edit: Doctor says no apnea now pg. 3

[FairwayGirl]

I did check out non 24, and all the circadian rhythm issues. I feel like I have some kind of circadian rhythm issue, but I don't know what. And I think my doctor wants to start with the oxygen test, because they don't trust my last sleep doctor. They just want to be sure if my oxygen is dropping, and then we will move forward to see if I'm having epileptic events during my sleep :/ I'm just so frustrated with not getting any better, and constantly feeling so exahusted :/

[Julie]

I think a sleep EEG is a great idea - at least you'll have some answers.

[FairwayGirl]

I think it is too. I don't think it's a bad idea to do the oximetry test first. I'm just annoyed because I bought one to do at home, and it won't load to sleepyhead!! It always says there is no data to upload every time! So, I'm up for doing that first. But, if she wants to it with out CPAP, I'd like to do it with CPAP too. Just to gets read on both. Then I think doing the EEG sleep study is a great idea

[robysue]

I'm so sensitive that if my dog wakes up during the night and licks his leg it wakes me up! I can't stand any sounds :

The dog should not be anywhere near your bedroom once you go to bed.

Sorry for the confusion, drop melatonin meant drop the dose. I have tried many times to lower it or even not use it.

How much melatonin?

I have called around to find someone to help me with a CBT and dealing with the panic and found no one local.

You may need to call psychologists' offices rather than MD's of any sort. Unless you are in a rural area it's hard to believe that nobody does CBT

I'm not angry with the machine, it's just things touching me and the hated noises.

It sounds very silly, but using words like "hate" to describe sensory things can make the problem worse. (This was part of what I had to learn in some of my own CBT.) Yes, you don't like the noises. But if you can use language that is less loaded than "hate", sometimes that makes things easier to tolerate.

Do you have problems if you put the mask on and turn the machine on when you are NOT trying to get to sleep? Or is the sensory stuff overwhelming only when you are trying to get to sleep?

I tried to wake with light, but the only time I ever feel awake is in the dark. If I wake before daylight I feel better all day (until I see the sunlight, then I start to fall asleep!!) so, light therapy doesn't work at all things like that are what frustrate me the most! I just want to know why I only feel awake during the night

It sounds like you may very well have a circadian rhythm problem. Have you mentioned the fact that you feel more awake in the dark than you do after you see the sunlight in the morning?

[FairwayGirl]

I do know my dogs should not be in the room with me, but it is the only time I see my dogs. They are in a crate all day, my kids have activities all afternoon and I get home and feed everyone and go to bed. I literally go straight to bed. I rarely even get to pet them before bed. The only thing I refuse to give up is my dogs in bed. I know that sounds bad, but it is unfair to them and we just reduced them 6 months ago and they are extremely attached. The male follows me everywhere. When I cook he lays at my feet. But, I don't get a chance to even pet him until bed

I take 10mg melatonin. I have asked 3 different sleep specialist, my neurologist and my pcp. Every one of them said it was a good dose for me. I started at 5, which is what they sell over the counter, and had no results, so I take 2 of them, and it helps me fall asleep, I just cannot stay asleep.

I am in a rural area :/ we have 5 acres, as does everyone around us. Most all our neighbors have cattle and horses :/. I'm around 30 mins to an hour from Oklahoma City, but, I work full time, have very little leave, because I just started working a year ago. My husband is taking college classes. My kids have activities. And my son has multiple medical issues that I've had to take off for. I had to take off to do sleep studies (the first doctor had me take off the day after because he kept me later because I didn't sleep early enough) and I had to take off to go see him 2 times, and once to see the new one, and I've had to see my neurologist because of all this. I simply don't have the time to see anyone right now I have looked up several CBT I's online and worked through all of them, to no avail. Again, if epilepsy is what is waking me nothing is going to work through it. I have extreme noise sensitivities. I can't be in the same room with my kids or husband when they eat. As I write this my son had to leave the room because he had a plastic bag he was rolling up. I can't stand pennies dropping, or those door stop's bring "boinged" this is a very short list of my sound issues. Misophonia is very real my son is getting treatment for his sensory processing disorder, but when I was a child it wasn't something recognized, I never got help, so I just have to deal with it I've used the machine for long periods with out sleeping, it doesn't change the noise level. I DO fall asleep. That isn't the issue. I just wake up constantly.

