Tuesday, June 21, 2016

als - pseudobulbar affect and a Rx worth looking into

I want to raise awareness of Pseudobulbar affect, because until six years ago I had never heard of it.

First, here is some condensed information straight from Wikipedia
(Oh admit it, you’ve used this site too.)

“Pseudobulbar affect (PBA) is a type of affect characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays PBA occurs secondary to a neurologic disorder or brain injury. Patients may find themselves crying uncontrollably at something that is only moderately sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example.

“In some patients, the emotional response is exaggerated in intensity… For example, a sad stimulus provokes a pathologically exaggerated weeping response instead of a sigh, which the patient normally would have exhibited in that particular.

“Patients report that their episodes are at best only partially amenable to voluntary control… they often have insight into their problem and judge their emotional display as inappropriate and out of character.

“Such sudden, frequent, extreme, uncontrollable emotional outbursts may lead to social withdrawal and interfere with activities of daily living, social and professional pursuits, and reduce overall healthcare. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn impairs their coping mechanisms.

“Pseudobulbar affect is a condition that occurs secondary to neurological disease or brain injury, and is thought to result from disruptions of neural networks that control the generation and regulation of motor output of emotions. PBA is most commonly observed in people with neurologic injuries such as:
traumatic brain injury (TBI)
multiple sclerosis (MS)
amyotrophic lateral sclerosis (ALS)
Parkinson's disease (PD)
Lyme disease  

“A study designed specifically to survey for prevalence found that 49% of patients with amyotrophic lateral sclerosis (ALS) also had PBA. "

I’m back.

I started experiencing this side effect.   For me, while it was not yet debilitating, it was increasingly frustrating to not be able to control my emotions as I had before.     I didn’t know why things were funnier or sadder than they ought to be.   There were times where I would be crying and in my head I was thinking, “What is going on?  This isn’t THAT sad, I have got to get a grip on things.”  I could reason out the situation as it was happening, but I was unable to control it.

In relaying this to my doctor he told me about pseudobulbar affect and recommended that I try Neudexta.

Within a week of going on Neudexta I began to feel more in control and it was such a relief.

Neudexta comes a pill form and is pricey and I have since switched to Dextromethorphan/quinidine which has the same ingredients but it is a fraction of the cost. It is mixed at a compounding pharmacy.