Kiwii's Search for Restful Sleep

[paulag1955]

You would need the dog to be very well trained to alert only in certain situations. My dogs bark at many, many things that pose no threat at all...a deer wandering through the yard, a bird on the lawn, a neighbor walking down the street. A randomly barking dog would increase your anxiety. At least it does mine. Fortunately, it's still manageable for me.

[kiwii]

You would need the dog to be very well trained to alert only in certain situations...

Yes, you're right, it couldn't be just any dog. I actually qualify to have a service dog, but didn't want to draw attention to myself in public.

At home I've relied on my small dog (now passed on) and cat to know if anything is out of the ordinary. I'm hard of hearing, and they provide the ability for me to relax without needing to watch the door constantly.

[kiwii]

Oh, my gosh, Kiwii, you have been through the mill... I guess I thought all this time you had an ASV, but it turns out you have a BPAP. But now you're on an ASV quest, or at least something or combinations or things that will give you more oxygen and less breath craziness.

It does sound as though you're through the stage where the sleep docs are all misbehaving. You've found at least one, now, who's on your side and makes sense? And your PCP is on board, and you're routed to a neurologist and a pulmonologist? I would say you're moving right along! Although, IME, this stuff never seems to move along fast enough.

At any rate, progress is being made?

So good to see you! Yup, a team is actually forming up.

I saw the pulmonologist and neurologist/sleep doctor #3 a few days ago. They both immediately identified the need for backup, so I feel like I can relax a little bit in that regard. Sleeprider cautioned about ASV instead of ST (Dr 3 mentioned ST titration), so there are still things to sort out. And of course the overnight test.

Just as an FYI, you have allergies or asthma, correct? When my allergist (whom I don't see for allergies or asthma, lol) heard that I have high flow limits and the sleep center folks weren't addressing it, she had me experiment with my steroid inhaler (Flovent)...

Lol! Love that you do not see your allergist for allergies!

Thank you for the heads-up on the steroid inhaler and flow limits. The pulmonologist mentioned steroid nasal spray (?) as a possibility for me. I guess we will see what happens after the testing in a few weeks. Since my 'asthma' is all coughing, we first need to establish that it isn't something else.

I'm not sure if my flow limits are high or not (still can't post my darn charts ). I should re-read your threads and see if I can figure it out by comparison.

It's occurring to me that there's sleep disordered breathing and then there's trauma-induced sleep disordered breathing...

I wouldn't be surprised if I've held my breath as a trauma reaction - in fact I'm pretty sure that I have at times, especially during therapy when things would get really stirred up. It was hard to sleep then.
I think these weird breathing episodes are not the same thing though, and the new sleep doctor was pretty matter of fact about it being central apnea.

[HalfAsleep]

I'm so glad things are coming together for you.

I need your new sleep doctor.....


PS Allergists also cover asthma and basic immunology (allergy is an immune-system disfunction).

[OpineCone]

kiwii, you seem to be making some incorrect assumptions about your upcoming sleep study, especially in relation to your vulnerability to an intruder while you are trying to sleep.

Perhaps it would help you to know that you will be in a protected environment with only one person authorized to come into your room, the technician who will guide you through the whole process, set up the room for you, attach the electrodes, tell you what to expect during the study, answer your questions, settle you down to sleep, and then monitor you through the night including being on call to you through an two-way intercom. If the technician needs to enter your room during the study, to reattach an electrode or something, you will first be asked through the intercom system for your permission. If you need something like a room temperature adjustment or another blanket, you may simply ask the technician through the intercom. All-in-all a sleep lab provides a very reassuring environment because it has to. And you will be safe there and well cared for.

I hope this will help you relax into this process and even see a possibility that you will enjoy some sound sleep while you are there. (To my amazement, I did, even the first time!)

[HalfAsleep]

<snip>

What I really need is a dog to alert me if a threat/danger comes near the door. Or some way to prevent someone from entering, in a way that I am sure cannot be circumvented.
<snip>

 A doggie was the first thing I thought of. The biggest problem would be that you couldn't take it out to pee, and if he liked to sleep on your bed, the wires could get interesting.

Did you know you can get a prescription for a doggie? The prescription doesn't pay for the doggie, but it allows you to have one in many places where pets aren't allowed. This is a little off subject, since it would be impractical to take one for a sleep study, but it's a thought for another time.

Oh, now I see you can get a service dog. These have long waiting lists, though.

The entire inside of your room is going to be visible to the techs via night-time video cam. They can see if you're having a PTSD reaction..... No one can get in there without your knowledge. Everyone there is wired up: no way they're wandering around. And they are ALL watched by video.

[HalfAsleep]

<snip>
I wouldn't be surprised if I've held my breath as a trauma reaction - in fact I'm pretty sure that I have at times, especially during therapy when things would get really stirred up. It was hard to sleep then.
I think these weird breathing episodes are not the same thing though, and the new sleep doctor was pretty matter of fact about it being central apnea.

Did you have to have a sleep study already to figure out they were central? Or is this just neurologist/pulmonologist experience? Was it your description of your symptoms?

I'm not giving you the third degree, just trying to figure out for my own case how to get this kind of attention for my symptoms....

[kiwii]

Action Plan:

Focus on resolving one issue at a time, and work on it until it is better:

- no more thinking, or describing, the problems as they have been, but only focus on the outcome that I want. (otherwise I am reinforcing the problems)

- I've identified a possible therapist - contact her and get that process started, but in the context of recovering functionality (without 'getting into' history)

Goal 1: I need to be able to leave my own house by myself. I'm currently having trouble going into my own yard.

Goal 2: Become familiar with the sleep center by visiting it in person.
Until I can arrange for getting there, I can visualize the sleep center and its personnel as helpful and 'safe'; I can use the recent positive experience with the new doctors, and OpineCone's description of being "safe there and well cared for" to help. (I did feel that with my old and now-retired PCP and his staff, so I can use that association to help too)

[kiwii]

Did you have to have a sleep study already to figure out they were central? Or is this just neurologist/pulmonologist experience? Was it your description of your symptoms?

I so wish that you will find someone to give you the help that you need!! My charts are no where near yours.

They were only looking at my original sleep study, my SleepyHead charts for the night the weird breathing thing happened, and listened to my description of that event. I was also specifically questioning the oxygen part of the original sleep study.

Pulmonologist mentioned central apnea while looking at SleepyHead, but not at any other time. He didn't mention it when discussing the need for backup and supplemental oxygen. (maybe he was thinking it, I don't know) So I am not clear if his suggested treatment plan is actually due to 'central apnea' or not.

Sleep doctor immediately said central apnea as I described the weird breathing thing and further described it better than I had (now, it was the pulmonologist's plan to send his recommendations to her, so she may have already been informed of something). She made it clear that she is wanting an ST titration study for central apnea.

edit: sleep doctor also took my data card and looked at it on her own computer (this to check my settings)

edit2: also, I don't know what they may have looked at before entering the room (my PCP did send stuff to the pulmonologist, and the pulmonologist was going to send stuff to the sleep doctor although I don't know if he had a chance to do that or not)

[kiwii]

kiwii, you seem to be making some incorrect assumptions about your upcoming sleep study, especially in relation to your vulnerability to an intruder while you are trying to sleep....

Thank you for the encouragement! I'm going to use your description to help visualize/anticipate a positive experience. I also think visiting the sleep center will go a long way in feeling safe there (it will no longer be "a big unknown").