Still no more than 4 hours of sleep.

[shaneequa79]

I just flat out need some support.

Scared Newbie in need of support

New to the forum...

I was diagnosed about 12 years ago after a hospital sleep study.

I remember they got mad at me for getting up too many times and use the restroom. When it was over I didn’t sleep a wink, however the technicians said, “Oh well...you slept for 20 minns here and 15 minns here, and 10 minns here, so we have enough” as they were showing me the graphs and data.

Got a machine and used it MAYbe 4 times, just could never fall asleep with the mask (nose pillow at the time) and was never convinced I truly had apnea because of how the study went, how my pressure was set at 7 and how that was much lower than others around me who have it.

So that was that. Live my life on 4 hours of sleep. A good night would be 5-6, but as long as I got 4, I can function. Not to mention the fact that I was young, so when I was hit with the hospital bills due to very poor insurance coverage, I was even more deterred to continue any sort of treatment. The bills went to collections and I ignored it all.

Fast forward to 2 1/2 years ago, I had my first Grand Mal seizure.

It was thought to be alcohol induced after a night of HEAVY partying. I had not been eating, drinking enough water, obviously still not sleeping along with not taking the correct dosage of my bi-polar medication (Lamtical) which also treats seizure disorders. My neurologist said it was unlikely the meds were masking a underlining issue, but that I HAD to take care of my untreated apnea and get more than 4 hours of sleep.

Go back to the Cpap? Yea right...not after what I had already experienced. So I stopped drinking alcohol, stopped smoking cigarettes, lost about 30lbs and upped my meds. But like an idiot I let my prescription expire and didn’t make time to see a mental health doctor to continue because I “felt fine” Now once again, I’m not taking the proper dose. But hey, it’s ok right? Because I don’t have Epilepsy...doctor said so.

In August I had another Grand Mal seizure. More than one means Epilepsy. It also means I can’t drive for 6 months and I had bought a new car not even 5 weeks prior.

The constants between now and then...lack of water and food along with incorrect medication doses...and lack of sleep.

I work in Seattle and the day it happened was one of the worst days of the summer wild fires; the city was blanketed in smoke and ash. I had done my best to avoid being outside, but I just had to go over to the Columbia Tower to get breakfast. I honestly think that this was a factor as it was hard to stay hydrated during all of it. Not to mention the fact I was working a lot of overtime and having apiffanies discovering that my poor eating was directly related to my emotional state, which was pretty even keel now that I had a great job and finally found a great man (awwwww)

So...got back on the correct therapeutic dose of medication, started being very mindful of water intake and eating properly...but this time went to the sleep doctor.

Got a new machine, a new mask and a renewed sense that I in fact absolutely need to tackle this sleep issue I have had for pretty much my entire life. I WILL be successful. I want this to work. I’ve got amazing medical coverage and the advancement in technology with home studies and machines made me very keen on the whole thing. I was ready.

But it was the same ol same ol. If anything I had MORE anxiety over it now that seizures are in the mix. Couldn’t fall asleep, it felt like too much air was blowing. Then the worry math game of, “If it’s 11pm, and I need to be up at 5, if I fall asleep by 12, that will give me 5 hours....” which causes even more anxiety as anyone with any type of sleep issue will attest to.

But the night wasn’t as successful as I had hoped. All of the data said zero. Zero events per hour, zero leakage, zero AI. The pressure did go up to 6 and it said total time was 5.26 hours, one of those hours though was trying to fall asleep.

Honestly I didn’t think I did, I felt like I was waking up all the time. And as per usual Im up after 4 hours, hot and sweaty but this time I had a headache.

I’m a troubleshooter by nature. I also like to gather as much data as I can and talk to others to get a real sense of things. I’m so happy to have stumbled across this forum when I woke up and googled “what is total AHI”. If it was zero, then why...why am I supposed to wear this machine?

I’m terrified I will have another seizure. Terrified I will never be able to drive again. Terrified to die in my sleep, however pleasant that may be for a way to go when compared to other ways.

