Nudexta & PBA

[Kristina1]

I've been on Nudexta for 2 months now. I was under the impression that it would eliminate PBA. But I'm finding that while it reduces the frequency of episodes, it hasn't eliminated them. I do think it is helping me fight for control- before Nudexta I would fight to try and regain control and always lose, now I fight and usually eventually manage to wrestle control back and stop laughing/crying. But I had thought from reading articles that it would make the PBA go away altogether while I'm on it and that is definitely not the case.

Has anyone else had this experience?

 

[KW1234]

I found it stopped my crying episodes but not my laughing or goofy smile. I had to stop taking it though as my liver enzymes spiked

 

[Kristina1]

Interesting- my main problem is with laughing (and I get the goofy smile too). Where crying comes in for me is that my laughing episodes sometimes turn straight into crying. It's weird. I feel like the medicine is helping some, but if my laughter is triggered naturally (like in response to something legitimately funny) it still goes out of control and then I can't stop it and then finally it turns into crying and shortly after I can finally wrestle control back and get ahold of myself.

 

[bigmark1954]

Don't tell anybody but I am a crier. I have been on Neudexta for 3.5 years. At first it helped with my EL and with secretions (salvia).

Now days I don't think I get much out of it and am considering weaning my self off of it because it does not help with my EL. I also think it makes me feel foggy. My insurance puts it in a Tier 3 category, so it costs me 200 bucks a month. It is kinda funny, I pay 5 bucks per month for Rilusole and it is a more expense drug.

My EL is triggered by sadness and happiness, I don't just cry for sh!ts and giggles.
There is an inherent sadness associated with ALS, I often cry when I see people who are happy and joyfull, or general things that are sad.

darkness every day...............................

 

[madducky9]

My mom stopped taking it two months ago after taking it for 6 months. I haven't noticed a difference, but obviously it is different for everyone.