Forum · Please Help- Advice Needed-You Could Help My Life

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

I'm 26 years old and I have been having sleep issues all my life. I took a sleep study, but the test seemed highly flawed and I still haven't ever gotten to talk to the dr. face to face. They refused. They told me to see a Throat and Nose dr. about snoring issues. I saw both dr.s and they both concluded that nothing was wrong. That I didnt need surgery. I asked them what I could try and they both suggested an oral appliance. I did this and tried two different kind. My sleep didn't improve and I kept waking up through the night, still feeling terrible the next day. I then purchased my own sleep machine off of craigslist because the dr. refused to help me, and refused to sell me one. I had already paid a large some of money for everything so I couldn't just see another sleep dr. So I had trouble with several different masks. I finally decide to try a nasales mask since I move around a lot and feel uncomfortable with full face mask while sleeping.

I think there might be still hope for the sleep apnea machine, and I think I still need to test it on different settings. Based on what I'm about to say do you think that as well? I tried it a couple times with nasal mask, but one time the air was so much it collected in my cheeks. So maybe I should consider lowering the pressure? Also I had issues with the hose because it was cold in my room. So water did go up the hose very well. So should I try it again when it isn't winter?

Also I have tried the tape method separate from the machine but so far it seems to act very similar to how the mouth piece did. I have tried tape method for 2 months. I still feel terrible every day. I will say the color around my eyes do look a bit better and not nearly as black on most days.

Even when I weighed 140-145 pounds I still have issues with sleep. I have never slept well. Every night I wake up multiple times, and never feel rested. I always feel exhausted.

Is there still hope that the sleep apnea machine could work? I have read many success stories and I'm hoping I could finally fix my problem. I have spent so much of my own money to fix this problem, but still haven't found a solution. Thanks for any and all suggstions.

//By the way I have no idea why my username is like this, so sorry. I just joined

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

Also the pressure made my nose make a snoring sound as air entered. I was awake. Does this mean the pressure was too high?

I have also used sleeping aids in the past, but none of them work. They just make the problem worse.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

I will also say that when I used both the mouth piece and tape separately I no longer snored. But again I still slept badly.

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[-] wiredgeorge +1 point · 7 months ago Sleep Enthusiast

Well, first, I feel for you regarding the path you have taken to receive help... when you had your sleep study, did they find you had sleep apnea? Did you receive any findings? Did your insurance company pay for the sleep study and if so have you talked with them about the doctor's unwillingness to discuss the study with you. Did you receive the results, at least?

In any case, click on the tab to the left of the search icon to set your own user name. The computer user names are, well, not good I guess.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

I fell asleep very late in the test time because I have trouble sleeping in new places. I remember waking up several times and then not going back to sleep on the final time i woke up. I felt horrible as always. I wrote on the paper they gave me rating my sleep. I suggested that I probably had sleep apnea. The results came in a week later they said that I woke up a certain number of times but it was still below the apnea mark. They suggested I see a nose and throat dr., and I did but that did help at all. I believe that because I fell asleep much later than normal that reduced the amount of times I woke up, because there wasn't much time left in the study.

I followed the advice of the nose and throat dr. but the oral appliances did not work. I still woke up a lot and felt terrible all the time. My insurance paid for most of the test when I was 25, but I no longer have insurance, and I spent a lot of money on oral appliances, sleep apnea masks, and machine. I did not talk to the insurance company about their refusal, but looking back I should have! I never got to speak to the main dr. face to face. I have no idea if that is normal. I could have went to a dr. that isn't very good. He has two separate jobs at the same time. So maybe he isnt focusing on his sleep dr. role as much.

Do you think there still could be a strong possibility that I have sleep apnea? It is almost a year since the test and I still have trouble sleeping every night. What should be my next course of action? I spent so much money trying to fix my problem but it still persists. Thanks for your time.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

The way the results were given they just called me over the phone and an assistant read the report to me.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

I'm trying to look at my problem in a different way. I have always slept badly even when I was super skinny, but my gf at the time said I snored. I breathed through my mouth back then. So was it the snoring that caused my bad sleeping then? If I had combined taping my mouth to breathe through nose, and being super skinny that time would I have eliminated my sleep problem? Right now I use the tape method, but I'm not super skinny. Would that prevent the breathing through my nose from working? I probably weigh 175-185 now.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

Sorry for all the posts. Is it possible I could have central sleep apnea?

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[-] reddeb +1 point · 7 months ago

HI PracticalTanMandrill9358, I was just reading your posts and wondering since none of your doctors think you have sleep apnea that perhaps you need to be treated for insomnia???? I'm not sure if they treat these two the same?

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[-] wiredgeorge +0 points · 7 months ago Sleep Enthusiast

Apnea is treated sort of mechanically with air pushed in to keep your throat open, I doubt that would help insomnia. It was poor business not to give you a written copy of your sleep study but if they say you didn't have apnea, then you have to run with it from there unless you want to get another sleep study at a different place. That would be my suggestion if you can afford it. The study not only charts AHI but also your LEVEL of sleep; that is the deep sleep vs cat napping (sorry, can't recall name of these types of sleep). When I was diagnosed, it gave a break down of the time spent in deep sleep and they adjusted the CPAP machine to see how it affected sleep and wrote a prescription for a machine based on the study. If you have no apnea based on a second study, perhaps going back and discussing strategy with a primary care doctor might be the next step?

