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New to CPAP - having issues
#1
Hello all,

Joined this forum to use SleepyHead - which as  a computer engineer myself, I am very impressed with. Great work.

Brief bio on me:
Late 20's, athlete, current bodybuilder/power lifter. Have had "chronic fatigue" for past 15 years, really debilitating. Also suffer from insomnia and middle-insomnia. Sometime in 2012 I was diagnosed with Sleep Apnea. I purchased a CPAP and gave up after one night. Fast forward to mid-2016, I still have debilitating fatigue. Forget my children's birthdays, cannot remember conversations I had earlier in the day, etc. I did a home sleep study where I was diagnosed with moderate-severe Sleep Apnea. I used my new CPAP for a month and with worsening symptoms, sadly, I gave up and have used it on and off since mid-2016, so nearly a year.

Why I am posting:
I am a very untrusting person and like to reach my own conclusions. I have no faith in any of the doctors I have seen over the past 15 years. My current doctor simply prescribed me an APAP with a 5-20 range on my pressure. Over the past 10 months of usage, I have been calling the doctor who then calls the sleep place to request my data (though never given to me) and they always tell me it is fine. Well, obviously not since I rarely use the thing and the machine was showing an AHI of 10-20 when I do.


I researched extensively before starting my therapy again and did all my own settings. With 7 days of data, I am at 4.5 AHI. I feel satisfied with these settings, though zero improvement in health. SleepyHead shows that on a couple of nights I only had 5-10 events, some others 40-50. This is where I am getting confused.
1) does an Apnea/Hypopnea event mean that my CPAP did not correct my breathing or that it did?
     It appears that these are events that the machine did not fix within 10 seconds or prevent... which leads me to question 2
2) Why does my machine work better some nights than others? 
     I wake up very often at night, usually every 30-60 minutes. Possibly a very low Arousal Index? I am worried the therapy is not happening because I keep waking up, which seems logical
3) Has anyone taken Trazodone to help? I have very vivid dreams, every night. Studies I have read through suggest a link between excessive dreaming and tiredness. It seems that the most restful sleep takes place in Stage 3/4 (or just Stage 3 now?). There is evidence Trazodone extends the time in Stage 3/4 for many users. A recent study also suggest that Trazodone can increase the Arousal Index - AHI dropped an average of 10 points per case
4) Not really a question, but more asking board members' thoughts on brain damage. It appears those who have suffer from Sleep Apnea have brain damage and it seems to be correlated to time spent with this condition. This led me to the conclusion of why so many individuals respond to treatment differently. Possibly overcoming extensive neuron damage and atrophy of various parts of the brain. 

My plan going forward:
-Stay 100% dedicated to treatment
-Try Trazodone as it may lower my arousals
-Begin supplementing with mega doses of ALCAR. This is the more acidic version of L-Carnitine. Sleep Apnea sufferers have much higher levels of glutamate in their brain (which is damagin) and low levels of GABA. Studies of high doses of ALCAR showed lowered glutamate and increased GABA in the brain. If I do have extensive brain damage, this may play a key role in accelerating my recovery

Thoughts? Advice? What graphs/key indicators do you track for your progress? Can I rely solely on my AHI? It is a little overwhelming when facing the possibility of MONTHS of therapy before any health improvements... How would I truly know what settings are working if I don't experience immediate benefits?

I am really happy to join this board and appreciate all feedback! Thanks!
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#2
Farmapnea, your story is not that unusual. Before going any further, it would really help to know what kind of events are being flagged. If you can post a typical Sleepyhead chart using the methods described in my signature, I can probably give you some very definitive ideas of how to proceed, and perhaps avoid the Trazodone and supplement approach. Also, as a body builder, are you exogenous, and at what levels?
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#3
(04-25-2017, 01:51 PM)Sleeprider Wrote: Farmapnea, your story is not that unusual.  Before going any further, it would really help to know what kind of events are being flagged.  If you can post a typical Sleepyhead chart using the methods described in my signature, I can probably give you some very definitive ideas of how to proceed, and perhaps avoid the Trazodone and supplement approach.  Also, as a body builder, are you exogenous, and at what levels?

