Drowning. Where do I go from here?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
NearDeadCentre
Posts: 11
Joined: Wed Feb 10, 2016 4:04 pm
Location: London, Uk

Drowning. Where do I go from here?

Post by NearDeadCentre » Sun Sep 20, 2020 3:34 pm

Firstly, my apologies if I'm off track here. I'm really struggling and don't know what else to do.

I feel cr@p and tired during the day. My get-up-and-go has disappeared and doing anything other than sitting and vegetating is a struggle. Doing anything requires me to make a mental effort seemingly like carrying a lead cape around. I'm surviving rather than living. Even getting round to writing this has taken me weeks.

In brief, I'm in my 60s and my whole adult life I've felt as if I've never got a good night's sleep, fighting against tiredness and a lack of energy for over 40 years. I've occasionally suffered from depression, something not unusual with sleep issues. Some 7 years ago when under stress, in my until-then pretty successful professional careers, my daytime tiredness got far worse, my attention span became that of a one-eyed goldfish and I had to give up work. I'm slim and keep fit so am not a stereotypical apnoea body type. A home sleep study showed apnoea but a CPAP machine gave little if any improvement. A hospital sleep study showed central apnoea but a bipap machine showed little difference. A review showed that I had restless legs (RLS) and periodic limb movements (PLMS) but gabapentin, pramipexole (Mirapex) and pregabalin (Lyrica) have made little if any difference. I've posted my machine settings and recordings; the general consensus is that they areas good as I'm going to get, with an AHI close to zero.

All sorts of blood tests (vitamins, minerals, thyroid, iron etc) show a lot of marginal results but nothing major. I'm on the borders of Type 2 diabetes but am slim, fit and eat healthily. Antidepressants produced little or no difference. Exercise (typically jogging 3 miles every day) helps keep me sane but has little difference on how I feel. A neurologist could find nothing significant. Even though I'm convinced my occasional depression is a result of tiredness rather than the other way around, I saw a psychiatrist but got only platitudes and the details of a $200-an-hour psychologist in return.

Has anyone had any experience like mine or has advice on possible causes?

User avatar
zonker
Posts: 8523
Joined: Fri Jun 19, 2015 4:36 pm

Re: Drowning. Where do I go from here?

Post by zonker » Sun Sep 20, 2020 5:33 pm

NearDeadCentre wrote:
Sun Sep 20, 2020 3:34 pm
Firstly, my apologies if I'm off track here. I'm really struggling and don't know what else to do.
no apologies needed. it took a lot for you to get this down in black and white.

you talk about many things other than your cpap therapy. and there are lots of folk here to help in that regard. but i'm wondering, as you've been on the forum here for four years, why you haven't tried to take control of your therapy?

i don't mean that to come across as harsh. and i hope you don't take it that way.

we each of us are different. we have different sleep patterns. we have different machines. different masks. different pressure settings and needs.

can you give us the details, please? what machine? what mask? what settings for your pressure?

like i said, other will speak to your other issues, which are sleep apnea adjacent, but beyond my understanding.

good luck!
resmed airsense 10 autosense for her
p10
"nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.” -mlk jr

User avatar
zonker
Posts: 8523
Joined: Fri Jun 19, 2015 4:36 pm

Re: Drowning. Where do I go from here?

Post by zonker » Sun Sep 20, 2020 5:35 pm

kteague wrote:
Mon Aug 31, 2020 10:50 am
hey, kteague? can you speak to the op's restless leg syndrome? thanks!
resmed airsense 10 autosense for her
p10
"nothing in the world is more dangerous than sincere ignorance and conscientious stupidity.” -mlk jr

User avatar
Pugsy
Posts: 59920
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Drowning. Where do I go from here?

Post by Pugsy » Sun Sep 20, 2020 5:45 pm

A little bit of past history in old posts but most recent was in 2017.

search.php?author_id=78521&sr=posts

What medications are you currently taking?

How many hours of sleep with cpap are you getting on average?
Are those hours fragmented with very many wake ups?

