didn't it take anyone else a long time to see benefits?

sharon1965 · Post by **sharon1965** » Tue Jul 10, 2007 11:40 am

hi all
i've been on cpap for six months now (with one month off for septoplasty-april 3rd to may 3rd)...
-i am 100% compliant and other than some typical interface woes, i'd say i've adjusted to xpap pretty well, as in sleeping with the mask on all night every night almost since day one...
-i've finally got the twilight/aura/whatever-it's-called-this-week working decently for me, with all the tips such as decapitating, stretchy tights-leg-straps, pad on forehead etc. and it's definitely the most consistently comfortable so far...
-i'm on requip for periodic limb movement disorder, very low-dose with no side effects (apparently compulsive gambling and hyper-sexuality are things to watch out for, so moving to vegas is out ), though i have no way of knowing if it's working for the limb movement since i mainly sleep alone as hubby works mids; i do know that it's curbing the restless leg component in the evenings, and i'm back to being able to go to the movies on occasion...
-i have outrageously low iron and am now on prescription iron, though i had bloodwork to supposedly 'monitor' my levels almost 3 weeks ago and the moron/receptionist at my gp's office can't seem to tell me where my levels are now
-i use polident strips to manage any mouth breathing issues, although i'm reasonably sure that it's not a problem; i practice good hose management (LOL) i have a papillow, i use pur-sleep, i use pada-cheeks, i use a comfortsleeve hose cover--if there's a fix suggested on these boards, i try it! (i don't have a data capable machine thanks to an uncaring RT, but i'm sure that not everyone who uses cpap has that feature)
so...my question is this...why don't i feel any better?
-i'm still sleeping 12 hours any chance i get; i feel sluggish, unmotivated, sleepy, irritable; i wake up countless times per night (i think i'm hyperaware-- checking for leaks) i'm still waiting for that energy burst...or even some energy creeping in at least; i'm still waiting for that day when i wake up feeling refreshed instead of feeling like a zombie for the first hour of my day (at least)...
-i've read posts from people asking if they're being unrealistic, if their expectations are too high, and the general consensus seems to be "give it time, sometimes as long as a few months" etc....
-hasn't anyone taken longer than that to feel better?
-hasn't anyone else found themselves in the same position as me?
-hasn't anyone else felt like they've done everything they can and still had no results?
-everyone from the sleep doc to the lab techs to the respiratory therapists to my ent told me i'd feel like a new person once i got on cpap and after six months i feel no different...is this all i can expect?
-i'm beginning (ha, understatement) to feel very discouraged and the disappointment is weighing heavily on me...i'm trying to remain optimistic and hopeful, but reading thread after thread about people who feel better overnight or even after a few months is starting to make me think i'm an exception
sorry about the long post...needed to vent
sharon

DreamStalker · Post by **DreamStalker** » Tue Jul 10, 2007 11:55 am

Dang it! ... and I was about to ask you if you wanted to go to Vegas with me.

Darn moron receptionists!

Actually, I think most CPAP users will agree that they have the uncaring RT feature.

It is very difficult to determine how well (or not well) your treatment is going unless you have a machine that provides you with data. Without it you don't know if it is the CPAP treatment that is found wanting or if there is some other underlying issue.

My only suggestion (besides getting you to change your mind about Vegas ) is to talk to your doctor and see if you can't get him/her to change you Rx for an APAP. I wish you the best and hope there is a solution awaiting you in the near future.

sharon1965 · Post by **sharon1965** » Tue Jul 10, 2007 12:07 pm

Dang it! ... and I was about to ask you if you wanted to go to Vegas with me.

actually roberto, it's not completely out of the question: don't they pump oxygen into those dens of iniquity? maybe i'd feel better there!

Actually, I think most CPAP users will agree that they have the uncaring RT feature

LOL, way to take advantage of questionable grammar/syntax

It is very difficult to determine how well (or not well) your treatment is going unless you have a machine that provides you with data. Without it you don't know if it is the CPAP treatment that is found wanting or if there is some other underlying issue.

i know, i know

My only suggestion (besides getting you to change your mind about Vegas ) is to talk to your doctor and see if you can't get him/her to change you Rx for an APAP.

you're right, roberto; i have an appointment with him next week but i don't feel confident that this will be the outcome, though it will be my focus

I wish you the best and hope there is a solution awaiting you in the near future.

