Scary woke at 5 am feeling like having breathing problems

[dragonlibra]

I am limb onset hands/arms but I guess bulbar onset may be starting? I go to 1st ALS clinic Thur. I called neuros office this morning. Person I need to speak to not in till 1. I want to make sure I see pulmonary. I had a couple episodes like this July but thought maybe just anxiety. Did mention to neuros. Maybe they should've had me see pulmonary already?

I usually take a xanax to get through night. Didn't last night cause it was 3 am & I thought it would be ok sleeping. I did take 1 at the 5am breathing problem. I wasn't gasping for breath, just felt like breathing comprised. Bipap candidate already? Are they noisy? Asking cause I have to look into assisted living facility & might try to keep cost down by shared room.

Seemed to help to sleep on 1 pillow and cuddle other to chest.

During day I occassionally find myself taking a big gulp of air.

I have no caregiver so it was scary alone. There is a part of me wishes this beast had taken me already.

Thank goodness for this forum & internet so we are informed.

 

[HelenL]

Rita, I'm sorry I can't answer your question, but are you sure it wasn't anxiety-based since you didn't take your meds? You should definitely look into it for your own peace of mind, but I'm hoping that you're "jumping the gun" so to speak.

Regarding the caregiver part of things, do you own your own home? Perhaps you could have someone move in with you and to be there at night until you feel the need to go to assisted living. I've had roommates in my big old house, and some have become very good friends (and some haven't). If you advertise for someone to live rent-free, to assist you in your day to day stuff (helping you clean, shop, prepare dinner), and CHECK into their background. You should also figure out who to make your health care proxy and have them be in the picture to ensure your well being.

 

[abbas child]

Hi Rita,
Definitely take the xanax, as anxiety can cause breathing problems. When you go to Clinic on Thursday, make sure you do have a breathing testing done and see your Pulmonary doctor afterward. A baseline test is done early, and I see you have "probable" in your d x. Chances are very high this episode is stress related. Meanwhile, do sleep on your side rather than your back. And if you still have stomach muscles you're likely exhaling (which is our worst problem...CO2 builds up). Also, if you don't awaken with a headache which disappears quickly once you sit up, it's unlikely you're in trouble during the night.

These are not bulbar onset, but rather are (I believe) "Thoracic". Our breathing problems are mainly from our trunk muscle weakness.

I have a good expectation for your clinic visit, Rita.

Grace to you,
Ann

 

[dragonlibra]

Hi Rita,
Definitely take the xanax, as anxiety can cause breathing problems. When you go to Clinic on Thursday, make sure you do have a breathing testing done and see your Pulmonary doctor afterward. A baseline test is done early, and I see you have "probable" in your d x. Chances are very high this episode is stress related. Meanwhile, do sleep on your side rather than your back. And if you still have stomach muscles you're likely exhaling (which is our worst problem...CO2 builds up). Also, if you don't awaken with a headache which disappears quickly once you sit up, it's unlikely you're in trouble during the night.

These are not bulbar onset, but rather are (I believe) "Thoracic". Our breathing problems are mainly from our trunk muscle weakness.

I have a good expectation for your clinic visit, Rita.

Grace to you,
Ann

I usually,sleep on side. I hate whatever position I fall asleep in I wake up in. My body lacks strength to turnover sleeping so arm hand I'm sleeping on ends up numb.

 

[abbas child]

Oh, Rita, I remember that very well. You may not be ready for my solution, which was a hospital bed through the ALSA Loan Closet. I was able to use it for turning--it has loops on the end of each rail. Later, I learned how to sleep on my back only, using pillows and raising head and foot. Do a search for how to make that work--I wrote about "How I learned to sleep..." in detail. I'd never slept on my back before.

Like you, the side I slept on got numb (legs)...but then I got nerve pain in the under leg--burning pain. That forced me to change.

 

[dragonlibra]

Oh, Rita, I remember that very well. You may not be ready for my solution, which was a hospital bed through the ALSA Loan Closet. I was able to use it for turning--it has loops on the end of each rail. Later, I learned how to sleep on my back only, using pillows and raising head and foot. Do a search for how to make that work--I wrote about "How I learned to sleep..." in detail. I'd never slept on my back before.

Like you, the side I slept on got numb (legs)...but then I got nerve pain in the under leg--burning pain. That forced me to change.

As soon as I get into assisted living I want to inquire into hospital bed. I'll ask at clinic about rx.

I'm in a limbo here trying to tie up work, file for disability, get access to retirement funds, find assisted living facility, go to clinic, etc.

Just wish neuros gave me diagnosed sooner.

 

[dragonlibra]

Hi Rita,
Definitely take the xanax, as anxiety can cause breathing problems. When you go to Clinic on Thursday, make sure you do have a breathing testing done and see your Pulmonary doctor afterward. A baseline test is done early, and I see you have "probable" in your d x. Chances are very high this episode is stress related. Meanwhile, do sleep on your side rather than your back. And if you still have stomach muscles you're likely exhaling (which is our worst problem...CO2 builds up). Also, if you don't awaken with a headache which disappears quickly once you sit up, it's unlikely you're in trouble during the night.

These are not bulbar onset, but rather are (I believe) "Thoracic". Our breathing problems are mainly from our trunk muscle weakness.

I have a good expectation for your clinic visit, Rita.

Grace to you,
Ann

BTW no headaches so far.

