Re: Oxygen to help heal our body

[Guest guest]

Often our oxygen levels are not tested lying down. It seems to be an

extra chore for docs to order a lying down test if you're not in for a

sleep study . When I had mine done they finally understood why I woke

up with incredible CO2 (carbon dioxide) retention headaches. Higher

than normal levels point to breathing abnormalities and mine was off

the charts as my diaphragm is partially paralyzed.

Now I sleep on a slant with my body from the waist tilted up about

10/15 degrees and no more headache. I simply was not breathing out

enough of the bad gases and the build up caused terrible headaches

that would go away when I got up and my diaphragm had the benefit of

gravity.

If I sleep flat I still wake up with them and it's been 25 years since

I was first tested. The doc put me on theophylline back then which was

a terrible drug for me. It made me nauseous every day, I felt wired,

and my eye doc thinks it might have contributed to early cataracts.

Now I only need Symbicort at night, my automatic bed, and I'm fine.

I also find that when I tape too many shows (yes, I still tape) " I

simply must watch " and stay awake until 1 a.m. watching TV, my daytime

hours become really difficult and I hurt more. No TV show is worth my

health. It's lights out at 12 no matter what I think I'm missing.

Ron wakes me up at 9 (he's a very early riser) and I'm in the office

by 11. At my age I'm okay with not doing mornings. I put in five or

six hours a day and am really tired by 5 p.m. All of my meetings or

appointments are scheduled for 1:30 in the afternoon. At 6 I get

horizontal under a super electric throw I got online from Hammacher

Schlemmer in the fall to read the newspaper, watch the news (I

usually fall asleep) and from 7 till 9 I read, watch TV or work if I

have something pressing, and then get ready for bed and a bit more TV

with Ron and the news at 11 and bed for the night.

I never just sit to read or watch TV, I lie down. Sitting hurts so

much I can't concentrate. Hard chairs are torture for me. Even a soft

couch hurts, I need to lie down. My scooter seat is custom made so it

is soft and doesn't hurt.

I rarely go out at night. Maybe once a month as I'm VP of the local

art association and our pres. resigned so I'm it. I can't push myself

any harder or I fall apart. Stress really messes me up and makes the

pain less tolerable. Lack of sleep is stress as far as my old bod is

concerned.

Sleep really matters when you are working with about half the muscle

mass of normal folk and your breathing isn't up to scratch.

L.

, 68, CMT2a, in beautiful snow covered Southern Ontario, Canada

On 6-Mar-11, at 12:24 AM, wrote:

> We all need to be screened by overnight oximetry to see where our o2

> levels are during the night, we screen everything else, why not

> something so vital? If we are below 89 for more than 5 min during

> the study, medicare and insurance companys will pay for it knowing

> it is needed and vital to our health.

>

> Oximetry during the day, while awake is just part of a screen, its

> as we age, fight disease things happen at night, snoring is also

> something that can happen as we age or gain weight, sleep is the

> only way that our bodies can heal or rest and restore its self, if

> we are not getting enough oxygen at night we are on that slippery

> slope of decline.

>

> If you like to take deep breaths during the day and feel how much it

> helps, think about not getting enough at night putting the body in

> the fight or flight mode all night long, not much rest is going to

> happen. Yes, it's simple and basic yet so over looked.

>

> Kay

>

> Living On The Beautiful Oregon Coast, USA

> 59, Wow! I'm getting up there!!! 5 Family members With CMT1A

> Living alone, using wheel chair, splints, Bipap because of severe

> breathing problems at night.

> One family member who passed away because of CMT

> I believe it is, what it is... so living in a state of " LOVE " is

> what brings me joy, peace, healing, and more love! ;-)

>

>

>

[Guest guest]

Crabtree:

When I'm stressed and don't get enough rest. I feel very tired in my diagaphram

sometimes during the day. Also In these periods with infection, stress,

tiredness etc. I wake up at night feeling like I can't breath probably

especially when lying down and feel very much like I have to throw up.

I have contacted the center where they the know CMT but they haven't replied my

mail. Do you think it could have something to with CMT?

Lately there has been so many calls to my doctors, I sometimes wonder if they

really belive me.