Sleeprider,

Thank you so much for your reply.
I have been exogenous for quite some time due to some poor choices as a teenager. Not something I really like discussing. My doses have varied from above average to 5-10 times the normal range – upwards of 4,000-6,000 ng/dl. My current protocol should put me in the 700-900 ng/dl range. Ready to leave this part of my life behind me. I currently believe my estradiol is very high as I have all those symptoms which is compounding my sleep issues. I will get bloodwork done in 21 days to see where I am at.

It will not let me post pictures, add attachments, or insert links currently.

I will reply to another post or two and try again when I get home.
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#4
Hi farmapnea,
WELCOME! to the forum.!
Good luck to you with your CPAP therapy and getting it dialed in to better meet your needs.
trish6hundred
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#5
I figured as much...I maintain below 700 so I know the consequences of going too high, but I have never experienced those levels. As you know it can affect our sleep apnea. You have enough posts to link an image, and if the forum fights back, you can always add a space in the h ttp: part of the URL. I'm interested to see where your events are occurring and see if we might be able to improve that. It's going to take time to fully recover your sense of feeling rested, and getting these events under 2/hour will really help. The solution may not be too far out. Give us a chance to try that before moving to more drugs.
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#6
Welcome to the forum, you are in a good place.
We work better with data so post when you can, if you have aspects of your bkg you don't want public, I'll suggest PM those to someone, I'll suggest SleepRider.
Post with a space in the url. We stop newbees from posting urls because we don't like aads for little blue pills and such. Sleep Data is ok and encouraged.

Fred
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#7
Welcome!

I will advice care when using supplements.  I tried treating my depression using various aminos including GABA.  It worked well for almost a year and then a supplement created imbalance reared it's head and knocked me down.  Get the CPAP therapy fine tuned first, give it a few months, and then consider making further changes.
Post Reply Post Reply
#8
(04-25-2017, 12:48 PM)farmapnea Wrote: Hello all,

Joined this forum to use SleepyHead - which as  a computer engineer myself, I am very impressed with. Great work.

Brief bio on me:
Late 20's, athlete, current bodybuilder/power lifter. Have had "chronic fatigue" for past 15 years, really debilitating. Also suffer from insomnia and middle-insomnia. Sometime in 2012 I was diagnosed with Sleep Apnea. I purchased a CPAP and gave up after one night. Fast forward to mid-2016, I still have debilitating fatigue. Forget my children's birthdays, cannot remember conversations I had earlier in the day, etc. I did a home sleep study where I was diagnosed with moderate-severe Sleep Apnea. I used my new CPAP for a month and with worsening symptoms, sadly, I gave up and have used it on and off since mid-2016, so nearly a year.

Why I am posting:
I am a very untrusting person and like to reach my own conclusions. I have no faith in any of the doctors I have seen over the past 15 years. My current doctor simply prescribed me an APAP with a 5-20 range on my pressure. Over the past 10 months of usage, I have been calling the doctor who then calls the sleep place to request my data (though never given to me) and they always tell me it is fine. Well, obviously not since I rarely use the thing and the machine was showing an AHI of 10-20 when I do.


I researched extensively before starting my therapy again and did all my own settings. With 7 days of data, I am at 4.5 AHI. I feel satisfied with these settings, though zero improvement in health. SleepyHead shows that on a couple of nights I only had 5-10 events, some others 40-50. This is where I am getting confused.
1) does an Apnea/Hypopnea event mean that my CPAP did not correct my breathing or that it did?
     It appears that these are events that the machine did not fix within 10 seconds or prevent... which leads me to question 2
2) Why does my machine work better some nights than others? 
     I wake up very often at night, usually every 30-60 minutes. Possibly a very low Arousal Index? I am worried the therapy is not happening because I keep waking up, which seems logical
3) Has anyone taken Trazodone to help? I have very vivid dreams, every night. Studies I have read through suggest a link between excessive dreaming and tiredness. It seems that the most restful sleep takes place in Stage 3/4 (or just Stage 3 now?). There is evidence Trazodone extends the time in Stage 3/4 for many users. A recent study also suggest that Trazodone can increase the Arousal Index - AHI dropped an average of 10 points per case
4) Not really a question, but more asking board members' thoughts on brain damage. It appears those who have suffer from Sleep Apnea have brain damage and it seems to be correlated to time spent with this condition. This led me to the conclusion of why so many individuals respond to treatment differently. Possibly overcoming extensive neuron damage and atrophy of various parts of the brain. 

