Burned out and deciding what to do

Right now I am suffering what I would describe as burnout.

I need to identify the cause asap and do something about it.

For the last few weeks, I have been feeling wobbly but the last few days have been the worst. I am waking in the morning with what I think is a big adrenaline surge. It is a bit like you feel after a totally sleepless night - dizzy and depersonalised and draggingly exhausted.

I have upped the pressure recently to 10-20 from 6-17. I have also experimented with new masks, one of which made me worse. I think a build up of fatigue has collided with a very stressy week at work.

One other variable is that I made a cut in my Clonazepam recently, but only 1.5%...it is possible that it could be partly causing the symptoms I described so I am going to hold until it levels out. Given the recent sudden big improvement in the weather, I think I can rule out SAD now.

I do have the option of using my backup machine which is still set at 6-17 as I am wondering if the recent increase in pressures is further from optimal than what I had before.

Any reason not to revert to 6-17 to see if I feel better? Or is that too big a drop?

Have you posted Sleepyhead charts? (I don't have the time now to go back through your posts.)

Chalkie wrote: ↑

Thu Apr 19, 2018 11:56 am

I made a cut in my Clonazepam recently, but only 1.5%

This is not possible unless you have a sensitive medical grade scale. What is your dosage now, and what had it been? What time of day are you taking it?

What model exactly is your back up machine?
And what are the setting options exactly? There's going to be a lot more than 6-17.

ChicagoGranny wrote: ↑

Thu Apr 19, 2018 12:11 pm

Have you posted Sleepyhead charts? (I don't have the time now to go back through your posts.)

You don't have to. SleepyHead is NOT compatible with his model Respironics model 1160 machine.

I will defer to more astute treatment gurus on the specifics of your CPAP treatment. Wondering if renting or borrowing a machine that you can get data from for a week or so might be an option. Is videoing yourself sleeping overnight an option? In view of your previously discussed limb movement issues, I would want to know for certain if that is a contributor to how bad you are feeling. It is not uncommon for those with both OSA and PLMD to think their CPAP treatment isn't working when it actually is working just fine, but limb movements are disrupting sleep. Having been down this road, I can empathize with your dilemma. My best advice is to find a way to confirm your CPAP treatment is doing what it should be doing. I would not stop CPAP treatment without a solid definable reason. Until and unless your leg issues are resolved, you probably are going to continue to feel crappy. Also consider side effects of meds could contribute to how you feel. I know you are weary beyond measure. Been there. If you can muster the strength to take the step of discerning how involved your limb movments are at this point, I think it could help you figure out which way to go to get to feeling better.

Chalkie wrote: ↑

Thu Apr 19, 2018 11:56 am

One other variable is that I made a cut in my Clonazepam recently, but only 1.5%...it is possible that it could be partly causing the symptoms I described so I am going to hold until it levels out.

Please clarify your medicine reduction? So you are taking about two percent less than before?
I realize it is easy to make at home or order a liquid Clonazepam compound for accurate small doses.

This may be a "silly" question, but my first reaction is to ask if you've seen your sleep doctor lately?

ChicagoGranny wrote: ↑

Thu Apr 19, 2018 12:11 pm

Have you posted Sleepyhead charts? (I don't have the time now to go back through your posts.)

Chalkie wrote: ↑

Thu Apr 19, 2018 11:56 am

I made a cut in my Clonazepam recently, but only 1.5%

This is not possible unless you have a sensitive medical grade scale.

They're cheap, these days.

Maybe Chalkie really means 1.5%. He reported this earlier:

am tapering off Clonazepam. That has been sheer hell at times and taken over two years to get off not quite half my dose.

But, I would still like to know the absolute values. Percent can mislead.

Why are you attributing your distress to apnea? See your physician for a complete work up. I hope that you feel better.

Thanks for all the replies.

ChicagoGranny Palerdier I have a set of Gemini gram scales so am tapering by very small amounts (dry cuts). That doesn't rule out s/x, of course, and I know from first-hand experience what benzo w/d can do to you.

My machine is not compatible with Sleepyhead. Going to edit my sig to reflect this.

