first follow up appointment

sharon1965 · Post by **sharon1965** » Fri Feb 16, 2007 6:00 pm

well..i've been on cpap for six weeks now, had my first check up with sleep doc...i haven't really noticed meaningful results, except to say that i am able to stay awake after work until bedtime now, which i guess is something, but on days off and weekends i still sleep 12-14 hours; i haven't begun to feel rested or refreshed; when i wake up after 8-9 hours i still feel the same ie. crappy!; i have fibromyalgia, too, though, so global pain and specific pain is the same and so is my fatigue and lack of energy (i'm hoping eliminating the apneas/sleep disruptions will address the fibro.) my brain fog hasn't begun to diminish, and, in fact, seems worse...in general, i feel like nothing has changed...yet; doc says it can take 6 mos to a year to receive full benefits of cpap, but he also told me that i have pretty severe plmd ...i was hoping cpap would address that, also, but between first sleep study and titration: no change; i'm seeing an ent on tuesday because he suspects deviated septum also ...on a positive note, i have found many great suggestions/ideas on this forum, especially where mask preference is concerned...i'm having some success with the swift and am hoping to switch it to the opus next week...apparently the aura, which i was interested in, is an american product and not available thru my respiratory therapist ...so, i guess what i need to know from the other kind people on this forum is that i will get there...won't i?
thanks for the opportunity whine, cry, gnash my teeth and vent

Slinky · Post by **Slinky** » Fri Feb 16, 2007 6:45 pm

You will get there. Honest injun. As long as you persevere. You can't expect to notice any difference between the sleep evaluation study and the titration study. And even then it usually takes some "tweaking" of the pressures to FINALLY hit that sweet spot of virtually no apenas or hypopneas.

Despite how you feel, you have experienced SOME benefit, you can stay awake after work until bedtime now. Not much and certainly not enough but Rome wasn't built in a day.

It took me 30+ miserable days before I FINALLY found myself more rested than BEFORE I started xPAP therapy. Its been 4 months and we still haven't found my "sweet spot" but we're working on it. And we'll get there - eventually. NOT soon enough for my taste, of course. But ... we'll get there. Others have so we can too.

If you have a couple of extra bucks and really wanna try the Aura, it is available thru cpap.com

https://www.cpap.com/productpage/aeiome ... rface.html

rested gal · Post by **rested gal** » Fri Feb 16, 2007 6:59 pm

"apparently the aura, which i was interested in, is an american product and not available thru my respiratory therapist"

Interesting. So, Invacare products in general (Invacare wheelchairs, etc.) are not available through the home health care providers in Canada? The official name of the Aura is "Twilight NP" and it's marketed by Invacare. Perhaps check with the RT again, using that name for the mask.

cookie246 · Post by **cookie246** » Fri Feb 16, 2007 7:23 pm

I have been to my follow up visit and I have found great relief from my cpap. I am so grateful for the sleep and less pain from my fibromyalgia. For nearly 5 years i progressively got more tired and life became painful both physically and emotionally. I was a mess and one point was becoming less and less mobile cause I was so much in pain and exhausted.

My cpap is awesome and was going to fight if I had to so that I could keep it. I wont have to but I am willing.

Hang in there and you will get the relief. Some people take longer to adjust and I was one of the rare ones who responded well and have had no trouble.

I dont sleep my life away any longer and I have a good 7 -8 hours a night of good sleep.

Keep working at it and dont let up. You may need to change masks.

cookie

sharon1965 · Post by **sharon1965** » Fri Feb 16, 2007 8:05 pm

Slinky[quote] wrote:"You will get there. Honest injun. As long as you persevere. You can't expect to notice any difference between the sleep evaluation study and the titration study. And even then it usually takes some "tweaking" of the pressures to FINALLY hit that sweet spot of virtually no apenas or hypopneas."

no,slinky, i meant that during the sleep study i had a lot of periodic limb movement disorder, and with the cpap on the second study, there was no change in the plmd

sharon1965 · Post by **sharon1965** » Fri Feb 16, 2007 8:10 pm

rested gal,
i'm not sure, that's just what the rt told me on the phone, that they didn't carry,and in fact had never heard of, the aura, and that if it was a u.s. product, they couldn't get it for me...but if i really want it i can always purchase it myself...i'd just prefer to exhaust the "covered" possibilities first...i will, however, mention it to her again with the official name as you suggested...thanks!

rested gal · Post by **rested gal** » Fri Feb 16, 2007 8:14 pm

sharon1965 wrote:during the sleep study i had a lot of periodic limb movement disorder, and with the cpap on the second study, there was no change in the plmd

Did the PLMs that persisted during the titration cause arousals? If so, did the doctor suggest meds to control the PLMD?

You might want to PM kteague or do a search on this board for PLM posts with kteague as the author's name. She's had more than her fair share of experience with PLM's disrupting sleep.

Gerald · Post by **Gerald** » Fri Feb 16, 2007 8:33 pm

Sharon........I ran into something the other day that might help you. I did a Google search on "ozone asthma" and was surprised by what I found.

If you happen to have one or more photo-copiers or laser-printers nearby, you may be experiencing difficulties because of ozone poisoning.

Ozone is a primary component of smog.......and it's especially dangerous for people with Fibro, Asthma, or chemical intolerance. Copiers and printers emit plenty of nasty chemicals. You may be poisoning yourself and not know it.

Gerald

sharon1965 · Post by **sharon1965** » Fri Feb 16, 2007 9:58 pm

rested gal wrote:
sharon1965 wrote:during the sleep study i had a lot of periodic limb movement disorder, and with the cpap on the second study, there was no change in the plmd

Did the PLMs that persisted during the titration cause arousals? If so, did the doctor suggest meds to control the PLMD?

you know, he didn't really say (about arousals)...but we did talk about meds...i'd like to wait a little longer, he wants to leave cpap the way it is and revisit it in 5 months...he mentioned that since the we achieved perfect control of the apneas with cpap, i might want to consider plmd as another major reason for tiredness...he did say, too, that fibromyalgia can cause the jerking, twitching and limb movement i'm experiencing...am kinda hoping if the cpap addresses the sleep disturbance which i'm hoping is the underlying reason for the fibro, it'll all settle down...i'm not really into meds, as i'm very drug sensitive and if there are side effects to be had, i'm havin' 'em...greedy that way
thanks for the tip..i'll check out the posts you referenced
thanks for your input
sharon

uszsa3 · Post by **uszsa3** » Sat Feb 24, 2007 9:27 pm

Hi, my name is Sonya. Last night was my first night on CPAP and even though I was drop dead tired, I could not sleep with the CPAP in my nose. It was not uncomforable or anything. I just could not go to sleep once I had that thing in my mouth. Please advise if this gets better.

Guest · Post by **Guest** » Sat Feb 24, 2007 9:54 pm

What type of mask are you using, Sonya, that you couldn't tolerate it in your nose AND your mouth or was that "mouth" a typo?

Yeah, it does get better.

You might try donning your mask whilst sitting watching TV, reading a book, whatever, around the house w/o the hose and xPAP. Just to get used to having it on your face and "in your nose". Wearing it whilst you are doing something that distracts you can help w/the adjustment and getting comfortable wearing it.

Try wearing it just the first hour in bed. You'll find yourself starting to doze off w/it on as you get acclimated to wearing it.

first follow up appointment

first follow up appointment

Hang in there!

My first night on CPAP