Is it possible I was misdiagnosed and CPAP is just not for me?

Djonne wrote: ↑

Wed Aug 11, 2021 12:17 am

Many people have suggested that I try CBD as well. Are you familiar with it?

Well, sort of familiar with it. I have tried it but didn't have much luck but I will admit it was a limited trial and perhaps I needed to simply take higher dose.

Also a very limited trial with real marijuana in an extremely low dose....went to visit my daughter in Las Vegas a while back where recreational use is legal but I couldn't see it helped and I had some unwanted side effects from it so didn't really pursue it further. I am in Missouri which supposedly legalized medical use but while I could probably get a doctor to okay it for me...not sure I want to go down that road. It doubled my pulse rate and that was really uncomfortable for me and that was with the smallest dose the store in Vegas sold. Other stores might have had an even lower dose available as an edible but with covid I haven't been back to Vegas to maybe try an edible small dose....and not yet available here in Missouri legally.

CBD oil also seemed to increase my pulse rate at the relatively low dose I was trying. Not a comfortable feeling for me which made me not in a hurry to try more higher dose.

Now I have heard that it really helps a lot of people and just because it didn't seem to help me doesn't mean I will pooh pooh it off for others. Remember I know the cause of my poor sleep...it's pain...pure and simple pain and treating pain with CBD oil or real marijuana....is different from treating poor sleep in general.

I actually think anything that is legal is fair game to try to help us sleep.
I will admit to having a CBD oil discussion with a friend just a few days ago. I was thinking about another trial but was still in the thinking stage about it because I know I would have to up the dose which I have been afraid would also increase the pulse rate issues I had with the prior experiment with it.

Since the pain issues also affect my activities of daily living while awake and not just my sleep quality I prefer to try to address the root cause if at all possible. Hence my journey through various pain management options and a new one on the horizon. Your situation is a bit different than mine. You don't know your root cause and you may never know for sure.
Bad sleep is a bitch because it is so hard to figure out the root cause and deal with the root of the problem.

If you decide to try CBD oil be aware it isn't a quick experiment as you will have to probably try various doses and give it time. Also be aware that from my past research when I did try it that the CBD oil market isn't really regulated for quality control and consistency so research the company you are thinking about buying from for quality controls. Cheaper isn't always better deal and CBD oil gets very pricey. The higher the dose the more it costs.
If you personally know someone who uses CBD oil...start with them for which manufacturer is more trusted. People who swear by CBD oil are more likely to know who is a good manufacturer to buy from and who to avoid.

The RX sleep aid you have available....I don't like that sort of thing for chronic long term use because of potential for addictive properties causing even more problems. Short term random use doesn't scare me but it's not something I would want to take every night. I would save it for what I call emergency use only and only if it really helped which it doesn't sound like with you it does unless we find that with the changes to the cpap therapy it ends up working better for you.
If it does....I do think that maybe a chat with your doctor is in order about RX meds because there are other meds that are less addictive that might be a better choice for long term use.
I am currently trialing one of the newer sleep RX drugs right now that targets people like me with more problems staying asleep. I fall asleep quickly most nights but after my pain pill wears off in 3 to 4 hours is when I start having problems.
It is called Belsomra here in the US...VERY expensive if someone doesn't have insurance and even with insurance paying the bulk of it my cost is $47 a month. Not supposed to have all the addictive properties of other sleep aids but it isn't going to be something to make a huge difference in time slept. It won't make a 4 hour night into a 7 hour night. So far the jury is still out on it since I really have been on it only about 3 weeks. Overall at this point though...very modest help but at this point modest is better than none. And a bigger plus...no unwanted daytime side effects with its use.

An important thing to always consider when taking any sleep aid is the baggage it comes with....potential side effects.
In addition to potential addictive properties of a lot of those kinds of meds they come with unwanted daytime symptoms...hangover effect I call them. Daytime fatigue, drowsiness, foggy feeling, etc...and the half life of a lot of those meds is quite prolonged in many of them.

