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New to the whole thing
#1
New to the whole thing
Hi Everyone,

Over the last year, my wife has told me numerous times that she was worried about my breathing while I slept, and that I would go from loud snoring to complete silence at a moment’s notice, and then “gasp” for air. So while I knew that it was likely I had sleep apnea, I much preferred the convenience of living in denial. The thing is, I had and still have no problems staying awake during the day, and no drowsiness while driving. If there were other signs, I either dismissed them or just ignored them altogether. That was until a couple of months ago when I started actually waking up a couple of times a night, heart pounding and feeling like I needed to catch my breath, a new and unpleasant situation all by itself, but only the beginning of things to come. About three weeks ago I woke with that urgency to catch my breath and within just a few seconds started having a litany of very uncomfortable and downright terrifying symptoms. They included a “flush” feeling that began in my gut, as if I had just been filled with hot water, and coursed throughout my entire body in continuous waves, waxing and waning. My heart was beating so hard that I thought I could hear it through my chest as it tried to escape and my head felt as if it would follow along. Being no stranger to anxiety attacks, I took this as such and even concluded that I had induced this upon myself by mixing alcohol and Benadryl earlier that day. This hypothesis seemed to stand on it’s own merits as the following day found me feeling much better, and the next several days being completely back to normal.

Much to my displeasure and without the aid of alcohol or OTC meds, the episode repeated itself about a week later, with a vengeance. I was unable to control the symptoms regardless of relaxation techniques. After about 6 hours worth of suffering was all I could take and decided to drive myself to the emergency room just in case. They took me in immediately and within mere minutes had taken all my vitals and got me wired up for an EKG. I was also sent for a chest x-ray and had blood work done. As anyone who has ever been in this situation knows, the last thing you really want to hear from the ER doctor is “all your tests are normal, so this is probably just an anxiety issue”. Now, it’s not that one isn’t relieved to know that they haven’t suffered a heart attack and are not about to. It’s not as if devastating news of any kind would be greeted with anything other than shock and terror, but unanswered questions don't feel right in that setting either.

Fortunately, I had a doctor’s appointment the next day, which was only coincidental to the ER visit, and intended to be a yearly checkup. Obviously it evolved into an ER follow up. The doc mentioned to me that my initial blood pressure in the ER was 185/107 and it was a good thing I went, even if only to be monitored. It was also noted that my blood pressure in his office was elevated as well, but not quite as extreme. He too felt that I was experiencing anxiety issues, having been treated for them at length in the past, but also sort of casually mentioned an abnormal hematocrit number in the ER blood work. As I understand it, that is the concentration (%) of red blood cells in your blood and relates somehow to oxygen levels. If your heart requires more oxygen, then your body increases the number of red blood cells it supplies to your blood. That’s when he brought up the question about whether or not I had any reason to suspect I might have sleep apnea. When I said said “yes”, he went ahead and referred me for a sleep study.

I had the sleep study done at the clinic on Monday night of this week. As of this post, the diagnosis is still unofficial since I’ve heard nothing and have yet to be scheduled to meet with anyone to discuss the results. However, the technician woke me a few hours after falling asleep and started me on CPAP (nasal mask), citing that I had reached or exceeded the criteria for cpap therapy tests to be administered. He did not reveal many more details (except to say he had reached 12cmH2O of pressure- more about that later) so I’m basing most of my comments about the impending diagnosis from here on as assumptions based on my many hours of studying the internet about the wonderful world of apnea, how it’s diagnosed, and how it’s treated. I’m also assuming, for now, that it’s obstructive in nature. Even though I was off the charts in terms of anxiety about having the test, and tried talking myself out of going all day prior, I have to say that it was really not anywhere as bad as I had made it out to be in my mind. One possible reason for that is I took a lorazepam earlier in the day, and one on the ride over to the clinic. I fell asleep quite easily and had no “episodes” during, nor after the test. In fact, even though I didn’t get abundant sleep that night, I actually felt pretty normal the day after.

