Shocked by Sleep Study Results, BIPAP recommended

[azgirl]

I'm not sure why anything about this disease shocks me anymore, but here's what happened.

At my recent clinic visit, my FVC and peak flow numbers were close to 100%. I've had no breathing, swallowing, speech issues yet...it was the one positive in this whole mess. My doctor recommended a sleep study anyway just as a precaution.

I did the study at home where they hook the monitor to your finger to check oxygen levels. I slept extremely well that night, from 9pm to 5am without waking up (I do use a small piece of chocolate med mj at night that knocks me out) Then I wake up feeling fine, no headache or unusual fatigue.

Yesterday, my doc called with results which she said were "horrible" and indicated the need to start bipap. She seemed happy to have caught this early and says they are starting to find night breathing issues even though the daytime breathing numbers are good.

Have any of you had this experience? Any thoughts?

I'm depressed as more and more equipment invades my once peaceful home.

 

[Nikki J]

I am really sorry. I understand how knowing and treating early is good in the long run but to have this come out of the blue must have been a shock. There is no chance the mj had any effect on this?

 

[azgirl]

I wondered about that, too, Nikki. Think I'll send that question to the doc. She's pretty convinced that starting bipap is good..."can buy you 19 additional months"

 

[gooseberry]

With any change in weight, muscle tone, or menopause in women sleep apnea can become an issue. I got my cpap after a 30 lb weight loss and hysterectomy. The doctor told me the hormonal changes of being in peri or postmenopause. Cause relaxation of the muscles so they dont stay in place when you sleep.

 

[Nuts]

Azgirl, my husbands daytime numbers were "great", but I recorded his nighttime breathing and got an immediate response when I played it for the RT. They put him on a Trilogy at night without a sleep study. We'll get the download next week, but I have no doubt about what it will show. Since starting on it he wakes without that groggy, incherent look on his face and he seems to have more endurance during the day. I know I'm sleeping better...

In addition to the obvious sleep apnea, he was taking almost two breaths for every ne of mine. I've been concerned about his nightime breathing for quite some time, but because of those sitting up numbers it took the recording to to anyone else's attention.

 

[MaxEidswick]

>I'm depressed as more and more equipment invades my once peaceful home.

they tried to get me on a bipap even though my sleep study was'ok'. Still breathing mostly okay

 

[summerguy2007]

Hi, I'm sorry to hear this, and I was also surprised when I did 2 sleep studies at the hospital around the same time as diagnosed with ALS. I have severe sleep apnea and have been using a Resmed S9 VPAP (set differently than Bipap.) I was not overweight and they link the apnea to my ALS. I use the S9 every night but must admit it took me a long time to get used to it. My daytime breathing is mild to moderately below norm. Every day I do 2 breathing exercises to strengthen my diaphragm muscles. I think we all had more regular lives before this onset. My bedroom sad to say is a mini-hospital room since I have a hospital bed with trapeze, the S9, and a cough assist vest machine. I've been living with disease for 8 yrs but was perfectly fine before this and my health good except BP which I take a pill for. Unfortunately it changes things a lot & I empathize with anyone who has a serious disease.

 

[hjlindley]

I got short of breath very suddenly. They kept telling me that didn't happen in ALS. I was hypoxic Eight times during the night. I had no signs of respiratory distress during the day and slept solidly through the night. Turns out it wasn't ALS at all but pulmonary emboli from a drug my ALS neurologist gave me. Not everything that happens to us is ALS. Good luck.

 

[slopokahontas]

My breathing is fine as well, but my sleep test was awful as well. Dr. Sherer had thought it was a breathing problem at first, with the low oxygen levels. The specialist thinks that my diaphragm is weakening my muscles to where I have reflux at night. I don't notice anything aside from having a lot of phlegm and having to clear my throat a lot. Do you have that problem?

 

[MaxEidswick]

Hollister, I blame everthing on ALS -- even the damn dogs barking

 

[hjlindley]

I have had reflux all my life as I have a hiatal hernia. The head of my bed is up 6 inches. I take amitriptyline at night which dries up the phlegm and during the day I chew on papaya enzymes to thin the thick secretions. My advice is to never go to any of these appointments alone, take a list of questions, and keep pushing to get answers. If you're not and an ALS center, you really need to be your own advocate. Ask out right if there is a possibility that these are pulmonary emboli.
Hollister

 

[azgirl]

Slopokahontas and Hollister, no I don't notice any problems with phlegm or reflux. Until now ALL of my symptoms have been limb weakness, which is why this new breathing issue that I had no idea that it existed, is so shocking.

I've had no sleep issues at all...until the doc called to report the sleep study results, which has made me paranoid about breathing and a little fearful to take the nightly mj that does such a great job of knocking me out. I'm taking it from now on, though, accepting any negative consequences!

I've decided to try the BiPap and see if it makes any difference in how I feel energy wise and go from there.

Max, our newspaper didn't come today, obviously we can blame ALS for that!

Thanks for all your input everyone.

 

[Graybeard]

I just got a new bipap, so I moved the old one to my easy chair in front of the tv. With it on, I can't stay awake more than a few minutes, in spite of a full 8 hours last night.

 

[MaxEidswick]

>Max, our newspaper didn't come today, obviously we can blame ALS for that!

Ditto that!


btw, what's a newspaper? ... something like a home phone?

 

[Nuts]

>Max, our newspaper didn't come today, obviously we can blame ALS for that!

Ditto that!


btw, what's a newspaper? ... something like a home phone?

Max, like I've always said, better a wise a$$ than no a$$ at all