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Titration Study Results
#61
RE: Titration Study Results
(04-22-2021, 08:14 PM)hookedonstitch Wrote: Unless the issues I am having with breathlessness upon exercise and the wheezing in my chest is Fibro?  I will bring it up with my Family Dr. at the next appointment.

Fibromyalgia symptoms are mostly tiredness, fatigue and unexplained muscle aches/nerve pain. 

Having alpha wave intrusion doesn't mean you have fibromyalgia but it can cause those types of symptoms and potentially is a reason for your tiredness. I believe the mechanism is that the alpha wave intrusion disturbs deep sleep (where most physical healing occurs) which creates the symptoms.

Since you have known vitamin deficiencies that seems like the main starting point. Have they tried injections? My father has to get B12 injections because body doesn't absorb it properly, they make a big difference for him.
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#62
RE: Titration Study Results
(04-22-2021, 08:35 PM)Geer1 Wrote:
(04-22-2021, 08:14 PM)hookedonstitch Wrote: Unless the issues I am having with breathlessness upon exercise and the wheezing in my chest is Fibro?  I will bring it up with my Family Dr. at the next appointment.

Fibromyalgia symptoms are mostly tiredness, fatigue and unexplained muscle aches/nerve pain. 

Having alpha wave intrusion doesn't mean you have fibromyalgia but it can cause those types of symptoms and potentially is a reason for your tiredness. I believe the mechanism is that the alpha wave intrusion disturbs deep sleep (where most physical healing occurs) which creates the symptoms.

Since you have known vitamin deficiencies that seems like the main starting point. Have they tried injections? My father has to get B12 injections because body doesn't absorb it properly, they make a big 
The injections is where I will be heading if my levels have not gone up in the June bloodwork.  
I have no unexplained muscle aches or nerve pain, so I am not even going to chase a Fibro diagnosis right now.
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#63
RE: Titration Study Results
Yeah no point chasing Fibro diagnosis, you pretty much have your answers already imo (with the nutrient deficiencies).

You wondered about the breathlessness after exercise. That is likely due to the low iron. The low iron causes the low hemoglobin, this is called iron deficiency anemia which "may leave you tired and short of breath".

https://www.mayoclinic.org/diseases-cond...f%20breath.
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#64
RE: Titration Study Results
(04-22-2021, 06:40 PM)Geer1 Wrote: I have to disagree with that.

OK we're on an equal playing field then.

Back from commercial break.

I will say that sheepless is likely the best source of info if PLM is a major issue. I hope you find the answers to the sleep issues.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#65
RE: Titration Study Results
hookedonstitch, your Ferritin number is rather low at 29. You want to try and get this over 75 and it sounds like your doctors have things well in order in trying oral supplements and then moving to an iron infusion if the Feramax doesn't help. Feramax looks like it has relatively few side effects and hopefully you will tolerate it well - some of the other Ferrous Sulphate type iron supplements are no fun after a while! I take a double dose of iron chelate style supplement ("gentle iron") on alternate days with no adverse side effects, but that's nowhere near as much iron as you're getting from the 2 x Feramax 150. The theory with PLM and iron is a deficiency of iron in your brain, and even with increased peripheral iron (as measured by Ferritin level) in your blood it's going to take while before this crosses in to your brain (where levels can't be easily measured anyway).
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#66
RE: Titration Study Results
(04-22-2021, 10:58 PM)kappa Wrote: hookedonstitch, your Ferritin number is rather low at 29. You want to try and get this over 75 and it sounds like your doctors have things well in order in trying oral supplements and then moving to an iron infusion if the Feramax doesn't help. Feramax looks like it has relatively few side effects and hopefully you will tolerate it well - some of the other Ferrous Sulphate type iron supplements are no fun after a while! I take a double dose of iron chelate style supplement ("gentle iron") on alternate days with no adverse side effects, but that's nowhere near as much iron as you're getting from the 2 x Feramax 150. The theory with PLM and iron is a deficiency of iron in your brain, and even with increased peripheral iron (as measured by Ferritin level) in your blood it's going to take while before this crosses in to your brain (where levels can't be easily measured anyway).

Thanks for the input on the ferritin levels.  I am hopeful that my number has increased even more in June.  I went from 19 to 29 in 2 months taking the double dose of Feramax.
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#67
RE: Titration Study Results
I hope it's ok for me to keep updating this same thread.

I have had a week of struggles with the apap therapy.  It's like being on a roller coaster that I just want to get off.

Apr 21- increased apap pressure to 6.0-12.0 and I was startled awake after only an hour of sleep by a sensation of coughing/choking against the air pressure.  My mouth was open and all the air was trying to come out.  It was very unpleasant and scared me so I didn't put the mask back on again.  It took me hours to fall back to sleep.  The pressure was almost at 12.0 when this happened.  Is this normal?

Apr 22 - adjusted pressure to 6.0-11.0 and wore the mask earlier in the day to get used to the higher pressure while awake to try to avoid the same thing happening as the previous night.  This night went much smoother and I actually slept.

Apr 23 = I forgot to take my Gabapentin before bed and the restless legs were the most horrendous it's even been.  I could not get comfortable enough to sleep and just got extremely mad at everything and took my mask off part way through the night to see if I could actually fall asleep without it.  Overall an awful night and was the walking dead for much of that day.

Apr 24 & 25- So tired and frustrated with all of my sleep issues that I didn't want anything to do with my treatment and I slept about 6-7 hours each night no machine.

Apr 26 - Ready to try again but pressure back to 5.0-8.0 and slept like a baby.  Most comfortable night I have had so far since starting treatment but still extremely tired this morning.

I'm starting to wonder if this is worth it trying to chase down the flow limitations?  I'm struggling just trying to sleep at all with the machine/mask and restless legs that I'm starting to think I just need to take a step back and get used to sleeping like this.  

I know the flow limitations are high but is this something I need to worry about right now?  Am I still getting some benefit from the machine as things are at the moment?


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#68
RE: Titration Study Results
And this is last night with the lower pressure.


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#69
RE: Titration Study Results
All of your charts show awesome numbers, and as you noted your flow limits are high, great you are aware!!!

What to do? That depends, that depends on you! How do you feel so how do you feel?

The goal at this stage is to focus on your comfort and your nights sleep. We have nearly reached the limit of what we can do about the flow limits with your machine. We can try increasing the pressure BUT, and this is a BIG BUT, changes need to either improve or maintain your comfort, numbers, including your flow limits should NOT be chased.

Any change you make please evaluate and post, if you wish to, which settings feel better, and yes, this is very subjective. Comfort overrides your numbers going up.
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#70
RE: Titration Study Results
On the waking with mouth open and PAP is on your Max pressure is pretty much expected. An open air circuit is what you've got in these circumstances and the PAP goes as high as is allowed by your settings.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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