Stats now:
10/12 days used
3/12 days 4+ hrs of usage
Pressure: 6.1
Leak: 11L/minn
AHI: 0.1
Total AI: 0.1
Central AI: 0.0

I can finally fall asleep with it on and I know I need to wear it more than 4 hours but I haven’t gotten there yet. I’ve tried various adjustments and still can’t sleep more than 4 hours. Since I started I now wake up with headaches. I had to lower the humidity and hose temp because the mask is filling up with a lot of water.

Still. No more than 4 hours of sleep. This is worse than before.

I’m not sold on this. I can’t take more time off of work to go to the doctor or go to an Apria retail location for mask fits and other adjustments because I took all of it for my seizure (plus getting around is a bit of a challenge because I’m not allowed to drive)

Any words of encouragement are very much appreciated and thank you for taking the time to read my pity party.

[Pugsy]

Welcome to the forum.

If you have condensation in the mask or hose (also called rain out) and a heated hose .....you need to increase the hose air temperature.

See this thread posts number 2 and 3.
viewtopic/t94035/Pugsys-Pointers-3Deali ... -road.html

Why do you need cpap if the AHI extremely low on the machine....that's the number of events that the machine could not prevent..
It is NOT the number of events that was prevented and we have zero way to know how many apnea events were prevented from the data available on the machine.

Do you have copies of your sleep studies?

As to why you can't sleep any longer with the machine? What are you doing after the 4 hours....taking the mask off and getting up for the day or going back to sleep without the mask and machine on?
What medications are you now on?

[shaneequa79]

Oh my gosh thank you so much for the reply! To answer your questions:

I do not have a copy of my sleep study. My current sleep doctor was going to obtain that. Since it was done 12 hrs ago, the dr said they might need to do another one if they can’t. I emailed them today and asked where all of that that was at. I would honestly prefer to do another study now that I have more knodlge on the issue and since my life has changed so much since then. (No drinking, no smoking, better insurance, lost a little weight, etc.)

After I take the mask off I go back to sleep, but still only 4 hours, and that is combined. If I wear the mask for an hour, take it off and go to sleep, it will only be for 3 hours.

I use an app called Sleep Cycle that tracks your movements while you sleep. I know it’s not any sort of real or medical data, but it is a nice guide. Looking at that data it’s always been just about 4 hours of actual sleep.

Also when I’m with my boyfriend he says I “sleep hard” but that I don’t snore, I don’t gasp for air, but that I also barely move. I sleep on my stomach and he calls it “dead man face down” sometimes he worries and will check to make sure I’m breathing, and I am.

I am currently on:
200mg of lamictal for seizure disorar and mild bi-polar disorder (cyclothymia)
25 mg of Hydrochlorthiazide for high blood pressure (which has been GREAT over the past 2 years)
I am “pre” diabetic
I am hugely overweight. 330lbs 5’6”
I am also African American (if that makes any diff)

Let me know if you need more data.

[Pugsy]

If it's been 12 years since the sleep study....might be worth it to get a new one. Times changes a lot of things.

Insomnia is a common side effect of the Lamictal
https://en.wikipedia.org/wiki/Lamotrigine

Insomnia is more than just the common "I can't go to sleep at the beginning of the night" which is called sleep onset insomnia
but insomnia can also be sleep maintenance insomnia which is what happens when we wake up too many times during the night or we wake up and can't go back to sleep.
Your 3 to 4 hour sleep segments might be sleep maintenance insomnia at work.

Try not to yield to the little devil on your shoulder tempting you to "just go back to sleep without the mask so you can get some real sleep"....that's a bad habit that is easy to make and hard to break especially if the insomnia monster comes to the party with the little devil on your shoulder. They are putting you on a very slippery slope that doesn't end well at the bottom.

General rule...if asleep or any chance of sleeping...mask and machine on.
Half the night with treated OSA sleep and half the night with non treated OSA sleep is a recipe for disaster...better than nothing I suppose but far from ideal and guess which your body remembers the next day....the non treated OSA sleep...so you feel more like crap.
The good that the first half of the night does gets outweighed by the bad that the second half non treated sleep does.