I fully believe I have some kind of circadian rhythm problem, but, we need to find out if I am waking because of epilepsy before exploring that. It's silly that I feel better awake all night. I feel better when I wake before the sun is up. I feel better all day on days when it's raining! But if the sun is out I'm exahusted! Hopefully that answered some of these issues. I just feel so confused. I'm trying my best to keep moving forward.

Last night I did not use my CPAP, I was told to try to not use it and see if my epilepsy was better. (I figured it would be safer to do it on the weekend when I didn't have to work, or drive!) I have not had even on epileptic event...I had at least 3-4 an hour yesterday. It's just so frustrating!!

[FairwayGirl]

My doctor set me up with an oxygen sensor to test my levels tonight. Does anyone know what this will determine? I talked to her today, and she only wants to test it without my CPAP, not with it. I'm not sure what the data will tell her? And I don't know what she will do next!?! I'm still frustrated and don't know what we will be doing next. She postponed the BiPAP test for now.

[HoseCrusher]

You will wear a pulse oximeter while you sleep. It fits on your finger. It will track your oxygen levels as well as your heart rate while you sleep.

When trying to figure out a problem it can provide some valuable information.

[FairwayGirl]

Thank you, but I was trying to figure out her reason I know what the machine is (I even bought one ) I just want to know how that info will help her if she's trying to figure out if I have epileptic events all night? Also, she said it's because she doesn't trust my most recently fired sleep doctor, and trusts my 2 year old sleep study more. I had zero apnea or hyno things during that one, but by oxygen level dropped to 63% at one point during that one!?! It dropped 4 times during the night, but only once that low (which is very low!) I just wanted to know what she wants to know from repeating just the oxygen test!?! I just really want to feel better :/

[HoseCrusher]

So after last night what did your oxygen levels do and what did you see from your heart rate graphs?

[FairwayGirl]

I don't know :/ it will be several days before I have any answers. The DME guy told me today that he wants me to use it tonight with my CPAP to get my oxygen levels with it, for a comparison. I'm hoping for some answers. I feel better today than I have felt in many months! Way better than any day with my CPAP so frustrating. I just don't get why I feel better without it

[CowFish]

I am much worse off since starting CPAP than I ever was before. 3-5 epileptic events per hour when I was having 1-2 a month before!!

Sorry, I haven't been following your posts, so ignore my question if it doesn't make sense. Have you tried discontinuing CPAP for a few nights to see if your epileptic events return to pre-CPAP levels?

Well, now I know:

I feel better today than I have felt in many months! Way better than any day with my CPAP so frustrating.

But, I don't know why you did not try a night without CPAP before now.

[FairwayGirl]

I have tried several nights without CPAP. I don't usually feel much better. I woke up many times last night, but I still feel better. But, I was extremely tired when I went to bed last night, so I fell asleep earlier than normal. My Fitbit shows I got 3 1/2 hour sleep, but I was in bed closer to 7 hours. I am going to try to recreate my sleep tonight by going to bed at the same time, but don't know if I will be able to sleep since I'm not fall over tired today (for the first time in recent memory!) I'm interested to see what the oximetry text shows in comparison.

[FairwayGirl]

I don't have any answers yet, but. They DME guy came out to collect the oxygen sensor. He asked if he could take my SD card from my machine so he could review the data. I told him that was fine, and that I review the data often. He said that he understands, but that he sees much more data than I could see. So. I showed him sleepyhead. He was totally blown away!! He said he had no idea that software was out there. And is amazed how hard I'm trying to figure out what is wrong, and why I'm not getting better. Hopefully between him collecting data and my new doctors I get some answers. But, he does not feel a BiPAP would be a good answer either. He feels with the dreamstation with the exhale assist is close enough to a BiPAP to know it won't be the answer but, I still have not lost hope!

[FairwayGirl]

I got results from my oximetry test today and they show I'm in the normal range for oxygen all night without the CPAP and with. The sleep doctor now wants me to not use a CPAP any longer and believes I do not have sleep apnea. I have noticed there is a significant increase in apnea when I increase pressure when I view it on sleepyhead. But, I don't think there is a way to run my machine with out pressure to check that way. I am so confused. My doctor was happy to tell MRI should feel better not needing it, but it doesn't solve the problem since I went to the doctor originally because I was not getting restful sleep I would love any advice!

[Julie]

When's your sleep EEG happening?