Emotions and other items

[dbach]

Hello PALS, CALS and friends:

If yawning is common for people with ALS how do we know if it's the disease triggering the action or person is actually tired? The only answer that seems to make sense to me (might be a minority here) is one includes fatigue and the other doesn't, is that a fair assumption?

Also, why does ALS affect emotions? Does this happen for all PALS, or is it a hit or miss like a sporadic diagnosis?

Thanks,
Darryl

 

[Nighthawk]

Hi,

I have ALS (Bulbar onset). Supposedly Bulbarians like me are more prone to yawning continuously for no apparent reason (related to the disease, some may say).

I yawn but, my yawning episodes are triggered more by tiredness than the disease itself. For example, if I stay up late watching TV from my bed, the next morning I will be yawning uncontrollably. Is it the disease or is it because I am exhausted? I don't know with a100% of confidence but I can correlate the more exhausted I am, the more I yawn.

Regarding the emotions (inappropriate outbursts of laughing and crying), that is also caused by Bulbar onset and it's called Emotional Lability . I experience it too but more as inappropriate laughing than crying. It apparently happens because ALS causes like a "short circuit" in the part of the brain that control the emotions.

There is a drug called Nuedexta (for ALS Bulbar onset) that can be prescribed by your Neuro to your PALS and it can help control those "emotions" of uncontrollable laughing/crying as well as it can even control drooling and help with swallowing.


Hope this helps.


NH

 

[mich5]

I have significant bulbar involvement, and I agree with NH. The yawning does happen when I am tired or stressed - however, it is 'extreme' yawning (much more 'wide' and the yawn 'holds' longer than my pre-ALS days).

I, too, have the emotional liability and seem to have more episodes of extreme laughter, than extreme crying. The Nuedexta helps with this. There are approximately 10 pALS in my ALS support group and only one of them also has emotional liability - he has bulbar-onset ALS. None of the other pALS in my support group has bulbar issues. Not sure if emotional liability happens more often with bulbar issues, but that seems to be the case in my small support group.

 

[Barbie]

isn't yawning also an automatic response to CO2 buildup?

 

[Nighthawk]

isn't yawning also an automatic response to CO2 buildup?

Many people assume that we yawn because our bodies are trying to get rid of extra carbon dioxide (CO2) and to take in more oxygen (O2). This may make some sense. According to this theory, when people are bored or tired, they breathe more slowly. As breathing slows down, less oxygen makes it to the lungs. As carbon dioxide (CO2) builds up in the blood, a message to the brain results in signals back to the lungs saying, "Take a deep breath," and a yawn is produced.

You are right about it, Barbie.


NH

 

[Cricket]

Trying deep breathing exercises might help. Just a side note...reading about yawning is making me yawn. I wonder how many other readers will get the yawns from just seeing the word Cheers!

 

[pearshoot]

i always yawn when i read out loud have done that for years

 

[hjlindley]

I have distal onset ALS, but my breathing is starting to fail and I yawn quite frequently. I know from my background that what is happening is the small intrinsic muscles called the intercostals are weakening and I cannot completely exhale. I think this diagnosis makes all of us emotional, but true emotional liability is inappropriate emotions and Neudexta seems to help a lot of people. Good luck to you. We try and help each other as best we can.
Hollister

 

[Nighthawk]

@hjlindley,

Sorry to hear about the breathing issues you are starting to experience.
Are you on BiPAP for this already? If not, you are going to need it a.s.a.p.


Take care.


NH

 

[jellis86]

As a bulbarian, I yawn occasionally in the early part of the day and then almost continually towards the end of the day. For the rest of the day, maybe an hour upon waking until 2 hours before sleep, I rarely yawn at all.
I have noted that when I go to bed and put on my bipap mask, I no longer yawn...or if I do it's once or twice while on the machine.

Now I have always yawned and would frequently be called a milquetoast when out with friends. But as others have stated, my yawns typically seem to last longer and are more frequent than my pre-ALS days. So I'm sure some relation to excess CO2 or the need for O2 exists.

 

[jellis86]

Yawning and pain

Since we are on the subject of yawning, I recently have had a new symptom. Right in front of my left ear I get a very sharp pain while yawning. I'm sure its TMJ related and I've always had some slight catching on both sides. But this is new and sometimes excruciatingly painful, although only lasting a few moments after yawning.

If I try and move my jaw to the right when yawning, I can sometimes avoid this pain. But as much as I yawn in the evening, I sometimes don't catch it and SNAP..OUCH!

I have avoided trips to the dentist since last fall....but I may need to visit one soon.
Does anyone have any recommendations as to what to tell the dentist? I have nightmares of choking on my own saliva while tipped nearly upside down! I have always hated dentists visits, now I am terrified of the prospect!

 

[Ms. Pie]

Cricket, I hear ya! I've yawned about 5 times while reading this thread!

 

[hjlindley]

Thanks guys! I do have a BiPAP but in my case I have elected not to use it. I have no desire to extend this life as this disease is taken my hobbies, my passions, my independence, and my strength. At 62 with no brothers, no sisters, no children, and I've had a full and rewarding life. I just try to pretend that I have moved to Vail. A friend says that the view is not quite as good!

 

[Barbie]

Jellis, I know that my husband had some jaw pain in the past and I took him to the dentist thinking it may be a cavity. OMG what a difficult experience for all of us. Dentist offices are not handicapped accessible ( he is in a pwc) and it is impossible to get x-rays in a chair and then his jaw is clenched so they could not really get in there to check anything. But the consensus was that it was the clenching causing the pain. since then, I have tried to stretch his jaw as much as possible and also massage the joint right next to the ears. his bottom jaw is twisted now a little off from his bite, and all his teeth have shifted. he could not use a mouth guard because of the ALS but I think it has stopped moving because he doesn't have pain anymore. Sorry I cant help any more.

 

[jellis86]

Barbie....you were very helpful. I am a clencher...sometimes I wake up and my teeth are slammed together and even grinding at times. I am going to try a mouth/teeth guard again. Not sure how it will work with a bipap, but it might be worth it. I've read posts at a cpap site and it sounds like people do it all the time.

Thank you for your input!