 

[dragonlibra]

Hi Rita,
Definitely take the xanax, as anxiety can cause breathing problems. When you go to Clinic on Thursday, make sure you do have a breathing testing done and see your Pulmonary doctor afterward. A baseline test is done early, and I see you have "probable" in your d x. Chances are very high this episode is stress related. Meanwhile, do sleep on your side rather than your back. And if you still have stomach muscles you're likely exhaling (which is our worst problem...CO2 builds up). Also, if you don't awaken with a headache which disappears quickly once you sit up, it's unlikely you're in trouble during the night.

These are not bulbar onset, but rather are (I believe) "Thoracic". Our breathing problems are mainly from our trunk muscle weakness.

I have a good expectation for your clinic visit, Rita.

Grace to you,
Ann

BTW no headaches so far. Big yawns though first thing in morning and late night.

 

[rose]

Rita,

Hopefully after you have your first clinic visit, you'll feel better prepared to meet the new challenges that lay ahead for you. They should take the time to address a lot of the questions you have. It would be good to make a list and make sure anything you put on it has been brought up before you leave the appointment.

As for your scary episode last night, I agree with Ann that it most likely was anxiety disrupting your peace. You know, just because we're asleep doesn't mean our minds turn off. Just think of all the times we've gone to bed, and the next day something we've been trying to figure out has an answer. Subconscious keeps plugging away,and its not always a problem solver, but sometimes, when there is stress, it can be a problem creator.

For me, trouble breathing manifested itself by experiencing tremendous headaches. I would waken in the early hours of the night, like around 3 or 4 am, and, at first I would think I had a migraine, they were that bad. I'd get up, and after being upright for only a short while, less than 15 minutes, probably closer to 5 minutes, I'd feel fine.

But, back to you: They will assess your breathing at your appointment, and most likely will schedule you to follow up with a pulmonologist for a more in-depth breathing tests, so there will be a baseline to compare with down the road.

Good luck to you!

p.s. - about that hospital bed... my tempurpedic adjustable bed is one of the best purchases I ever made.

When you're sorting out your 491K, etc, there is one more suggestion (so I guess this is now officially a "p.p.s.")

There is a law that allows terminally ill people to cash out their life insurance. In hindsight I wish I had done it. I had a small policy through my employer, and chose to let it go rather than pay the premiums once I was no longer working. Your primary doctor responsible for your diagnosis, presumably your neurologist, would need to provide documentation that you are expected to live less than (I think) a year. Do not quote me on the exact expected life span, and, don't let that scare you, its just legalese, many PALS have done this. You can't have too many assets when it comes to dealing with the expenses you may face.

 

[dragonlibra]

Rita, I'm sorry I can't answer your question, but are you sure it wasn't anxiety-based since you didn't take your meds? You should definitely look into it for your own peace of mind, but I'm hoping that you're "jumping the gun" so to speak.

Regarding the caregiver part of things, do you own your own home? Perhaps you could have someone move in with you and to be there at night until you feel the need to go to assisted living. I've had roommates in my big old house, and some have become very good friends (and some haven't). If you advertise for someone to live rent-free, to assist you in your day to day stuff (helping you clean, shop, prepare dinner), and CHECK into their background. You should also figure out who to make your health care proxy and have them be in the picture to ensure your well being.

I'm hoping to find assisted living quickly. For care, nutrition, socializing and hopefully walking so I can preserve that as long as possible.

 

[dragonlibra]

I called to make sure I see pulmonary at clinic.

 

[olly]

hi rita,sorry your having such a hard time with sleeping.
i find i can not sleep on my back,i get a heavy feeling in my chest and its harder to breathe......with one pillow on my side i would not be able to breathe.
i agree a hospital bed may be what you need,till then try a few extra pillows.
i sleep on my side but have my upper chest and head elivated ,i have five pillows and one of those triangle pillows.
hope you can get it sorted at your appointment.
take care.

 

[HelenL]

My Aunt had such bad asthma her whole life she slept in a reclining chair for decades... they finally came up with a drug that worked for her when she was in her 50's... she's now in her late 80's.

 

[KissJ]

Ask the doc for Lexapro or Zoloft that is consistent in your system, not addictive as Xanax. I'm not a doc but have had experience and it has worked wonders for my hubby and I. It is what has helped us to live for now, stay calm, and focus what we need to do now. We are firm on not ruining today thinking about tomorrow.
BUT, it is so hard to be alone! Hubby has a hard time while I am at work. Is there someone you can connect with? A church group? Volunteers? Hubby looked up some friends he hasn't seen in 30/35 years. They visit taking off work, and one is on disability too. He can come during the day and hang out.
You are newly diagnosed. That is when it is the most difficult. Please, take care of yourself. Call the doc and get some meds. I'm praying for you!

 

[dragonlibra]

Ask the doc for Lexapro or Zoloft that is consistent in your system, not addictive as Xanax. I'm not a doc but have had experience and it has worked wonders for my hubby and I. It is what has helped us to live for now, stay calm, and focus what we need to do now. We are firm on not ruining today thinking about tomorrow.
BUT, it is so hard to be alone! Hubby has a hard time while I am at work. Is there someone you can connect with? A church group? Volunteers? Hubby looked uip some friends he hasn't seen in 30/35 years. They visit taking off work, and one is on disability too. He can come during the day and hang out.
You are newly diagnosed. That is when it is the most difficult. Please, take care of yourself. Call the doc and get some meds. I'm praying for you!

I have a great neighbor Nancy who is doing laundry, cleaning house, driving me to clinic & keeping eye on me. I carry my phone around house,in case I fall. I never made a lot of close friends and many are on other side of town. Always busy working, school at night for 10 years, taking & teaching karate for 27 years, then handgun shooting for 10. Peril of being a free spirit only kid.

Thanks my burgh friend.