Emotional lability -- how does it start?

[SavoringLife]

Hi there,

I've read about emotional lability as a symptom of ALS, and I'm curious as to how it starts? For example, does it start full-force or come on more gradually? Does it start in the early stages of the disease, or primarily with the more advanced stages? How can I specifically identify it? Are there any effective medications to help control it?

My husband was recently diagnosed with bulbar ALS and I'm wondering if some of his anger and outbursts/agitation can be attributed to EL starting. He is carrying around a great deal of anger (which is understandable) as he comes to accept this diagnosed and lately he seems to get overly agitated by what seems like a small thing. For example today, I asked him for a phone number and he became very irritated by the question.

How can I best help my husband in this situation? I love him more than anything, and feel so helpless -- I only want to make things easy for him as we deal with this together and certainly don't want to contribute to his agitation.

 

[brendapals]

First of all, bless your heart. It is wonderful that you are taking an active role in supporting your husband's diagnosed.

From what I know, my neuro explained to me that EL is the crying or laughing at inappropriate times. Almost uncontrollable for me anyway.

Many drs will use antidepressants, and they seem to help. Also the newer drug Zenvia was in trials for EL, and I think it is available now-not sure. You could go to the search option at the top and type in emotional lability, or Zenvia, and be able to gather lots of info there.

 

[thelma313]

I can tell you that with my Dad who also has Bulbar onset, it started with inappropriate outbursts of anger. Before he was diagnosed and his only symptom (or so we thought) was slurred speech he would sometimes aggressively snap at my Mom or my sister or me and we were dumbfounded. He was always a spirited man but it was very unusual for him to be so aggressive. After the diagnosis he mostly cried. I must say it is never inappropriate. My Dad's crying is hard for him to control but it is always set off by something that either touches him (like if we tell him we love him) or if he is set off by falling down or choking.

Hope this helps! I am so sorry for your husband's diagnosis. He is lucky to have you so hang in there.

 

[BethU]

Hi, Savoring ... I'm so sorry for your husband's diagnosis. He is blessed to have you there to support him.

My lability is quite extreme ... I think most PALS experience much milder outbursts ... but I have read posts about the subject from people who have my type, so it's not unheard of.

The main thing to remember is that the outbursts are uncontrollable. You can't stop them. They have to wind down by themselves. For the PALS, they are very embarrasing, because they are usually WAY out of proportion to the "cause" ... a news story about an abandoned pet can trigger 15 minutes of sobbing, or a casual courtesy from a stranger can cause you to burst into tears. Often they are additionally embarrasing because they are so out of place ... uncontrollable laughter at a funeral for example.

About a year after my bulbar symptoms started, my EL appeared full-blown. (I think actually that I had episodes of EL ... anger and irritation ... before any other ALS symptoms appeared, but pinpointing the "beginning" of ALS is very difficult.) The first time it happened with weeping, I was on the phone with my niece. I was upset about a medical procedure my husband had coming up, and my niece offered to accompany us, and I broke into huge sobs and wailing because of the kindness of her offer. It was so embarrassing, as I couldn't stop ... and it was nothing like any "crying" I had ever done. The noises I made were incredible. I know other PALS have experienced this kind of loud outburst, but not all do.

Unexpected kindness, or anything emotional to do with animals will set me off. What is so distressing is that with the weeping especially, but anger, too, my mind is completely disconnected from the emotions I'm expressing. So during an episode, I use my LightWriter to tell people I'm around that this has nothing to do with them, or the situation, it is ALS in action. When I type that out, I am still usually crying and screaming. It's like having a seizure ... your body is doing something you can't stop, and your mind is horrified at the noises you're making.

I'd only begun to have laughing episodes when I got on lability meds, but I experienced the same thing there ... loud, uncontrollable snickering and whinnying unlike normal laughter. Fortunately, the lability meds have controlled it completely.

I think a lot more PALS have this than recognize it. Anger and irritability with caregivers especially is often a sign. It is so hard on the caregivers, who usually are devoting their lives to care for their PALS, and to feel that nothing they can do will satisfy their PALS is very hard to bear.

Anyway, the good news is that it CAN be controlled with medication. I am on a med that is still in trial (Zenvia), which has benefits for the whole bulbar region of the brain. Anti-depressants can control this, also. When I was without lability meds, I would take a Valium before seeing people I love, which I knew might trigger an outburst of weeping. I don't like Valium, but it helped to control it.

My advice to any PALS who is finding themselves short-tempered with their caregivers or family members: get help to get control. This is a normal symptom of ALS, and treating it will increase your quality of life enormously. It's not fair to our family members to subject them to inappropriate anger when they are carrying such extraordinary burdens just with our physical and emotional care.

Savoring ... nothing you are doing is contributing to your husband's irritation, and there is nothing you can do to reduce his irritation and anger. It is a symptom of ALS. Hopefully, your husband can come to realize that his reactions are way out of line; maybe his neuro can make it clear to him. Simple medication can bring him back to his "real" self, with normal and appropriate emotions, and it will make it much easier for him (and those around him) to cope with the disease.

Blessings to you both.

 

[brooksea]

BethU,

Very well said! I can relate to the "sounds" made during an episode of crying or laughing. My husband sounds like a seal! When he is really angry (for good reason) he cannot talk at all!

Savoring-

My husband is unable to get Zenvia, as the trial is over for him and he would have to get it formulated at his expense. So, we are going to try the generic form of Celexa. Hopefully, this will be helpful.

Good luck to you and your husband!

 

[rose]

I have not had the extremes some people have described. I do cry without warning from emotional triggers. The crying seems to come and go for me, music can trigger it & "warm fuzzy images" are sure to do the trick.

.... walking down the baby aisle in the grocery store, and daring to sniff the Johnsons baby lotion sent me into major tears ~ and a call to my daughter about how I wanted a grandbaby to rock ~ not ideal behavior! Yes that was me on the cell phone, at the local A&P weeping...

More recently, while driving in the car, the song by Heart, Dog and Butterfly, came on, and I started crying so hard I had to pull over... and I never even thought I liked that song!

Before my doctors had brought up the possiblity of ALS with me, I'd noticed I was having problems coping with situations which before would have not phased me. It was more of an internal turmoil than outward display.

 

[BarryG]

I've started to write a post on this thread three times now and backed out because like many guys I find it hard to even admit to having emotions let alone talk about them. That said, I know that I am not the same person, inside or out, that I was a couple of years ago. I don't think that anyone could be unchanged by being diagnosed with a serious illness like this. I'll admit that I do cry more than ever before (I avoid sad movies or songs) but maybe I'm one of the lucky ones (so far) to not have any real problems with uncontrollable emotions. I try really hard to not get angry because I know that it does me no good and it can allienate others but it's difficult to subdue the frustration that I feel when no one can understand what I'm saying. Emotional lability, I don't know but heightend emotions definitely.

And Rose, how could you not like Heart? Since I'm telling secrets here I'll tell you that I was a huge fan in the 70's and had a crush on both of the Wilson sisters.

 

[SavoringLife]

Thank you to everyone who responded. I feel much more confident in dealing with this emotional rollercoaster now. Interestingly, I've always considered myself an even keel, unflappable person, but I find lately that I go through my own extreme range of emotions now so I can only imagine what my husband must be going through. And, like most men, he doesn't really like to talk about his feelings, so I give him space and let him be.

You guys are an amazing support group -- thank you so much for all of your posts.