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Complex sleep issues - Charlie Sue - 02-20-2016
Hi all, I have spent much time here reading and benefiting from everyone else's posts in the hopes that I'd see something on this topic of particular concern to me.
I have a 20 year history of insomnia of the waking up throughout the night variety. I was diagnosed with moderate (right on the line with avg of 15.7 events/hour) obstructive sleep apnea last fall and started on apap the beginning of October. I had a couple of rough nights with all the hose etc., but adapted pretty easily. I have been consistent with my therapy with the exception of a week when I had type A flu and just could not cope with it. My AHI ranges from .5-2.50 and has never been higher since I started my therapy. I am committed to this therapy. My sleep study also resulted in a diagnosis of Periodic Limb Movement Disorder. In January, my sleep doc put me on a drug to control that problem. Unfortunately my sleep has not improved with any of this treatment and now I am on a medication (must be made of solid gold--given the price) to help with daytime sleepiness. Apparently I microsleep--did it right in fromt of my sleep doc at my last appointment.
I'd really like to hear from others with these complex sleep problems and how you've sorted through it all to get to a place where you get good sleep.
Thanks for any advice, wisdom, etc, you can offer.
Charlie Sue
RE: Complex sleep issues - green wings - 02-21-2016
Well, since no one has replied, I'll chip in with an "I had a friend who..." story.
She had severe insomnia for ten-plus years. She eventually went to a neurologist and was diagnosed with a type of epilepsy. She did not have seizures. I know very little about epilepsy, and I don't know if this this anecdote is of any help, but I have gone through years of delayed-onset insomnia and empathize with anyone with a baffling sleep disorder.
RE: Complex sleep issues - Charlie Sue - 02-24-2016
(02-21-2016, 07:21 PM)green wings Wrote: Well, since no one has replied, I'll chip in with an "I had a friend who..." story.
She had severe insomnia for ten-plus years. She eventually went to a neurologist and was diagnosed with a type of epilepsy. She did not have seizures. I know very little about epilepsy, and I don't know if this this anecdote is of any help, but I have gone through years of delayed-onset insomnia and empathize with anyone with a baffling sleep disorder.
Green Wings, thanks for your "I had a friend..." story. I do feel a little alone dealing with all of this. When I was diagnosed with sleep apnea, I thought using cpap would be worth it because I thought it would help with my sleep. I know I need to keep using the cpap for health reasons, and I will. I just wish I didn't need a drug that costs $800 a month to stay awake during the day.
I hope your therapy is going well.
Charlie Sue
RE: Complex sleep issues - PoolQ - 02-24-2016
Okay so here is my story, not exactly yours specifically, but the path may be helpful
AHI 29 pre CPAP. sleeping 30-60 minutes at a time, all night. I was about done.
APAP helped some. the numbers got better. I started sleeping better and then it started going downhill again.
I played with all the comfort settings, kept a journal to keep track of all the changes.
APAP got "less bad"
Switched to BiLevel, because I must be having a problem with tolerating APAP.
Again better but not great.
I was going nuts looking at graphs trying to figure out anything that might help. Doctor finally turned his chair, looked at me, told me to put down the papers, and just tell him about my sleeping-from heading into the bedroom to the morning.
When I said that I felt like my apnea's were happening as soon as I laid down, he stopped and made a referral to a epidemiologist (?) and I got the full workup. Bingo moderate COPD riding on top of Sleep Apnea. Doing so much better now
The point being, don't stop looking and assuming that it is all SA. It may be SA and something else. Oh and I had PLM and still do, but I sleep anyway.
RE: Complex sleep issues - Charlie Sue - 02-25-2016
(02-24-2016, 09:45 PM)PoolQ Wrote: The point being, don't stop looking and assuming that it is all SA. It may be SA and something else. Oh and I had PLM and still do, but I sleep anyway.
I am convinced the SA is not the problem, my AHI is pretty low, and I don't have any issues using my apap, so I agree I need to look for other issues. I take a med for the PLM that seems to be working and I really do believe that I sleep most nights. I've ruled out all other breathing/lung issues (such as asthma, COPD, etc), thyroid problems, metabolic issues, etc., and I am forunate that I don't have any chronic pain problems. I don't suffer from depression or anxiety, and I love my job (and my hubby) so my daily stress is pretty darn low. The only thing I can think of at this point is to look for any underlying neurological problems.
Thanks so much for your insights. I guess I thought it would be apap=problems solved. Unrealistic expectations I guess.
Charlie Sue
RE: Complex sleep issues - woozie38 - 02-25-2016
(02-25-2016, 08:00 PM)Charlie Sue Wrote: I am convinced the SA is not the problem. The only thing I can think of at this point is to look for any underlying neurological problems.
