Pistol Posted August 19, 2018 Report Share Posted August 19, 2018 I am considering trying baclofen for night time jaw clenching. During researching the use of this medication I found a comment stating it is not recommended for use in POTS. Does any one take Baclofen that has POTS or does anyone know why I should not take it? --- Any input is greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted August 19, 2018 Report Share Posted August 19, 2018 I have CIDP and take a baclofen for the muscle tightness in my feet. I’ve been on it for 6 years total, and have had POTS for 4 years. I’ve never had any problems. I’m on a low dose, 10 mg twice a day. Do you know why they said it wasn’t recommended in POTS? There was an initial groggy feeling when I first started it but it went away in time. This was before I had dizziness and lightheadedness from POTS, maybe it makes that worse? Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted August 19, 2018 Report Share Posted August 19, 2018 Although I still don't have official pots DX, managed a 50bpm increase to 150bpm on the TTT so that comes into pots (do have a dysautonomia DX from other tests) they are trying to DX the cause rather than the symptoms. I started baclofen low dose last year for leg contracture and general muscle hypertonia. Since then the dose has been increased to 70mg per day to try and control the problems. No one has ever questioned the use with pots, including the dysautonomic neurologist who did the TTT. They are more concerned with the muscle problems. You do need to taper on / off to prevent side effects. For me it helped straight away (noticeable improvement in a couple of days) but since then there has been a slow and relentless increase in dose to help the problems. For localised problems have you / they considered botox? They were going to use botox for me, until they started working out where they would need to inject and quickly went over max dosage. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 19, 2018 Author Report Share Posted August 19, 2018 Thank you very much for your replies. I am relieved that both of you tolerate baclofen - I feel good about trying it then. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted August 20, 2018 Report Share Posted August 20, 2018 My daughter has been on it for 2 years and has taken 20mg, 3x a day. It helped her tremors quite a bit, especially in the beginning. Hasn't ever seemed to affect her POTS at all. Quote Link to comment Share on other sites More sharing options...
JenD Posted November 7, 2020 Report Share Posted November 7, 2020 Baclofen can trigger onset or worsen dysautonomia. I believe Baclofen triggered the onset of my dysautonomia & POTS. My symptoms have improved a lot since stopping the Baclofen. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 7, 2020 Author Report Share Posted November 7, 2020 Thank you @JenD - I am glad you are doing better since stopping it. My doc recommended against trying it and I take Flexeril ( 1/2 tab ) a few nights a week instead with good results. Quote Link to comment Share on other sites More sharing options...
Demetri Posted March 16, 2023 Report Share Posted March 16, 2023 On 11/6/2020 at 8:18 PM, JenD said: Baclofen can trigger onset or worsen dysautonomia. I believe Baclofen triggered the onset of my dysautonomia & POTS. My symptoms have improved a lot since stopping the Baclofen. Valium does wonders for my POTS. I can only assume baclofen would do similar, being a similar gaba activating muscle relaxer. Quote Link to comment Share on other sites More sharing options...
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