Marika, CMT 1B, Denmark

[Guest guest]

Marika,

Yes to your question.

C.

On 6-Mar-11, at 3:12 PM, Marika Fahlén Christensen wrote:

> Crabtree:

>

> When I'm stressed and don't get enough rest. I feel very tired in my

> diagaphram sometimes during the day. Also In these periods with

> infection, stress, tiredness etc. I wake up at night feeling like I

> can't breath probably especially when lying down and feel very much

> like I have to throw up.

>

> I have contacted the center where they the know CMT but they haven't

> replied my mail. Do you think it could have something to with CMT?

>

> Lately there has been so many calls to my doctors, I sometimes

> wonder if they really belive me.

>

> Marika, CMT 1B, Denmark

>

>

>

[Guest guest]

Marika,

Yes I feel it has to do with CMT!!!  My doctor let me down for over six years

and my body wasted away.. even with a bi-pap because my setting were way to

low!  My doctor just told me to raise my bed along with a Bi-pap.

 

 Again, ckecking sats during the daytime, while the brain tells you to take

breaths is far different than during the night when the body struggles to get

enough air. To monitor daytime sats you can purchase a pulse ox for around

$60-$100 which ...will tell you what you want to know for daytime use, however a

Resp special company like Lincare has RT's who will come for 0 charge and do a

full night of screening to let you know if your c pap is giving you what you

need of o2. Many find that a c pap is not enough and o2 needs to be added to

bring o2 sats to 89. Such a easy screen, no charge, no pain and so much info.

 

Here is what I went through...

 

 Do to loss of oxygen at night… I didn’t realize what was happening to me

for approx the past 6 years.  maybe longer because I found out the B-pap

numbers were set to low from the beginning.    Little did I know that during

" CMT Awareness Week "   When I was trying to help others from dying like my

sisiter did... was happening to me...   Like my sisiter, I believed the doctor

that there was nothing more they could do.  When low on oxygen... you don't

think clearly!!! I never want this to happen to me again, or anyone else!!!

 

As I look back, I feel the lack of oxygen and grief in my life, such as going

through a divorce, dad with cancer, mom needing me for emotional support, dad

dying, my sister dying, and my own health deteriorating…  all kept me

in a constant fog.  . 

 

..

 1996 Dr Nottingham put me on a bi-pap to give my diaphragm a rest at night and

hoping to slow down the deteriorating, and prolong my life.

 

2004  I was referred to Dr Bluem.  I had a sleep study done, and my settings

were 12/6. I just found out later the settings from that sleep lab in 04, could

have gone as high as 17.  My body was deteriorating, I was gaining weight,

couldn't think as well, and my feet were so swollen.

 

2005 my body was deteriorating faster, my feet became very swollen, I was having

more problems breathing, I gained more weight and I had to cut way back on work

because my mind was in a fog. and  I had to  start using  a  electric

wheelchair.

 

In 06,  I saw doctor Bluhm about having breathing problems, he upped my

settings to 13/6 without a sleep study.  My body was rapidly deteriorating… I

feel a lot due to low oxygen levels, but he did nothing.

 

In 07,  I talked to doctor Bluhm again because I felt like I was still

suffocating, my muscles burned and my neck and shoulders were in constant pain,

I had heart palpitations, waking up all night feeling like I was a suffocating,

tremors, foggy mind, and panting …which I could only correct t by sitting up.

I think I had given up for any help from him… I was not thinking as sharp and

I couldn’t figure out why.  My feet were still very swollen and I was tired

… all these symptoms I feel from not getting enough oxygen.  During that appt

Dr Bluhms advice was, again, to raise the head of my bed. 

 

4/12/09  I had a blot clot and I had breast cancer surgery.  I talked with my

surgeon about my breathing problems. Dr had me see Dr Riddick.  I told

Dr Riddick about my breathing problems.  He told me I had to go back to Dr Blum

for those issues.  He was only an ER doctor.  I have later learned blood

clots and cancer can be caused by lack of oxygen.

 

 In 08/ 09/   I saw Dr Bluhm hoping for help. I explained what was going on

and all he advised was stay on the Warfrin and raise my bed.  At this point I

was afraid to lay down even with a raised my bed because I would slip down the

bed and wake up feeling like I was suffocating…. along with all prior

systems. 

