Re: MITO: air hunger/ cofactors

[Guest guest]

,

I just asked Dr. Cohen pretty much the same question when I saw him in March. He said it is caused by a energy crisis and just not do as much. Well I don't do much of anything and thats literal. Just walking through the kitchen or standing up longer than a minute I start exibiting symptoms of air hunger, flushing, increased heart rate, etc. It's unnerving. He said not to worry about it just to treat the symptoms. Not much help I know...sorry!

[Guest guest]

Thanks bunches!

Re: MITO: air hunger/ cofactors

,

I just asked Dr. Cohen pretty much the same question when I saw him in March. He said it is caused by a energy crisis and just not do as much. Well I don't do much of anything and thats literal. Just walking through the kitchen or standing up longer than a minute I start exibiting symptoms of air hunger, flushing, increased heart rate, etc. It's unnerving. He said not to worry about it just to treat the symptoms. Not much help I know...sorry! Please contact mito-owner with any problems or questions.

[Guest guest]

,

I also spoke with Cohen about this issue. For a while it just

seemd as though was gasping for air after exerting energy. He

said that this is normal in Mito and not to worry about it. How can

you not? It is not caused (I don't think) by anxiety, but it causes

anxiety. If you don't feel as though you are getting enough air than

your anxiety level rises. If it's a chronic problem, I would have the

doctor do a pulse ox during this time and see if there is truly

enough oxygen circulating in the blood. That would be the big

concern. They won't give O2 (I've been told) for these episodes

unless the O2 level is very low routinely.Hope this helps!

Dawn Myers

[Guest guest]

I apologize for not knowing all the information on your child, before I comment. My son, ph, has been diagnosed with an enlarged aorta and ventricle on the left side of his heart. The doctor has said that the strength of his heart is great, but because of this enlargement, some signs to watch for would include difficulty breathing and shortness of breath. We have not experienced any of this yet to be able to compare is this is the same as your child. Have you had his/her heart checked out? This was determined by an Echo and EKG.

Deidra

Mom to la 5 & ph 2

-----Original Message-----From: thefiveofus02 Sent: Wednesday, May 07, 2003 5:12 PMTo: Mito Subject: Re: MITO: air hunger/ cofactors, I also spoke with Cohen about this issue. For a while it just seemd as though was gasping for air after exerting energy. He said that this is normal in Mito and not to worry about it. How can you not? It is not caused (I don't think) by anxiety, but it causes anxiety. If you don't feel as though you are getting enough air than your anxiety level rises. If it's a chronic problem, I would have the doctor do a pulse ox during this time and see if there is truly enough oxygen circulating in the blood. That would be the big concern. They won't give O2 (I've been told) for these episodes unless the O2 level is very low routinely.Hope this helps! Dawn MyersPlease contact mito-owner with any problems or questions.

[Guest guest]

Perhaps he means nutrients that would be called coenzymes, in other words, nutrients that combine with enzymes to form complete enzymes (like B1 etc.). Basically, I would take that to mean that other than providing nutrients there is nothing else he can think to do to possibly help.

I agree with checking the blood oxygen level just like for asthma and giving extra oxygen if needed.

And I also agree we do get anxious when we can't get enough air which of course makes one uptight literally and constricts things and then we get even less air compounding the problem-yikes!

Once again I say this happens to me oftentimes when I ingest something I can't metabolize and I take an anti-histamine and it resolves the issue. It also helps if my heart goes a hundred miles an hour from the same reason.

MITO: air hunger/ cofactors

Hey guys!

Ok I asked 's mito Dr. to speak to Bruce Cohen about air hunger issues. A while back she said these issues could only happen because of anxiety. Today she tells me she has talked to Bruce and that it does sometimes happen but he does not have any suggestions for treatment other than cofactors. Cofactors....what are cofactors?

I also know others here that rest and use oxygen when this happens with their kids, so what do yall think? Any thoughts?

Thanks, your great as always!

Horsley Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Dawn,

I did ask for a pulse Ox machine but the Dr refused to do it. She said it would not work right with 's tics

Sooooooooooooooooooooo

Have a great day!

Horsley

Re: MITO: air hunger/ cofactors

, I also spoke with Cohen about this issue. For a while it just seemd as though was gasping for air after exerting energy. He said that this is normal in Mito and not to worry about it. How can you not? It is not caused (I don't think) by anxiety, but it causes anxiety. If you don't feel as though you are getting enough air than your anxiety level rises. If it's a chronic problem, I would have the doctor do a pulse ox during this time and see if there is truly enough oxygen circulating in the blood. That would be the big concern. They won't give O2 (I've been told) for these episodes unless the O2 level is very low routinely.Hope this helps! Dawn MyersPlease contact mito-owner with any problems or questions.

