Fwd: C-PAP or Bi-PAP and other problems

November 1, 2002

Hi Guys,

I posted the message below yesterday. I realize that it may be too

soon to expect a response, but we have a doctor's appointment late

this afternoon, and our doctor really likes the input the group has.

If anyone out there can respond to my questions, or even a portion of

them, I'd really appreciate it! Thanks M.

Hi Folks,

Can anyone give me and Jeff some advice on when it would be an

appropriate

time to go from a CPAP to a Bi-PAP. Jeff has been on a CPAP for

about 6-7

months now, and while it definitely helps with the nightime stridor,

and he

sleeps MUCH better, he is having alot of difficulty breathing when

awake,

and his daytime narcolepsy is getting worse again, in fact worse than

when

he first started the CPAP. He was on Provigil for a while, it worked

a

little, but after a while there was no difference. He's now on

Concerta,

and it really doesn't seem to be helping. Dexedrine was a

nightmare. He

also had a spirometry test, and the doctor says that his lungs are

not

properly dilating (?), hence the shortness of breath. He gets short

of

breath even when at rest. Something as simple as tying his shoes is

a

major ordeal for him. It takes him 5-10 minutes to recover. The

doctor

has given him an inhalator (combivent) and it helps a little, but

only for

a short period of time. On top of all this the blood pressure spikes

are

still occurring and he has TERRIBLE swelling in his feet, legs,

hands, and

sometime around his face and eyes. I'm starting to feel like the

little

dutch boy with his finger in the dam. New leaks keep springing up,

and

they seem to be happening too fast to keep up with. Help!

Regards,

M.

--- End forwarded message ---

November 1, 2002

Hi Guys,

I posted the message below yesterday. I realize that it may be too

soon to expect a response, but we have a doctor's appointment late

this afternoon, and our doctor really likes the input the group has.

If anyone out there can respond to my questions, or even a portion of

them, I'd really appreciate it! Thanks M.

Hi Folks,

Can anyone give me and Jeff some advice on when it would be an

appropriate

time to go from a CPAP to a Bi-PAP. Jeff has been on a CPAP for

about 6-7

months now, and while it definitely helps with the nightime stridor,

and he

sleeps MUCH better, he is having alot of difficulty breathing when

awake,

and his daytime narcolepsy is getting worse again, in fact worse than

when

he first started the CPAP. He was on Provigil for a while, it worked

a

little, but after a while there was no difference. He's now on

Concerta,

and it really doesn't seem to be helping. Dexedrine was a

nightmare. He

also had a spirometry test, and the doctor says that his lungs are

not

properly dilating (?), hence the shortness of breath. He gets short

of

breath even when at rest. Something as simple as tying his shoes is

a

major ordeal for him. It takes him 5-10 minutes to recover. The

doctor

has given him an inhalator (combivent) and it helps a little, but

only for

a short period of time. On top of all this the blood pressure spikes

are

still occurring and he has TERRIBLE swelling in his feet, legs,

hands, and

sometime around his face and eyes. I'm starting to feel like the

little

dutch boy with his finger in the dam. New leaks keep springing up,

and

they seem to be happening too fast to keep up with. Help!

Regards,

M.

--- End forwarded message ---

November 1, 2002

Greetings & Jeff!

Apologies in delay. Let's see if I can help...

Going from CPAP to BiPAP depends on how much it might help if Jeff struggles

against the Constant Positive Airway Pressure. The pressure does not

change, and sometimes causes people to stop breathing. Did for me. During

a sleep study, they switched me to BiPAP and it made a huge difference.

So, a sleep study would be required to see if it helped. Jeff may just have

problems with sleep if other daytime symptoms are magnified. Best bet is to

ask for another sleep study. By the way, it's not unusual for needs to

change after several months. The body changes and adapts. The machines do

not.

Jeff's doctor might also want to try some of the meds that help with

altitude sickness. These seem to help daytime breathing problems,

especially if Jeff has the Cheyne Stokes breathing pattern.

Jeff you may also need a more extensive test (if not already done). The

Multiple Sleep Latency Test (MSLT) helps diagnose the extent of the

narcolepsy. Also, you should request at the same time for them to monitor

daytime breathing problems. That should be doable, even if it is just Jeff

that notes the time and why. (Though I expect they can do some sensory

monitoring).

Also, , you may find that if Jeff has increased problems with sleep, his

Narcolepsy will increase in strength. Make his night time sleep more

productive and daytime symptoms decrease.

But let's not rule out infections. Jeff's doctor shuold probably check for

a UTI and/or other general infection.

Yes, swelling is a serious problem. Do dieuretics helps, folks? I don't

know. But I would think this could help, and would have the side effect of

decreasing the high BP spikes.

Finally, remember to be very CLEAR about how frustrating this is for you,

. Help Jeff's doctor see through your eyes. Jeff's doctor needs to

step back and see Jeff, not just one symptom at a time.

Hope this helps.

Regards,

=jbf=-

B. Fisher

November 1, 2002