Not sure I trust my diagnosis.

[DontLetTheHatFoolYou]

Apologies if my first post is a little out of order, I've been going through this for so long..

It all started when I was 13 years old, I remember it clearly.
I was on a work experience placement working in an office through a program my school offered, this was back in England - I moved here (VA) 12 years ago.
At around midday I felt extremely sleepy and couldn't focus on anything, if I didn't know better I'd say that someone had drugged me - it was that sudden.
Since then I've had episodes where I'd literally act out whatever I was dreaming, waking up with a black burn mark on my wall from rewiring a plug socket to throwing my (then) girlfriend out of bed because a truck was coming toward us, you name it I've done it.
My first sleep study was done around 7 years ago, I was diagnosed with Idiopathic Hypersomnia, apparently a catch-all for something they can't really find.
Since the study I've been on clonazepam every night to stop me from getting up. It doesn't make me feel any better in the morning but I'm less likely to do my usual crazy nocturnal habits.

After 7 years of being on this med I decided it was time to see another sleep doctor. I explained the whole story and bought the paperwork from my old sleep doctor so he had records, he booked me in for another study with MSLT which happened about 6 weeks ago.
The doctor diagnosed me with OSA with an index of 25. I received my CPAP 9 days ago and have been using it every night, I don't really have a problem with the mask or the machine but I'm really not feeling anything.
Looking through my data my AHI ranges from .99 to 3.15. I don't expect a miracle overnight but I have a nagging feeling that my diagnosis is another catch-all and isn't addressing the real problem.
I still talk in my sleep, I've reduced my med to a quarter (it's extremely bad coming off this) with the intent to rid myself of it completely.
Knowing that I'm still a real newbie with CPAP I understand that I still may have a long way to go and I still need to give it more time.
At around midday I'm still hit with this wall of sleep and lethargy which I'm desperate to lose. Provigil helped however it's expensive and having lost my job in January (Guess why) I'm in no position to afford another prescription.

I'm 37 now and feel that a large chunk of my life has passed by while I've been asleep. I do have very rare days when I feel lucid and it feels amazing, they are very rare though.
I'm not particularly depressed but I'm skeptical and need to know that something will help.

Thanks for listening.

[Drowsy Dancer]

I see why you might mistrust your diagnosis, but with an AHI of 25 it sounds like sleep apnea is at least part of your problem. Beyond that I'm not qualified in the least to speculate other than offer my sympathy. It sounds horrible. Do you have a copy of your new sleep study? Does your new guy have a background in neurology?

[DontLetTheHatFoolYou]

Do you have a copy of your new sleep study? Does your new guy have a background in neurology?

Hello
Not yet, I hadn't thought of asking for a copy but I'll ask to see it on my follow-up.
My first appointment before the study was with a local sleep center, they have another center in a different city where another sleep doctor oversaw my study, he is also a neurologist.
I asked my doctor if I could have a fully data compliant machine, he said yes but when I got the machine home I found the only data it was storing was compliance which I had to change myself - whether this was a fault of the DME or lack of instruction by the doctor I don't know, but in my (admittedly small) mind I'd have thought that a doctor would want to see where I was with treatment.
I did ask him if my night terror-like symptoms were indicative of apnea, he explained they were.
My plan is to come off the clonazepam and let the treatment do what it's supposed to. Insurance has paid for the machine and it's not costing me anything to use, I just hope I have that breakthrough I've been seeing from other OSA patients.

[Mary Z]

Good luck. I hope things turn positive for you soon. As to not trusting your diagnosis- being diagnosed with sleep apnea does not mean that nothing else is going on. I'm glad you're seeing a neurologist.

[VikingGnome]

Be very careful about getting off Clonezapam too quickly. It must be done very gradually, maybe as long as 6 months to a year given the length of time you've been on it. Clonezapam withdrawals are horrendous. Most serious is withdrawal seizures which can be fatal. So don't withdrawal without medical supervision. Do it slowly and stay safe.

[Drowsy Dancer]

My plan is to come off the clonazepam and let the treatment do what it's supposed to. Insurance has paid for the machine and it's not costing me anything to use, I just hope I have that breakthrough I've been seeing from other OSA patients.

I'm told coming off benzos is just a bear. Good luck with that, go slow as others have commented.

Keep in mind that for some people improvement on CPAP is always very slow and gradual, with no apparent "breakthroughs." They still end up feeling a lot better. For others, there are breakthroughs only after a long period of little seemingly little improvement (I had a "breakthrough" of sorts only after two months of faithful use of my machine, and then another one after six months and a period of where I really struggled). There are also folks (like our robysue) who have a terrible time adjusting and actually feel worse before they start feeling better. You don't get to pick which category you fall into. Yes, you will read some instant success stories, but that's not the norm. The body takes time to heal.

The only thing that will guarantee failure, of course, is not using the machine because you don't think it's helping, but it doesn't sound like that's your issue.

[Pugsy]

I just hope I have that breakthrough I've been seeing from other OSA patients.

Ahhh....don't we all? Everyone wants the "miracle" overnight remarkable change in how we feel the next day because we read that others have experienced it.

Welcome to the forum. The hard truth is that most people don't have the overnight miracle. There are some very lucky people who do see it though. Sure makes us turn green with envy. Myself included. OSA doesn't happen overnight and feeling better doesn't often happen overnight either. At least not in the manner that we yearn for.

You have no choice. You have to use the mask and machine every night and even if you don't see remarkable changes immediately the machine does help prevent further stress on the body. Give it time. How much time before you see the remarkable changes you read about? Unknown. It takes as long as it takes.