Exactly what did your sleep study show? Do you have a copy of those results?

A lot more information is needed if you expect anyone to offer any ideas to help you sort things out.

Use available software and lets see if the therapy is optimal...maybe some little something in there needs to be improved upon.
Hopefully you have a full data machine that is compatible with OSCAR
OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

and if you do...share a typical detailed report in the format explained here with examples.
viewtopic/t158560/How-to-post-images-for-review.html
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

NearDeadCentre
Posts: 11
Joined: Wed Feb 10, 2016 4:04 pm
Location: London, Uk

Re: Drowning. Where do I go from here?

Post by NearDeadCentre » Mon Sep 21, 2020 3:15 am

Thank you, all.

I'll do my best to answer your questions. I am, though, looking more for inspiration or a big picture than tidying up details. I see my issues going back to the start of adulthood, so is there a development issue? If bipap has given me excellent AHI yet made so little overall improvement, will tweaking settings make much difference? If 3 different drugs to address RLS/PLMS have made so little difference, will increasing doses or changing to a different drug make any difference? Is it all psychosomatic? Could all the years of poor sleep have altered my brain?

I don't have a copy of the sleep study. I doubt I'll be able to get one quickly given how the sleep unit has largely shut down over Covid.

I doubt my machine (Resmed Aircurve 10 CS Pavewave) settings provide grounds for help as the sleep centre and other people have looked at them. I can't concentrate enough today to read the Oscar guides and produce outputs, so I attach some relatively recent Oscar printouts that I already had. I hope these will do; if not, I'll have a go at fresh ones tonight. The screens show a night were I did SPO2 readings too; there's one for the settings, one for the major data fields with SPO2 and one with the data fields without SPO2.

The only medicines I currently take are Modafinil 200mg pd to help overcome my symptoms. Before my sleep study I was on 600mg pd Gabapentin for nose pain that was probably a result of a turbinate operation 30 years ago; I noticed no change in my sleep quality on both starting and discontinuing it. I was on 0.375-0.5mg pd Pramipexole for at least a year after my PLMS diagnosis, which was then changed almost a year ago to 150mg pd Pregablin (Lyrica). Concerned over scares stories of augmentation and possible side effects of Lyrica, with drowsiness and difficulty concentrating being common ones, I decided to wean myself off to see what difference that made; I've not noticed much of a difference. My treatment for the nose pain also involved several antidepressants (consecutively a tricyclic, an SSNRI (Effexor/Venlafaxine) and an SSRI (Citalopram)) with little obvious effect. I have Lipitor for high cholesterol that I'm not currently taking.

I even gave up alcohol for 2 months but that made little or no difference. . . .
2020Jul20_Settings.png
2020Jul20_Settings.png (45.43 KiB) Viewed 1253 times
2020Jul20.png
2020Jul20.png (84.93 KiB) Viewed 1253 times
2020Jul21_incSPO2.png
2020Jul21_incSPO2.png (88.99 KiB) Viewed 1253 times

User avatar
Pugsy
Posts: 59920
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Drowning. Where do I go from here?

Post by Pugsy » Mon Sep 21, 2020 8:39 am

Where do you live? The PaceWave isn't normally dispensed in the US so I suspect elsewhere in the world.

If your machine is giving you good treatment (and per the report it is) and you are still having unwanted symptoms then maybe you are expecting the machine to fix a bad sleep problem that isn't caused by airway or sleep apnea issues.
Or maybe your symptoms are related to something else entirely.

I doubt that tweaking the settings on your machine is going to be your solution. I wish it were that easy.

The medication you take to help you stay awake and alert though....look it up in terms of side effects. It's legalized speed and it is well known to mess with sleep quality and architecture. It can be a cause of poor sleep. Now I know why you take it but it probably is a factor in less than optimal restorative sleep.

As far as potential causes for your unwanted symptoms...the list is very long but it may not be airway related and that's the only thing the machine is designed to fix...airway issues.
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

NearDeadCentre
Posts: 11
Joined: Wed Feb 10, 2016 4:04 pm
Location: London, Uk

Re: Drowning. Where do I go from here?

