Why am i still so tired???

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Punchyandtired
Posts: 125
Joined: Mon Jan 12, 2015 12:12 pm

Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 3:08 pm

I need encouragement and/or things to keep troubleshooting.

Thanks to this board, I have been able to push my AHI to below 1. (I can post a screen shot if you want it but it wont be for another hour or two).

Im still exhausted and its THE thing that is most prominent in my day. Its not normal.

Since June, i had been nearly bedridden. Seeping 14-15 hours a day and using all my energy to just sit up. FF to December and we found the severe sleep apnea. Had the MSLT and naps test and couldn't sleep at all prompting my doc to wonder aloud why the narrative I told him wasnt supported by the data. (I think he was honestly stumped). He wanted to put me on Provigil or Nuvigil but there is no way Blue Cross is going to pay for it without a positive naps test.

(The MSLT was last Tuesday-- Feb 3). Doc wants to see me again in 3 weeks to reasses how Im feeling.

I feel like stepped on doo doo.

I'm forcing myself to not nap right now-- trying to retrain my body that night is for sleeping and day is for awake. I'm miserable.

Ill wake up and think "ok, i had a good night sleep and feel rested" and then like 10 minutes later its like a shroud comes over me and im exhausted again.

But since i was inactive for 6 months, I became so deconditioned so now that i am running errands and not sleeping during the day, i now hurt from head to toe.

So today i joined a gym that has both an indoor pool and a warm water therapy pool. I went this morning and stretched in the warm pool and walked around in it and got a kick board and piddled around kicking etc. well that about did me in today, though i was contented while doing it.

Does anyone have any words of wisdom here? Im sleeping 9 hours a night with a pressure of 13 and the full face mask. I feel like im getting good sleep and it seems the data reflects that.

Im so desperate to feel better. I could handle the aches and pains if i didnt feel so gosh darn sleepy all day.

Thank you for reading.
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

tuzacat
Posts: 313
Joined: Wed Feb 13, 2013 5:52 pm

Re: Why am i still so tired???

Post by tuzacat » Thu Feb 12, 2015 3:27 pm

I am so sorry you are feeling so badly! I know a lot of us can relate to your fatigue. Many have said it takes quite some time for it to go away, so hang in there. One concern I have about your post is that you mentioned being in pain. I just wondered if you have investigated other medical causes for your tiredness and pain besides the sleep apnea?

All the best,
Tuza

Punchyandtired
Posts: 125
Joined: Mon Jan 12, 2015 12:12 pm

Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 3:34 pm

Its muscle aches and strain... Like that muscle knot that wont go away. I even had two body massages this week.

Im having headaches too so I'm keeping track of my blood pressure. So far that's o.k.

Been living on advil this week.

I'll keep an eye on my muscle aches. At first i thought i maybe had caught a virus-- shoulder and neck and upper back soreness. But then it went all over body and i suspect it is from starting to be active again.

But ill keep an open mind about it, thanks so much.
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

JimP
Posts: 181
Joined: Thu Oct 02, 2014 2:49 pm

Re: Why am i still so tired???

Post by JimP » Thu Feb 12, 2015 3:44 pm

Sorry you're feeling so bad but something is clearly not right.

As a double check to the cpap machine, have you tried using one of those oximeters and checked to see what you're oxygen levels are doing the night.

I'm no doctor but it sounds like there is still something wrong with your sleep.

Are you on any medication that might account for your condition.

Some drugs will do that and sometimes the doctor can change your meds to something different without that side effect.

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Wulfman...
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Re: Why am i still so tired???

Post by Wulfman... » Thu Feb 12, 2015 3:50 pm

Hard to tell whether your situation is from ineffective therapy or some other health issue.

If your pressure is bumping around much during the night (I realize you said it stays mostly at 13 cm.), you might try setting the pressure to a fixed (min and max the same setting) pressure of 13 and see if that makes any difference.
If you're having events that are bumping your pressures, it may be bumping you out of your needed sleep stage and into a lighter one.