It isn't all about the "numbers". The numbers are just a part of it but we tend to dwell on the numbers because that is the only real thing we can measure and gauge our treatment with easily. The other stuff is more subjective and just hard for us to wrap our brains around it. While giving the treatment time to let the body heal from years of damage and stress...use the time to take a hard look at any other factors which might affect the quality of your sleep which in turns affects how you feel each day. Take a good look at your sleep hygiene...does it need work? Mine always does. I stay up too late and play on the computer till I go to bed...bad I know but I do it. Hours of sleep? Do you get enough hours of sleep. Is that sleep fragmented for any reason? If it is then work on any possible causes of sleep fragmentation. Not everything is related to OSA. I have a lot of pain from damaged spine. It hurts like a SOB some of the time. Turning over in bed causes pain that wakes me up 30 plus times in a night. Lots of fragmented sleep there and with sleep fragmentation my sleep stages get all out of whack and my sleep is not as restorative as it could be.

You are young and lucky to have found out that you have a problem at this young age.

Take the time to look at your sleep in general as well as any other possible suspects in not feeling the "miracle".
Hours of sleep, fragmented sleep, pain, bed comfort, bed pillow comfort, general health issues, insomnia, general sleep hygiene, meds....you already know about that on..many meds have left over effects like fatigue and sleepiness.

Remember this machine that we use is designed to fix one thing...the collapse of the airway. It can't fix bad sleep that comes from some other cause.

I suspect you will do just fine. Sometime in the future (hopefully many months from now) you will likely have a chance to sleep without your machine for some reason for maybe part of the night (or take an unplanned nap) and then you will feel horrible and realize that you did have improvement with how you felt...it just came on slowly.

So don't set unrealistic goals and don't judge your perceived progress by someone else's progress. There is a YMMV sticker with pretty much every aspect of cpap therapy.

[Grand-PAP]

Hi DontLetTheHatFoolYou,

Welcome to the forum. You have some issues that are WAY beyond my ability to address. However, there are many here who can and will give you help! I will provide some info on two issues.

I asked my doctor if I could have a fully data compliant machine, he said yes but when I got the machine home I found the only data it was storing was compliance which I had to change myself - whether this was a fault of the DME or lack of instruction by the doctor I don't know, but in my (admittedly small) mind I'd have thought that a doctor would want to see where I was with treatment.

In your profile, you indicated that you have a ResMed S9 Elite. My first CPAP machine was a S9 Elite and it is fully data capable. The only two ResMed machines that are not fully data capable are the S9 Escape and S9 Escape Auto.

Knowing that I'm still a real newbie with CPAP I understand that I still may have a long way to go and I still need to give it more time.

If you spend enough time on this forum, you will eventually run across a person who has an immediate positive reaction to xPAP therapy; however, the majority of us experienced it over a much longer period. My issues were NO WHERE near as complicated as yours. As a matter of fact, when I began to read threads on this forum, I had difficulty relating to the symptoms that most poster explained. I have been on therapy for six months. It was probably four or five months before I began to really experience the benefits of therapy. Ironically, I had "some" of the same symptoms that most expressed, but apparently to a much lesser degree. For example, people indicated they were "foggy-headed." I didn't realize I had been, until I realized that I was much more "clear-headed" that I was before therapy.

I hope others will be able to give you some advice regarding your more complicated issues, but I think your positive realization that, "I still need to give it more time" will be beneficial!

Good luck in your therapy!

[DontLetTheHatFoolYou]

Thanks all for the amazing welcome and advice, it's appreciated and most definitely needed.

I'm slowly stepping down off the clonazapam (thanks for clarifying the spelling ), I quit completely 5 days before my study and was rewarded with what felt like small electrical shocks in my upper body - not fun.
I know the meds can affect any treatment and coming off them completely is going to be another 2 months or so.
My OSA usually happens after 1AM, the S9 sometimes has to kick me twice to bring me out of it and I can see in my charts that my breathing seems to become erratic in the few minutes leading up to the event.
Sleeping patterns haven't changed much, bed between 9-10PM and waking at between 4 and 5AM.
I'm definitely sticking with the treatment and hope to be able to tell a success story in a few months, or however long it takes.

In the meantime maybe I should set up a video camera to record my nighttime wanderings, I could make a fortune in ad revenue on YouTube.

Again, thank you.

[Pugsy]

My OSA usually happens after 1AM,

Could be REM stage sleep related. Many people are known to have their OSA be worse in REM sleep. Documented for sure in my own sleep study reports. AHI of barely 12 in non REM sleep but in REM sleep it goes wild with AHI of 53 and oxygen level drops to 73%. It is fairly common along with OSA being worse when sleeping on ones back. Thankfully I don't have that added problem but many people do.

REM stage sleep typically starts about 90 minutes after sleep onset and as the night goes on we get into REM more quickly and stay in REM longer....so it is very common for those of us that have more events in REM to see some pretty wild stuff going on in the wee hours of the morning.

You might look at your reports and see if you see a similar pattern to your events.
Here is what a normal hypnogram would show in relation to sleep stages.


When you get your sleep study report it normally will document sleep stage events and sleep position events and you can see if one or both of those situations affects the number of events.

[Maxie]

Hang in there. I'm one that took from Dec 27 until about a week ago to feel better but now I do feel great and I'm very careful to make sure I don't change anything about my CPAP machine, mask, etc because I don't want feeling good again to every go away. I've found that getting the therapy to work takes tweaking my life to make it work but it can be done. At first I wanted it to be like some pill that I could take and wake up feeling better but that is not the way it works for most of us. You will see people posting on this forum that have a lot of knowledge about the process and all of them had to work at making the therapy work so hang in there and find what works for you and keep us posted.