 

 10/1/10 Because I felt I was getting close to dying from lack of breathing at

night… I saw a new doctor, Dr Capp…who ordered a sleep lab ASAP.

 

About a month before my sleep lab I had been getting a very painful pain on my

right side, back area, and under my arm pit… it started about 5 to 10 minutes

after I laid down.  After a week of being on my new setting the pain is gone

 

After the sleep lab my settings were changed to 17/10, the day after the sleep

lab I felt rested with no pain.  The night after my new settings, all, but

weakness, the pain in my back, and my thinking in a fog …  was nearly

gone. 

 

 My mind is still not close to what it was, and my body is very weak, but I am

feeling a little stronger every day. My voice also got stronger.

 

Now that I am on a small amout of Oxygen that bleeds into my Bi-pap... after 4

days I feel like a new person!

 

 

Kay

Living On The Beautiful Oregon Coast, USA

59, Wow! I'm getting up there!!! 5 Family members With CMT1A

Living alone, using wheel chair, splints, Bipap because of severe breathing

problems at night.

One family member who passed away because of CMT

I believe it is, what it is... so living in a state of " LOVE " is what brings me

joy, peace, healing, and more love! ;-)

[Guest guest]

The nurse puts a thing on my thumb and it measures the oxygen.....How accurate

is that? Because I'm short of breath I'm a very shallow breather..dont know if

it is my H.P. pills or CMT. Sometime my voice seems worn out.

Geri

[Guest guest]

I apologize if I am asking something that may be already known but is this a

frequent symptom of CMT? My daughter who has type 1A has been waking up with

headaches for a while now and we were wondering if it is related to something

with her sleep.(Snoring, etc) Thank you in advance for any info!

Barb

Oxygen to help heal our body

We all need to be screened by overnight oximetry to see where our o2 levels are

during the night, we screen everything else, why not something so vital? If we

are below 89 for more than 5 min during the study, medicare and insurance

companys will pay for it knowing it is needed and vital to our health.

Oximetry during the day, while awake is just part of a screen, its as we age,

fight disease things happen at night, snoring is also something that can happen

as we age or gain weight, sleep is the only way that our bodies can heal or rest

and restore its self, if we are not getting enough oxygen at night we are on

that slippery slope of decline.

If you like to take deep breaths during the day and feel how much it helps,

think about not getting enough at night putting the body in the fight or flight

mode all night long, not much rest is going to happen. Yes, it's simple and

basic yet so over looked.

Kay

Living On The Beautiful Oregon Coast, USA

59, Wow! I'm getting up there!!! 5 Family members With CMT1A

Living alone, using wheel chair, splints, Bipap because of severe breathing

problems at night.

One family member who passed away because of CMT

I believe it is, what it is... so living in a state of " LOVE " is what brings me

joy, peace, healing, and more love! ;-)

[Guest guest]

Geri,

You need to do a test while sleeping. Mine are always good when sitting up.

Lincare does it for free.

Kay

Living On The Beautiful Oregon Coast, USA

59, Wow! I'm getting up there!!! 5 Family members With CMT1A

Living alone, using wheel chair, splints, Bipap because of severe breathing

problems at night.

One family member who passed away because of CMT

I believe it is, what it is... so living in a state of " LOVE " is what brings me

joy, peace, healing, and more love! ;-)

[Guest guest]

Barbara: Read my last post - it is all about waking up with headaches.

On 6-Mar-11, at 9:43 PM, Barb Howe wrote:

> I apologize if I am asking something that may be already known but

> is this a frequent symptom of CMT? My daughter who has type 1A has

> been waking up with headaches for a while now and we were wondering

> if it is related to something with her sleep.(Snoring, etc) Thank

> you in advance for any info!

>

> Barb

>

> Oxygen to help heal our body

>

> We all need to be screened by overnight oximetry to see where our o2

> levels are during the night, we screen everything else, why not

> something so vital? If we are below 89 for more than 5 min during

> the study, medicare and insurance companys will pay for it knowing

> it is needed and vital to our health.