I have a CPAP that was given to me by a family member. It’s an older Resmed S6 that had almost no hours on it and an older brand new nasal mask. I was able to figure out the settings via the Clinician’s Manual found on the internet, and determined the output pressure was set at 8cmH2O. As soon as I began having these troubles I started to use it “as is” figuring it couldn’t hurt to get used to wearing it and might be of some benefit in dealing with the issues. It did not, however, seem to make any difference in general. After the sleep study I adjusted the pressure to 12cmH2O that the tech said was the pressure he titrated up to and have been using it while waiting for my follow ups with the results of the test. It has not worked. I’ve had several waking disturbances with the “episodes”, and for the past two nights I’ve had a waking “attack” as described above within a few minutes of falling asleep, every time.

So I am feeling aweful today after only one or two hours of broken “sleep” last night and only a bit more than that the night before. What’s worse is it’s now late Friday and I won’t hear anything from anyone for at least another three nights. Three nights of heaven only knows what. Sleeping without the machine is probably not an option since the “episodes” seem to be far worse without it. I’m considering adjusting the pressure up to 12.5 and see what happens. If it still doesn’t work for me then 13 tomorrow night. If that doesn’t work and I’ve managed to survive it anyway, then I guess I go sightseeing Sunday night and show up at my primary doctor’s office as a walk in 9am Sunday morning.

Has anyone else here ever experienced anything like these episodes? Were they attributed to anything specific such as the adrenaline shot you get from arousing to breathe? Or was an underlying anxiety issue just being compounded by the apnea? Any other thoughts or advice you can share with me about all of this?
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#2
RE: New to the whole thing
Before I had my first sleep study, I didn't have any symptoms that I was aware of. we had such a hectic lifestyle with 2 young children and busy work schedules. I do remember a long time before that I was driving to work and found myself in a parking lot and didn't know how that happened but I attributed it to stress and that is the only time it happened. I was tired all the time but because I worked many hours each day/week, that was a given that I would be tired all the time. I never woke up gasping for air or with headaches or any other symptoms. I do have allergies so if I snored (and my spouse never mentioned that I did) I would have attributed that to my allergies. Then I had a physical one year and there was something that showed up on an in office EKG and I was sent for a sleep study. That was a crappy experience and I just ignored what they told me. Several years later, when I was getting my annual check up, the doctor ordered another sleep study. I had apnea and was given a CPAP machine. For almost 3 years, I kept waking up every 1 1/2 to 2 hours, had issues with my mask because they kept giving me the wrong size and never once offered me a nasal mask or pillows. My doctor then ordered another sleep study to see if they could find a reason that I was not sleeping well at night and why now I was tired and sleepy during the day. They changed my pressure and I was given an auto set. Still had fragmented sleep and daytime sleepiness and fatigue. So another sleep study on bipap.

Since the machine you are using is an older one and things have changed a lot with the newer machines, it may not be enough to completely resolve things for you. Also, it is going to take time for your body to heal from the lack of sleep, etc. In the meantime, try elevating your bed or elevating your head by propping a few pillows behind it (I do this with the bottom pillow being east and west and the top pillow being north and south) or both. I don't know if increasing the pressure would be a good idea because it takes a while to adjust to a pressure so changing it the next night might not help since your body has been deprived for so long. If it were me, I would try elevating the bed and/or my head and use the machine you have at 12 and see if those things help. Also, are you noticing a lot of leaks with your mask? That can cause some issues as well, especially if you are a mouth breather. drgrimes has some suggestions on what has been used as a chin strap to help keep one's mouth from leaking. I am sure others will have other thoughts and suggestions for you.
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#3
RE: New to the whole thing
Hi Mountain Man,
WELCOME! to the forum.!
The only thing I will say is that you have an older machine and technology has changed quite a bit since that one.
You could try to put your pressure to what you suggested in your post, )12.5,) and see if that helps you but hang in therefor more suggestions to your situation.
Best of luck to you.
trish6hundred
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#4
RE: New to the whole thing
(01-04-2014, 01:48 PM)Mountain Man Wrote: I had the sleep study done at the clinic on Monday night of this week. As of this post, the diagnosis is still unofficial since I’ve heard nothing and have yet to be scheduled to meet with anyone to discuss the results.
Hi Mountain Man, welcome aboard
First you need the diagnosis and the results, whether your apnea is obstructive, mixed, central or/and other sleep disorder, each condition is treated with different machine
We don,t know what type of data is available on the S6 machine, for example Phillips Respironcis Auto and Resmed S9 AutoSet reports efficacy data such as leak rate, AHI and breakdown of apnea events whether obstructive or clear airway) , etc .. and can used on CPAP mode to deliver a constant pressure all night (except Ramp time) or on auto range so the pressure adjusted within the range as the machine see fit in response to snoring, flow limitation and apnea. Both machine can distinguish between obstructive and central apnea so the machine don,t increase pressure in response to central apnea and supported by SleepyHead software so you can see how the therapy is working