[Guest guest]

Hello All...........

Here is the dysautonomia woman again....YIKES!

But IT IS possible that there might be some low blood pressure or

rapid heart rate issues going on here.....related to the air hunger.

Both are autonomic features that can mimic mito energy oxygen

deprivation. I'm not suggesting that mito is not the cause, I believe

that mito is the primary cause of injury to the ANS, that can cause

this secondary oxygenation complication. In addition to injury to the

lungs. But in some cases, this condition can be medicated.

My prayers and hope in posting this is to spread the word of

POSSIBILITIES. Perhaps this info could give a mito person a better

quality of life.

When you mention your activity levels, and that just the act of

walking across the kitchen floor can cause these symptoms, I relate

completely. That is exactly how I feel. Please take you or your

little one's blood pressure and pulse IMMEDIATELY while they're STILL

standing as you witness this type of air hunger, dizziness, etc. It

would be well worth the investment of a blood pressure monitor kit. I

cannot STRESS this enough. It could be a secondary condition that is

medically referred to as Orthostatic Hypotension.

In spite of my pacemaker.........multiple heart

surgeries........brady, tachy, svts, and pvts for the past 8

years....the non-autonomic docs will dismiss my symptoms as

anxiety......STILL............until they take my orthostatic blood

pressure. Then they become believers. Just last week, I received

an, " Oh, Mercy " from a new neurologist, upon witnessing the fall in

my blood pressure.

I realize, with mito, energy cells cause the lack of oxygen. But

as a result of mitochondrial damage to the Autonomic Nervous System

itself, autonomic damage can, by itself, cause oxygen deprivation.

The lack of proper blood pressure flow and heart rate regulation, can

cause this problem, which are both controlled by the ANS.

If you or your child has mito........there is a possibility that

his/her autonomic system has been damaged by diseased mitochondrial

cells. The brain stem/autonomic nervous system is a target because of

high energy cell needs. Yet, if the portion of the ANS that controls

the blood pressure regulation is affected, Orthostatic Hypotension

may become a secondary disorder.

The simple act of standing upright or sitting with your legs

dangling, can cause the blood to pool.(You may recognize swelling,

discoloration, and painful extremities.) This pooling with OH occurs

in the feet, legs, arms, and hands. It can cause much needed

oxygenated blood to be pulled away from the vital organs, just by the

act of standing upright. This can cause the need for oxygen to the

lungs (cool air hunger), heart (rapid heart rate), and brain

(lightheadedness, nausea, and dizziness - and in rare occasions one

can black out/faint, if oxygen doesn't arrive in time - although one

might normally recognize these symptoms, then sit or lie down before

the latter occurs).

Say that you have water going through a hose (blood in the vein)

that's attached to a house (brain stem (autonomic)). You turn the

faucet almost all the way off (the brain stem -autonomic signals

dysfunction). You have an adjustable sprayer on the end of the hose

(heart with heart rate racing abilities). If the hose is lying flat

on the ground (you're lying down), the water will continue to trickle

out, as the sprayer continues its need for water. Then you pick the

hose upright(you suddenly stand up), since you have not turned the

faucet back on as high as it needs to be (your sensing ability

doesn't get the signals - autonomic signals are lost to damage), the

water that is left in the hose will fall back downward into the

portion of the hose that is closest to the ground (blood pooling in

the veins down into the extremities - feet, hands). The sprayer will

continue to attempt to spray but not much, if any water can come out,

because it has fallen back down toward the force of gravity. If kept

in that position swelling of the hose could occur in that pooled

area. Then you turn the sprayer on a bit higher, then higher (the

heart rate senses the need to get oxygenated blood into the organs so

the heart rate speeds up -sometimes WAY up - in an attempt to pull

the blood up manually to compensate for the lack of the blood

pressure) forcing the water up against gravity, up where you need it

(to the organs that cannot function without the oxygenated blood).

In the given scenario, the natural way to get the water out of

the hose would be the combination of several processes. Allow a

constant stream of water to be pulled up with the sprayer(heart

pumping), in combination with another mechanism that manually

squeezes the hose to force the water upward to get it out of the

lower portion of the hose (vein compression). As in the healthy

person, their blood pressure has a squeezing mechanism wired into the

autonomic system that tells the muscles, veins, and vein valves

(spaced all along the veins) to squeeze the vein full of blood and

adjust the squeeze pressure to the demand of the activity. With the

partial failure of this portion of the autonomic nervous system, the

oxygenated blood doesn't reach all of the vital organs on time.

