Exaustion

[CindyM]

I don't know if there is help for what is going on with me lately. I cannot seem to get enough sleep. I am just too tired to move most of the time. I stay in bed all weekend and sleep during my lunch breaks and go to bed the minute I get home. I expect to lose weight soon because, given a choice of sleep or eat, I choose sleep. I use a CPAP at night and have had apnea for years. THis feels different. With apnea I feel refreshed after a nap. Now I just need another nap. I even dread the weekends because my family wants to do stuff. Last Sunday I entertained company while lying flat on the sofa.

Anybody experience anything like this? Cindy

[Jamiet]

Yep...........

[Al]

Time for a sleep study I'd say. Maybe Cpap needs to be traded for a Bipap. That's what happened to me.
AL.

[CindyM]

I guess I thought I'd feel SOB if I needed a PIPAP.

[Al]

Sometimes but not always. You might not be getting rid of the CO2 as you sleep. Do you wake up feeling a little headache as well?
AL.

[duplinwino]

That's what I was thinking, time to retitrate your CPAP to a higher pressure or go to BiPAP. (I don't deal with this personally with my husband, but work in a sleep lab).
Ashley

[CindyM]

I do have a headache all the time! Thanks AL and Ashley. I just had a sleep lab test done in May but feel like I never recovered from that Saturday we spent at the Cape 2 weeks ago. All I did was a little walking around. :( It certainly wiped me out! Thanks for the tip. Cindy

[landscape]

My husband had no shortness of breath & no headache in the mornings but was exhausted all the time. At the last clinic his CO2 levels were high (55) and he was sent for a sleep study the following night and was on a Bipap the day after.

Unfortunately all the masks he has tried leak and thus every two hours the mask starts its chorus. So now we are both exhausted. But we hope for another mask this week.

[Al]

I have a Res Med Ultra Mirage full face mask. It works for my sort of large (hat size 7 1/4) round head and face.LOL.

[Sammantha]

I am like that, i have always been a sleepy person since i was a kid....But about three years ago i started to fall asleep while driving, or when i would sit down at work i could not keep my head up......I would have my eyes half closed and would already be dreaming!! I have never had a sleep study but i take provigil for fatigue, it does not make your body feel better, but it does turn off the transmitters that say say "you must sleep now!" So now i can rest my body without sleeping the day away and i dont fall asleep at work when i am sitting..... I only take one a day, so that by the time i get home i am sleepy.. If it take it in the afternoon too, like i am suppose to i have a hard time falling asleep at night... The best thing about it, is for me it had no side effects and beleive me i am allergic to everything!! There are no heart palputations or hormone changes because it does not affect that part of your body, it deals with the brain and its transmitters....... I highly suggest it....

[CindyM]

Hi Sam- I have fallen asleep at odd times for years. At the sleep lab they found I am borderline narcoleptic and have apnea. But the CPAP always worked. Interesting that they did not send you to a sleep lab. Cindy

[patricia1]

Hi Cindy I was feeling that way as well, and I started B12 shots every two weeks and I diffently feel the difference However, I think it is time for you to reevaluate your breathing maybe a Bipap will help. Take care Pat

[Tom]

Cindy,
Mom in law has a Bi-pap, but we think we'll need to re-adjust soon. She's been doing well for a while, but every now and then, she can't seem to catch her breath. Hopefully, she just needs a pressure adjustment. I hope yours is that simple. Take care. Tom

[Sammantha]

Hi, Cindy...... I told my doc for years about my severe fatigue and sleep issues, i even left his offic in tears because i was scared of driving and falling asleep... He chuckled and said that i could come in for vitamin therapy injections... That was that..... I feel like if i dont freak out and throw a temper tantrum that docs think i am there just to chit chat or something..... Seven years ago i got the depo shot and almost blead to death because i had a bad reaction... I called my gyno at the time and told them how i was bleeding a lot and they were like, oh thats normal you'll be okay.. Then my husband found me passed out and i had to have an emergency DandC to stop the bleeding, the doctor said that if i had gone another day i would have had to have a blood transfusion.....Do men deal with this kind of nonchalent/indifferent attitude from doctors too?? I wonder?

[hboyajian]

Cindi, Others have said this, but I'll add my 2 cents. Get sleep study and ABG test (arterial blood gasses) to get a thorough idea of what is going on. If the carbon dioxide level is rising in your blood, this can cause severe fatigue and it is critical to do somethign about it as soon as possible.

[CindyM]

Thanks Holly and Sam and everybody! I have one more question: would high carbon dioxide levels cause constant headache and nausea? I can cure the nausea with anacids but the headache never goes away.

Sam- that's an awful story about your doc's insensitivity. Hope you found a better one by now!