I do mean 1.5%. The absolute value is 0.96 mg, down from 1.25mg in early November via numerous small cuts. Original dose 2mg. I take my dose at night, and sometimes partly in the day if I am really frazzled. Also taking Citalopram 20mg and I reckon it adds to the fatigue.

Lamar 2217 Because my AHI scores are bad and I have just had the pressure put up, maybe too much. I have had a medical recently which included BP, EKG, and various blood tests. All OK.

Chris 8243 I last saw my sleep doctor in early November. If things are not looking better after my next check up with the sleep nurse/tech I will ask for an urgent apptmnt(currently about every 14 months).

kteague Agree with all that. I took up your suggestion and asked for vitamin/mineral status tests. Awaiting results. My PLMD was confirmed by an overnight sleep study. I was filmed but maybe I could try fiming myself.

Pugsy My backup model is identical to my primary machine. By 6-17 I mean IPAP and EPAP. .

Chalkie wrote: ↑

Fri Apr 20, 2018 9:40 am

Pugsy My backup model is identical to my primary machine. By 6-17 I mean IPAP and EPAP. .

Well whatever you do..don't do those settings.
If you are going to use it and try something new...make it a big change from what you were doing.

Also...there is mode involved...so there is potentially more to it than just EPAP and IPAP depending on mode.

As to what settings...I have no idea because there is so much I don't know about your syndrome and how you got on this machine in the first place.
My gut says that there is a good chance the centrals are related to such a high pressure support but maybe you need that pressure support for your syndrome and other breathing issues. So anything I offer is a wild ass guess but if I were going to WAG it...start with simple and basic...10 EPAP and 14 IPAP and see what happens.

Again what you really, really, really need to be doing is having a chat with your Doctor about all your issues and hopefully he has the skills and knowledge and/or can explain things to you and maybe have an idea how to help you.
Your situation is complicated...you have other health issues that may or may not impact your respiratory system and thus the usual commonly followed guidelines for sleep apnea issues may or may not apply to your situation.

Chalkie wrote: ↑

Fri Apr 20, 2018 9:40 am

Lamar 2217 Because my AHI scores are bad and I have just had the pressure put up, maybe too much. I have had a medical recently which included BP, EKG, and various blood tests. All OK.

Lamar2217 is a troll, nothing but mean comments posted... best put on the foe list.

I do not know what the term troll means. How is offering an alternative and wishing a person well a mean comment. Pale Rider please feel free to contact me through a personal message. Maybe we can arrange a phone discussion. I apologize for irritating you.

Pugsy Part of the lecture I got from the nurse/tech was that she knew my co-morbidity and history.

I do not have that much confidence in the sleep doctor tbh (after finding out that my apnea was far from well treated - maybe it was when I last saw her but has got worse?) but as you say there must be reasons why they are doing what they do. No harm in asking to see her and finding out on what basis the pressures are determined and whether I can get a (fresh?) titration.

As I said on another thread I have Ehlers Danlos Syndrome https://www.nhs.uk/conditions/ehlers-danlos-syndromes/ and I speculate that loose/stretchy skin in the nack/throat area may cause OSA. Certainly, apnea seems to go with the territory of connective tissue disorders.

My post was really prompted by anxiety that the higher pressures might actually be causing me harm by making my sleep quality worse. It's hard to tease out the different factors.

And there is some truth in what the nurse says but there comes a point when the nurse needs to realize that things aren't working so great and maybe a different avenue needs to be tried and if she can't see the forest for the trees then maybe she needs to be having a chat with the doctor and hopefully he has some ideas....because hers certainly aren't working no matter how much she knows about your history.

Here's the deal with pressure support...that big difference between your inhale and exhale...it could be the cause of the centrals.
Now is if for sure the cause of yours...I don't know but it sure could. It blows off carbon dioxide in a manner that doesn't allow the carbon dioxide levels to build up high enough for the brain to send the "breathe" signals to the body.

A pressure support of 10 cm...pretty much guarantees that the carbon dioxide levels are going to be whacko in just about anyone and unless you had a bad case of COPD...I don't see where they are helping and they very well could be hurting.