Page 1 of 4 123 ... LastLast
Results 1 to 10 of 39

Thread: Frieda

  1. #1
    Forum Member
    Join Date
    Mar 2019
    Posts
    11

    Frieda

    I was diagnosed with mnd/ALS in August this year. I was given Baclofen to stop muscles seizing up. Worked well but on day 3 I had violent diarrhea, which lasted for 3 days and I stopped them. Now I have been given Clonazepam - reading the leaflet, it terrifies me. Also it seems to deal with anxiety rather than muscle spasms... Does anyone have experience of this tablet?

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,496
    Hi Frieda and a warm welcome to the Forum.

    Sorry Baclofen didn't agree with you.

    TBH, I'd try Tizanidine before Clonazepam, if I were you - Clonazepam can make you zombie-like, which may be good at bedtime, but obvs not great for daytime.

    I currently take both Baclofen and Tizanidine and took Clonazepam for 2 days before ditching it!!

    Can I ask what dose of Baclofen you were taking?

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,932
    Hi Frieda and welcome to the forum;

    Sorry to hear of your recent diagnoses. It is quite unusual to have a reaction with Baclofen and wonder how much of it you were taking. It's often best to start off with drugs slowly and build the amount taken up gradually over two or three weeks, so your body gets used to it.

    Don't know anything about Clonazepam but if you put it in the search box at the top right of the page, you will find a number of threads mentioning it.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    695
    Hi Frieda and welcome to the forum no-one wants to need.

    Sorry youíve been diagnosed with this horrid disease. I hope youíre getting good support from family and friends, but also from your medical teams.

    Are you certain the diarrhoea was caused by the Baclofen? Do you think you would consider trying it again?
    Dina

    Trying to keep positive, but not always managing.

  5. #5
    Forum Member
    Join Date
    Feb 2019
    Posts
    244
    Hi Frieda, and a warm welcome to this very friendly forum. I am sure you will find lots of advice and support on here.
    Best wishes Sheila

  6. #6
    Forum Member
    Join Date
    Mar 2019
    Posts
    11
    Thank you all, maybe I'll try Baclofen again, I don't remember what strength I had. I was so distressed by the diarrhea, having accidents etc I threw them away...

  7. #7
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,932
    Try less of them, Frieda;

    I Think that they're normally 10mg size, and they quite often recommend two in the morning and night. If that's the case, try one morning and night for 4 days and then take two at night for another few days. If all well increase to prescribed amount.

    Good luck, Terry

  8. #8
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,371
    Hi Frieda and welcome.

    I find baclofen helps me and I take 10mg at night. Most medications have side effects and if you study the leaflet we would not take any. As has been suggested try to build up and good luck with finding relief from those dreadful muscle seizures.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  9. #9
    Forum Member
    Join Date
    Mar 2019
    Posts
    11
    Thank you, I'll try building up slowly. I am always suspicious of pharma and maybe read leaflets to closely...

  10. #10
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,496
    Frieda, there is nothing wrong with reading all about the meds you're putting into your body !!

    I think it's wise to do that - start slowly and increase dose after 3 or so days. The recommended starting dose for Baclofen is 5mg at a time.

    But you do need to know what dose the doctor prescribed and how many times per day.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •