Need advice while waiting for the final diagnosis

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Need advice while waiting for the final diagnosis

Post by elixeus » Wed Aug 26, 2015 10:30 pm

Hi everyone,

I have been a lurker on this site for the past two weeks. I want to provide a brief history on what's been going on with me and have you guys weigh in on it. I will try to keep my back story as concise as possible and I hope, in the future, this post may be helpful to others regarding the very frustrating process of getting diagnosed with it. Please be gentle as I have not been feeling clear of mind, nearing my 3 month mark on September 10th of this year.

I haven't journaled in some time. Mainly, I haven't been feeling well. It all started on June 10th, 2015, a few days after my Mom left from her visit to celebrate my 30th birthday - we went skydiving.

It all started with a deep-seated feeling that I wasn't feeling well. I had warm skin, I felt more fatigued than usual, I suffered from dizziness and nausea. From there, the symptoms just kept piling up: intense fatigue/daytime sleepiness, dizziness/blurred vision, muscle/joint/bone pain, overall sense of weakness and lack of coordination, feeling very out of it, headaches that eventually turned into severe headaches. The point is, I could go on and on about my symptoms.

My first visit was to urgent care on June 17th. They did blood draws and hydrated me. The doctor said they couldn't find anything wrong and suggested that I was simply depressed. Depression can feel very real too, no matter how much I tried to convince him what I was experiencing felt very physiological. I told him, I am not one to complain and I have a high pain tolerance, but this was affecting my life, and my job. Subsequently, it wasn't too soon after that I found myself at the emergency room on June 21st, presenting with the same symptoms, but this time unexplained chest pain. By this time, I had purchased a blood pressure cuff that was reporting very low blood pressure and heart arrythmias on semi-recurring basis. At this this time, the doctor was perceptive to my needs and ran additional tests.

I then followed up with new primary care doctor at the time (my former doctor of the past 8 years recently retired and is no longer practicing)... leaving me 100% alone on this issue. She, too, was very dismissive of my symptoms. She asked if I had been taking my antidepressant. I was honest, no, I stopped taking them like the 1st or 2nd week of May. She told me to continue back on them, this time 150mg to start and ease myself to 300mg. Did I listen? No. The reason? I was already feeling so amped up that paradoxically I was tired and also suffering from bouts of insomnia that anything that further contribute to this feeling probably wasn't a good idea - especially if my kidneys were underperforming (mild rental insufficiency from chemo I had over 10 years ago). I had been free from AD for over a year and a half and hadn't felt better until the most recent health issues began to emerge. I had been on and off AD for probably a total of 3-4 years out of the 30 years I have been living and breathing here on earth.

Things continued and a few more trips to the emergency room. This time, on July 5th, I wasn't feeling too hot. The doctor this time at the ER was this seemingly compassionate doctor, but aside from running basic EKG and not living up to his promise of "monitoring my heart for a bit", they ran a full-bore IV. I threw up, so they also ran IV Zofran at the same time. I brought up I was a cancer survivor and he immediately took this to mean that I was scared that my cancer had returned. That isn't what I was insinuating in the least. He told me to follow up with my oncologist... ummm hello? Once the IV had ran its course, they were not the least bit hesistant to force me to sign discharge paper work and accuse me of asking for pain medicine simply out of the fact I told them my pain was a "7". That's not it at all, I wanted the doctor to hear me out, but he said that at the ER they only treat emergent symptoms, which is just a euphaism for "we only treat obvious conditions, we are not going to spend the time trying to find out what is wrong with you." Later I read the doctor's report after I had requested my record and many thing in this report he had written were not even true, even regarding the basis of the conversation I had with him before I left.

Now we get into mid July, I go back to the emergency room again. I start to ask myself, what am i doing here? Every blood test they ran was coming back negative. I just decided I would live with sticking to the blood pressure cuff and only visit the hospital unless I deemed a medical emergency to do so... otherwise I was wasting time and money on an issue that they had no interest in solving.

I visited my primary PCP one last time before I decided I had one of two choices: (1) take her diagnosis of depression, take the pill and STFU, or (2) continue onward because they had only run a full-body CT scan, but thus far that was it. By this time I had already seen the endocrinologist that I had pushed and requested a referral for. Her referral was an awful one.

I saw the endocrinologist and she said, why are you seeing me? I told her it was because I felt whatever I was experiencing was feeling systemic. She wanted to only test my testosterone level. I had to bug her to test my thyroid and coritisol level. At that time, I asked for her to test my PTH level... she took this to mean that I wanted her to test for TSH. Nice guess, but you're one organ off.

I subsequently due to the lack of professionalism in their office and their follow through call stating the endocrine doc said "there is nothing more we can do for you from an endocrinological standpoint left me in tears.

It was at that time that my Mother, who lives 1200 miles away was telling her doctor that I had been experiencing all of these symptoms. He immediately recommended to my Mom that I get a sleep study done. Could this all be due to sleep?! I wasn't convinced at first and furthermore I didn't even consider the fact I may have a sleep disorder.

I decided at this time to consider my pursuit and this time look for a second opinion. I found a compassionate, single practice doctor. There was no reason to believe this new doctor too, with his fresh perspective wouldn't believe me either, but I had to start somewhere. In all fairness to this doctor, I had tasked him with a lot... having to parse through all my previous labs and offer up his opinion. At that time, I told him my symptoms matched those of Addison's disease and perhaps hyperparathyroidism. He claimed it couldn't be because ionized calcium is the gold standard measure and the one reading we had indicated it wasn't a problem. I asked at that time for a sleep study and for an echocardiogram of my heart, and an ultrasound of my parathyroid glands. He said he couldn't really do either and to have my primary PCP take care of it.

Having felt defeated, I went back the next week and he finally agreed to the sleep study. So it was ordered, it took a week for it to arrive. I won't even start into the whole debacle with Apria and the lack of customer service and incompetence on their part. Anyways, I got the at home sleep study kit, which was a type 3 sleep study device manufactured by ResMed. It took me an hour or so to get asleep. I started the recording at 10:30PM when I went to bed and ended it at 6AM because I felt the likelihood of getting back to sleep to log anything was negligable. It recorded: pulse and blood oxygen saturation (via pulse-ox) and breathing effort via nasal cannula, and maybe breathing effort from the placement of the belt... but I am uncertain of this.

The following week I go into my second opinion doctor because I was experiencing pain all over my body. Mostly one of the worst headaches of my life, and maybe to a lesser, but somewhat equal degree my boint/joint/muscle pain. I had been having headaches for the past several months, but never bad enough to take much other than Tylenol for it. He prescribed me oxycodone and tramadol, to use "sparingly". One pill per 6 hours. I don't feel like this was enough to quell the pain, but I just deal with it. At that time, I asked if the sleep study had come back and it had. The ResMed report indicated I had an AHI of 6, which is probably an underestimate, if anything. Lowest O2 sat was 85%, average was high 80s. I guess it depends on how bad it is because I read that the accuracy increases the worse your sleep apnea is. I was at first very surprised and upset about this diagnosis. However, that's when I started doing research, much of which was done here. I began to accept that if this is what is necessary to turn my life around, I would be willing to do anything necessary. Focus on the benefits, not the negatives of this treatment.

After a huge debacle with the sleep lab office and them losing the fax, I finally figured out I would be seeing a pulmonologist. I met with the sleep doctor, who was a PA, on August 21st. The earliest they could take me in with the doctor my second opinion recommended was end of September. So I caved and took this appointment.

She said that from the at home sleep study, it appears that I only have mild sleep apnea, which may not even require treatment. However, she said (in some cases) that these at home sleep studies can sometimes underestimate how bad a sleep condition really is. She ordered a split-night study; first half PSG, second half for CPAP titration. I asked if my apneas occurred during the second half of the night, what then? They said they would get me setup on APAP for titration.

So I went in last night for the split-night study. A very nice place. I got an Ambien to help with sleep and of course had a migraine, so I also took one oxycodone. The sleep lab was aware of this. In any case, it took the tech about 30 minutes to get me hooked up and the study started at 10:35PM. It took me until probably 12:00AM to get to sleep and I slept until probably 2:15PM. I couldn't get back to sleep. She didn't wake me up to titrate me and when I asked I was just briefly told that I didn't meet the criteria and this upset me because if it isn't sleep apnea... I am out of ideas. I have been feeling this way for such a long time... so I began to cry. Eventually I got back to sleep at 4AM this morning and slept until 7AM. When I asked the tech why she didn't wake me up earlier, she said it was because they wanted to get as much data as possible. Unfortunately, this also meant I had to quickly fill out the questionnaire and get out without having the opportunity to get all the goop out of my hair. I'm sure this is typical of sleep labs and I certainly don't hold it against them. My fear is that this sleep study wasn't indicative of my normal snoring and the few times I have caught myself not breathing and woke up gasping.

I will be meeting with the pulmonologist in two weeks. Seeing as how this all went, I was very upset and wondering if they will tell me I don't need _PAP device. I honestly believe I have it. I wake up with headaches all the time. My body sometimes is afraid of going to sleep. But I usually feel short of breath when I lay down anyways.

Bottom line is this. Tonight, I told my best-friend, whom I have had the honor of being friends with for the past 18 or so years that I seriously think I have a sleep disorder.

I told my best-friend, whom I have known for the past 18 years that I seriously think I have sleep apnea. He has been aware of my struggle the past nearing 3 months now. I never mentioned to him I thought I had sleep apnea. Tonight I was talking to him via text. Following my update he said. His immediate response was "I don't know what to say. However, I do believe you have some sort of sleep disorder. I have heard you sleeping sometimes when I had stayed over... I remember a time when you stopped breathing and I remember I was amazed at how long before you took a breath... It was so shocking it stayed in my mind." He also saw me having a "mixture of snoring and heavy breathing." "You would breathe out and I remember waiting for your next breath. It was shockingly long. I would not be surprived if you have some kind of sleeping disorder."

So the bottom-line is even though my split-night study didn't go so well, I think I have all the confirmation I need to know that I have a sleep disorder. Whether or not they can detect it in the lab under forced-sleeping conditions is an entirely different story all together. My follow-up is on September 9th to discuss the results.

Thanks for reading my really long story. But, I hope I get the chance to start treatment, even if it is under trial. I can't wait to feel better. I just wanted to offer up this opportunity to introduce myself because in the next two weeks I'll likely be joining the club.

Once again thanks for reading and putting up with my very long story. I would like for you guys to weigh in if my pulmonary doc comes back and says that I don't have it, what should I do other than pressure her for a trial of CPAP? I am willing to pick up all costs if it means me reclaiming my life!

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Need advice while waiting for the final diagnosis

Post by Julie » Thu Aug 27, 2015 2:37 am

Hi, welcome. Get a copy of your study and upload to Imgur.com, then post a link to this thread so we can see how you did and give our 2 cents' worth. Also do whatever you can to not sleep on your back now as it provokes more apneas. If you do end up with a low 'score' on the study, you could be considered to have positional apnea that can be treated without Cpap, but you'll find out soon enough. If it does come to needing Cpap, take a look at this now for an overview... keep in mind that certain models of machines have recently been replaced by newer ones, but the gist of things otherwise is valid.

http://maskarrayed.wordpress.com/

User avatar
49er
Posts: 5624
Joined: Mon Jan 16, 2012 8:18 am

Re: Need advice while waiting for the final diagnosis

Post by 49er » Thu Aug 27, 2015 6:34 am

See this link for lists of healthcare providers who can write a prescription if some reason, you can't get a pap machine through insurance and your pulmunologist won't cooperate

https://www.cpap.com/cpap-faq/Prescriptions.html

But one step at a time as in many situations, machines will be prescribed even for mild sleep apnea as the physician will justify it as necessary due to the various symptoms the patient is experiencing. Obviously, I can't make promises in your situation because every situation is different and you don't yet have your results back. I am just trying to point out not to get ahead of yourself.

Another thing to keep in mind - You could end up having a mild AHI but an RDI that is alot higher due to RERAs being scored. That happened in my case last year as I had a 5.9 AHI with a 23 RDI.

Best of luck.

49er

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Fri Aug 28, 2015 1:25 pm

Thank you Julie and 49er for your response! I appreciate your feedback and you have been very gracious to this newbie here It sounds like the Resmed S9 Autoset is the best. It sounds like there is software available to analyze and better fine tune the treatment?

If I order from CPAP.com, how long does it take for them to fulfill orders? Do you believe it is superior to working with a local DME, especially if the companies in the area aren't so great on the customer service side of things? I was also wondering what I can expect as far as setup is concerned. Does it come with instructions? What can i expect when the package arrives?

I just want to be prepared for next week because I feel like there is a high likelihood I will need CPAP, but it sounds APAP is the way to go because it can work in either mode.

Any recommendations on masks? I know it is a matter of person preference, but I'm a mouth/nose breather. I wake up with a dry mouth ever since my nose was broken playing ultimate frisbee in HS. I have a deviated septum, so I don't really see myself using a nose or mouth mask. I hear leaks can be an issue too.

Thanks agains for the warm welcome and I love the support and positive energy of this community. I am so focused on feeling better that I'm sure I can't expect treatment to go 100% right from the get go, but I want to maximize my compliance with treatment. My Dad had a BiPAP machine and he never used it. He hated the thing and he didn't live as long without it, but is a choice that all patients make and it sounds like approaching treatment with an open mind is the only way to go. Keep trying things until you find what works.

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

User avatar
Wulfman...
Posts: 6688
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot

Re: Need advice while waiting for the final diagnosis

Post by Wulfman... » Fri Aug 28, 2015 2:31 pm

elixeus wrote:Thank you Judy and 49er for your response! I appreciate your feedback and you have been very gracious to this newbie here It sounds like the Resmed S9 Autoset is the best. It sounds like there is software available to analyze and better fine tune the treatment?

If I order from CPAP.com, how long does it take for them to fulfill orders? Do you believe it is superior to working with a local DME, especially if the companies in the area aren't so great on the customer service side of things? I was also wondering what I can expect as far as setup is concerned. Does it come with instructions? What can i expect when the package arrives?

I just want to be prepared for next week because I feel like there is a high likelihood I will need CPAP, but it sounds APAP is the way to go because it can work in either mode.

Any recommendations on masks? I know it is a matter of person preference, but I'm a mouth/nose breather. I wake up with a dry mouth ever since my nose was broken playing ultimate frisbee in HS. I have a deviated septum, so I don't really see myself using a nose or mouth mask. I hear leaks can be an issue too.

Thanks agains for the warm welcome and I love the support and positive energy of this community. I am so focused on feeling better that I'm sure I can't expect treatment to go 100% right from the get go, but I want to maximize my compliance with treatment. My Dad had a BiPAP machine and he never used it. He hated the thing and he didn't live as long without it, but is a choice that all patients make and it sounds like approaching treatment with an open mind is the only way to go. Keep trying things until you find what works.
First of all, "get educated" as fast as you can.
The "medical mafia" won't tell you the secrets of how they're going to try to screw you.

But, to answer the part I put in bold, I purchased all of my initial equipment from CPAP.COM back when I started.......and my insurance provider reimbursed me for 80% of it. But, I had discussed it with them ahead of time, they considered me to be "in-network", I created an invoice and billed my insurance provider as if I was the vendor......I was the billing party and they were the party being billed. Worked pretty well and everybody saves money. I had already met my deductible for the year with my sleep study, so this was a benefit of that. I was also bound and determined to bypass the local DMEs (whom I had already visited and interviewed).......and was even prepared to buy everything out-of-pocket if the insurance provider had balked on reimbursing me. I had already read too many horror stories on the forum about local DMEs by that point.

The items are shipped from CPAP.COM very promptly and only the shipping time is a factor. You can even specify "overnight" if necessary.
The items come with clinical setup instructions and user manuals.
I've often said......."If you can read, you can set up and configure this stuff."

Be sure to get a fully-data-capable machine (that has available software) and do lots of research on the masks.
The mask I started out with is the same ones I'm still using after over 10 years. I've tried a few others over the years, but they just didn't work as well.
But, everybody's different.

And, finally, do lots of reading on this forum. There's a wealth of information in the archives. There is virtually NOTHING "new" on the forum. It's all been discussed many times before. Use the "Search" function (above) as much as possible.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Fri Aug 28, 2015 4:35 pm

Thank you Den for your in-depth reply and taking the time to write it all out!

All my DMEs in the area suck, so I think I will go the CPAP.com route (especially the overnight shipping!). It sounds like there is no major disadvantage to a newbie working with an online retailer rather than a local DME (I have been reading/experiencing they don't even know what they're doing). For instance for my at home study they threw the device in a bag and only included the most basic instructions. The pack even contained one of their previous patient's questionnaires, which I wasn't impressed with. I left it in the bag. Between this and working with them in the past with my sick and dying Dad, I went over there and left an angry note in their mailbox on a Sunday. I demanded I speak to the manager AND a direct line to them. I got a call back from someone else - at least she could speak fluent english. She event old me how understaffed they are and she wasn't sure what to tell me. Needless to say, between your testimonial and my experience with Apria, I am very inclined forgo dealing with them and probably order through CPAP.com. I just hope that won't be a problem with insurance or my pulmonologist. I will be willing to pay for treatment out of pocket, but only if necessary.

I am fine taking it upon myself to guide the treatment and get setup, I just didn't know if I was missing anything additional. I can be certain that the DMEs in my area would charge me more, I would get less, be on the phone often with them, and just be upset. I want to make this process as easy as possible it sounds like taking charge and control over it is the only way to achieve optimal health while on this treatment.

I wish i would have known this when my Dad was alive because the DMEs in the area and other factors forced him to think he didn't have a choice when it came to his treatment, AT ALL. They didn't work with him, or for him. I feel empowered knowing that these machines are not locked out, like they would like you to believe and that you can do whatever best works for you. So much I never realized...

I am like a sponge right now and I am soaking up as much information as I can. Thank you again for your reply. I'm sure I'll have more questions while I read up and next week when I have script in hand and I order supplies. Most, if not all of you have very sound advice and I can tell you all care. So it is great knowing I'm not alone on this journey and once I become more of a seasoned vet at this, I of course will be on here posting, helping the next newbie in line.

Much love and respect to all of you!

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Tue Sep 01, 2015 3:45 pm

Hi everyone. I received a call from my pulmonologist office on Monday. They want me to come in to discuss the results of the sleep study (from August 25th). I already did an at-home sleep study that came back positive which provoked me to follow-through and schedule my PSG. My appointment is on Thursday morning - her earliest appointment. In my opinion, I didn't sleep enough / normally enough I'm not sure what it is going to show, if anything.

I am wanting to order equipment as soon as possible so I can start reaping the benefits of treatment. The consensus recommendation was a ResMed S9 Autoset APAP machine, which is fully data-capable and also very useful if CPAP doesn't work for me, I can always rely on the Auto mode.

I was wondering if my sleep study indicates central/mixed if I should also keep in mind a couple other machines I should consider in the BiPAP/VPAP category (that are fully-data capable and compatible with SleepyHead)? Please advise.

Thanks again!

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

User avatar
Wulfman...
Posts: 6688
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot

Re: Need advice while waiting for the final diagnosis

Post by Wulfman... » Tue Sep 01, 2015 6:01 pm

elixeus wrote:Hi everyone. I received a call from my pulmonologist office on Monday. They want me to come in to discuss the results of the sleep study (from August 25th). I already did an at-home sleep study that came back positive which provoked me to follow-through and schedule my PSG. My appointment is on Thursday morning - her earliest appointment. In my opinion, I didn't sleep enough / normally enough I'm not sure what it is going to show, if anything.

I am wanting to order equipment as soon as possible so I can start reaping the benefits of treatment. The consensus recommendation was a ResMed S9 Autoset APAP machine, which is fully data-capable and also very useful if CPAP doesn't work for me, I can always rely on the Auto mode.

I was wondering if my sleep study indicates central/mixed if I should also keep in mind a couple other machines I should consider in the BiPAP/VPAP category (that are fully-data capable and compatible with SleepyHead)? Please advise.

Thanks again!
Yes, definitely. It does depend on what they found in the sleep study that can require a different type of machine. It's good you're thinking about it and doing your homework ahead of time, but I understand your situation......you don't want to put the cart in front of the horse so to speak.
If you're leaning toward a ResMed machine, you may also think about the A10 (newest generation) of them as opposed to the S9.

On a side note, I would have sworn that I didn't sleep much at all during the first half of my split-night study. That's pretty common.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Fri Sep 11, 2015 12:13 pm

Alright, just an update. I went an saw the pulmonologist to go over the results of my PSG. Her first question to me was "how did the study go?" I told her I didn't sleep much and it was an atypical night for me (sleep efficacy was 57.x%). I don't have the full sleep study in hand, yet, but it said I suffer from both centrals and obstructives, so mixed/complex apnea. The study was partially inconclusive, otherwise they would have titrated during the split-night study. The scores weren't especially high for that night, but during the at home sleep study they were, an AHI of 6.41 and RI of 8.4. At home study had me at 19% of the night was spent at less than 90% oxygen saturation, lowest desat was 85%.

