Just a couple of questions.

[Jlight1]

I was wondering today if headaches are associated with ALS? I've had one all day. I seem to be getting them more often that normal for me. They are not the worst headaches, I've had migraines, but I was curious.

I have been experiencing another thing just recently. I'm having trouble exhaling sometimes. Not inhaling just exhaling. It just seems odd to me almost like it might be a nervous type of thing.

Judy

 

[hopingforcure]

Have you had your breathing checked recently? if not that would be a good idea. The headaches can come from CO2 build-up, and could be the culprit, the other symptom could be from the same thing, or just anxiety. If you have had your breathing tested what were your numbers. Just some ideas.

 

[Jlight1]

My numbers went from 100 to maybe 85 ( don't remember it well ) Then she tested me lying down and said I did better but didnt say the number. I hate breathing into that mask it makes me feel like I can't breathe but I don't normally feel like that. It just makes me nervous for some reason.
Judy

 

[Bad Balance]

Coffee? Have you cut back lately?

 

[Jlight1]

My swallowing capabilities are so diminished that I can't even get in a whole mug in the morning anymore. It's a wonder that I can even survive without my coffee(lol).

 

[rose]

Hi Judy,

I agree that co2 build up should be considered. It was a problem for me causing headaches, and if you're not breathing out efficiently, then it would follow that this could be the cause.

Has your MIP and MEP been evaluated? My MEP is the lowest of everything (exhale) and one of my first symptoms that I noticed.

If its breathing out while wearing BiPAP (do you have one?) perhaps the settings need adjusting.

And coffee (a real necessity around here!) I switched for the longest time to espresso, gets the caffeine in with smaller amounts of liquid, and the cup weighs less lol. Right now I'm back to regular coffee, I can drink one mug, divided into two sessions, drink the first bit, and zap it in the microwave later.

Really though, its good to get a firm grasp on where your breathing is at, as its a huge factor fir quality of life.

 

[Lavender Lady]

Having a bipap will also save you the energy you are putting out trying to breathe.

 

[KC2U2]

My swallowing capabilities are so diminished that I can't even get in a whole mug in the morning anymore. It's a wonder that I can even survive without my coffee(lol).

When my wife and I went off caffeine several years ago, she had a series of devasting headaches from withdrawal. Don't know how much you've cut out, but it could be part of the problem

 

[sadiemae]

My husband has severe headaches, he seems to feel that it comes from his neck problems. He doesn't use his BiPap on a regular basis, but has been using it more because of the headaches, and it does not make the headaches go away. We are going in for a sleep study next week, so maybe get some answers from that.

 

[Jlight1]

Thanks for the heads up. I have an appointment to go to clinic on Feb. 8th. I will ,mention this to them then.