Freaking Out

[sleepypp]

Dr. wants to see the data. Why did they not download the dang thing when I was in there the other day getting a new machine? So find out they said the card was corrupt, which was why they gave me a new one. I put the card in my home computer yesterday and Windows said it had some errors, but fixed them, then I downloaded to SleepyHead. So I will go by tomorrow, with the same card to the same place and let them download the data and send it to my Doctor.

Not looking forward to tonight!

But I seem to remember a long time ago, when I read about a user not being able to "catch their breath" and the response was that the level was set too low. So now I am thinking to set my minimum up one point from 11 to 12 and see if that helps.

[DoriC]

I think you may have been reading about pressures that start at 4 or 5, some people feel suffocated and can't breathe, but since your're going to do a d/l for your Dr, why not wait and see what was going on at RX pressure of 11?

[borgready]

I already take 10mg Celexa for anxiety, maybe I'll bump up to 15 for a few days.

Are you on any other psych meds? How long have you been on Celexa?

Get off the pysch meds. They can cause breathing problems. Read your list of side effects. Also if you been on the psych drugs for a while, you have to go off slowly as they can make you suicidal.

If you got panic issues using cpap, trust your instinct and don't cover up your problems using psych meds. Try to figure out what is causing the panic issues. Sinus issues?

Doctors hand out psych drugs like they are candy.

[sleepypp]

I have been on Celexa for about 7 years. Made a HUGE difference in my life. If you ask my co-workers, it's when the "new me" began. Previously (most of my adult life) I was way too anxious and had a VERY hard time relaxing, even on my weekends sitting in the hot tub lol!. I was angry, irritable, impatient, callous and easily frustrated. I still experience all of these emotions, but they are the exception rather than the rule. 10mg is a very small dose, but normally seems to do the trick. Sorry.... not going to give it up.

Idiots at the equipment place could not download my data after I made another special trip there this morning. This was after telling me to just drop by this AM, but when I arrived, they tried to tell me I needed an appointment to download the data. So now the only clinician who could download data was locked out of his account, and had been for two days because he re-set his password and they forgot to unlock his account. He needed someone at his own company to unlock his account. Whatever! You don't have a temp account to save people having to drive all over the city? I had to back-track back to another city and took the cards to my Doctor, who also found the ME hadn't even linked me to my Doc properly in the Encore system, so they had to set up another account for me. Time to find a new ME I guess. This one is 0 for 3 this week.

Still have not heard from my Doctor.

Setting the pressure to 11.5 last night didn't feel much different, so I went to 12. I slept for about 90 minutes then woke up feeling anxious again. Put on the mask and watched TV for awhile and eventually fell back to sleep and got maybe another two hours. Not much, however... I do have more energy today and not nearly as tired. I think I am on to something. I am going to watch TV with it on again tonight and leave it at 12 and see if anything improves. 12 did not seem to present any problems with breathing and actually felt a little more re-assuring. I didn't get a chance to look at the data from last night, and now I will not have it as I left it with the Doc, but I'll see what happens tonight.

Thanks for the concern and recommendations from ALL who posted. It really makes a huge difference to know I'm not alone in this. It has been an extremely disturbing experience, but I think I am working it out little by little.

So much for the non-responsive, ineffective and bumbling "professionals".

[borgready]

Do you have a pulse oximeter? If you do use it and record the data as you sleep.If you don't you might want to get one so you can see how your cpap is working out for you. If you see your Oxygen level is dropping below 90, your having some kind of problem that is setting off the panic. Panic is good because it wakes you up.

Copy your SD card to a folder called SD card and upload the folder to zippyshare.com ( its a temporary file storage site). Me or someone else can post the results that encore spits out in a pdf file.

[mgaggie]

I already take 10mg Celexa for anxiety, maybe I'll bump up to 15 for a few days.

Are you on any other psych meds? How long have you been on Celexa?

Get off the pysch meds. They can cause breathing problems. Read your list of side effects. Also if you been on the psych drugs for a while, you have to go off slowly as they can make you suicidal.

If you got panic issues using cpap, trust your instinct and don't cover up your problems using psych meds. Try to figure out what is causing the panic issues. Sinus issues?