Post by NearDeadCentre » Tue Sep 22, 2020 2:31 am

Thank you.

I'm in the UK, I've added info to my profile to show this.

I don't think the Modafinil is an issue. It post-dates the start of my issues and I've taken breaks from it in order to check that and whether it's giving me side effects (eg depression and memory problems are listed), all without apparent difference.

My machine and the RLS drugs do seem to be the best that I can get for solving the problems I have with central apnoea and PLMS (which I'm sure that I have from the results of several home sleep studies, the sleep centre overnight study and machine outputs). There must be something else, but I just don't seem to be getting anywhere. I've spent countless hours researching and getting blood tests, most I pay for directly to avoid bureaucracy and delays, all to no avail, hence this thread as a shot in the hope that someone might say "I recognise this". I'll keep hoping.

Again, thank you for your time and effort.

Janknitz
Posts: 7819
Joined: Sat Mar 20, 2010 1:05 pm

Re: Drowning. Where do I go from here?

Post by Janknitz » Tue Sep 22, 2020 2:44 pm

It's very likely that sleep apnea is not the cause of your symptoms if your apnea is being so well-treated.

I think you hinted at it here:
I'm on the borders of Type 2 diabetes but am slim, fit and eat healthily.
Curious: Do you feel especially sleepy after lunch? Do you lose energy late in the afternoon-early evening? Do you feel you need frequent snacks to combat your fatigue to get through the day?

If you look up one of the consistent symptoms of hyperinsulemia (too much insulin), is FATIGUE. Especially within 2 hours or so of a meal. Especially if you find you need to eat or drink sweetened and/or caffienated beverages every few hours just to get through your day. Been there, done that. It was miserable, and I learned how to not live on that roller coaster.

This is what is happening in pre-diabetes. https://thefastingmethod.com/understand ... tu-t2d-24/

There is a correlation to sleep apnea in that we rarely just have one hormone (i.e. insulin) out of whack. And when you have apnea, it throws a whole lot of hormones out of whack, including insulin (and excess insulin, in turn can affect sleep apnea). Treating apnea certainly helps, but you have to address the underlying hyperinsulemia too.

Most doctors have no clue, when they determine you have "pre-diabetes" they just wait for your blood glucose to be elevated enough to start treating that with medications to treat the symptom of elevated blood glucose instead of addressing the underlying insulin issues.

Finding a doctor who understands this is challenging. But worth pursuing.

Most people who think they eat "healthily" are eating a whole lot of carbohydrates (starchy vegetables, fruit, lots of grains) --that makes hyperinsulemia much much worse. You can test it out yourself by switching your diet to see if it helps.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

NearDeadCentre
Posts: 11
Joined: Wed Feb 10, 2016 4:04 pm
Location: London, Uk

Re: Drowning. Where do I go from here?

Post by NearDeadCentre » Wed Sep 23, 2020 6:09 am

Thank you.

I did address the possibility of Diabetes after a home blood sugar tester showed morning fasting levels around 6.5-7.0. All my adult life I've avoided sugar; no sugar in hot drinks, minimise fizzy drinks etc, avoid 'energy' drinks (mainly because when I tried them the come-down outweighed the boost). I have for 9 months been on an anti-diabetes diet, initially with a few weeks on low calories then following on with a low-carbohydrate diet (mainly meat, cheese, salad and vegetables, and avoiding bread, grains, potatoes etc) with 2 meals mostly between 1 pm and 7 pm; of course, I've fallen off the rails occasionally, but overall I've kept to the diet. My morning fasting levels are now better at 5.5-6.0. I even went without alcohol for 3 months.

I don't have the classic signs that you mention. I wake feeling cr@p and then feel worse as I get tired through the day. My afternoon symptoms don't seem to change if I miss lunch.

I'm carrying on with my diet and exercise.

That there is an issue with a related hormone is a possibility.

cyeh01
Posts: 5
Joined: Mon Sep 21, 2020 8:35 pm

Re: Drowning. Where do I go from here?

