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Clonazapen Helping Breathing Weakness/Talking Strength?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Rossy191276, Jun 8, 2018.

  1. Rossy191276

    Rossy191276 Senior Member

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    This may be a longshot to find someone with a similar experience but I'll give it a shot. Has anyone with breathing/talking weakness or dysautonomia found that clonazapem helps these symptoms. I have found that for several hr after taking it it seems to improve breathing strength or if I have bowel movement it helps my recovery...

    I have seen people mention this on dysautonomia forums but not here
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting and I never had any improvement in breathing from Clonazapam. There were only three meds that ever (temporarily) improved my breathing: Midodrine, Norco, and Atarax (not all taken together of course)! Each one has a different mechanism of action and I had several different problems affecting my breathing. Now my breathing is basically normal from my ongoing treatments of IVIG and Rituximab b/c they improved the underlying issues (POTS, muscle weakness, and MCAS/allergic reactions).
     
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  3. Neunistiva

    Neunistiva Senior Member

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    What dosage are you taking? I think it's important to say because drugs have different effects at different dosages.

    I am taking 0.8mg per day, divided in 3 equal doses. For me clonazepam (Klonopin) only helps with breathing issues that are directly caused by neurological problems. So if I am out of breath or breathing quickly because I crashed, clonazepam will do nothing for it.
     
    Last edited: Jun 9, 2018
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  4. Rossy191276

    Rossy191276 Senior Member

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    Interesting @Gingergrrl... I didn't know you had tried clonazapem. Of the 3 you mention I have only taken midodrine which I had a really bad reaction to. I wish I could get access to IVIG to give it a go...
     
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  5. Rossy191276

    Rossy191276 Senior Member

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    Hi @Neunistiva.... I was on .5mg at bedtime for approximately a year and sometimes I would take up to 1mg if I was having more severe symptoms. After I read on some different sites the different experiences people were having with it and also about issues of dependence tolerance I decided I would try to start to lessen the dose while also trying it at different times of day to see what happened. So I have been reducing the dose and over about 3 months I now usually take about .4mg anywhere from once a day and I have gone as long as 3 days without taking.

    I was bedbound and unable to talk at all for about 4 months. I am still completely bedbound but in the last 2 months I have started to regain ability to talk up to a couple of minutes per day but my chest/breathing weakness tends to worsen throughout day. So I decided to try clonazapem in the late afternoon and straight away I noticed about an hour after taking and lasting several hr that I could take deeper breaths, hold my breath a little, talk more easily, etc. The other thing I notice is that if I take it about an hr before a bowel movement using bedside commode that I can often start using computer again almost immediately when previously I would often have to lie still for several hr and get all sorts of symptoms I assume to be ANS related. I would add that when I was in severe crash I probably was so weak all the time that I didn't notice these changes or I wasn't getting them because I was so sick.

    i now have no doubt that it is having a good effect for me but I am trying to figure out why. My heart rate doesn't change at all. When you say it helps with breathing neurological problems what is your idea in the specific mechanism-- I am trying to figure out if it is somehow increasing strength, or is it reducing some sort of restriction, or something else??
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I was prescribed Clonezapam for different things (even as a mast cell stabilizer at one point!) and the only thing for me where it was truly effective was when I had an insane startle reflex with muscle spasms that could last up to 48 hrs and we even wondered if I could have SPS (Stiff Person Syndrome) b/c of the anti GAD65 autoantibody. The Clonezepam was extremely helpful in those incidents but they 100% stopped from from IVIG and no longer happen. Now I just take it for insomnia as needed. And we do not think that I ever had SPS (although pre-IVIG, I definitely had some of the symptoms).

    I mentioned the other meds just in case they could be helpful and am sorry you had a bad reaction to Midodrine. In my case, we think the vasoconstriction helps bring more blood and oxygen to my core when I stand up which my doctors have called “preferential perfusion” (vs. it pooling in my feet or extremities) which helps with breathing. But Midodrine alone was not enough to make a huge dent in my breathing issues at the time (but I definitely felt better with it than without it). Sorry to go off-track re: other meds and I am hoping you figure out the mechanism that is helpful with the Clonezapam.
     
    Last edited: Jun 9, 2018
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  7. manasi12

    manasi12

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    Clonazepam will reduce hyperventilation. I guess hyperventilation causes the bronchoconstriction like asthama. Theoretically it will give better respiratory ability.
     
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  8. Rossy191276

    Rossy191276 Senior Member

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    Thanks for that @Gingergrrl. I didn’t know that clonazapem was also used for mast cells... and also for mentioning other meds I hadn’t heard of them.
     
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  9. Rossy191276

    Rossy191276 Senior Member

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    I am quite sure that I am not hyperventilating. My best guess is that it is somehow interacting with ANS since it is discussed quite commonly on dysautonomia forums
     
  10. Neunistiva

    Neunistiva Senior Member

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    I don't have the chest weakness symptoms so I can't help you there, however, I also had severe worsening of neurological symptoms from standing up, using a computer, or hearing music etc. Clonazepam definitely helps with that.

    My idea is that severe POTS triggers neurological symptoms and clonazepam is nervous system depressent so it helps there, but I am very confused how such two very different things like standing up and seeing movement on screen can lead to same type of neurological overload.

    My mother used to wrap my legs before I would stand up and that helped me make a few steps per day but now I am too sensitive to touch and too weak to walk. Maybe higher dose of clonazepam would help but, just like you, I am worried about dependance and so am keeping the dosage as low as possible to prevent delirium.

    I'm sorry I can't be of more help but I am as lost as you are.
     
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