Charlie Sue
We all go through the stage of thinking "there must be something else", & endure many hours of tests, consultations and examinations, but in the end, in comes down to poor quality sleep. Much is said about sleep, but the most important issue is not how much sleep one gets, but the quality of sleep one gets. A good gauge of sleep quality is how you feel when you wake in the morning. If you rise and feel ready for the day's activities and up for the challenges the day might bring, then you've enjoyed quality sleep. If however you feel "hung over" tied thick & vague - your sleep was poor. Anywhere between the two is SDB and we know the causes can be many & varied.
It would be a good idea to post your Sleepyhead data here so this board's many wise folk can help you find the cause/s of the problem/s, & ways you can improve the quality of your sleep. Don't give up & good luck.
RE: Complex sleep issues - doowop44 - 02-25-2016
Just joined yesterday. I don't have the insomnia with the experience you describe and my insomnia only started within the past several months. But I feel I know where you are coming from. You're tired all the time. And so am I. Prior to my bout with insomnia, I don't remember a time where I ever woke up rested; just wanted to stay in bed.
So I imagine, just like you, you went for a sleep test and was diagnosed with sleep apnea and the "miracle" fix was going on CPAP and guess what, CPAP doesn't help you get restful nights sleep and you still wake up tired. I've been on CPAP for seven to eight months now and all it does, according to my wife, I don't gasp air while I'm sleeping nor do I snore anymore. And that's all it does for me. So yes, I have complex sleep issues too but CPAP is not the "cure all" for our particular problem.
And yes, I'm sick and tired of being sick and tired all the time.
We may be in the wrong forum for our problem.
RE: Complex sleep issues - woozie38 - 02-25-2016
(02-25-2016, 08:30 PM)doowop44 Wrote: yes, I have complex sleep issues too but CPAP is not the "cure all" for our particular problem.
And yes, I'm sick and tired of being sick and tired all the time.
We may be in the wrong forum for our problem.
I agree with you 100% - tired of being tired, that's the story of my life, & yes, CPAP is not the "cure all" for SDB. IMHO there are many causes of this malaise & i for one wish a treatment that works could be found. However, that said, if it were not for CPAP, I would have left this world long ago & for that at least, I'm grateful. I just completed my 16th year of PAP therapy & I have to say, I'm no better than when I first started. There is simply not enough known about the affliction and doctors, clinic & labs. generally are too busy selling equipment to bother much with us.
RE: Complex sleep issues - green wings - 02-25-2016
When I've needed expensive medications and didn't have insurance coverage, I've had better luck contacting the manufacturer and asking about their patient assistance program. Their goal seems to bring people's cost down to what people with insurance are paying, more than looking at income.
I'm sure your doctor would write a prescription for Provigil if the drug company would enroll you in their program.
Just a thought if it looks like your insurance might not cover the modafinil.
(02-24-2016, 06:50 PM)Charlie Sue Wrote:(02-21-2016, 07:21 PM)green wings Wrote: Well, since no one has replied, I'll chip in with an "I had a friend who..." story.
She had severe insomnia for ten-plus years. She eventually went to a neurologist and was diagnosed with a type of epilepsy. She did not have seizures. I know very little about epilepsy, and I don't know if this this anecdote is of any help, but I have gone through years of delayed-onset insomnia and empathize with anyone with a baffling sleep disorder.
Green Wings, thanks for your "I had a friend..." story. I do feel a little alone dealing with all of this. When I was diagnosed with sleep apnea, I thought using cpap would be worth it because I thought it would help with my sleep. I know I need to keep using the cpap for health reasons, and I will. I just wish I didn't need a drug that costs $800 a month to stay awake during the day.
I hope your therapy is going well.
Charlie Sue
RE: Complex sleep issues - PoolQ - 02-26-2016
So, More story. For me sleep comes and goes and has turned out to be very sensitive to what's around me. I have a memory foam topper. I installed a fan right above the bed. Depending on the night I will have the top blanket totally one, off, or someplace in between. I adjusted every single setting on my machine. I use aroma therapy to try and keep my nose from blocking up. I use breathe right strips. U use those splints you shove up you nose. Some nights I get up and stand for a while (no lights). I have an air filter in the bedroom. I have a neck support firm memory foam pillow. Sometimes I rinse my nose. Sometimes I take OC sleeping pills. Sometimes I take melatonin.
Do I get good sleep, well for me and my history, I get sleep for most of the night and that is very good. Some days I am a little tired and take a nap in the afternoon, other days I feel fine (or as fine as I remember). I now look forward to going to bed, because I now know I will get enough sleep.
I used to be able to sleep anywhere and that has all changed. I changed about everything I used to take for granted.
Don't give up. Try about everything you can (except quacks). Get as comfortable as you can. Pay attention to every little thing that is going in the right direction.