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Baclofen

Nicky NicolaNicky Nicola Member Posts: 8 Connected
in Cerebral Palsy
I've been on this for thirty years - 25ml a day
Does anyone have trouble sleeping?
when I increase the doseage I'm like a zombie !
any ideas 
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Replies

  • wilkowilko Member Posts: 2,200 Disability Gamechanger
    @Nicky Nicola, how are I take it that you have MS ? I am on Baclofen since my diagnosis 09-16. 10mg am and pm and 20mg at night, yes do suffer sleep problems but not to many spasms at night. Hope you keeping well my diagnosis was aged 61 so had to finish work unable to continue no work adaptations would of worked as I was farming. 
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  • Nicky NicolaNicky Nicola Member Posts: 8 Connected
    I have CP.  I thought this site is for CP conditions. Your MS, I think this is a totally different ball game 
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  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    I am on Baclofen for my Cerebral Palsy 10mg in the morning and 20mg at night. if I don't take my sleeping tablets as well I struggle t o get of to sleep and stay asleep.

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  • ColourfullColourfull Member Posts: 59 Courageous
    Hi to all,

    I also take baclofen for muscle spasms in my back and legs and stiffness do they help you sleep I have insomnia too really annoying I feel asleep after my hosp assesment for removal of my neuromodulator in about 3 weeks.

    Colourfull.
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  • Nicky NicolaNicky Nicola Member Posts: 8 Connected
    So I ain't imagining not sleeping!!!
    i was seen last week by Dr Stephenson in the Spasticity Clinic at RLHIM, in Great Ormond Street and when I made the suggestion that the Baclofen was keeping me awake she became verbally argumentative.
    I was referred to her by my other consultant at Stanmore and offensively she asked me 'what do I want from her?'
    I'm no bloody doctor...
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  • Richard_ScopeRichard_Scope Community Team Posts: 2,623 Scope community team
    Hi @Nicky Nicola
    Baclofen can have a side effect of sleeplessness. I would discuss this with my G.P. in the first instance. Were you given any potential solutions by the consultant at the Spasticity Clinic at all?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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  • Nicky NicolaNicky Nicola Member Posts: 8 Connected
    None she was offensive and suggested I increase the dose.  I was on 10ml in morning and 15 at night.  She suggested I increase to to 10ml morning, 10ml afternoon and 20ml nights 
    I'll try it again but, from previous experience taking a higher dose tires me.  I work and drive so I can't risk being tired.
    The top **** from the spasticity clinic at RLHIM - she tries you on the obvious medication and where complications arise she does not want to know!!!  She does not want to explore 
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  • Richard_ScopeRichard_Scope Community Team Posts: 2,623 Scope community team
    @Nicky Nicola
    That is really disappointing to read but unfortunately not uncommon. I have had similar experiences, not with Baclofen but with other issues related to my CP. I would have a chat with your G.P. at the very least, so they are up to speed with where you are at in terms of the sleeplessness. Also, make it clear that you received a less than satisfactory response from the consultant. Stay in touch and let us know how you get on.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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  • MarkinsuttonMarkinsutton Member Posts: 83 Pioneering
    @Nicky Nicola I am on 10mg in the morning and 20mg night it helps a little for me but my biggest problem despite having my meds in a blister pack I keep taken the wrong dose. Just had to come home from work as I wasn't feeling very good, when I have got home I found out that I taken tonights meds by mistake. Its difficult in the mornings as I never feel like I have had enough sleep and this is why I end up taking the wrong meds as I am still too tired in the mornings. hope you get some results I know a few of my friends have tried taking Baclofen and have not got on with it. Its seems to me its either a drug that works or the side effects are too much for people to lead a normal life.  
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  • Nicky NicolaNicky Nicola Member Posts: 8 Connected
    Speadincspeedincaesar said:
    @Nicky Nicola
    That is really disappointing to read but unfortunately not uncommon. I have had similar experiences, not with Baclofen but with other issues related to my CP. I would have a chat with your G.P. at the very least, so they are up to speed with where you are at in terms of the sleeplessness. Also, make it clear that you received a less than satisfactory response from the consultant. Stay in touch and let us know how you get on.
    speedincaesar said:
    @Nicky Nicola
    That is really disappointing to read but unfortunately not uncommon. I have had similar experiences, not with Baclofen but with other issues related to my CP. I would have a chat with your G.P. at the very least, so they are up to speed with where you are at in terms of the sleeplessness. Also, make it clear that you received a less than satisfactory response from the consultant. Stay in touch and let us know how you get on.
    speedincaesar said:
    @Nicky Nicola
    That is really disappointing to read but unfortunately not uncommon. I have had similar experiences, not with Baclofen but with other issues related to my CP. I would have a chat with your G.P. at the very least, so they are up to speed with where you are at in terms of the sleeplessness. Also, make it clear that you received a less than satisfactory response from the consultant. Stay in touch and let us know how you get on.

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  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @Nicky_Nicola

    Disruption of sleep patterns is a known potential side effect of baclofen: 

    https://www.rxlist.com/baclofen-side-effects-drug-center.htm

    Like @speedincaesar said it is disappointing that the Consultant isn't advising what might be possible to support you with this. No idea if it would be appropriate for you but I do know that some people who need the benefits of baclofen but struggle with side effects get fitted with a pump that delivers the dosage throughout the day and night, see:

    https://www.scope.org.uk/support/families/therapies/intracathal-baclofen

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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  • Leonie75Leonie75 Member Posts: 1 Listener
    I have cp, drive and work.  I have baclofen but avoid taking it because of tiredness when driving.  I would like to try taking it again, can anyone give any advice on when is besk to take it?
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  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @Leonie75, welcome to the community! Thanks for sharing your experiences. As we're not medical professionals, we cannot specifically advise on this, so it might be best to speak to your GP?
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  • Lucysam25Lucysam25 Member Posts: 35 Connected
    Nicky Nicola said:
    I've been on this for thirty years - 25ml a day
    Does anyone have trouble sleeping?
    when I increase the doseage I'm like a zombie !
    any ideas 
    I have been  on baclofen for just over 2year's I am supposed to take six but I only take 4 on a nite  if I take the amount of tabs I take it would be like a  zombie  
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  • Lucysam25Lucysam25 Member Posts: 35 Connected
    I take the baclofen at nite 2 in the morning as long as you don't  over does wither tablets you are on 
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