ALS symptoms

[Donnell1958]

I was diagnosed with ALS on August 16. 2014. I have been having night sweats and I wake up yawning all day. I know that I change position when I sleep due to the pain I am feeling. Is anyone else experiencing these things?

 

[affected]

So sorry to welcome you to our elite club, we never really like gaining new members, but you have found a place of great support.

Have you had your breathing checked out? It sounds to me like CO2 build up at night.

There's lots can be done to help, but tell us a little about how you sleep - do you sleep partially sitting up, do you have a hospital bed, do you have someone to help reposition you or can you do this yourself? Do you wake with headaches?

 

[Donnell1958]

Hi, I reposition myself but I struggle. I do wake up with headaches also. I have a ventilator but when I have used it, it gives me to many rescue breaths so I don't like using it, I feel like I am suffocating. I have hot flashes too but this is different.

 

[affected]

It sounds like CO2 buildup to me, all the classic symptoms.

It also sounds like you need adjustments to the bipap (you are using the ventilator as bipap?). Many people also say it takes some time to adjust to the bipap, so there may be a combination of needing adjustments to settings, and for you to adjust to using it.

We have a couple of people here that are very knowledgable about doing this, so they will very likely chime in. My husband never used bipap so I don't understand the settings like others do.

Do you sleep laying flat or propped up? Breathing is far harder when laying flat once your diaphragm is being compromised.

Do you attend a clinic an have access to a pulmonologist there?

 

[gooseberry]

Donnell1958, You should contact the respiratory company that set up your machine or your doctor. It is not properly set up. When the company comes out, have them demo the system with you sitting up and laying down. Make sure you are totally comfortable. If you have a trilogy type machine, they can set up different programs for positions...watching tv and sitting vs sleeping. They can change the length of a breath, length of an exhalation, time between breaths, how much volume of air you get, etc. Dont settle for your situation, it can be much better! You will feel much better and have more energy. Steph

 

[dalvin]

Also, make sure it's a bipap and not a cpap. With a weakened diaphragm you will have trouble exhaling against a cpap

 

[Donnell1958]

Hi Tillie, I sleep on my right side usually but I have to switch to different sides due to pain. I go to the Sacramento ALS clinic where I get checked by many different doctors. I have a portable ventilator machine.

 

[Donnell1958]

Hi Dalvin, I am using a portable ventilator machine.

 

[Donnell1958]

Hi Gooseberry, I have a portable ventilator machine. I have had the nurses out several times but they don't understand that I don't need 4 rescue breaths in a row.

 

[dalvin]

Donnell, saying portable ventilator machine doesn't really tell us anything. Bipaps and Cpaps are ventilator machines and can be portable too. It's important to for you to know what type it is. The cpap has one constant pressure and the bipap has two, one for inhaling and a lower one for exhaling.

 

[dalvin]

Also, nurses should not be adjusting it. That's a job for a respiratory technician