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Tremors and baclofen

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    Tremors and baclofen

    Hi. Looking for advise re those on baclofen. My clonus/tremors in my legs are through the roof. Seriously getting worse.

    Can I ask what levels of baclofen everyone takes. My neuro upped it to 60mg but that was in June. My neuro appointment is not until December so I don't know whether ask g.p.
    Diagnosed May 2021 bulbar onset als.

    #2
    I now take 60mg per day, 3 x 20mg, but in previous years I took up to 100mg per day.

    Originally posted by shelly21 View Post
    My clonus/tremors in my legs are through the roof.
    Where in your legs is that happening Shelly, and is it constant or worse at certain times of the day?

    I wonder if it's more akin to restless legs syndrome (RLS) xx


    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      I'm on 15mg x 4 a day but I think 3 x 20 would help. Its definitely the clonus the doctor at spasticity clinic commented on.

      the only thing I've been doing is stretches that my partner does. My new wheelchair pad isn't great and its really bad when I sit in the wheelchair x
      Diagnosed May 2021 bulbar onset als.

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        #4
        Originally posted by shelly21 View Post
        the only thing I've been doing is stretches that my partner does. My new wheelchair pad isn't great and its really bad when I sit in the wheelchair
        Clonus can be triggered when a muscle is overstretched so, for example, if my wheelchair footrest is at the wrong angle, I'll get clonus in the ankle of that foot, meaning your theory about your seating position being responsible for some/all of your woes could very well be correct and you definitely need a proper seat cushion 😫
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Thank you so much Ellie. My husband rang them today re cushion and we go in next Tuesday. I waited 7 weeks for this one and I'm going to explain its not acceptable.

          Yes its my ankle doing all the shaking.
          X
          Diagnosed May 2021 bulbar onset als.

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            #6
            Hope you get it sorted shelly21, it shouldn't have to be an effort each time to get the right equipment. I dont know much about the physical side with Dads neing bulbar onset but he now seems to be getting tremors or twitches in his thighs and torso, another thing to try to figure out!

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              #7
              shelly21 For me at least, increasing the amount of Baclofen would have zero impact on those 'position induced' bouts of clonus.

              The best way to stop clonus in my ankle or wrist is to invoke more clonus in the joint as a Doctor would in a clinical exam, which cancels the first bout of clonus - sounds wrong but works for me.

              I am sticking pins in an effigy of your wheelchair assessor as we speak. I really hope that a proper seatin position solves your problem. There are heavy duty antiepileptic meds which can stop clonus but they can also zonk you to the point of being on a different planet. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                #8
                Ellie the cushion came after a 7 week wait. Man who said he was engineer turned up and put it on my chair. Straight away I said its less than half the depth of my previous one. He left.

                So the next day we called the wheelchair technician stating that I felt I needed the 10cm he said no.

                So a week later I'm actually feeling the metal base of my chair. My partner calls again to be told the man fitting the seat pad should have altered my foot plates and armrests! So I've got to wait another week to go in so he can see what's happening.

                Ellie these are the people who issued my a child's manual wheelchair.

                So I put a scathing review on Google re head office. Funny enough I was emailed by logistics manager and now they are dealing with the 8 different issues I've had.

                So its spears out not pins 😆
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  Originally posted by shelly21 View Post
                  I put a scathing review on Google re head office. Funny enough I was emailed by logistics manager and now they are dealing with the 8 different issues I've had
                  👏👏👏
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #10
                    Well done shelly21, shouldn't have to battle for the basics but well done for preserving x

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                      #11
                      Claireflo I have come close to breaking point by certain departments. I had to take emotion out of it. Helped enormously by some counselling.

                      Like you know, with your father that you have to dig your heels in x
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        Hopefully it will all be comfortable for you soon shelly21.

                        Can we all borrow you partner and your google review power?

                        Oh can I borrow some heels to dig in too?

                        Man who was meant to be putting bars around the house last week said he couldn't do it because he didn't know where the pipes were. He was also meant to be raising the sofa, but did one of those builders looks and went away without doing it too.

                        Ah happy days.

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                          #13
                          Christopher its pants!
                          the length of time to get these much needed aids and then incompetent people sent.

                          It drains me.
                          Diagnosed May 2021 bulbar onset als.

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                            #14
                            shelly21 hope everything is sorted for you now; how frustrating that you’ve had such poor service, especially as you’ve experienced discomfort with your new cushion. Well done 👏 for fighting back… even though you really shouldn’t have to xx

                            Christopher so it’s not just women who get the teeth-sucking, head shaking reactions from workmen then? On a serious note, I hope you get sorted with what you need soon, with the absence of theatrics from lazy people who can’t be a**ed doing their job xx
                            Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

                            Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

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