I was prescribed an APAP machine, ResMed S9 Autoset with H5i Humidifer with Climate Control Tubing and an ResMed AirFit F10 FFM, which I purchased through CPAP.com and still have yet to bill insurance because I'm not sure if I have the right machine. I would like insurance, if they will cover it, to cover the more expensive of the machines (if I need a BiLevel of ASV).

I have a follow-up appointment with my pulmonologist in 3.5 weeks from now. I'm sure they will have me bring in my SD card. I ran the scores through SleepyHead and when I have a chance will post the reports. First night was like 1.3, second, third, and forth nights I believe were above 6. Fifth night was 0.91, and last night it was 0.31.

It took me some time to get used to APAP. 5-9 cm H2O. So the first night I enabled EPR with a setting of 2. Turned it off for the third night and got awful results. Turned it back on last night and got pretty good results. Is there any disadvantage to enabling EPR? Isn't it like a lite-version of what BiLevel provides? I think my body is getting used to having to breathe against the pressure.

As far as improvement is concerned, I am still quite tired. I was told by oncologist that it can take upwards of 4 weeks to notice a significant improvement. I notice some difference with CPAP, but as expected, I'm not seeing huge improvements, just baby steps towards it... I think. No comment on oxygen desats because I don't have that accessory, but in the PSG and at home sleep study, I had desats of 87 and 85, respectively. My RERA events are also quite high, but not sure what they are like now that I'm on CPAP - I would wake up without even realizing it and rub my face. As I understand and RERA are precursors to SDB that doesn't get bad enough but still has a negative effect on sleep. Any ideas are appreciated. Oncologist is also going to have me see a GI doctor because I weighed 173 in April and I am now 146 pounds, so she finds this kind of unintentional weight loss concerning and they will check my GI tract, which means being scoped from both ends. Wondering if I should ask for them to check gallbladder/pancreas because most mornings I am very nauseous. While I don't feel refreshed in the morning while on CPAP, I do feel mentally sharper and a little less icky.

I still need to get a full copy of my PSG, but I was told I spend a meager 5% of my time in REM, and ~45% of my time in Stage 3, stage 2 is the second highest and stage one is even less (but greater than the time I spend in REM).

Thanks again everyone for reading and for your feedback.

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas
Last edited by elixeus on Fri Sep 11, 2015 12:22 pm, edited 1 time in total.

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Need advice while waiting for the final diagnosis

Post by Julie » Fri Sep 11, 2015 12:22 pm

Hi - if I were you I'd want to be aggressive about looking into your GI problems - they don't sound like the usual GERD that so often goes with OSA and until you know more about it I wouldn't do anything much radical about OSA/Cpap except to be sure you're getting treated to a reasonable extent. If something else is going on it's very likely it could affect Cpap and it's important to find out what it is.

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Fri Sep 11, 2015 12:33 pm

Hi Julie,

I do have a small hiatal hernia and a moderately distended gallbladder that the doctors haven't been thinking too much about. How do I know? Because I requested a copy of my records and the radiologist noted it, but doctors - even in light of my complaints about morning nausea and lack of apatite and weight loss have failed to look into it. I have been forcing myself to eat, realizing I am rather anorexic as far as appetite is concerned, but I can only force-feed myself to an extent. I have had GERD in the past, but it has been so on and off that I never pursued the endoscopy that my PCP suggested back in 2010 - plus I was a poor student

Per your recommendation and my oncologist (cancer free, 10 years, bone cancer), I will go in to get my GI tract checked out hopefully within the next week or two. In the meantime, however, I'll just keep up with the CPAP therapy. I know everyone responds to therapy differently, but how long before I start CPAP that I should notice an improvement, a month? A year?

Thanks for your reply, support and for your sound advice!

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Need advice while waiting for the final diagnosis

Post by Julie » Fri Sep 11, 2015 12:43 pm

Hi - good to hear you're following up on things next week!

