Desperate for sleep

I am a nurse in desperate need of answers and sleep. I am 39 years old. Once in nursing school, I "diagnosed" myself with sleep apnea after learning about it. Basically, ever since, every single person thought I was crazy and said there is no way I have S.A. I didn't fit the criteria. I'm not a large girl...I'm 5'4" and 130 lbs. I'm athletic and workout, but I've always been tired and could fall asleep anywhere if I stopped long enough. Then, life as I knew it changed almost 4 years ago. I had surgery on my nose...deviated septum repair, turbinate reduction, and nasal stenosis repair. I've never felt right since. I knew something was wrong and my surgeon brushed me off. I was not taking no for my demand for having a sleep study....he told me "no way in the world" do you have sleep apnea. But, he knew I wasn't going to go away until he ordered the sleep study. Sleep study came back.....SEVERE OSA. My events registered at 70 times an hour. Unbelievable. I tried CPAP...felt worse and horrible with it. Sought 2nd opinion...1st surgeon didn't do everything he had said he did. So I have another surgery to trim away some excess turbinates in my right nostril..which was so large was overgrowing into the back of my airway/throat. Still felt horrible for months. I sought other opinions which included additional sleep studies...opted for a mouth piece for my SA. It isn't the typical treatment for someone with severe SA...but begged for a shot at it. I used it but still felt exhausted. Found out after I sought a 3rd opinion from an ENT who I feel saved my life...I needed surgery on my sinuses and my "last" tonsil needed to be removed and made a difficult decision to give it a shot to have the UPPP surgery (look it up). I also had mold and fungus growing inside of my nose and throat....which long went undiagnosed for over a year by 2 ENT's. I had such severe OSA because I was born with my soft palate growing and extended down longer in the back of my throat and after braces...made my mouth even smaller and no place for my tongue to go...but to block my airway when I slept. I used to snore like something else. After a long time being on medications to rid myself of the mold and fungus...I had a 3rd surgery in less than 2 years. I had my 5th or 6th sleep study about 6 months after my last "major" surgery. My OSA is literally cured....only 2 events an hour which is basically normal when I wear my mouthpiece. If I don't wear it it's 19/hour. I could deal with that...but my brain is waking up 50's/hour. I desperately need to find out if anyone else has the diagnosis of the common occurence of sleep apnea being fixed with treatment, but brain is still waking up. I've gone to numous specialists, eliminated so many things in my diet, tried Amitriptyline with the hopes of it shuting my brain off...so I could sleep. My slow wave sleep is incredibly fragmented and I don't rest and recover. I have an MRI scheduled, another sleep study with a repeat daytime study (first was neg. for Narcolepsy), and finding a Psychiatrist for potential bloodwork. I'm missing out on life...please help.

lauriej wrote:I am a nurse in desperate need of answers and sleep. I am 39 years old. Once in nursing school, I "diagnosed" myself with sleep apnea after learning about it. Basically, ever since, every single person thought I was crazy and said there is no way I have S.A. I didn't fit the criteria. I'm not a large girl...I'm 5'4" and 130 lbs. I'm athletic and workout, but I've always been tired and could fall asleep anywhere if I stopped long enough. Then, life as I knew it changed almost 4 years ago. I had surgery on my nose...deviated septum repair, turbinate reduction, and nasal stenosis repair. I've never felt right since. I knew something was wrong and my surgeon brushed me off. I was not taking no for my demand for having a sleep study....he told me "no way in the world" do you have sleep apnea. But, he knew I wasn't going to go away until he ordered the sleep study. Sleep study came back.....SEVERE OSA. My events registered at 70 times an hour. Unbelievable. I tried CPAP...felt worse and horrible with it. Sought 2nd opinion...1st surgeon didn't do everything he had said he did. So I have another surgery to trim away some excess turbinates in my right nostril..which was so large was overgrowing into the back of my airway/throat. Still felt horrible for months. I sought other opinions which included additional sleep studies...opted for a mouth piece for my SA. It isn't the typical treatment for someone with severe SA...but begged for a shot at it. I used it but still felt exhausted. Found out after I sought a 3rd opinion from an ENT who I feel saved my life...I needed surgery on my sinuses and my "last" tonsil needed to be removed and made a difficult decision to give it a shot to have the UPPP surgery (look it up). I also had mold and fungus growing inside of my nose and throat....which long went undiagnosed for over a year by 2 ENT's. I had such severe OSA because I was born with my soft palate growing and extended down longer in the back of my throat and after braces...made my mouth even smaller and no place for my tongue to go...but to block my airway when I slept. I used to snore like something else. After a long time being on medications to rid myself of the mold and fungus...I had a 3rd surgery in less than 2 years. I had my 5th or 6th sleep study about 6 months after my last "major" surgery. My OSA is literally cured....only 2 events an hour which is basically normal when I wear my mouthpiece. If I don't wear it it's 19/hour. I could deal with that...but my brain is waking up 50's/hour. I desperately need to find out if anyone else has the diagnosis of the common occurence of sleep apnea being fixed with treatment, but brain is still waking up. I've gone to numous specialists, eliminated so many things in my diet, tried Amitriptyline with the hopes of it shuting my brain off...so I could sleep. My slow wave sleep is incredibly fragmented and I don't rest and recover. I have an MRI scheduled, another sleep study with a repeat daytime study (first was neg. for Narcolepsy), and finding a Psychiatrist for potential bloodwork. I'm missing out on life...please help.

Get an appointment with a board certified neurologist or sleep specialist and see what is going on with your fragmented sleep. It may take time to find "the" doctor but they are out there.

Have you tried sleeping pills or tylenol PM?
Good Luck.

Mary Z wrote:Have you tried sleeping pills or tylenol PM?
Good Luck.

Just don't get tempted to take more than the recommended dose of Tylenol PM, especially in combination with other things like NyQuil that also contain acetaminiophen (APAP). Compared with other OTC drugs, it takes a smaller overdose of APAP to be dangerous, and the damage is MUCH worse.