Headaches

[texastracy]

I use a BiPap all night. But for the last few weeks, I've had headaches in the morning, and some during the day. I know this means that CO2 is building up. My question is, would adding a pillow to the two I already use help much?

Tracy

 

[zoohouse]

Do you have a respiratory tech working with you on your bipap? If so, I would suggest that you be hooked up to a pulse oximeter for 24-48hrs to see if your O2 is dipping. Also one of our forum members lgelb was very helpful in getting my husbands setting to their optimal. If it weren't for his back pain he can lay flat with his BiPap on. But you could always try more pillows, and drinking more fluids.

Paulette

 

[texastracy]

I have a &)$)@$@ respiratory tech here. I emailed my ALS clinic in Dallas about what's going on. Plus I have a pulmonologist in town that I'm calling tomorrow to see if they can do a FVC on me and fax it to the clinic.

Today has been a good day - no headache or extra time on BiPap. But hi ho it's back to work I go. 60 more days of school (counting weekends). I know ...quit working, but for now I would go batty at home. And I need to finish this see mester to qualify for full benefits. We'll see what the docs say.


Thanks for the good ideas. Is stacking up pillows best? Or a wedge pillow.

Tracy

 

[MaxEidswick]

>But hi ho it's back to work I go. 60 more days of school (counting weekends). I know ...quit working, but for now I would go batty at home. And I need to finish this see mester to qualify for full benefits. We'll see what the docs say.

Hi Tracy, how do you survive without catching something from all those little incubators in school?

 

[zoohouse]

A wedge pillow would be best with a extra pillow for your head. You may start to slide down the bed so a second wedge under your legs help, but that may make it difficult for you to get out of bed on your own, so a pillow under your knees may be enough. I hope it is something simple like dehydration or even neck stiffness. God Bless.

Paulette

 

[texastracy]

Max,
The custodial staff disinfect my room every day. Recline the trash cans and spray them with Lysol. I have a 96% attendance rate in my class. Even my flu numbers were down. I haven't caught the usual sinus infection I usually do. I think that's because of the BiPap. I'm careful to do all the cleaning of OT I should.

Paulette,
Thanks for the advice. I'll look into the wedge pillow.

Tracy

 

[texastracy]

So, got an email back from the clinic. They said the respiratory tech can change the settings. So I called her and she said she would Dallas the clinic for new settings. Plus the doctor said that a MRI/MRA might be needed.

2 questions
1. Do any of you have a pulse ox meter at home?
2. Can FTD be seen on a MRI? This is not bothering me. I just wondered about it?

Today was a good day until recess. Texas dust storms are wicked, especially while the fields are empty. Sand blowing really bothered me. Pulse ox was at 93%. The nurse heard me coughing and made me come in and checked it and blood pressure, listened to lungs. All good, but boss sent me home right after school. I live in the proverbial village.

Tracy

 

[lgelb]

Hi, Tracy,
If you're still teaching, I doubt you're really at the stage where BiPAP can no longer prevent CO2 buildup.
Are you on a hospital bed w/ your head slightly elevated? If not, that would be my first move. You should not need multiple pillows. In fact, the more you have the more likely you are compressing your cervical spine, which can lead to headaches. Also, you don't mention actually feeling out of breath on your machine? So I take the headaches as:
1) Bad head/neck positioning and/or
2) Too much or too little humidification or temp (what kind of machine do you have, set at what)
3) Too much work for your respiratory tract due to too low/too high pressure support (distance bt IPAP/EPAP), EPAP too low to keep throat open, too high to breathe against, IPAP too low or too high -- think about this when you first put the mask on; does it feel like when you hit "on" that your own breathing is continuing or being changed? The idea is to be in sync.
4) Default breath length or backup rate breaths set too fast or too slow for your natural rhythm. A range is always best if your mode permits that. In some cases, letting breath triggers/cycles occur more variably is more important than a backup rate (ST mode), because often you are not "breathing enough" because it's simply uncomfortable to do so, or to do as often as you would otherwise.
5) High leak

The only way to really pinpoint this is to check out your data -- does your machine have a data card?

 

[lgelb]

Sorry, think our posts crossed. Yes, an oximeter (measures pulse ox, pulse) to have in your purse/in your drawer at home is a good thing though it is not strictly accurate w/ edema, cold and such. 93% is nothing to worry about in and of itself and likely reflects a transient response to an irritant...dust. Have you tried a disposable mask, sold in drug stores?

To put the 93% into perspective, when Larry has a mucus plug, his pulse ox goes into the 80's and occ in the 70's. That is when we focus on moving mucus around and he does not lie down until it is 90-ish. And, BTW, those are also occasions where I have to CHANGE the BiPAP settings (he is on BiPAP most of the time) or he would not be able to get the mucus out (he is not a candidate for the Cough Assist or vest but uses IPAP to sort of breath stack in a nasal mask). And that is one of the many reasons you need access to your settings! Sorry to shout but this drives me crazy. Anyone reading this, if you are on BiPAP, learn how to adjust your settings. It is not illegal, immoral or difficult.

I don't see why you need an MRI based on what you have said, but no, it will not show FTD and they would be doing a chest MRI anyway (but that sounds crazy to me at the moment). A chest x-ray would be recommended if you had signs of acute infection, but I'm not reading any...
You and not the RT should control your settings. Larry uses 3 machines in different settings and I tweak them at least once a week depending on circumstances/events, often increasing something and then dialing it back when he feels better. This is a progressive, unstable disease and the tech is not with you every moment. Having a tech change settings based on the past is like driving using the rear view mirror.

 

[MaxEidswick]

>I live in the proverbial village

Downs nice

 

[texastracy]

IPAP is 20, EPAP is 11.

 

[texastracy]

Now IPAP is at 21 and EPAP is at 12. Resp tech recommends a sleep study while I'm on the trilogy to see what's going on at night.

I cough but I am not congested. A little crumb can set of a spasm in my larynx. Scary, but I've learned to relax and they ease up in about 20 seconds. I am really careful when I eat. I've given up some foods because the crumbs get my off a spasm. I don't labor to breathe, even when laying flat. I sleep on my left side most of the night.

FVC at last clinic visit in Feb. was 76% up from 73% in Nov. MIP went up from 36 to 43. They were real happy with that and the fact I had gained some weight.

 

[Gerri]

wonderful news Tracy! Great to hear that someone has improved their respiratory functions for a change!

 

[texastracy]

Thanks Gerri. Welcome to this site. There are wonderful people here. Feel free to check out my photo albums. Let me know how you are.

Where is Lansing? We live outside of Lubbock about 12 miles. I teach 2nd grade - 28th year.

Keep warm or cool all of you wherever you are.

T

 

[lgelb]

Those are really high settings, unless you have obstructive apnea to begin with and a very collapsed airway. I suspect you are struggling to breathe against an EPAP that high and would be very curious as to why it was set that way. If you have another sleep study, make sure they do a "zero up titration." The changes you describe can be measurement error, but you certainly want the machine(s) to help you do the most with what you have while you have it. That's why anyone w/ pre-existing apnea [at the least] who acquires ALS should be on a VPAP mode, not the S mode, IMHO, to allow for the variable obstruction level that fluctuates as you sleep, as well as mask leak that is common among people who didn't sleep that well to begin with.

Know the crumb problem well. On the current not-eating list are rice, peas, corn and fruit with thick skin like grapes. We peel pickles, break cookies in half, things like that. Also avoid sticky/coarse foods like jam (jelly is fine), peanut butter, caramel. Morning and bedtime, we use Luden cough drops, also often chewable papaya tablets.