Thanks everybody for all your help. Cindy

[hboyajian]

Hi Cindi, All I know about this is anecdotal from my dad's experience. He did have some stomach upset, but that may have been from adjustment to the PEG tube feedings and/or some dehydration after a widespread power outage in the region and having to eat baby cereal mixed with cold water and have non-warmed feedings with the tube. I have heard that headache can be a symptom of elevated CO2 levels. My dad did not complain of this, but he rarely said anything about pain, even when clearly injured (like after tripping and banging his head on a brick wall). He had a tremendous pain threshold, and if he said something hurt, we knew for any of us it would be excruciating. His main symptom from the co2 excess was exhaustion.
Maybe I am way off here, but I think this could be serious enough that you need see your doctor ASAP. Maybe it is something else (low iron anemia comes to mind?), but if your symptoms are caused by elevated CO2 it means you need breathing assistance because your lungs are not effectively getting a full breath out. ALS affects people in different areas of the body in a variety of progressions. My dad lost breathing ability before he had completely lost mobility in his legs and arms. I know you don't have a diagnosis yet, so it could well be the cause is something completely different, but I guess I get freaked out when I hear about increasing exhaustion because of losing my dad so quickly when he experienced this. Sorry if I'm ranting and being unreasonable here. Holly

[CindyM]

Holly-your post made me teary-eyed. thank you for caring so much and so sweetly. I've made up my mind to call the doctor tomorrow. Maybe there is some benign explanation!Thanks again, Cindy

[puzzled36]

Cindy, If you have had excessive daytime sleepiness and headaches prior to weakness, MND symptoms you might look into myotonic dystrophy. It shares some of the sx of ALS (weakness, spacticity, cramps, wasting, slurred speech) but also daytime sleepiness, headaches, gall bladder issues, etc. Just a thought.

Gina

[Sammantha]

Headaches and nausea are warning signs of carbon monoxide poisoning, so it makes sense that too much carbon dioxide in the system can cause this problem. Can doctors check blood oxygen levels?? Would that tell if someone who had ALS had too much carbon dioxide in their lungs??

[quadbliss]

Hi Sammantha,

O2 and CO2 levels are two different things, although they often correspond. Low O2 means you are not bringing enough oxygen into your body. High CO2 means you are not sufficiently expelling gasses from your lungs. There is a blood test for CO2.

Mike

[CindyM]

Well I went to the respiratory therapists yesterday, on my own, with out a referral. She checked my CPAP to see if it was working properly (I'd dropped it and thought that might be a problem.) I now have another type of CPAP which will adjust the flow according to my needs, and measure both intake and out take. She said if I didn't get rid of the headache and nausea to call my doc right away. But after using the new CPAP last night I do feel better. Not completely out of the woods, but better. So I am going to give it another day.

Funny, I used to hate going to the docs because it once was a waste of time. Now I don't want to hear what they may have to say. But don't worry guys- I know I can't put it off forever!:-D :-D Cindy

[MtPockets]

Hi, Cindy...... I told my doc for years about my severe fatigue and sleep issues, i even left his offic in tears because i was scared of driving and falling asleep... He chuckled and said that i could come in for vitamin therapy injections... That was that..... I feel like if i dont freak out and throw a temper tantrum that docs think i am there just to chit chat or something..... Seven years ago i got the depo shot and almost blead to death because i had a bad reaction... I called my gyno at the time and told them how i was bleeding a lot and they were like, oh thats normal you'll be okay.. Then my husband found me passed out and i had to have an emergency DandC to stop the bleeding, the doctor said that if i had gone another day i would have had to have a blood transfusion.....Do men deal with this kind of nonchalent/indifferent attitude from doctors too?? I wonder?

Yes we do. It really hurts when one of the docs is your own son. My son has been an ER Doctor for over 6 years now and he still says I do not have ALS. Even though the muscle biopsy proved I do. The neurologists said I do and it is progressing as expected. He's still in denial. I can understand that.

He expects me to jump up out of this wheelchair and go work on his car, go fishing or whatever. Out of touch with reality.

I had one neurologist years ago tell me that I should study the mystics in India. They could control pain with their minds. Time for a ball bat adjustment doc? :-D

God Bless
Capt AL

[CindyM]

Hey MT- your son can't deal because he loves you. My sister said this weekend that she expects Mom to pull through and get up out of bed any day now. Hospice, however, says it is time to call the out of state relatives.

When I read Mom's correspondences, I found out how much sis loved and relied on the Mom who is now so fragile. Sis is in denial, and I bet your son is too! Cindy

[patricia1]

I have the same problem with my mom and daughter They insist I cant have ALS I guess they are in denial because they love me and they are scared Pat

[hboyajian]

I was in denial for 2 weeks, until I went with my dad to the doctor, viewed all the test results, abnormal EMG included, and saw the fasciculations all over my dad's body...arms, back, legs, neck. I could see for myself how weakened his muscles had become for the last several years. He had been told it was osteoporosis, because it started in his neck and back. This never squared with me, because his bone scan didn't confirm that. I thought for 2 years it was a muscle/structural injury from a fall he'd had, I just hadn't thought about motor nerve damage being the root cause, and had never heard the term ALS before in my life. It might help if your family members can hear about the illness directly from the doctor.

Cindy, I am really glad you went to the respiratory therapist with no dinking around trying to get a prior referral from a GP. It sounds like your new CPAP will help solve the problem. Yeah!! That's great. You had a sense it was breathing related and you were right. Don't hesitate to go back right away if you have any more difficulty. Holly

[CindyM]

THanks Holly. It feels great to wake up in the morning ready to get out of bed! Cindy