Back and with a question about PBA
 

I was dx'd with PBA (pseudo bulbar affect) this past week but I have surmised for years now that I had it but couldn't seem to get through to my doctors that my occasional crying was not acceptable to me.

Well, this week during one of my bad episodes I happened to have an appt with my new neurologist and he asked me several questions about what happens before, during and after. He said the crying seems to be during inappropriate times. He has given me samples of Nuedexta(new drug on the market) to try and of course it is loaded with lots of possible side effects! How many drugs can you be on that can be rough on the liver and not get liver failure! But so far so good none of the other meds have destroyed my liver and hopefully this one won't either.

For those that don't know PBA is uncontrollable laughing or crying during inappropriate times. I would think laughing would be even more difficult but inappropriate crying has sure been embarrassing to me for years.

Keeping my fingers crossed that Nuedexta does the trick for me. For 1 week you only take 1/2 dose and then start on full dose if no adverse effects.

So...how have all of you been? good I hope!

Hi Sassy! Missed you but glad you're back. :hug:

So sorry about the PBA. That's got to be frustrating. I hope the new med works well for you. I'm sure others will be along who might have some insight into this.

Welcome back! :)

thanks Kitty, I did a search on here and was surprised only one hit on PBA.

I've heard of it associated with MS. I found this article about it.....http://www.healthcentral.com/multipl.../81066/crying/

"Avanir pharmaceuticals is looking into further studies of a medication called Zenvia, which is taken orally. This medication consists of a combination of dextromethorphan and quinidine. The FDA is requiring more studies be done before they would approve this drug in the United States."

Dextromethorphan is used in cough medicine...is it not?

when in flare I cry, which is weird because I am not a cry person. I can stand in the face of death and destruction and be calm and cool, yet put me in a flare and I cry at TV commericial or some white car that drove by. Easily irritated and quick to be emotional. It really bugs me that I cant control it. When the flare backs down so do those emotions. How do folks who are emotional deal with it? my ex MIL was like that. its exhausting!

I hope you feel better and the meds work. Nice to see you back again! :hug:

Hi Sassy glad you are back.:) So sorry for your new DX:( and I hope your new med does the trick with no bad sides.

What cha been up to?:hug:

Hi Sassy, so great to see you!!

I've not experienced PBA, but I think it would be very frustrating! I think the laughing side of it could be mortifying...and I'm guessing that those who experience the crying aspect have people saying, "Oh, everybody has crying spells."

I hope the med works for you and has no adverse effects. :hug:

i sassy, SO glad to see you're back. i missed you.
thanks for the explanation but i don't know anything about PBA.
i hope the medication works for you.

please stay in touch.

Thanks all!

@Blessings-yup, every doctor I ever saw knew about my crying spells but said there is nothing wrong with crying. Wrong! It is embarrassing, it kept me from expressing my true feelings, and it is difficult to even speak when you are crying as hard as I do. Try to explain to someone on the phone when you call about their services that ignore the crying it is just something I do when I am the LEAST bit emotional. grrrr...

@Kitty, thanks for the article. I was trying to find something written in laymen terms so I could print it and give to family, friends and co-volunteers. That article is perfect and the med they talk about at the end is what I am on but they called it by a different name.

Deijbo, maybe when you flare the brainstem or the part of the brain is affected that causes PBA and you have the symptoms for just during that time. Just keep it in mind and if it becomes a problem more often ask your dr. about it.

Thanks Blessing! The med does seem to be working, hard to believe something that has a cough syrup ingredient and basically quinine works and how the heck did they come up with those ingredients and PBA. Weird! But glad it's here for me.

@Sally, thnx for the welcome back. I have been busy volunteering for the Michigan Ch of the MS Society. I even got to go to DC and talk with our legislators about some things that are important to us with MS. I met FlyGirl while I was there (Cheryl). That was our first face to face meeting.

The MS has been treating me pretty mildly! But I guess the business of volunteering caught up with me and the PBA kicked into high gear. I am even co-facilitating a 6-week program on Fatigue right now and I don't have enough sense to listen to what I am teaching.

Thanks again all for your concern and even tho I don't get here often I think of you and wonder how you all are doing.

Sassy, Here's some additional information
 

PBS did a television documentary on PBA recently. If you do a search on google under
"pba healthy bodies healthy minds" you should be able to find a link to it.

The MS association, Stroke organization and Brain injury association all did recent surveys on this as well and have them posted on their respective websites. The MS survey in particular was very large and quite surprising.
Out of about 5200 people surveyed they found that 48% of them likely have PBA.

What these sources will show is that what is generally understood to be going on is that in all these illnesses and others as well, a type of lessions or scarring is taking place in the brain in the pathway controlling emotions.
And so, while many seem to brush it off as just being overly emotional, there's a real medical reason for this to be taking place. And, it's just been under diagnosed and written off for years because there was no effective treatment for it. Nuedexta does seem to help it for a great many patients though as you're experieincing yourself.

In any event, wanted to share that information with you and others.

Best of luck to you. :)