New User Blues.....

[Trease]

I am new to this site and absolutely everything about it, so forgive me if I am posting in the wrong area! This has been such a source of information for me and literally kept me from giving up on treatment. I was lucky to find this site when I was desperately looking for information and it was such a sense of relief to learn that what I was experiencing in the first 3 weeks of treatment was totally normal! Thank you all for your words of wisdom.

I have snored (obnoxiously) since my early 20's so I suspect that I have had obstructive sleep apnea for years. Last fall I started feeling really awful and started my quest to figure out what was wrong. Led to a full hysterectomy (sorry guys) at the age of 43 and continued downhill from there. I took 8 weeks off work following surgery and just never bounced back. For a very high energy, productive person, who likes to get things done, it was very difficult to handle. In April I finally went to my family doctor and asked for a full physical, bloodwork, and a sleep study. I had heard an interesting discussion on a radio program and some things clicked for me. My doctor's initial diagnosis was that I had an active Epstein Barr Virus and that I had Chronic Fatigue. He put me on all sorts of supplements and I continued to feel like I would drop at any moment. In the meantime I have my first sleep study and the result come back that I have OSA. I was in the low end of "severe". I schedule my second sleep study and finally got my first equipment at the end of July. I will mention that I still had not seen the actual sleep Dr at this point. I gave it 2 weeks and could not sleep through the night and even though it was impossible to imagine, I felt worse. Prior to treatment I always slept through the night, I did not consiously wake up. I packed the darn thing up and went back to my family doctor - who then started prescibing "stimulants" to keep me awake - which made me feel even worse. At this point I decided I needed a new general physician, so I started the journey of interviewing five doctors and finding one that I felt comfortable with. I found him at last, he was the third one that said "your numbers are not high enough, you do not have an active Epstein Barr Virus, it's the sleep apnea, and he sent me immediately with my machine to a new pulmonary specialist. By the end of September I was again using my CPAP with a different mask and three weeks into it I found this site.

After the initial adjustment, I woke in the morning feeling great and had energy through most of the day. The elation at finally figuring it all out and feeling like myself again after months of struggles was fabulous. That lasted about three weeks and now I feel like I'm sliding downhill again. The weird part of it is that it's almost like I have the flu on some days. That all over, achy limbs, exhausted, I can't do anything feeling. Is this normal??????? I am trying to ride this out and have confidence that this to shall pass. A small part of my brain says "not normal" go back to the doctor....

Last week I had my checkup and when I told them what I was experiencing they just kind of shrugged....my AHI was 2.0 and everything else on the report looked good.

Any advice? Has anyone else had these symptoms? Any and all comments are welcome! Trease

[TonySanDiego]

I am a newbie here too. I can't help you much myself.

It doesn't sound right that you felt great, then, with nothing changing, feeling awful again.

If nothing has changed with your sleep stuff from when you felt good, then possibly something else is going on.

Do you have a fully data capable machine? Post some charts or info, perhaps the others can lend some insight.

Tony

[GumbyCT]

Everyone is different. I know I feel better when my AHI, including FL's is below 1. I also feel like I am now allergic to dust which seems to increase the flu like symptoms I feel. I never had these problems when I smoked or before cpap.

If you've been reading - do you have your PSG? Use the software? Where are you getting you numbers from?

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf
http://www.nbc.com/Saturday_Night_Live/ ... -2/742141/

take a breath, put on your reading glasses and get comfy
there is NO wisdom pill
and one size does NOT fit ALL
Faces are like fingerprints

Reading this will help -
For Acronyms & Definitions
http://www.sleepnet.com/definition.html

READ cpaptalk.com FAQ
cpaptalk-faq.php

Learn to search
use Google & the syntax "search words" site:http://www.cpaptalk.com
or the Advanced Search at the top of each page.

This is the Yellow Lite bulb you'll hear people mention aka "Our Collective Wisdom" - our-collective-cpap-wisdom.php

Read some more.
Good Luck,
GumbyCT

[Trease]

I have so much to learn! I just put my ResMed data card in prior to my appointment and they print off a report on how I am doing with it.

I don't have any software, never heard of the PSG before now and was just assuming that they would alert me to anything I needed to be aware of - which was that my events are down.

Never experienced these symptoms before. GumbyCT - I wondered if any user's were past smokers. I'm ashamed to admit that I still am....which I know I have to quit! Have tried several times in the past year and used every method. So difficult to do when you already feel bad......but sure to be part of the problem.

[eutychus]

Trease, I'm a new user in Michigan too.

I like to ask the obvious (and sometimes stupid) questions... Are you sure you don't actually have a touch of the flu? Sometimes, flu-like symptoms come from the actual flu. Just checking...

That's about all I'm good for right now, except to say, "Welcome to the forum."

[carbonman]

Any advice? Any and all comments are welcome! Trease

T, here are my thoughts after 4mths on the hose:

Get educated, ASAP.

Become your own best therapist. (ref. my first statement)

Assume that the OSA industry(sleep docs, DME, sleep lab)
does not care about you or your therapy. Their primary interest
is in your ability to enhance their revenue stream.

Start keeping daily records, they will show you the road ahead.

If something w/your therapy is not working, find something
that does, ASAP. ....too many options available.

Do NOT let any person, organization or circumstance prevent you
from finding something that does work.

Use this forum.

I'm not a believer in the "good luck", it's not about luck,
it's about you.

It's your life.
It's my life.

Welcome! All the best, it's a journey.