I am medicated for this problem. Without this medication I would

not be able to walk, stand, or sit for any length of time. I used to

score poorly on Pulmonary Function Tests. I now get the oxygen where

it needs to be......with the exception of rare occasions, I no longer

experience air hunger. The medication compresses the veins for me,

allowing the oxygenated blood to get to my organs and tissues. I am

sure that this secondary source of lack of oxygen, that I've

experienced, has added to some of my primary disease (possible mito)

organ damage.

Another can of worms, that I won't get into on this post is when

the ANS inhibits or exacerbates the regulation of the heart rate

separately. Many times it is referred to as a condition known as

Postural Orthostatic Tachycardia Syndrome (POTS). This dysfunction is

also related to the standing position. And then there's the whole

catecholamine(neurotransmitter-brain chemicals-controlled by the ANS)

dysregulation that can cause irregular surges in bp, hr, and

everything that your body does for you that you don't normally have

to think about!!!!!!!!!! AAAAARRRGGGHHHHHHH!

It's something to think about! At least rule it out. Someone may

experience a better quality of life! I know it helped me....

God Bless,

Please let us know if this applies to anyone!

GingerLox

[Guest guest]

lee,

jessica started using o2 about a year ago and it was only as needed. about 6 months ago it became all night only, 2 months ago it became all the time with different needs as the day and night went. she is on 1-4 liters at any given time. this past monday we just started bi-pap at night. the peumo doc siad it would "help rest her lungs during the night to conserve energy" its only been a few days so far but this morning she didn't want to take the mask off....lol i was so worried about using the bi-pap on her, thought she wouldn't do well. just goes to show what i know doesn't it. she even told the doc before we left the hospital thanks for making me feel better... take care,

Michele, mom to jessica, 9 yrs old, mito, intractable seizures, encephalopathy, o2 dependant, g-j tube, complete dysautonomia,bladder dysfuntion, pdd, mr,and the light of my life !!!

[Guest guest]

I agree. I have low BP as well. My is called Neuro mediated hypotension. I was diagnosed by a Tilt table test. One doc says it is normal and the next says it was postive. But regardless my BP is low. It doesn't always correlate for me at least with the air hunger, etc. I think those symptoms are really from an energy crisis.

[Guest guest]

thank you for your support and yes my daughter has had a echo of her heart

please keep writing me shannon

[Guest guest]

We do regular Echos and EKG's all normal.

RE: Re: MITO: air hunger/ cofactors

I apologize for not knowing all the information on your child, before I comment. My son, ph, has been diagnosed with an enlarged aorta and ventricle on the left side of his heart. The doctor has said that the strength of his heart is great, but because of this enlargement, some signs to watch for would include difficulty breathing and shortness of breath. We have not experienced any of this yet to be able to compare is this is the same as your child. Have you had his/her heart checked out? This was determined by an Echo and EKG.

Deidra

Mom to la 5 & ph 2

-----Original Message-----From: thefiveofus02 Sent: Wednesday, May 07, 2003 5:12 PMTo: Mito Subject: Re: MITO: air hunger/ cofactors, I also spoke with Cohen about this issue. For a while it just seemd as though was gasping for air after exerting energy. He said that this is normal in Mito and not to worry about it. How can you not? It is not caused (I don't think) by anxiety, but it causes anxiety. If you don't feel as though you are getting enough air than your anxiety level rises. If it's a chronic problem, I would have the doctor do a pulse ox during this time and see if there is truly enough oxygen circulating in the blood. That would be the big concern. They won't give O2 (I've been told) for these episodes unless the O2 level is very low routinely.Hope this helps! Dawn MyersPlease contact mito-owner with any problems or questions.

[Guest guest]

,

I went to your website and your precious little is a beautiful baby.

You can see how sick she is and I will be praying for her comfort and for

the angels to keep her in their arms. You are hurting so deeply. I am so

sorry. But I also hear strength deep inside you from a power higher than

yourself that will get you through this.

I took xanax once and it made me loopy. I also had children to care for and

you are right. You need to be able to do what you feel you need to do to

love your other daughter. Do you have enough help for yourself and your

other daughter so that you can get through this? Maybe the doctor could give

you something else that will help you survive the emotions but still

function like you need to.

Say anything you need to, ask for any help any of us can give you, and spell

anyway you want. I know this is a hard way to get any support. It's just a

computer but remember there are real people typing back to you and even

though we have never met you in person we can feel your pain and we are here

for you. If we could I'm sure everyone who reads your pleas for help would

come and put our arms around you and cry with you and your sweet family.

Hold on . God will not dessert you now when you need Him so much.

Re: Re: MITO: air hunger/ cofactors

> thank you for your support and yes my daughter has had a echo of her heart

> please keep writing me shannon

>

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> Please contact mito-owner with any problems or questions.

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