thanks, i appreciate your reply to what is really the same s*%t, different day as far as my posts go

ffarmer · Post by **ffarmer** » Tue Jul 10, 2007 12:07 pm

Hi Sharon,
I don't know if I have the answers for you, but I can certainly empathize. I have been of cpap for four and a half months and like you, was disappointed that the treatment didn't make a big difference.
In my case I was diagnosed with sleep apnea following a head injury in a car accident a couple of years ago. I also developed seizures as a result of the injury, therefore I am on a couple of medications which could also be contributing to my feeling sleepy in the day.
I also was waking up several times a night after I started treatment and still not feeling refreshed in the morning. Finally, the psychiatrist that I had seen for post traumatic stress after the accident (for insurance purposes) suggested I take a low dose of Xanax at night and it has really helped. (I also take Provigil in the day, which really has improved the quality of my life, in terms of dealing with the daytime sleepiness.)
My point is, there are other things going on with me besides simply sleep apnea. It sounds like it may be the same for you. It would definitely be important to find out your iron levels as anemia will contribute to your fatigue. You need to let your doctor know how you're feeling too, so that he/she can make any adjustments that may be necessary to your pressure, get you a more comfortable mask, etc.
Good luck, and maybe some of the veteran users will give you some advice!
Frances

Georgia Hosehead · Post by **Georgia Hosehead** » Tue Jul 10, 2007 12:18 pm

Hi Sharon, Have you asked your doctor about a thyroid deficiency? an underactive thyroid can display many of the symptoms that you describe. If the answer is no, then get to your doctor ASAP. It's treatable with a tiny tablet taken once daily. Good luck! Georgia Hosehead

sharon1965 · Post by **sharon1965** » Tue Jul 10, 2007 12:24 pm

"Hi Sharon, Have you asked your doctor about a thyroid deficiency? an underactive thyroid can display many of the symptoms that you describe. If the answer is no, then get to your doctor ASAP. It's treatable with a tiny tablet taken once daily. Good luck! Georgia Hosehead"

oh georgia! i have been all over them about this as i'm still convinced this is part of my problem...i apparently have normal values in the bloodwork and since none of the doctors i see are interested in treating symptoms as well as values, no one seems to think it's a problem...but i hear ya, i'm practically a poster child for hypothyroidism!
thanks for the tip, though
sharon

ozij · Post by **ozij** » Tue Jul 10, 2007 12:25 pm

I was going to say more or less what dreamstalker said -- uh, except for the vegas part.

Outrageously low iron can account for the things you describe but so can a variety of other things - not all of them sleep apnea - and it would be wrong to focus only on sleep apnea.

I would try to get both a data recording machine with software, and a general, thorough checkup. At least one member discovered she had a heart condition contiruting to her exhastion. And while I sincerely hope all you have is OSA - no one can promise that.

Outrageously low iron does not come from nowhere --

Don't give up - you've done everything you could -except for changing the pressure - which you don't have the data for. Some of us eventually settled on something quite different from what the sleep lab suggested based on one night's evidence. For some it was lower, for some higher. You could either ask for a repeat sleep study, or and RX for an data recording machine, with software. The software should be in the RX too.

Hang in there!

O.

arthuranxious · Post by **arthuranxious** » Tue Jul 10, 2007 12:49 pm

Don't count on software and data to help you evaluate if you are feeling better. I have my data, every night's pressure and AHI and AI and leak rate for the last 9 months, and still not sure of the benefit. It is easy to read some of the enthusiastic accounts of people whose lives have been turned around by cpap. I had hopes for vast new energy, weight loss, more positive outlook, less depression and so forth. Didn't materialize. But I think there are some improvements from CPAP, and other things which are aspects of my life that needed work anyway.
Don't be disappointed CPAP is relieving the strain on your body and mind caused by apnea, it may leave lots of other things unresolved, but it still doing tons of good. Keep on trying to fix the other things.

goose · Post by **goose** » Tue Jul 10, 2007 12:49 pm

Hey Sharon,
Vent away -- that's one of the things we're all here for -- to support each other!!!! You will always find ears here.....well, eyes, but you know what I mean!!!

I'm pretty much a newbie -- I've been on the hose for 6 weeks or so. I think I notice some improvement, but certainly not as dramatic as I would have hoped. The morning after my titration I felt GREAT (which certainly raised my expectations). I have yet to repeat that....I still get up and I feel somewhat groggy and foggy until I get some caffeine - just like before CPAP. My numbers are still terrible (AHI is still about 11.6), but getting better over time. Having the data is great!! It let's me know I haven't got it right yet...

My "sanity" is knowing I didn't get here overnight (I'm 57), so I really can't expect it to fix overnight.

I'm about to go to war with my DME because they refuse to provide me with the machine the Doc specified in the prescription -- an Auto PAP so that I can self-titrate within a range (7-14cm H2O). The machine is marginally more expensive (about $100 more if my memory serves me) so their obscene profit margin won't be quite as obscene (Billing code for CPAP is same as APAP so the reimbursement is the same).
If your doc will write you a script for a specific machine -- Like an M series APAP or CPAP or something equivalent -- you should be able to use the insurance company to get what is prescribed (at least that's my tact). I'm going to suggest to the insurance company they reimburse me the cost of an online purchase of the APAP (about $600) and I will return the CPAP, which they will pay between $1800 and $2300 for over the period of the "rental".....Don't know if they'll go for it, but I can always ask!!!

