Unusual Breathing Pattern

November 2, 2002

In recent weeks Terry has experienced a lot of fatigue and more trouble

with freezing. I have a question at the end of this long post about whether

this is the Cheyne Stokes breathing pattern or not. I welcome any comments.

She has shown an unusual breathing pattern that is typically brought on by

a freezing event or other stressful activity. The pattern is in two parts:

breath holding followed by hyper ventilation.

BREATH HOLDING In this part, she can be heard rather loudly to be

straining, like lifting a heavy weight. It seems as if she is working to

break the " freeze " on her breathing. This will last a few seconds.

HYPER VENTILATION When she begins to breathe, she makes a quite audible

moaning or groaning like sound while hyper ventilating.

Needless to say, anyone hearing these two sets of sounds is quite disturbed

as to what is wrong and why isn't something being done to provide relief

for what ever the problem is about.

She clearly appears to be in serious respiratory distress when these event

happen.

Such a rapid decline over several weeks is not typical of MSA. Pneumonia,

UTI, and dehydration have all been eliminated. An EEG has been done and

results are not back yet.

The fatigue and respiratory distress were severe enough I had to take her

to the ER as her neurologist was out of the country. Naturally, lots of

explaining had to be done about MSA. Anxiety may be at work; Xanax was

prescribed, but so far no change. Her doc is due back on November 4.

Several posts have mentioned the Cheyne Stokes respiratory pattern.

POST ONE The first one - actually consisting of two posts which I have

combined - was private and is from Ginger; I obtained permission to put it

on the list:

, Best I can recall it's been going on at almost 3 years maybe longer.

The home health nurse first called it to my attention, she would count up

to 25 secs between breaths. I spoke to Dr Jankovic in Houston and he said

all I could do to stop it was put a c-pap or bi-pap on him all the time.

Since all he CAN do is watch TV, the kids and I decided not to do that. He

is not oxygen deprived. Wish I could tell you more, but that's all I know.

Ginger

After I read my answer to you I realized I really did not answer all your

questions. It is always there now, he really does not breathe like a normal

person. He doesn't get " out of breath " striving to breathe, just breathes

very shallow, or not at all for a few seconds then the big sigh, and back

to shallow. He is really not in any stressful situatuions at this point

since he can't move anything, has been fed only by tube about 4 years,

can't talk or really communicate in any way but staring. If he is not

breathing when the nurse wants to listen to his lungs, I will threaten to

tickle his feet and he will snort, which gives her a chance to listen. That

really is about all I know. Ginger

POST TWO The second was one was on the list from Fisher:

Message: 7

Date: Thu, 31 Oct 2002 14:43:36 -0500

Subject: Re: Re: Cheyne Stokes

Absolutely. It occurs during sleep or wake cycles. HOWEVER, a bit of

shallow breathing followed by a deep sigh is perfectly normal. The body

uses this pattern to help keep the 'air sacs' in the longs fully expanded.

So, in other words, when in doubt always check with your health care

professionals.

Regards,

=jbf=

MY QUESTION After searching on " Cheyne Stokes " , I can not convince my self

what Terry is showing is Cheyne Stokes.

Any comments?

Sennewald Charlottesville, Virginia

November 2, 2002