Doctors hand out psych drugs like they are candy.

Where do you get off on telling someone to give up medication? Are you their doctor? No. Psych meds are useful for a number of people, and in some cases have saved lives.

SleepyPP sounds like you are starting to work 'it' out. Good luck, it took me some time to get used to the machine too

[DoriC]

I already take 10mg Celexa for anxiety, maybe I'll bump up to 15 for a few days.

Are you on any other psych meds? How long have you been on Celexa?

Get off the pysch meds. They can cause breathing problems. Read your list of side effects. Also if you been on the psych drugs for a while, you have to go off slowly as they can make you suicidal.

If you got panic issues using cpap, trust your instinct and don't cover up your problems using psych meds. Try to figure out what is causing the panic issues. Sinus issues?

Doctors hand out psych drugs like they are candy.

Where do you get off on telling someone to give up medication? Are you their doctor? No. Psych meds are useful for a number of people, and in some cases have saved lives.

SleepyPP sounds like you are starting to work 'it' out. Good luck, it took me some time to get used to the machine too

I agree, this is scary advice and I'm noticing it more and more that ordinary sleep apnea sufferers are dictating the use/non-use of serious meds. That's not what this forum is intended for. Take a look at some highly regarded posters here and you'll never read stuff like this from them. They're here to make suggestions based on their clearly defined long-term experience and specific information gleaned from highly qualified professionals. Please think twice before posting such dangerous advice! Real painful anxiety vs sinus issues, really??? And please don't put all doctors in one dirty basket. They save lives every day and trained and work hard to do so.

[sleepypp]

It's OK, some people are anti-meds. But I always ask about my meds and take them diligently as prescribed, usually with very good results. It does not seem like a good idea to stop taking an anti-anxiety drug during a period of extreme anxiety anyway.

Nothing from my sleep Doc yet except he does not recommend a pressure change based on the "great results" from my data. I guess he didn't notice there have not been hardly ANY results since the event.

Last night was not any better. Maybe 3 hours. I'll check the data, but it's hard to tell awake from asleep. Extremely tired and grumpy today. The effects of sleep deprivation are getting more pronounced.

This is a copy of what I sent my sleep doc today, and CC'd my regular doc.

Sent:

1/15/2014 10:32 AM PST

This is referring to an event that happened on the 5th of this month (Sunday night sleep session) and was first reported to your office on the 8th of this month via the MyChart message system. This communication was followed up with phone calls (as was recommended) because the issue had become urgent.

I will call your office again today to back up this request, but I am sending this because I want to make sure it's well documented. There seems to be no way to directly communicate with Dr. *****. My phone conversations and concerns are relayed to him through another person who may or may not be able to convey the severity of the issue to him.

It has been more than a week now since I have been able to get more than 3 hours of sleep. This issue is directly related to my formerly highly successful CPAP therapy. Up to this point no remedy or course of action has been put forward. I continue to struggle with anxiety, apprehension, possible fear(?) of sleep and/or the CPAP equipment and little to no restful sleep each night.

Your office asked for data from my machines, which I have provided.

Please recommend a course of action. If you have none, please refer me to someone who can help.

Thank you for your time.

[sleepypp]

I am back to my old M series machine at my prescribed pressure. Feels more like an old friend. Too bad it does not make a difference. Nothing does. Asked my regular doctor for a referral for a new pulmonary specialist, or a shrink or both. Nothing yet and night is coming.

I go to bed, but not to sleep. The room, the mask the covers and pillows are all stifling. I put the mask on and sit up and watch TV. Determined, I shut things off and lay my head down only to have to get back up, Turn on the light, take off the mask. Get a drink of water. Do it all over again, and again. I can feel the pressure building in my chest just thinking about it. I'm too hot or too cold and dog tired. I drift off for 5 seconds just to wake up. Maybe this is hell?

[sleepypp]

I just thought about another medication I am taking for chronic sciatica. It's a patch and I already ripped it off. May be interfering.

One of the possible side effects is "difficulty breathing".

Of course, it could be a million other things as well.

