Headaches

[chally]

I been getting headaches a lot and the trilogy really helps my diaphragm muscles to relax but just wondering if anyone else still gets headaches even using machine. Maybe it time I am on it 24/7. I don't know, Tylenol helps but I don't like taken lots of it. Thanks love ya chally

 

[KimT]

I think things other than CO2 buildup can cause headaches. Weak neck muscles can cause strain and referred pain. I had headaches for years related to computer use and bad posture.....both things that are common in PALS. Can you get an arterial blood gas draw to see if you are having CO2 buildup during the day? If you used the Trilogy 24/7 I guess you might see improvement.

How do you feel about an hour after you disconnect from the Trilogy?

 

[tripete]

I do. The have adjusted the settings and when they do it makes the headaches go away for about a month then they need to be adjusted again. The last adjustment maxed the pressure and it was making it to hard to sleep (noise from air being leaked out with the pressure so high) so I use a lower setting and deal with the headaches (they are a bear). you probably have room for adjustments to be made. As you are aware the headaches are usually caused by C)2 build up.

 

[BlueandGold]

I been getting headaches a lot and the trilogy really helps my diaphragm muscles to relax but just wondering if anyone else still gets headaches even using machine. Maybe it time I am on it 24/7. I don't know, Tylenol helps but I don't like taken lots of it. Thanks love ya chally

Chally, don't know if this is coincidental but I never got headaches after using my trilogy. Just about 3 weeks ago I had made it up to 6 hours at night. Then, out of the blue, I woke up in the middle of the night sneezing my head off, eyes running and nose pouring along with an excruciating headache behind my eyes and cheekbones. Went to the doctor and he said I had a sinus infection. Gave me a shot of antibiotics and steroids and liquid antibiotics for another two weeks.

Felt pretty good yesterday so tried the trilogy for a couple hours. Within an our of me removing it, it felt like someone jammed an ice pick behind my left eye and I started sneezing. Doc told me my nasal membranes are still swollen and combining the pressure of the trilogy is just exacerbating the problems. Now I'm doing Flonaise nasal spray every day. He told me not to use the trilogy until I get this under control so we will see. I have to admit it is very hard to sleep without the trilogy because a can't lay back without it.

Going back to Duke on Aug 9th. Going to ask the about it too. But twice, after being sick I tried to wear the trilogy for a couple hours and I seriously got the worst headache I have ever had in my life. No trilogy, no headaches. Go figure.

Vince

 

[azgirl]

I think that neck strain, dehydration, and CO2 buildup all contribute at times to my headaches. It seems to be a balancing act to keep those three things in check. ALS just keeps us guessing, isn't this fun!

 

[affected]

All spot on advice here Chally - you should get your CO2 levels checked because it can cause headaches but the simple things of posture, support and hydration can be just as influential. xx

 

[Diane H]

Have you checked your blood pressure?

 

[chally]

Thanks all, blood pressure checked 120/80. No bad
Azigirl, I think your on to something there the triple combo
Co2/h2o/ neck muscles also just my glasses adjusted to my face better. Dam Vince , you don't git a break! You know there
a ALS chapter starting up in WV. Love ya chally