Machines choices and what machines to avoid http://www.apneaboard.com/wiki/index.php...ne_Choices

Tips for CPAP newbies http://www.apneaboard.com/wiki/index.php...CPAP_users




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#5
RE: New to the whole thing
Thanks for the replies so far

I actually wrote that post the night before last and posted on another forum, but found that forum was hosted by the industry and not exactly what I was looking for in terms of an open forum to discuss the issues.

So anyway, I adjusted the pressure to 12.6 (the adjustments were limited to .2 increments) last night. Slept for 6 hours until a noise woke me and then back to sleep for almost 4 more hours, with no episodes. First time since the sleep study that I haven't had at least one occurrence.

As far as the advice so far, the machine may have to be the one I use for a while since I have no insurance and no extra cash on hand to put into expensive equipment. I will know more about all of that whenever they decide to FINALLY bring me in for test results etc.... As far as elevating my bed, I've been sleeping in my Lazy Boy recliner for the last two weeks. Last night I made it so I could only recline back to about 45 degrees or so, as I've woken up a few times prior to be nearly horizontal like I would be in bed. I understand it's not ideal for apnea sufferers to sleep on their back, especially in that position. But I have opted to sleep in the chair because it makes dealing with the mask (which leaks if I move too much as it is) and hose much easier to deal with at the present time.

Hoping to put a few nights like last night together without any other changes. It would go a long way to getting my life back on track.
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#6
RE: New to the whole thing
Hi Mountain Main and welcome to the board!
I didn't know a person can have anxiety attacks while sleeping. I would think that having them, coupled with apena, would certainly disrupt your therapy and sleep.
As it sounds like your primary doctor is going to review the sleep results tomorrow, I am sure you will tell him what has going on with the anxiety attacks.
As me50 and trish said, machines have changed for the better over the years and he can get you on a new one for your specific needs.
Let us know how you make out and again, welcome to the board!
To err is human, but to really mess things up, you need a computer.
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#7
RE: New to the whole thing
(01-04-2014, 03:29 PM)Mountain Man Wrote: Thanks for the replies so far

I actually wrote that post the night before last and posted on another forum, but found that forum was hosted by the industry and not exactly what I was looking for in terms of an open forum to discuss the issues.

So anyway, I adjusted the pressure to 12.6 (the adjustments were limited to .2 increments) last night. Slept for 6 hours until a noise woke me and then back to sleep for almost 4 more hours, with no episodes. First time since the sleep study that I haven't had at least one occurrence.

As far as the advice so far, the machine may have to be the one I use for a while since I have no insurance and no extra cash on hand to put into expensive equipment. I will know more about all of that whenever they decide to FINALLY bring me in for test results etc.... As far as elevating my bed, I've been sleeping in my Lazy Boy recliner for the last two weeks. Last night I made it so I could only recline back to about 45 degrees or so, as I've woken up a few times prior to be nearly horizontal like I would be in bed. I understand it's not ideal for apnea sufferers to sleep on their back, especially in that position. But I have opted to sleep in the chair because it makes dealing with the mask (which leaks if I move too much as it is) and hose much easier to deal with at the present time.