I always heavily research anything I try...be it medications or procedures. Nothing is perfect and everything has baggage...we just have to decide if the baggage is worth it or not.
Be it meds, or OTC stuff or therapies like cpap or off the wall stuff like CBD oil and if legal even marijuana.

Nothing is ever perfect and we just have to look at the risk vs rewards for everything.
And we have to have realistic expectations which is really hard sometimes. We all want an immediate fix with anything and sometimes life doesn't give us immediate...heck, most of the time it doesn't.
We expect medical care to be 100% fix and immediate and we don't have a lot of patience when it doesn't happen.
I see it all the time here with people complaining that cpap didn't immediately fix their problem.
"I have have been on cpap a week and it hasn't fixed my problem" They want cpap to make them into superman or superwoman overnight. Can't say as I blame them for wanting but they need to accept the reality that often it simply is much more complicated than that.

Often people are taking medications that cause unwanted daytime symptoms that they expected cpap to take away.
Often they say they are getting 4 to 5 hours of sleep on cpap and they still feel like crap....well duh...not enough sleep for one thing. Often people are like you...they probably had sleep quality issues that are unrelated to the airway that the best cpap therapy in the world isn't ever going to fix. .....but they sure expected cpap to fix it.

As for your giving CBD oil a try...IMHO anything is fair game to try. Will it help? Dunno that answer unless you try it.
It does involve a lot of experimenting with dosage though...so a huge dose of the "patience" pill will be needed.

fstrife wrote: ↑

Wed Aug 11, 2021 5:31 pm

I would repeat the Type 2 sleep study ASAP (out of pocket if necessary), but it seems like you are able to convince him to keep trying until the in lab sleep study. Just felt bad for the guy to suffer without being sure that he is addressing a real problem.

I feel bad for the guy as well and I would much prefer that he get at least the type 2 home study but he would have to pay out of pocket for it and it's about a grand and sort of out of the question. I am actually gung ho for another home study if it could be the type 2 study. I am not against it at all. I think he stands a better chance of sleeping at home than in the sleep lab. I would much rather he had a home study (type 2) than wait a year for an in lab study.

He was multiple people tell him that they witnessed him stop breathing....that is a huge red flag for positive for sleep apnea and if he didn't sleep well with the first sleep study which does indicate at least mild sleep apnea it wouldn't be impossible for him to have worse sleep apnea if he actually slept. One of the major draw backs to home studies is they often under report events.
I would rather he get the sleep study tomorrow but that's not available right now and since there is a strong chance that he has at least mild apnea...I would rather treat it now just in case then abandon all therapy until the sleep study can be repeated. Using cpap and maybe not needing it....won't hurt anyone but I actually think that the odds are he needs it.

If he could get a repeat sleep study (at least of the quality of a type 2) next week that would be one thing but we are talking maybe as long as a year where he lives.
I just don't want him to go untreated for that long and since treating with something as low as 7 cm pressure won't hurt anyone...and there is a chance it might help...why not do it?

The reports of people witnessing him stop breathing....that is one of the main reasons I am not so quick to say he may not have OSA. They probably didn't stay up all night watching and if they saw it happen a few times while they were watching...real good chance that more happened after they went to sleep.
People eyeballs don't lie. Tests can be flawed but eyesight reports don't usually lie.

When I went to the sleep doctor and was going through all the symptoms and discussion that might point to why I would need a sleep study ...the doctor stopped with the questions once I told her that my husband says he has witnessed me stopping breathing.
She told me that was reason enough.

He wants to continue and try...for whatever reasons (my input or not)...it is still his choice so I will help him do whatever he wants to try to do given the limitations we have right now. Is it ideal? Of course not but it is just air and it won't hurt him and there is always the chance it might actually help with some of his sleep problems.

So make no mistake...I am not against doing a type 2 home study and I am not all that big of a proponent of the in lab study...but he doesn't have 1,000 bucks to dole out for another home study and I assume his insurance won't pay...if he has insurance.
He is in Canada...Quebec I think and coverage for sleep apnea isn't the same as here in the US. Some provinces offer no coverage at all with their National health program and some provinces have other limitations as to what they will pay for or not pay for. I don't know all the ins and outs of what Quebec province will pay for but I assume he does and from what I get...they won't pay for a type 2 home study and he would have to pay for it and he doesn't have the funds to pay for it so waiting for what his insurance will pay for is essentially the only option at this time.