>

> Oximetry during the day, while awake is just part of a screen, its

> as we age, fight disease things happen at night, snoring is also

> something that can happen as we age or gain weight, sleep is the

> only way that our bodies can heal or rest and restore its self, if

> we are not getting enough oxygen at night we are on that slippery

> slope of decline.

>

> If you like to take deep breaths during the day and feel how much it

> helps, think about not getting enough at night putting the body in

> the fight or flight mode all night long, not much rest is going to

> happen. Yes, it's simple and basic yet so over looked.

>

> Kay

>

> Living On The Beautiful Oregon Coast, USA

> 59, Wow! I'm getting up there!!! 5 Family members With CMT1A

> Living alone, using wheel chair, splints, Bipap because of severe

> breathing problems at night.

> One family member who passed away because of CMT

> I believe it is, what it is... so living in a state of " LOVE " is

> what brings me joy, peace, healing, and more love! ;-)

>

>

[Guest guest]

Barb,

Your daughter needs to be screened by overnight oximetry to see where our o2

levels are during the night.

Kay

Living On The Beautiful Oregon Coast, USA

59, Wow! I'm getting up there!!! 5 Family members With CMT1A

Living alone, using wheel chair, splints, Bipap because of severe breathing

problems at night.

One family member who passed away because of CMT

I believe it is, what it is... so living in a state of " LOVE " is what brings me

joy, peace, healing, and more love! ;-)

> I apologize if I am asking something that may be already known but

> is this a frequent symptom of CMT? My daughter who has type 1A has

> been waking up with headaches for a while now and we were wondering

> if it is related to something with her sleep.(Snoring, etc) Thank

> you in advance for any info!

>

> Barb

>

> Oxygen to help heal our body

>

> We all need to be screened by overnight oximetry to see where our o2

> levels are during the night, we screen everything else, why not

> something so vital? If we are below 89 for more than 5 min during

> the study, medicare and insurance companys will pay for it knowing

> it is needed and vital to our health.

>

> Oximetry during the day, while awake is just part of a screen, its

> as we age, fight disease things happen at night, snoring is also

> something that can happen as we age or gain weight, sleep is the

> only way that our bodies can heal or rest and restore its self, if

> we are not getting enough oxygen at night we are on that slippery

> slope of decline.

>

> If you like to take deep breaths during the day and feel how much it

> helps, think about not getting enough at night putting the body in

> the fight or flight mode all night long, not much rest is going to

> happen. Yes, it's simple and basic yet so over looked.

>

> Kay

>

> Living On The Beautiful Oregon Coast, USA

> 59, Wow! I'm getting up there!!! 5 Family members With CMT1A

> Living alone, using wheel chair, splints, Bipap because of severe

> breathing problems at night.

> One family member who passed away because of CMT

> I believe it is, what it is... so living in a state of " LOVE " is

> what brings me joy, peace, healing, and more love! ;-)

>

>

[Guest guest]

This is called a pulse oximeter. It works by shining two lights of various

colors onto the skin and measuring the reflected light. The reflected light is

the light that is not absorbed. Oxygenated blood is slightly more red than

deoxygenated blood, which is more blue, therefore oxygenated blood reflects more

light in the red spectrum than deoxygenated blood.

From my experience, these are very accurate devices. Even though it says your O2

levels are normal, this doesn't rule out a lot of things! You may have to work

harder to get the same amount of oxygen, leaving you worn out, but with a good

O2 level.

http://en.wikipedia.org/wiki/Pulse_oximeter

A quote from this source:

Oximetry is not a complete measure of respiratory sufficiency. A patient

suffering from hypoventilation (poor gas exchange in the lungs) given 100%

oxygen can have excellent blood oxygen levels while still suffering from

respiratory acidosis due to excessive carbon dioxide.

It is also not a complete measure of circulatory sufficiency. If there is

insufficient bloodflow or insufficient hemoglobin in the blood (anemia), tissues

can suffer hypoxia despite high oxygen saturation in the blood that does arrive.

>

> The nurse puts a thing on my thumb and it measures the oxygen.....How accurate

is that? Because I'm short of breath I'm a very shallow breather..dont know if

it is my H.P. pills or CMT. Sometime my voice seems worn out.

>

> Geri