Hoping to put a few nights like last night together without any other changes. It would go a long way to getting my life back on track.

If you live in the US, have you checked the marketplace that is soon to be mandatory? It may be less expensive to look there than to pay the fines for not having insurance.
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#8
RE: New to the whole thing
(01-04-2014, 03:29 PM)Mountain Man Wrote: As far as the advice so far, the machine may have to be the one I use for a while since I have no insurance and no extra cash on hand to put into expensive equipment.
Check Supplier #2 ... they have reasonable priced gently used machines and new zero hours machines, some examples
Gently Used ResMed S9 AutoSet and Accessories $479
Gently Used Respironics System One DS550HS Auto CPAP $439
Gently Used DS560 REMstar Auto AFLEX Machine without Heated Humidifier $389.00
[Optional heated humidifier available for $90.00 also the conversion kit for the heated hose]
Suppliers List http://www.apneaboard.com/forums/Thread-...plier-List



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#9
RE: New to the whole thing
(01-04-2014, 05:09 PM)me50 Wrote:
(01-04-2014, 03:29 PM)Mountain Man Wrote: Thanks for the replies so far

I actually wrote that post the night before last and posted on another forum, but found that forum was hosted by the industry and not exactly what I was looking for in terms of an open forum to discuss the issues.

So anyway, I adjusted the pressure to 12.6 (the adjustments were limited to .2 increments) last night. Slept for 6 hours until a noise woke me and then back to sleep for almost 4 more hours, with no episodes. First time since the sleep study that I haven't had at least one occurrence.

As far as the advice so far, the machine may have to be the one I use for a while since I have no insurance and no extra cash on hand to put into expensive equipment. I will know more about all of that whenever they decide to FINALLY bring me in for test results etc.... As far as elevating my bed, I've been sleeping in my Lazy Boy recliner for the last two weeks. Last night I made it so I could only recline back to about 45 degrees or so, as I've woken up a few times prior to be nearly horizontal like I would be in bed. I understand it's not ideal for apnea sufferers to sleep on their back, especially in that position. But I have opted to sleep in the chair because it makes dealing with the mask (which leaks if I move too much as it is) and hose much easier to deal with at the present time.

Hoping to put a few nights like last night together without any other changes. It would go a long way to getting my life back on track.

If you live in the US, have you checked the marketplace that is soon to be mandatory? It may be less expensive to look there than to pay the fines for not having insurance.


Yes I've applied for it. They claim my info has to be sent to my state's Medicaid for determination first before they can offer marketplace plans and pricing. We've been denied Medicaid several times because I make too much to qualify (see: fall through the cracks). Since my state is run by conservatives, there is no state marketplace and they most likely will not expand Medicaid, so I don't expect anything different this time. Right now we're in a holding pattern.
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#10
RE: New to the whole thing
(01-04-2014, 04:54 PM)Airstream Wrote: Hi Mountain Main and welcome to the board!
I didn't know a person can have anxiety attacks while sleeping. I would think that having them, coupled with apena, would certainly disrupt your therapy and sleep.
As it sounds like your primary doctor is going to review the sleep results tomorrow, I am sure you will tell him what has going on with the anxiety attacks.
As me50 and trish said, machines have changed for the better over the years and he can get you on a new one for your specific needs.
Let us know how you make out and again, welcome to the board!

My PCP has been treating me for anxiety issues for several years. Even though I had occasional minor attacks in extremely stressful situations, I felt as though the issue had resolved to the point I could wean off the meds under his supervision about a year ago. Had no episodes like this until now.

Happy to report no episodes in 2 nights. I didn't sleep as well last night. The mask kept leaking and I think my mouth may have opened a couple of times. Not mentally ready to try a chin strap yet.

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