Post by cyeh01 » Sat Oct 24, 2020 9:21 am

NearDeadCentre wrote:
Sun Sep 20, 2020 3:34 pm
Firstly, my apologies if I'm off track here. I'm really struggling and don't know what else to do.

I feel cr@p and tired during the day. My get-up-and-go has disappeared and doing anything other than sitting and vegetating is a struggle. Doing anything requires me to make a mental effort seemingly like carrying a lead cape around. I'm surviving rather than living. Even getting round to writing this has taken me weeks.

In brief, I'm in my 60s and my whole adult life I've felt as if I've never got a good night's sleep, fighting against tiredness and a lack of energy for over 40 years. I've occasionally suffered from depression, something not unusual with sleep issues. Some 7 years ago when under stress, in my until-then pretty successful professional careers, my daytime tiredness got far worse, my attention span became that of a one-eyed goldfish and I had to give up work. I'm slim and keep fit so am not a stereotypical apnoea body type. A home sleep study showed apnoea but a CPAP machine gave little if any improvement. A hospital sleep study showed central apnoea but a bipap machine showed little difference. A review showed that I had restless legs (RLS) and periodic limb movements (PLMS) but gabapentin, pramipexole (Mirapex) and pregabalin (Lyrica) have made little if any difference. I've posted my machine settings and recordings; the general consensus is that they areas good as I'm going to get, with an AHI close to zero.

All sorts of blood tests (vitamins, minerals, thyroid, iron etc) show a lot of marginal results but nothing major. I'm on the borders of Type 2 diabetes but am slim, fit and eat healthily. Antidepressants produced little or no difference. Exercise (typically jogging 3 miles every day) helps keep me sane but has little difference on how I feel. A neurologist could find nothing significant. Even though I'm convinced my occasional depression is a result of tiredness rather than the other way around, I saw a psychiatrist but got only platitudes and the details of a $200-an-hour psychologist in return.

Has anyone had any experience like mine or has advice on possible causes?
This is my first post but I would like to say that I have nearly literally the exact experiences as you've written above with the exception that I'm in my early 40's and that my 3 mile runs have now become either 2 mile runs or occasional walks because I'm too "tired" to run. Considering I've been an athlete my whole life, this accelerated physical degradation is alarming and I'm creeping these forums trying to figure out how to set my Phillips autoSV.

I'm curious if along with your PLMs if you also have bruxism? Mine is severe to the extent that per my dentist I'll be drinking my foods soon when my TMJ atrophies to the point of dislocation.

I'm also curious if you have any of the data from your (I'm assuming) CPAP-only machine also in SleepyHead? I too had no significant improvement to daytime drowsiness after using CPAP or BiPAP and found stretches of "clear airway events" that could rob me of 3+ minutes of breathing in a 12 minute. Still not sure if that's "significant" but suffice it to say that I tried to replicate those breathing patterns (while awake) and couldn't get past the first 21 second event.

Hope to glean something from your experiences/data.

NearDeadCentre
Posts: 11
Joined: Wed Feb 10, 2016 4:04 pm
Location: London, Uk

Re: Drowning. Where do I go from here?

Post by NearDeadCentre » Thu Jan 13, 2022 1:02 pm

My apologies for not responding earlier. I didn't realise that there'd been a response and have only just read it.

In direct response to your question, bruxism is possible. Neither I nor my wife are aware of me doing it, my molars show no signs but my incisors are wearing as if they are rubbing together.

User avatar
chunkyfrog
Posts: 31675
Joined: Mon Jul 12, 2010 5:10 pm
Location: in a nice, moist, Nebraska bog

Re: Drowning. Where do I go from here?

Post by chunkyfrog » Thu Jan 13, 2022 1:21 pm

If I forced myself to jog 3 miles a day, I would most definitely be tired and depressed.
I might be slim, and less diabetic, but you would not like me that grouchy.
I have anger issues . . .
Resmed Airsense 10 Autoset FOR HER, p10 mask