Really bad night

The pains that shoot through are driving me mad. God I hate RLS. I'm near the limit of my endurance. All I can do is try to stay active so the jumps don't come so much.

Did quite a bit in the garden today, maybe that's to blame. I would do almost anything to be rid of this.

Have, in the past, tried drinking, dihydrocodeine, iboprofrofen, inflicting pain, nothing works.

If only the doctors had any idea what we go through.

12 Replies

  • Saw my Doctor last week as my RLS was very bad and they upped my Pramixole from 0.035 to 35 and they are working, no pain for over a week.

  • That's an enormous increase in dose, i.e. 1000 times bigger. Also have you seen all the stuff on HU about withdrawal symptoms when stopping Pramipexole. Do a HU search for DAWS.

    Still, if a 1000 times bigger dose is what is needed to get some sleep then so be it.

    When I was taking 3.18mg per day I was told that I was on maximum allowed dose.

  • Unfortunately people dont seem to read what others have posted about the dopamine agonists and augmentation. It has been talked about many many times, especially recently so all the information is on here. :(

  • Pete obviously the dose has not been increased by x one thousand ! It is a misprint

  • How are you doing Pippin,are you going back on patches and how's the toe,still doing good on Tramodol slow release I don't ever want augmentation ever again it's so easy for the doc to just put our medication up not knowing the end results xx

  • Hi Beady, no not back on patches am on ropinerole and it doesn't suit me at all.Felt unwell all the time I have been on it although it works for my legs.Going to see Neurologist tomorrow so watch this space! Toe is ok thanks.Glad you are doing well love xx

  • A couple or so years ago I remember having a discussion with some folk on this forum who were saying they had been prescribed 0.088Micrograms (not milligrams but micrograms 1,000,000 of a gram. I was persuaded that the smallest dose was indeed 0.088micrograms. This is slightly confusing. However if the smallest dose is 0.088micrograms then if not a typo it might very well be a genuine figure of something like 1000 x the original dose.

    As I have already said his is a little confusing but Blokie's dose going from 0.035 to 35 is a gargantuan amount.

    Perhaps we could ask Blokie? Blokie what were your dosages before visiting the doctor and after ?

    My latest search on the interweb has failed to find Pramipexole tablets at the diminutive dose of 0.088micrograms. I remember finding examples from a couple of years ago so I don't know what happened there?

  • Maximum allowable dose of Pramipexole in Oregon is 1 mg QID. I boost that by adding two Cheleated Multimineral tablets for MG Citrate, and Iron. That works. Messes me up mentally. Will fall asleep in my Power chair. This, my friends, isn't a facimile of life

  • Hi there blokie,just be carefull of increasing your tabs the augmentation I had from taking to many was the most awful thing I have ever been through the pain was indiscribable ,I don't think doctors know about augmentation when I said to my doc about it she said I was getting very scientific that's because she didn't know what I was on about. Didn't you used to be on Tramodol if so what happened. Xx

  • Hi Beady, thanks for reply, still on Tramadol for pain in hips. Taking Pramixapol for RLS sometimes 2 a day seems to be working. Hope you keeping OK.

  • Hardy, there are many other med options which can help with RLS. Drinking will for most make it worse. Look at the RLS-UK website or for other meds available to treat RLS. Its all trial and error when trying to find what will works for us. What med works for one person can be another person's nightmare. Keep going and i hope you come back to tell us you are now getting relief and sleeping. Also, make sure you are not taking any OTC med or med from your doctor which can make things worse. Have you had a ferritin level test done by your doctor, you may be one who might benefit from iron pills, but see your doctor and discuss this, dont just go and take iron pills, too much iron can be dangerous. Ferritin level or us RLSers needs to be 70-100.

  • Have you ever tried a hand held electric massager? It needs to be a very robust heavy one , the sort professionals would use, but I find when the terrible sensations of RLS wakes me in the night if I use the massager while still in bed it eases it to the point where I can get off to sleep again. I take two Tramadol during the evening, 20mgs of Temazapam and 2 soluble co-codomol before I go to bed. Having the massager means I don't have to constantly get out of bed and kick and walk around the room like I used to have to. Anyway perhaps it's worth a try. Wishing you all the best.xx

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