As far as a timeline goes, it's so hard to say because we're all quite different, our studies, set-ups and pressures are different never mind our own physiologies. Some people notice a definite difference within a week, others take a fair amount longer, and it's quite subjective because if you've very gradually felt sleepy and slower over a long time (years), it can be hard to know what's 'normal' unless there's a really radical change in a short time. Wish I could give you a more definitive answer, but you also (as do lots of us) have other issues going on that can impact your Cpap, and need sorting out too - hopefully it won't be too long.

User avatar
Pugsy
Posts: 63941
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Need advice while waiting for the final diagnosis

Post by Pugsy » Fri Sep 11, 2015 12:50 pm

elixeus wrote:Is there any disadvantage to enabling EPR?
Generally no disadvantages unless you are one of the very small % if people who develop centrals solely because of bilevel pressures. It isn't totally impossible as it does happen to a few rare people but your machine would be flagging centrals all over the place if you were one of those people.
It's weird that what is usually the first level of machines to treat centrals is also a machine that can cause them but the majority of people fall into the "this is what we use to fix the centrals" category.
The usual progression for addressing centrals...regular bilevel and if that doesn't work then move up to the ASV type of bilevel.
elixeus wrote:Isn't it like a lite-version of what BiLevel provides?
Yes, that's what it feels like. Some very minor timing differences but in general using EPR is like using a bilevel. Pressure support on the bilevel devices is just the difference between inhale and exhale.
EPR allows you to create essentially pressure support with your machine. The limitation being the EPR settings only allow you to go to 3 which is of course a 3 cm difference between inhale and exhale and a bilevel device allows for a higher pressure support if needed.

I once tested my bilevel machine (ResMed S9) in cpap mode with EPR of 3 and fixed bilevel mode with pressure support of 3....and I couldn't really tell any difference except maybe a teeny tiny difference in the timing. I had to really concentrate to tell any difference. I knew what to look for...most people wouldn't even notice the difference.

Please note that your EPR at 2 is limited to only being able to drop to 4 if the minimum pressure is 5 cm...so until events start driving the pressure up you are only getting a 1 cm drop when the pressure is at 5. The machine can't go lower than 4 cm.
I know it is going to sound weird but a minimum of 6 so that you get the full benefit of EPR at 2 is likely more comfortable exhaling than the 5 cm minimum. It's the difference that offers the comfort and 2 cm difference is going to be more comfortable than 1 cm difference for most people.
While awake you won't be having any obstructive apneas to drive the pressure up to 6 where the full benefit of EPR at 2 comes into play.
Something to think about and/or maybe talk to your doctor about in terms of exhale comfort.

How long before you see/feel improvement in your unwanted daytime symptoms?.....don't know...my crystal ball is broken. It could be next week, next month, next year. I had some symptoms go away pretty much immediately (the low oxygen killer headaches went away in 2 or 3 weeks) but the magic "energy miracle"...still waiting on that one. But I do have more energy...just not as much as I would like.
What I usually tell people that it can come on very gradually and you don't really notice how much it helps until you end up sleeping without cpap (like I once was on a trip and forgot the long hose) and get a rude reminder of just how bad things used to be.
I still don't wake up feeling like "I want to run a marathon today" but at least I don't wake up feeling like I just ran one. I have other issues besides sleep apnea that mess with how I feel and the cpap machine can't fix those issues no matter how much I wish it would.

If your AHI stays low...then that means your central count is low...then there's a very real chance that this machine will work well for you and you won't need to step up to that high dollar ASV machine.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

elixeus
Posts: 26
Joined: Wed Aug 26, 2015 9:23 pm

Re: Need advice while waiting for the final diagnosis

Post by elixeus » Sat Sep 12, 2015 11:33 am

Hi Julie and Pugsy. Thank you for both taking the time to write back and for your responses and explanations.

@Julie: Thanks for letting me know I'm not alone and that everyone's different, the importance of sticking with it, and to not forget/underestimate other potential health problems (148 pounds (normally ~170) and constant nauseous... yay). Other health issues cannot and should not be discounted.