Your situation is complicated and while we can help with some technical aspects if needed (once we see some machine reports) and maybe mask comfort suggestions....I would run all this by your doctor for sure and if it was me...I would opt for a fresh sleep study.
12 years is a long time especially with no real treatment in between and a lot can happen or change in 12 years.

[shaneequa79]

Thank you so so much.

I’m going to do the following things:

Ask my doctor for a new sleep study. I’m a big fan of data, and I want to really see what’s going on as it is now.

Ask my neurologist if I can change when I take my Lamictal. Right now it’s am/pm 12 hrs apart. I’ve never experienced the drowsiness side affect they said could happen...but I’m always tired, so who knows. I’m not too keen on switching it up as it has been the only medication to treat my bi-polar where I DIDN’T have a horrid side effects. With it also doubling as anti seizure medication, I don’t want to shift things too drastically in that respect. If it comes down to it I will, but I want to make the minor changes first.

I will put the mask back on. When you said that the hours of sleep not on the machine kind of negates the hours with, that really hit me. It makes sense too because if anything I’ve felt worse since beginning treatment again.

I’m a troubleshooter by nature. I want to try all of the tips and tricks before trying bigger changes.

I’m so glad I found this forum. Just talking with you has given me hope to keep going. One day I also hope I can come back and support people like you supported me.

I will be successful. I just will.

[Grace~~~]

Hi Shaneequa79 ~~~

If you've got Pugsy helping, you've got the best of the best (maybe in the WORLD). SO happy for you!

One thing I thought I heard/felt while reading your post was a lot of anxiety. I am not qualified to give ANY SORT of CPAP advice but I can speak about anxiety and maybe offer a peripheral suggestion.

A suggestion I got here on CPAPtalk in the beginning that helped me SO MUCH was to just "get acquainted with your mask". Try to wear it when you are on the computer, or reading or watching TV. Let it become second nature ~~~ so that it begins to feel comfortable. Breath with it ...trust it, LOVE IT.

The bonus is that all of that "bonding" time counts towards compliance hours and so you won't need to stress that issue as much.

Finding the right mask and making sure it's comfortable is really the most difficult part.

From what I've read here, "sleeping hard" and facedown is probably your bodies way of preventing apneas as much as is possible without a machine. It's harder to do with some masks more than others. You may need a variety of pillows to tuck under your chin or arrange so that you can sleep in your favored position with the mask ...COMFORTABLY.

You need that sleep time to heal your body. I can't wait to watch over the upcoming weeks and months for you to be sleeping a full and beautiful eight hours a night.

Keep posting and learning and reading and asking questions. The search box here can take you to lots of great information.

Have you installed SleepyHead?