I also agree with the idea of using a pulse-oximeter to test your blood oxygen.


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Punchyandtired
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Joined: Mon Jan 12, 2015 12:12 pm

Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 4:08 pm

I did a pulse ox at min pressure of 7 and was having desats and hypopneas, so we bumped min to 10 and doc ordered a DME pulse ox and it showed normal.

i am having PVCs. Can that cause tiredness?

Good idea about the pressure setting. I will set to steady 13-- last week was bumping to 16 and 17 briefly. I haven't checked it in a few days.

Doc was really shocked data didnt show idiopathic hypersomnia or narcolepsy.

He wants me off ambien in case of residual sleepiness, but i take it when i go to bed which is between 8-9. I do agree to wean but want to wait to easter holidays since i have 3 teens and have to be as much on point as I can be.
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

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Nick Danger
Posts: 621
Joined: Mon Jun 09, 2014 3:13 pm

Re: Why am i still so tired???

Post by Nick Danger » Thu Feb 12, 2015 4:36 pm

John, if Punchy were experiencing complex apnea while using CPAP, her AHI wouldn't be below 1. AHI includes central apneas, as well as obstructive apneas. The rest of your advice seems reasonable.

Punchy, I can't recall how long you have been using CPAP. If it has just been a few weeks, a number of people have continued to be tired for the first several weeks (or even months) of treatment. It does get better.

I do want to point out that your post suggests that you have seen some improvement (even if you do still feel like #*@$). You have reduced the amount of time you sleep from 15 hours to 9 hours. You have started going to the gym - whereas before you were "using all my energy to just sit up." I think you are doing exactly the right things!!

I also think you are doing the right thing by continuing to look for other issues - some of us have had our sleep apnea successfully treated only to find out that there was another problem that was being ignored because our doctors assumed it was just a symptom of the apnea.

Ambien can result in daytime drowsiness - so your doctor may be onto something there.

Another thing to consider is that the symptoms you are mentioning are also symptoms of depression. Depression can be caused by sleep apnea - I would expect it would take a few weeks to get over that after the apnea has been treated (it takes time for the brain chemistry to get back to normal).

Keep up the good work - eventually it will pay off!!!!

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Julie
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Re: Why am i still so tired???

Post by Julie » Thu Feb 12, 2015 4:50 pm

Hi - agree with the last post re possible depression (amazing what it can do), but... also wonder if you've been tested for Lyme disease... not trying to scare you, but the aches, etc. would go along with that, but for some reason many docs do not consider it as a dx if other things are 'easier', more obvious, also fall under diag. criteria, etc. Why not ask about it - nothing to lose. Same for e.g. low Vit. D, or some hormonal imbalance.

Punchyandtired
Posts: 125
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Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 5:11 pm

I don't see john's post any more for some reason, but yes, my nutrition is bad right now-- been living on quick sugar fixes. I started working on that about a week and a half ago.. Trying to turn this all around. Have dramatically reduced sugar intake and trying to conjure up enough energy to fix real foods and also to focus on getting more omega 3s. I have a holistic nutritionist and I'm completely off protocol right now because I'm too brain fogged to put all the supplements in the meds box. I friended my yoga instructor last night on facebook in order to get his schedule so i can catch up with him. (He's gifted-- lucky to have him).

I had a sleep study on the 3rd along with the mslt and doc says no centrals (i had wondered about that).

Doc and I have been going back and forth about depression. I have been on Zoloft before but came to realize i was exhausted and not depressed. Yes, i did have some quirky emotions since i started CPAP (started dec 19): like i cried because I'm overweight and now have acne again (from the headgear), glasses, sleep apnea. Lol. Might as well go grey and wear comfortable shoes and get it over with. Haha. But Ive been so exhausted i haven't been able to feel real emotions, so crying i guess 3 times since december over silly things isn't that bad.

