ALS Specialist could not answer questions about breathing problems!

[handinhand]

Andy, sorry that your Dad is having these problems.... I didn't like the bipap at first either. same reasons.... It takes a bit of practice to get used to it. As a dear friend told me, sit on the edge of the bed ,relax.then put the mask on without the air turned on. Get the strapes on securely. Now turn on the power. It will take a few times breathing but it will start working with you[him] .. I kept trying and trying until i got it right... smile! I also went to my first Nero and he didn't specialize in ALS so i found a Clinic with everyone working together. Nero, Pulmonary a,speech,dietition,, They will all work together to help.... I travel 7 hours every three months to go there. It is well worth it... Best of luck to you . You can vent when ever you need.. Someone is always hear to listen.. L

 

[mare]

Phil-

Maybe what you are experiencing are laryngospasms (closing of the throat feeling)?
My husband had/has these; Clonazepam has helped decrease the frequency & intensity.

Do a search for laryngospasm- there has been some discussion about these. Others have found different meds that work (Valium/Diazepam and I think Ativan/Lorazepam; all in the same family)

There is also a description of how to "breathe through" these episodes that helps my husband as well. Good luck!

 

[Phil M]

Phil-

Maybe what you are experiencing are laryngospasms (closing of the throat feeling)?
My husband had/has these; Clonazepam has helped decrease the frequency & intensity.

Do a search for laryngospasm- there has been some discussion about these. Others have found different meds that work (Valium/Diazepam and I think Ativan/Lorazepam; all in the same family)

There is also a description of how to "breathe through" these episodes that helps my husband as well. Good luck!

Yeah, I believe thats it. I read where people use valium, but thers not much time to do anything when it happens. Most of the time, it happens shortly after I wake up.

 

[mare]

Phil-

Definitely read the Laryngospasm thread; especially post #11.
The breathing technique really works- and it would for you in just the situation you mentiion. Key is to stay calm, breathe shallow through your nose. My PALS likes to sit up straight. Once you see that this works, it is easier the next time.

As far as drugs, the Lorazepam drops that are mentioned are to be given at the time of onset, so yes that could be difficult. But, my husband takes Clonazepam 0.5mg every night. This is a very low dose, but the continuous level in his system helps to decrease frequency & intensity, as I said, and when they do happen, they are very manageble.
It does not make him weak (that we are aware of) and if it makes him sleepy, well, that is why he takes it at bedtime. Sleeps like a baby!

 

[Phil M]

Phil-

Definitely read the Laryngospasm thread; especially post #11.
The breathing technique really works- and it would for you in just the situation you mentiion. Key is to stay calm, breathe shallow through your nose. My PALS likes to sit up straight. Once you see that this works, it is easier the next time.

As far as drugs, the Lorazepam drops that are mentioned are to be given at the time of onset, so yes that could be difficult. But, my husband takes Clonazepam 0.5mg every night. This is a very low dose, but the continuous level in his system helps to decrease frequency & intensity, as I said, and when they do happen, they are very manageble.
It does not make him weak (that we are aware of) and if it makes him sleepy, well, that is why he takes it at bedtime. Sleeps like a baby!

I have some Zannax, I would imagine it would do the same.

 

[mare]

Don't imagine- check with your doctor (als neuro)!

 

[Andy2020]

Hi ANDY,
It's been 4yrs yrs & still not alot of answers ,I guess patience is a virtue & really mine is running thin.
I watch my husband everyday try to do things that he always could & it's very frustrating,so push those people for answers & I believe you are showing them respect but some times you have to push.God Bless your family.
Sharon

I'm sorry for your 4 years of frustration Sharon.

I will pray for you and your family.

 

[CAHPAH]

Andy
My wife was diagnosed in Sept 07. 2009 ALS has really attacked her lungs. She just got her bipap last week and has the same complaint has your Dad about it being hard to breath against the machine. Her doctor said it is a common complaint because in a natural state we breath out against negative pressure and the bipap forces you to breath out again positive pressure to make sure your air way stays open, so it is not natural. He said it takes most people a couple of weeks to get used to it but after that they love their bipap. He seemed to know what he was talking about so we'll keep trying. Best of luck.