts say, if your RLS is not controlled by only a low dose of Pramipexole then you need to change to another type of med. There are many posts on the forum about members taking a dose way to high and they suffer with Augmentation because of it. If you put in the search box RLS and Augmentation it should show many of the posts.

  • I could never get on with Pramipexole. As others have written your dose is too high. Having said that my neurologist is about to put me on 2mg of Rotigotine plus 200mg of Tramulief and 2700 mg of Gabapentin!

  • I have exactly the same problem as you with regards to timing of meds I also need to take them at least 3 hours before sleeping. I now take them when I feed the dog at 5:30pm. If i don"t I can"t sit and watch any TV in te evening.

    I totally agree with raffs Elisse and martino . Seems like you are taking too much pramipexole. Do study the links raffs has provided you with. I was directed to the 1st one by the good people on this site and now have come off the drug I was augmenting on and have replaced it with something else.

  • I think that people trying to get off any RLS drugs should try one of the two elimination diets to methodically discover if they have any food allergies or intolerances.

    Search this site for FODMAP and low chemical diet or google the WWW generally. Try to stay with sites from respectable organisations. Monash University, Melbourne for FODMAP and Royal Prince Alfred Hospital, Sydney for the low chemical diet. Find a local dietician who knows about both diets and give them a try. You might find that its easier to get off the drugs if the RLS goes away. Be warned that the diets don't work for everyone but they do work for some. If you are healthy they are probably harmless - refer to your doctor and dietician to make sure your body is up to a restrictive diet. You might find your RLS is triggered by only one thing that is easy to avoid such as Lactose.

    It took about 12 weeks for the FODMAP diet to help me. This is apparently a long time as some others try it for a couple of days and don't have anymore RLS symptoms. The low chem diet is strange in that you feel worse for the first week and then you hope to be blessed with many full nights of sleep. I know the diets are not a cure but if you remove the trigger then it feels like a cure. It's changed my life.

    There is an app for the FODMAP diet available on the web.

    There is a book on the low chem diet with recipes but I think it is only available through your dietician.

    Give it a try and you might be lucky.

    Note that "healthy" food has nothing to do with your personal allergies or intolerances. Organic is not the key. Apples, pears, ripe bananas, milk, most cheese are all capable of spoiling your life but there are still things you can eat and enjoy.

    I have often said that if you need any help to let me know but I sometimes lose track of people asking questions and feel guilty, so please feel free to PM me (if you know how to send a personal message on this forum - I don't) or persist and remind me.

    Cheers

    Graham

  • For those of you who don't know: if you want to send someone a personal message, click on their username and then on "Message" on the top right.

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