Best of Luck.
~~~grace

[Snoregone Conclusion]

I'm in Issaquah, and I just started less than 2 weeks ago with trying to figure things out for using an APAP, to treat what my best information indicates is UARS. I've taken full control over setting the pressure ranges and I've been experimenting.

For a hobby/activity I've done a bit over 2 years now, I do indoors climbing of 40 foot walls at a climbing gym in Bellevue. In the past, I had myself convinced I was afraid of heights, but that's not the truth of the matter: I'm afraid (rationally) of falling from high enough and getting seriously hurt. Thus, when in an airplane, as an example, I can look out the windows to what's below, and have no emotional reaction, because I can reason that the airplane and the pilot are safe equipment and operators. For climbing, I can trust my equipment I'm using, and my belayer, and thus, I have zero worries about falling beyond merely dinging myself up a bit if I hit holds on the way down (not a far fall anyway when your belayer is doing their job) and losing progress on the route: I can look down, hanging from the rope, from any height, doesn't even faze me. It's an intellectual mind over matter and fear.

For the same reason I can do the climbing and not fear anything meaningful, I have no problem with using the APAP: I know that the FDA very strictly regulates how things are done, and the devices have lots of failsafes to keep it from being anymore dangerous than breathing in regular room air. Thus, that takes care of anxiety, because it can all be reasoned about as "I know this won't harm me, it can only help me, though it may not be the most comfortable at first."

This is how you get yourself through this: you use reason to overcome anxiety for using it, and once you get in the pattern of using it like you should and feel the beneficial effects, your anxiety will be the opposite: "Oh no, I must use it or else I'll feel like crap and put my health at risk!"

[shaneequa79]

It’s been 21 days and I am worse then when I started. Its been agony. If anything I am worse now then I was starting the treatment. I’ve had more broken sleep and have missed more work than before. I now get headaches and experience claustrophobia, I never have before until now! It’s been 21 days...I can’t keep going like this. I want to quit, return the machine and suffer whatever consequences because it can’t be worse than this delirium I’m living in right now.

No one is believing me that I am trying and it’s not working. I do everything I’m supposed to, bed at the same time, wash the mask and hoses every day, machine is lover than my head, constant adjustments, tried my old nose pillow, all of it. Nothing.

I am a natural troubleshooter. I like to explore all avenues and gather info from all sources and flush every possibility out until I find the best one.

Yes I have reached out to all of my doctors. Yes I have been taking my medications, yes I have asked for a new sleep study, yes I am seeking help for anexity, yes I have FMLA for work, yes yes yes yes...I am doing as instructed.

I’m trying. It’s not working. No one is believing me.

[Julie]

Just wondering when you were last checked for other possible causes - maybe coincident - of some of your symptoms, with labs and whatever else would be done. Sometimes things get overlooked if we only go in one direction. What about (and sorry if you mentioned these before) thyroid problems, sugar, cardiac, Lyme disease (it's real, if not common), etc. etc.

[shaneequa79]

Just wondering when you were last checked for other possible causes - maybe coincident - of some of your symptoms, with labs and whatever else would be done. Sometimes things get overlooked if we only go in one direction. What about (and sorry if you mentioned these before) thyroid problems, sugar, cardiac, Lyme disease (it's real, if not common), etc. etc.

Thank you for responding, it means a lot to me.

I had a blood panel done last year...everything was normal. I recently had a blood draw to rule out diabeties (because I still was unsure) and I am still “pre diabetic” I’m not sure what other tests to ask for. I’m usually very trusting of my doctors but they just seem to think that Cpap will solve it if I “just keep trying”. I’m trying...it’s worse.

If it’s been untreated for the past 12 years, if I’m having worse problems starting treatment again, why are they not thinking of exploring other options? I don’t know what to look at or look for and I just need them to believe me. I respect the debt and schooling doctors take to be able to help people...AND I know my own body...this is not working.
This is the latest from my doctor:
INterestingly they showed probable severe sleep apnea. You stopped breathing 14.6 times per hour . 15 per hour would be moderate apnea.
If we add in the respiratory events such as arousals from sleep caused by snoring, or partial obstructions of breathing that were not scored as apneas, you had
38 times per hour in which you were having respiratory problems. The 38 per hour is called the respiratory disturbance index or RDI. Hopefully you will be able to accomodate to the APAP mask to help treat this.”

That test was 12 years ago. What I need is a new study and to be taken seriously.

Why do we as patients have to fight so much to be heard? I’m sorry if there was a kickback from Apria to put another machine on another person and it’s not working.

[palerider]

I’m trying. It’s not working. No one is believing me.

Post some charts, let's see what's going on.

[Arlene1963]

Why do we as patients have to fight so much to be heard?

Hi Shaneequa,

This is so true, especially when it comes to how sleep apnea is treated. It saddens me to think how many of us go through months and months of battling to try to figure this out, sleep deprived and often very vulnerable to just giving up.

I hope that you post some charts and that folks here can help you where the medical support has failed.

FWIW I went through a difficult adjustment to CPAP, massive anxiety and insomnia.
Now, almost 3 years later I can't imagine sleeping without it and it has become a vital part of my life.

Just wanting you to know that you have support here.