BRB, one teen needs me...
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

Punchyandtired
Posts: 125
Joined: Mon Jan 12, 2015 12:12 pm

Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 5:27 pm

(One son just caught a 6.1 pound large mouth bass. I had to go take a pic of it...)

I told doc I'm open to getting back on Zoloft if he thinks it could help, but I think he wants to see if I'm taking a while to pull out of SA exhaustion. Luckily, my sleep doc used to be my internal med doc (primary doc) years ago (then he left practice to do sleep medicine after he was diagnosed with sleep apnea).

Yes, I can focus on gains because I do have them. Maybe i should make a list and keep it handy.

Thanks for everyone suggestions so far...
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

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Pugsy
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Location: Missouri, USA

Re: Why am i still so tired???

Post by Pugsy » Thu Feb 12, 2015 5:31 pm

How long have you been off the Zoloft?
Do you take any other meds of any kind, even OTC? If so, what?

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SGearhart
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Re: Why am i still so tired???

Post by SGearhart » Thu Feb 12, 2015 5:35 pm

Punchyandtired wrote:Might as well go grey and wear comfortable shoes and get it over with.
And just WHAT is wrong with going gray and wearing comfortable shoes??? I resemble that remark!

Now, lets play 20 questions. . . .
Are you taking any meds for cholesterol? When was the last time you had a full blood profile? If it was recently then I take it that it didn't show anything out of the normal? If you haven't had one, then see if you can get one. Ask the doc to add a Vitamin D check to it. Like Julie said, low Vit D can cause pain. Based off my locale most patients tested have come back with a low D count and I'm in the sunny south.

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Punchyandtired
Posts: 125
Joined: Mon Jan 12, 2015 12:12 pm

Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 5:52 pm

Had only been on 100 mg zoloft from 2013-2014 and weaned off last spring. That doc said 100 was a very low dose to begin with. I do have some extra in the house, and have been contemplating if I should start again. This doc had a heart attack and mostly gave up his practice (he also prescribes my ambien), but he sees a handful of patients once a month, so maybe i need to go tell him about the sleep apnea and all of this.

Blood profile always comes back wonderful: cholosterol low, blood pressure normal. Every doc who orders it marvels and how much better my profile is than theirs. Sleep doc checked ferritin last week and so far I havent heard how that came out.

Vit D was slightly low so my primary doc has me on 3,000 units of d3 which reminds me that I need to get back on all my supplements. Hum. Maybe this could be it. Ive been too tired to remember i have D3 to take. This doc also thyroid doses for symptoms so I am on 25 mcg Synthroid every night (which I do take). I also take iodine with the synthroid. I also have a small dose of bioidentical estrogen, progesterone and a small hit of DHEA.

O.k. So there is something I can do-- remember D3.

gearheart, im sorry!!!! I hoped I didn't offend anyone. Im at a crux at age 45... so... On one hand i would love comfortable shoes, but on the other hand I'm still trying to fight it!! But i am about to give the heels up because i really cant take them any more. The hair-- uugh. Not giving that up yet though i think it will be very freeing when i do.
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

Punchyandtired
Posts: 125
Joined: Mon Jan 12, 2015 12:12 pm

Re: Why am i still so tired???

Post by Punchyandtired » Thu Feb 12, 2015 5:54 pm

I have not been tested for lyme, but do live in a rural area. So that may be something to consider.
45 year old female
First AHI: 33.6 (including 2 desats less than 70%)
Pressure setting: min 13 max 20. 95% pressure has been around 15-16.
Trying to like the resmed p10 air pillows and headgear
Started therapy December 19, 2014

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SGearhart
Posts: 434
Joined: Fri Nov 07, 2014 8:54 am
Location: Georgia

Re: Why am i still so tired???

Post by SGearhart » Thu Feb 12, 2015 6:03 pm

One other thought based off your statement about muscle pain. Are you getting cramps on a more regular basis?

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: CMS-50F & 50IW - SleepyHead 1.0.0-Beta