My plan going forward:
-Stay 100% dedicated to treatment
-Try Trazodone as it may lower my arousals
-Begin supplementing with mega doses of ALCAR. This is the more acidic version of L-Carnitine. Sleep Apnea sufferers have much higher levels of glutamate in their brain (which is damagin) and low levels of GABA. Studies of high doses of ALCAR showed lowered glutamate and increased GABA in the brain. If I do have extensive brain damage, this may play a key role in accelerating my recovery

Thoughts? Advice? What graphs/key indicators do you track for your progress? Can I rely solely on my AHI? It is a little overwhelming when facing the possibility of MONTHS of therapy before any health improvements... How would I truly know what settings are working if I don't experience immediate benefits?

I am really happy to join this board and appreciate all feedback! Thanks!

Welcome to the forum I am new too, and the response time and knowledge here is unreal. Great group. I can't really give advice on the specifics of sleep monitoring because I had the old s9 resMed which didn't allow me to see anything. I am in the process of getting a new resMed auto so I will be consulting and using the experts on this forum as i learn how to maximize my CPAP experience.
I too am a bodybuilder but in my 40's, have been using a CPAP since 2008 the old remstar it's interesting because I had a sleep study done when I was my heaviest in my early 30's (298 lbs 21" neck) and it came back negative. I was always told neck size and weight were instant sleep apnea triggers which isn't always the case I know people 180 lbs and are fit s a fiddle that have sleep apnea.
I have not only sleep apnea but insomnia/anxiety before bed - mainly due to I don't cool down from my work out until after 7 pm and metabolism is racing. I do all the things recommended to wind down for sleep -elimination of blue light , white noise, wear a sleep mask over my eyes, make my environment cool and comfortable including clothes sheets and room/bed. 
I take a natural sleep supplement capsule and it really helps, with no grogginess I don't know if we can post links and also i am not giving advice for people to take supplements but this works for me (ingredients) Sleep Aid Proprietary Formula (GABA, L-Tryptophan, Chamomile 4:1 PE (Matricaria Chamomilla)(herb), Valarian Root 10:1 PE (Valeriana officinalis)(root), 5HTP, Melatonin (1mg)) 613mg I also add 400 mg magnesium and zinc 30 mg.

Good luck and please use the CPAP- so many of my friends have them and never use them - one of my training partners actually fainted at work rushed to the ER and $20,000 in medical bills for tests scans docs etc he was told to use his CPAP.
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#9
Thanks for the replies everyone, much appreciated. My BP has been 135-145/75-85 for years, and was two weeks ago at the doctor's office. For some reason starting Monday morning, it was 165-190/90-110... went to the ER Tuesday evening and got some BP medicine... I really, really don't want to take it but am for now until I get my bloodwork back.

Anyways, here is one of my charts. Sleepyhead does not seem to display correctly for me, so not sure how helpful these are.
http://imgur.com/a/IbjrR
http://imgur.com/a/TkyhQ
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#10
First impressions are that you're not exhibiting Central (or Clear Airway) Apnea.
The majority of events are hypopneas. They can be improved with a little tweak of the lower range of pressure.

Likely, you need to increase the min pressure from 8 to 9 cm-water; and reduce the flex setting from 3 to perhaps 2.

I have used Trazadone off label in a sub-clinical dose to help sleep. It worked for me.
I no longer use it. It's a polycyclic antidepressant. Don't use it if you can avoid it; as it takes time to reregulate receptors after discontinuation.
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