Anyone currently on Nuedexta?

[Trippy]

I take it in the morning. I have never noticed drowsiness or any side effects at all. Hope it helps you—it should!

 

[Finndoodle]

My husband has been taking Nuedexta since diagnosis of Bulbar onset ALS. The neurologist said he had the worst PBA he has ever seen.The laughing fits with switching to crying would last for hours leaving him feeling drained. Nuedexta has been a game changer! I guess the only side effect that make me a little sad, it seems to take away ALL his emotions now. He seems unaffected by everything, but I guess that is much better than what we experienced in the beginning !

 

[Serenity]

Thank you Finndoodle, and that is sad, but the lesser of 2 evils I guess . So sorry for you, and for your husband’s diagnosis.

I've just taken it 2 evenings so far now, so too early to tell for me yet, but reading through people's posts has me in tears and heart broken this morning. I am more worried for what this will do to my husband and my family. I am used to being the caregiver, and for the situation to be reversed now, I am not taking it very well. I have been trying to stay positive, but is tough.

One day at a time....

 

[csommers]

hi, serenity. how's it going on nuedexta? did it help with speaking, if you had any speaking issues? i read that's a possible secondary effect.

 

[csommers]

oh, i just noticed you are just now taking it. i mistakenly thought you've been on it since feb. hope it works well for you

 

[Serenity]

Hello csommers. Correct, just have been on it one week so far, and today starting it at twice a day ( first week was instructed to take just once a day ).

It has seemed to help my crying spells, which is awesome, but hasn't improved my speach yet. Really hoping that it does Will continue to post any further improvements.

Hope you have a good day !

 

[Serenity]

So, two weeks in now on the Nuedexta. Has definitely helped with my moods, and exaggerated laughter that was happening. I still cry once in a while, but can be expected with everything going on.

It has also given my tongue a bit better movement, and swallowing a bit easier, so that's awesome. No improvement yet on my speach unfortunately. Hoping possibly it could still happen. For now, just using my boogie board often, since my husband can't understand me ( he is hard of hearing also), and when I am around others.

Just need to figure out if there is any kind of device I could use to make phone calls. . .

SO, just wanted to send an update how it's going on it for others that might benefit. Thank you again to those who gave opinions on it. It has really helped me thusfar. My insurance only approved 3 months of it for now, so hopefully they will extend that, when the time comes.

Hope everyone is doing well this evening.

 

[BobbyRayC]

For phone calls the Speech Assistant app will do your phone talking for you.

 

[Serenity]

Thanks BobbyRay, I do have a speach assist app on my Samsung phone, that it will speak what I type, but is there one to use for making calls ?

 

[lgelb]

See if your phone supports Live Caption. It is the feature most similar to Live Speech on the iPhone.

Live Caption: Caption media & calls on your device - Android Accessibility Help

With a single tap, Live Caption automatically captions speech on your device. You can use it on media like videos, podcasts, phone calls, video calls, and audio messages. Important: Some of

support.google.com

 

[BobbyRayC]

It works on IOS as I just tested it again with my phone. I'm not sure if it works on android phones or not. Seems they have changed the setting from when I first set it up a couple years ago. Maybe they changed it when IOS updated. It's under 'Speech, Recordings and Sound - Phone call speech output'. Hopefully it's the same on android. I haven't actually used it yet as it hasn't quite been needed yet but I'm headed that way. Good luck.

 

[rhm1119]

I have been taking Nuedexta twice daily for a month. No side effecs. A positive effect for me is an increase in energy, activity and mood. Apathy is a symptom of ALS not often addressed. I actually didn't realize how much apathy I had until Nuedexta returned me to my almost normally active self. I hope you find it helpful too.

 

[Serenity]

Thanks Igelb & BobbyRay, I can't seem to find that on my phone, but I'll keep playing around with it.

And glad the Nuedexta has helped you as well rhm1119. It seems to have given me a little more motivation too, I think mainly because my emotions are better in control. Thank goodness for this medication, esp. since I did not do well on the antidepressants.

 

[BobbyRayC]

I should have been more clear - it's under the Speech Assistant settings.

 

[Serenity]

I am not finding that in my settings either, thanks though, much appreciated !