AND...as for him suffering now....it's not like he wasn't suffering before. He reports years of bad sleep.

Woah, that's a lot to answer ! hahaha!

Actually marijuana is completely legal here, has been for a few years now so I could get CBD from the government managed cannabis stores here in Quebec (Much like our liquor stores are 'provincial'). I don't think there'd be any issue with the quality of the stuff they have over there.

As for the Zopiclone.. I have tried it two nights in a row and I feel even crappier than without it, so I don't think I'll be pursuing. I didn't sleep ANY better anyway. Took just as long for falling asleep and I woke up as many times.

About other medications... the only sleep aid the prescribe here usually is Quetiapine or Trazodone, which aren't even really sleep meds... that's what everyone I know has. I'm not too keen on taking that!

As for the study and coverage, pretty much any TEST can be covered by our national insurance, but it usually takes VERY long before we get them. I don't think they do the Type 2 studies at home here though. From what I've gathered, they only do three types of tests : first one is usually ONLY the saturation test where they check only your saturation through the night, then there's the normal test which is what I've done and everyone I know has done, and then the in-lab polysomnography. I could go private but I'd have to pay myself because the insurance certainly wouldn't pay since I have already had a test done and already have a CPAP prescription that they're technically covering me for !!

Yeah, sometimes I talk a lot. I am female after all.
Sometimes I feel like typing a lot and sometimes I don't.
I also tend to over explain everything quite often. Long standing joke around here about me and my "novels".
We have another woman forum member who could beat me though....you should have seen her answers to relatively simple questions.
She could type circles around me.

I offer my thoughts and it's up to the people to digest, toss out, roll their eyeballs or whatever with my thoughts.
It's just my opinion based on my own experience and/or education...it's all I have to offer.
Pertinent for some and not others. I am okay with that. I know I can't please everyone and I don't really try.

Oh I'm exactly the same when I talk about something I know a lot about. I'm a guitar teacher here in my town and I talk SO MUCH when teaching.. I over explain things and make comparisons and all.. so I totally get you! It's the same whenever I e-mail someone.. the other person's e-mails will be 2 lines at most, my 'short' e-mails will be 40 hahaha! But the post in which you responded to the other person along with the one where you talked about CBD and the sleep meds you take had lots of different points, my reaction was more about that than the actual length of the posts

Yeah...the other thing about women...we often have a lot of opinions and not afraid to voice them.
I often try really hard to look at both sides of everything though. There is almost always pros and cons to everything and then finally that really big deal...that huge YMMV sticker that pretty much everything in life comes with in some form or another. I try not to be too biased though and offer both sides with enough material that the person comes up with their own decision and they are comfortable with it.
I don't really want people doing something "because Pugsy said to do so and so"....I want them to do whatever they want to do based on their own education and research that I might have have a hand in pointing them to.

I can't always be here to spoon feed people as to what they should or shouldn't do...I much prefer they learn how to feed themselves but I am willing to try to help them learn how. That way if their computer goes down or internet goes on the blip and they can't get online to be told what to do....they can figure out what to do based on what they have learned.

Hi again!! So I've been sleeping with very similar settings for a while now and I do appear to be sleeping better. I've been sleeping alone lately and been taking Zopiclone AND been on vacation, so I've been sleeping full nights without waking up even once.

I've been check the data in OSCAR every now and then and I still appear to have events. I just made several screenshots of last night and many of them appear to be real events to me at least. I was wondering if I should increase my pressure a little? I was at 8 with EPR at 2 for the last few days.

The full night chart might be a bit weird because of the way the ResMed CPAP works, the day resets at noon and sometimes I slept way past that... and my CPAP is already 3 hours early to prevent that.. I have a weird schedule. I think I'll set the machine 6 hours earlier!!

Anyway, please let me know what you think!