Status
Not open for further replies.

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
City
Woodinville
I recently returned from a trip to Minnesota to see family & friends. The thought of traveling alone was a bit scary, but I decided it would be fine. After two weeks there, my friend (who I met on this forum and who has PLS) dropped me off at the airport. After saying goodbye and getting ready for my wheelchair assisted ride through the airport, I began to cry uncontrollably. I was of course sad to be leaving my family and friends, but not as sad as my emotions shouted out! It was so disturbing. I was sobbing through security, and all the way to my gate. People were asking me if I was sick and if I was okay. I just kept on sobbing and could not speak. Finally, I pulled myself together and had a good flight home.

The crying episodes continued after getting home so I emailed my nurse at my ALS Clinic and asked for help. My doctor had mentioned Nuedexta to me for the emotional lability, but I wasn't having it too often so did not want to try it at that time. I started the Nuedexta after 4 days of the crying, and after just a few pills, began to feel much better. I'm also taking Cymbalta (90 mg/day) so my doctor had me cut back to 60 mg/day while taking Nuedexta. I feel so much better now. I reached out to my local ALS/PLS support group family and they shared their experiences with the laughing/crying episodes. Most have experienced them. This part of the disease is so brutal and so hard to explain to people. I look forward to hearing your experiences. LouLou
 
Last edited:
Happens to me quite often when talking with people, mostly laughing more than the situation calls for. Crying sometimes too
 
Mine has always been crying, and after 4 days, the Nuedexta is working!

What are the side effects?
 
I find the most annoying for me is crying fits in the middle of non-emotional bits of books. The water gets in front of the words. ;)
 
LouLou
I have trouble with emotional issues , was so bad that I would be sitting at my desk just crying my eyes out. Tried Nuedexta but it drove my spasticity crazy, it really helped my EI the crying stopped, but what it did to my spasticity I had to stop using it. Use Amtripyline now, only side effect is it makes me tried, but so does most of the meds I’m on. I will add that it does not work as well as Nuedexta, but it does help.
Thanks for the comments on retirement.

Mike
 
Does anyone smile inappropriately or too much? It's exhausting and embarrassing.
 
So far the only side effect I'm feeling is a slightly sedated feeling, but in a good way. I have an Intrathecal Baclofen Pump, so maybe the spasticity will not increase as it did for Mike in Maine when he took Nuedexta. All I can say at this point is it has made me feel so much better. Sure did not want to take additional meds, but in this case it was much needed. We'll see how it goes. Maybe I can discontinue it after awhile. Thanks for your input. LouLou
 
Fortunately all my teary breakdowns have come when I was alone. I should quit missing my meds. And Maddy: that's the one symptom I can't quite get past. I get so embarrassed because of the big s-eating, inappropriate grin.
 
azwxman, thank you for replying to my rare post. I'm sorry for you, but I'm glad I'm not alone! :D The more I try to control it, the more I smile. Very creepy.
 
Yep, I recently asked for an rx because the crying chortling in a cinema while the audience was dead silent was ridiculous. For more than a year the laughing was the issue. That was awkward at times but tolerable. A goofy grin is typical of me on a normal day but more and more often I cover my mouth with my hand 'cause it doesn't always fit with the social environment.
The rx has sat here for more than a week... the crying period hit stongly for a couple of weeks and then passed. It will probably pop back for a visit but I'm loathe to hit the pills until it does. So tough to weigh the side effects out.
Late to this post but it popped up in my EL search. Pseudobulbar Affect fishing caught mostly Bulbar onset info. If there are any other insightful threads on this anyone knows of do share. For now I think Ill take the risk of snorting and blubbering. I too have had a hard time even signally to friends through laughs and tears that my face belied my true emotions, though most of them know by now to laugh along with me or hand me a tissue. Ha.
Thanks for this insight folks.
 
I went off the Nuedexta, then back on. I notice more shakiness. OTOH, I am no longer aspirating when drinking. That surprised my neuro. I still choke on my saliva. Mebbe I should go to full dosage of two per day.
 
I went off the Nuedexta, then back on. I notice more shakiness. OTOH, I am no longer aspirating when drinking. That surprised my neuro. I still choke on my saliva. Mebbe I should go to full dosage of two per day.

That is exactly what I get from Neudeta, I have a hard time tolerating it twice daily. I am about ready to try it again twice daily. It definitely is better for EL than antidepressants IMO.
 
Husband says it has helped a lot. His was crying uncontrollably over things only a tad bit sad. Yes...he grins a lot to. I'll ask him why he's grinning? He says " no reason...it's a symptom". I have to admit...I like the grinning.
 
It's now been a month since starting Nuedexta. I'm feeling much better and my swallowing seems to be better as well. I still cry at times but not like I did when I had the rough episodes last month. When I hear certain songs, it will come on but is controllable. Just looking at Christmas ornaments will make me weepy too. My nurse believes this is all part of the PLS, underlying depression, hormones, and LIFE. I think she's right. I've explained to my family what is happening and that I'm really not that sad about things that come up. I also will laugh really hard at times to the point where I have to compose myself as it gets hard to breathe. A few years ago I would wake up in the middle of the night laughing hysterically! That was the start of EL. Now I think it's best to stay on this drug. Good luck to others out there with EL.
 
I can't stand the shakiness that comes with Nuedexta. I'm going to quit it for awhile.
 
Status
Not open for further replies.
Back
Top