Some side effects of Butrans may not be reported. Always consult your doctor or healthcare specialist for medical advice. You may also report side effects to the FDA.
For the Consumer

Applies to buprenorphine: sublingual tablet
incidence not known

Blurred vision
confusion
difficult or troubled breathing
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
drowsiness
irregular, fast, slow, or shallow breathing
pale or blue lips, fingernails, or skin
pinpoint pupils
relaxed and calm feeling
shortness of breath
sleepiness
unusual tiredness or weakness

[HoseCrusher]

Stacy, I am sorry to hear that after many years of use xPAP has now become difficult to use.

I am going a little outside the box here, but find a pan that is big enough to soak your feet in. About an hour before bedtime put 1/2 cup of Epsom salt in the pan and put water as hot as you can handle in it. Soak your feet until the water cools off to a point that is uncomfortable.

This is inexpensive and worth a shot. The rational is that life, work, stress, medications, and diet often rob our bodies of essential minerals. Many we can replenish through a proper and balanced diet, but magnesium can be a little harder to come by. The Epsom salt bath has magnesium in it. Magnesium calms and reduces anxiety. In addition, a foot bath helps relax your whole body.

It sucks that your diagnostic team has dropped the ball. I hope you figure out what is going on and can get back to a more normal nights sleep. Don't be afraid to fire your current team and hire one that holds your well being in higher regard.

[sleepypp]

Stacy, I am sorry to hear that after many years of use xPAP has now become difficult to use.

I am going a little outside the box here, but find a pan that is big enough to soak your feet in. About an hour before bedtime put 1/2 cup of Epsom salt in the pan and put water as hot as you can handle in it. Soak your feet until the water cools off to a point that is uncomfortable.

This is inexpensive and worth a shot. The rational is that life, work, stress, medications, and diet often rob our bodies of essential minerals. Many we can replenish through a proper and balanced diet, but magnesium can be a little harder to come by. The Epsom salt bath has magnesium in it. Magnesium calms and reduces anxiety. In addition, a foot bath helps relax your whole body.

It sucks that your diagnostic team has dropped the ball. I hope you figure out what is going on and can get back to a more normal nights sleep. Don't be afraid to fire your current team and hire one that holds your well being in higher regard.

Thanks

I don't know what is going on now. Yesterday morning I asked my regular doctor for a referral and still have heard nothing! He is a fantastic doctor and I am very happy with him, but I started with him AFTER starting on CPAP and I stayed with my current sleep doctor even though they are not affiliated. I know these feelings I have are not exactly unusual so why can't someone get me doing SOMETHING? Still have not heard a peep from my regular sleep doctor.

Last night was not much better although I did manage to black out from time to time from shear exhaustion I guess. Last night I decided to just try to get any sleep at all and forgoing xPAP until I figure that out. Grasping at straws....

[sleepypp]

Just finished my foot soak. Very relaxing.

I called the sleep doc and managed to get my appt. Moved up to next Thursday. On the way home from work I decided to just go in there and see if I could get some help. My Dr. Was already gone but I talked to the assistant for awhile. She sent me over to the Walk In clinic for some blood tests and an EKG which all came out normal and good. The GP was nice and she eventually recommended a perscription, and urged me to try the CPAP again tonight. Also let me know that she would be there all weekend and to call if I needed anything. Very reasssuring. Hopefully i'lll have better luck tonight. I could really use some sleep!

[OboeVet]

I would wake up suddenly with air-hunger / suffocation early on with a nose mask. Vendor gave me full face but still had some episodes. I would grab the mask and get a few fresh air gasps, then back to sleep. The solution came when doc raised the auto flex minimum pressure up to 10.0 cm. The vendor & doc also suggested increasing humidity, which on my rig is increasing hose temperature.

Final intervention has been trying corticosteroid nasal spray to try to reduce amount of time with only one nostril open.

Hope this helps. Sounds to me like device calibration may be suspect.

[haroldb]

One suggestion if you do think it is congestion related, try using an Afrin-like nasal spray for a night or two. It's not something you can do every night, but if it works it gives you something specific to work on with your doctor. And a couple of decent nights of sleep.