Old 03-12-2009, 12:53 PM #1 (permalink)
Sammantha's Avatar
Senior Member
 
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Sammantha Sammantha is offline
Senior Member
Sammantha's Avatar
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Default REM sleep

The cardiologist referred me for a sleep study, he feels that my breathing is what is affecting my heart. The doctor who read the sleep study was the same one who read my pulmonary function test. He said that i am waking during REM sleep and that when i am laying on my back this occurs most often.... So, i have to learn not to sleep on my back! I knew that, but now i have to wear a nightgown with a tennis ball so that when i roll on my back i do not stay! When i am laying on my back, my breathing and heart rate act up during REM. Yet i do not technically have sleep apnea......... Sam
Sammantha is offline  
Old 03-12-2009, 05:20 PM #2 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

Have they mentioned a Bipap? Don't remember if you use one but assume not if you're going to sleep study. Most ALS patients with breathing problems first notice trouble breathing lying down or on exertion. It is easier to breathe on your side and elevating the head can help as well. When that doesn't work anymore a Bipap is the next step.

AL.
Al is offline  
Old 03-13-2009, 12:40 PM #3 (permalink)
Sammantha's Avatar
Senior Member
 
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Sammantha Sammantha is offline
Senior Member
Sammantha's Avatar
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Default

Hey Al, thanks for replying... Well first off i stopped going to the Duke clinic in the fall, because they would not help or give me any answers, plus i could not afford to go... Very expensive trip everytime... So i have been dealing with problems as they arise locally.. My doc knowing my history sent me for a PFT. It came back saying suspicious for respiratory muscle weakness. So they wanted to send it to Duke neurology, i knew there would be no use and they never contacted me. Then my heart started waking me up more often in my sleep, it was pounding so fast i could not get it to go back to normal. The ambulance came and recorded it as SVT, it was over 160 beats. When i got to the hospital, the doc diagnosed it as PSVT and referred me to a cardiologist. The cardiologist asked my symptoms, read my tests, told me that he felt it was from breathing issues that he believes is neurological. He then had me wear a event recorder and sent me for a sleep study. The doc who read the sleep study, only knew my history of my pulmonary function test, my normal x ray, tachycardia....... He was reading my test as he was asking me questions. Then thats when he told me that my lungs were fine and that he does not know why i am having shortness of breathe but would like to "observe me." He did not realize that i knew the results of my pulmonary function test, he thought he had ordered it because he read it for the hospital. He then told me that during my REM sleep, i have breathing difficulties, and if i am sleeping on my back... Thats when he told me about the whole tennis ball thing, he brought up a muscle question and that is when i gave him my history of "ALS LIKE syndrome." He said, Why didn't you tell me, i did not want to jump to that conclusion, before i ordered more tests. He said that he felt it was muscular but wanted to order more tests, like MRI..... I said, why did you tell me my pulmonary function test was okay, when it wasnt? He said that he wanted to make sure it was muscular before explaining all of that to me. Then he encouraged me to see my neurologist at Duke. That they need to know about these tests, i said you can send them all you want but unless I am going to die in my sleep tomorrow or i cant walk, there is no sense. He understood, he said that it was not a diagnosis that anyone wants to make. I am like, i am beyond a diagnosis, i need help with the problems i am having! I started to see a counselor who is going to help me with some muscle relaxation, breathing, and possible excersize routine because she knows i am scared of how much to excersize and what to do when my shortnees of breathe gets uncontrollable. I went out and got the counselor, she and my internal doc are the only ones trying to help me. Sorry for the long post but its been awhile i thought i would make up for lost time.......: ) Sam......... Hope you are doing well, Al.
Sammantha is offline  
Old 03-13-2009, 03:36 PM #4 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

Well Sam you know I'm not a doctor but it sure sounds like diaphragm weakness to me. Somebody should be setting you up with a Bipap. I don't know which guy should be doing it but somebody should be checking you.

AL.
Al is offline  
Closed Thread

Tags
back, ball, breathing, heart, pulmonary function test, sleep, test


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Sleep Bad Balance General Discussion About PLS 9 11-04-2013 10:38 PM
als and sleep dasilva General Discussion About ALS/MND 6 07-27-2013 11:34 AM
Can't sleep Glenda Green People With ALS - "PALS" 17 04-11-2012 12:02 AM
Sleep joni51 Current Caregivers (CALS) 32 12-02-2011 01:07 AM
Do you need more sleep? rmstudier People With ALS - "PALS" 11 03-02-2011 08:40 AM
How to sleep with ALS pumpdoc General Discussion About ALS/MND 12 12-14-2010 04:24 AM
Sleep? Phil M People With ALS - "PALS" 5 10-22-2010 11:19 AM
How can i get some sleep? JamesMcC General Discussion About ALS/MND 8 08-17-2010 05:38 PM
sleep and ALS C.F. General Discussion About ALS/MND 7 06-24-2009 11:27 PM
Not Able to Sleep Chris General Discussion About ALS/MND 22 02-15-2005 12:08 PM


All times are GMT -5. The time now is 03:44 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016