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

I appreciate everyone's advice. I go to sleep and wake up repeatedly throughout the night. It seems like it has to do with oxygen being closed off. It really seems like sleep apnea, how it could it not be? There has to be an explanation. I have also read many things online that say that insomnia can be caused by sleep apnea. I think my breathing is too shallow or being closed off while I sleep.

I might do another sleep study in the future but I spent so much of my savings already. So It might not be soon. I will have to save more money up. I also plan on tweaking my sleep apnea machine to see if it will help me. I well try to use lower pressure.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

Here is another suggestion. Why then do I sleep badly every single night? Why did the dr.s suggestions not work every time even though I was fully comitted to every option. There has to be something that is logical that is being missed. I really hope my sleep apnea machine will solve it. I'm determined to find the solution and to finally live a normal life.

Many of my family members on both sides have sleeping problems as well. The oldest, my grandpa has had sleeping problems all his life and he is 80. He wakes up repeatedly like I do, and is never fully rested.

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

Things seem really hopeless right now, but hopefully I can get this fixed.

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[-] ShiftWorker +0 points · 7 months ago

Hello, PracticalTanMandrill.

" It seems like it has to do with oxygen being closed off."

My Dr. had me do an at home test to monitor my spo2 during the night while I slept to determine if I needed to have oxygen during my sleep study, I did. This was a wired monitor that clips to the finger, I used some tape to make sure it did not fall of. I was also prescribed home o2 therapy for use only at night while sleeping. I did notice less waking in a panic during the night with just the o2 before my sleep study. It may be that you do not have apnea but do have low o2 levels while sleeping, I am not a Dr. of any sorts, just my experience through this journey. I also have insomnia so do not go to sleep without some aid, I do understand the feeling of not being rested and tired after a nights sleep. I will see a sleep Dr next month for the insomnia. Good luck in your journey, it takes time to find the right solution, people are not cookies so a cookie cutter approach to sleep disorders don't work! Be your own advocate when dealing with your care.

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[-] wiredgeorge +1 point · 7 months ago Sleep Enthusiast

I am not sure if using a CPAP machine is helpful and may actually be harmful if you don't use it via a prescription especially if your sleep study said you don't have apnea. Be careful and let us know how progress goes. I am not qualified to talk about any possible connection between apnea and insomnia but if you have one or the other, medical advice seems like the right way to tackle the issue(s).

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[-] PracticalTanMandrill9358 +0 points · 7 months ago

WiredGeorge- Thank you for your support. The next time I get a sleep test it will be through another dr. for sure. Like I said they said snoring was my problem, but I fixed my snoring completely . I listened to their advice but I still sleep badly. So from what I can tell the first Sleep Dr.s findings were incorrect.

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[-] PracticalTanMandrill9358 +1 point · 7 months ago

I bought the sleep apnea machine from a former dr. by the way. .//

There is this guy on ESPN named Ryen Russilo, and with his sleeping problems that he described sounded exactly the same as mine. He said he wakes up a lot, never gets good sleep, and has weird sleeping patterns. But he said he refuses to get help because it is uncool to him.

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[-] PracticalTanMandrill9358 +1 point · 7 months ago

To anyone that has depression. Is it true that your sleep is worse because of it? Have you found a solution to your sleeping problems? If not how do you deal with your tiredness? I have depression, and I'm trying to see if this is the only reason my sleep is horrible.

I have noticed that I do have dreams every night.

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[-] Athena1965 +1 point · 7 months ago

I have depression. I've had it probably my whole life. I've only recently been diagnosed with sleep apnea. I wonder, have I always had sleep apnea? Which comes first the depression or the sleep apnea?

I never remember my dreams. I always wake up in the middle of the night. Without my medication for depression, I can't fall asleep or stay asleep.

Depression does really affect sleep. Apparently sleep apnea also really affects depression. Chicken and egg.

Probably the biggest issue for me, is that I think my depression makes me not want to give the CPAP a chance. A lot of folks especially on this board, point out that CPAP therapy will save my life. Guess what, when you're depressed that is no actual motivation. There are plenty of mornings that I wish I hadn't woken up at all. So when a doctor or a sleep therapist tells me I should do this for my health and to stay alive, I just look at them and say I'd rather just be done with all this and join my late husband thank you very much.

I suspect that this is part of the compliance problem with CPAP. If your grip on "the joy of life" is loose to begin with, then passing away peacefully in my sleep doesn't really sound like a bad alternative to what You go through every day sometimes just to get out of bed.

Hell I'm so dark, my ENT doctor even went over a tracheotomy with me. He said that aside from CPAP, since I'm not really a candidate for surgical solution, the only thing he could do would be offer a tracheotomy, but I'm sure you wouldn't want that he said. Don't be so sure I said why don't you tell me about it.

OK he said, you don't mind going down the dark road? Lead on Dr. I said.

Maybe I'm not helping with this post, I am trying to be honest. Depression warps a lot of things, including your point of view. So maybe only take what I have to say with a grain of salt.

I would definitely see someone about the depression. And don't let them push you off on just giving you pills. You must demand talk therapy as well. These days the mental health industry only likes to prescribe medication doesn't want to actually work with a patient. Like everything else in this world, you have to fight like hell to get what you need.

Good luck! Let us know how you're doing.

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