@Pugsy: Thanks for the in-depth explanation of EPR, BiLevel and ASV. From my data, I would say 10% of my CAs are due to high pressure, 40% are due to decreases in pressure (not purely due to EPR, but machine calibrations; since I have operated in both modes and similar CA events occur), and 60% of the rest don't follow any pattern other than being scattered throughout the night. I certainly will talk to my doctor about turning EPR back on with a level of 2 and possibly increasing the pressure to a minimum of 6. I understand what you're saying and appreciate your expertise/experience and your advice seems sound to me! On a related note: I turned off the ramp feature almost immediately (first day) because I felt like I was suffocating/having difficulty exhaling. At my starting Rx pressure of 5, I still find myself a little claustrophobic and would like the pressure higher, but it is a bit of a toss-up. EPR on, with Rx starting pressure of 5 can make things more or less comfortable, so I will definitely follow-through on your advice as it makes a lot of sense.

I'm glad to hear that the oxygen-killer headaches went away in 2-3 weeks. I am still having them, although less frequently. I'm not sure why my pulmonologist didn't go over the report in detail with me as far as the oxygen desats are concerned (19% of my sleep spent in less than 90% and as low as 85%!)... to me, those should be concerning as any metabolically active organ, such as: brain, heart, kidneys and to a less degree lung and gut are likely to be affected. I have been waking up in the morning feeling still pretty nauseous so I think that double procedure I'll be going through won't be a bad idea, for peace of mind, at the very least. I need to get my doctor to prescribe some more anti-nausea drugs and something for more pain medicine or some other headache medicine to knock them out.

Haha... I love your comment about the marathon. That is a good way of looking at it and that analogy works very well based on the way I have been feeling since starting APAP.

I have a co-worker at work that has a sleep disorder and he recommended that I actually go see a sleep doctor, rather than just a pulmonologist. My PSG indicated that I spent a measly 5% of my time in REM sleep. My sleep efficiency I think is a bit exaggerated, but not by a ton, with an efficacy score of 57.1%. He was emphatic with telling me that although he doesn't suffer from sleep apnea, he does suffer from circadian rhythm disorder where his biological clock gets offset 15 minutes each night. He said that SDB is bad, but SDs in themselves are equally as serious. My story to him was uncanny with what he went through leading up to a diagnosis. It took them three months to diagnose him because the physiology of when you awake vs. when you are asleep are vastly different and for some reason, even today, doctors don't understand this. He said you need a sleep doctor, not a pulmonologist for a full-picture of sleep pathology, You'll be lucky if you find a practitioner that will look for SDs or SDB early on. Several doctors, psychologists, and ADs thrown your way on this journey. Just because someone might be depressed, one cannot conclude causality. Otherwise, eventually you'll find a doctor, or in my case, my Mom who lives over 1200 miles away told her doctor about it and that's what got the ball rolling with all of this. I didn't consider myself to have SDB, even though I look back it makes a lot of sense. I am just extremely grateful to God, my Mom, and you fine folks here on this board for all of the support!

Anyways, thanks again. Both of you are very compassionate and I really appreciate you taking the time to read my ramblings and to comment on them in detail. Thanks again for that!

_________________
Mask: AirFit™ F10 Full Face Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: @HSS: 8/5/15; PSG: 8/25/15; Dx'd: 9/3/15; Start Rx: 9/4/15; SDB: Mixed Apneas

User avatar
Pugsy
Posts: 63941
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Need advice while waiting for the final diagnosis

Post by Pugsy » Sat Sep 12, 2015 11:52 am

You may find that your REM time increases with optimal therapy. I too had poor REM % and poor sleep efficiency during my sleep study but what is common is that our OSA is worse in REM...so the apnea events happen and it causes an arousal/wake up and we get kicked out of REM sleep only to have to start the sleep stages all over again.
So if you are like me...your sleep apnea might be worse in REM (it's quite common). Don't be surprised if you start remembering more dreams now.

During my sleep study my O2 went to 73%...I had it checked after about 3 months on the cpap machine and it never really dropped significantly so cpap fixed my low O2 problem.

Now sometimes I do still get some bad headaches but those I know are usually from sleeping in some weird position on the bed pillow. My neck is in pretty bad shape (metal plate in it) from the arthritis so I still sometimes get what I call "neck headaches".

Remember that it's normal to have a few occasional centrals...we all have them from time to time. They aren't a problem unless they are present in large numbers or causing desats or if they are sleep onset centrals and they keep waking us up all the time.
So seeing a handful of centrals here and there isn't automatically a cause for alarm.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.