Hang in there!! Keep bugging the doc, the RT and the DME. If the DME doesn't service you well, see if there is a competitor that will (ask the ins co.)

good luck
cheers
gg

tangents · Post by **tangents** » Tue Jul 10, 2007 12:53 pm

Sharon,

My heart goes out to you! Here's what I'm wondering:

1. Is it possible that the one month you spent off CPAP erased whatever progress you had made toward paying off your sleep debt? So even though it has technically been 6 months, your body may think it's only been 2.5?

2. Calcium deficiency can cause leg spasms too. Get enough calcium in your diet or take supplements?

In my case, it took 4 full months before I started feeling rested. Like you, I couldn't get enough sleep. Wondered if I would ever get enough. It's really only been a few days that I feel better, so I'm hoping that I'm not jumping the gun, but a few days ago I got up at 7:30 AM on a weekend.

When's your appointment? I'll send virtual good luck and your way.

Hugs,
Cathy

tangents · Post by **tangents** » Tue Jul 10, 2007 12:54 pm

BTW, once you're feeling better, let's organize a Girl's Weekend in Vegas!

JeffH · Post by **JeffH** » Tue Jul 10, 2007 12:56 pm

Hi Sharon. Sorry to hear you aren't feeling better.

Hopefully you will keep working on those Doctor's and get your problem figured out. I was sure hoping that nose job would fix you right up.

JeffH

Guest · Post by **Guest** » Tue Jul 10, 2007 1:20 pm

oh georgia! i have been all over them about this as i'm still convinced this is part of my problem...i apparently have normal values in the bloodwork and since none of the doctors i see are interested in treating symptoms as well as values, no one seems to think it's a problem...but i hear ya, i'm practically a poster child for hypothyroidism!
----------------------------------------------------------------------------------------
Be sure your Dr. is not just giving you just a "THS" thyroid test. It might not show anything it didn't with me. Be sure it's a "free T4" thyroid test to really be accurate. If your temprature runs low you can be pretty sure you are hypo. A basel thermometer under the arm for 5 minutes before you move in the morning (or for me it worked just by mouth) Your temp should be about 98 degrees or above I believe. I don't know the web address but if you don't know of her already google "Mary Shomon thyroid" it's "the" thyroid web site. I've been on the "natural" little pill (Armour) If you do have a thyroid problem do keep track of it with a periodical test, my Dr. wants a Free T4 about every 6 mos. so I don't overshoot because "Hyper" thyroid can do some damage.
Good Luck, J (wife of hose head)

sharon1965 · Post by **sharon1965** » Tue Jul 10, 2007 1:21 pm

thank you everyone for your replies and encouragement

i guess what's bugging me so much is that after years of trying to find out what was wrong with me and being told everything from "i'd hate to see you if you had a real problem " EX-doc, needless to say, to "eat less, move more and take this anti-depressant" to someone finally checking my ferritin level and finding it so low and also diagnosing severe sleep apnea and severe periodic limb movement disorder, i had high hopes that we had finally nicked it and i would have some chance of getting better...

when one first sets out on this path, there is no way of knowing all the ins and outs and subtleties of xpap, including the need for data capability and the freedom to monitor one's own therapy, unless you are fortunate enough to stumble upon the huge wealth of information that is this forum BEFORE you see your supplier...it's a classic case of 'if i'd known then what i know now'...and the predicament i find myself in now is that i have more info but no one to listen! (medically speaking, that is); unless you know firsthand the joke that is ontario health care ('sick care' would be more accurate, as they only take you seriously if you are dying!, and even then, maybe not so much...) you can't understand how insurmountable it can seem to try to put the excellent advice one finds here to meaningful use, ie: 'keep bugging your sleep doc and dme'...it doesn't matter how many times you call, how much you beg for an appointment, how much information and expertise you have acquired...no one in the medical field here is interested in helping you get well...it's simply a business and treated as such...so my sleep doc got his money for my psg, my supplier got their money for my crappy equipment, my g.p. gets paid to herd people in and out of her office in 3.5 minute intervals and i still feel like hell; getting a new doctor of any kind is out of the question: if you already have a gp, no matter how much they suck, no one new will take you; if you see a specialist here no other specialist will touch you for a second opinion and you can't get a referral to someone in another city if your gp won't give it; if you rock the boat you can be 'fired' by your gp and then no one will take you as you're now a 'difficult patient', leaving you in the situation that so many people in this city are in: NO DOCTOR

sorry, this has turned into a rant; i just wanted to illustrate where my frustration comes from in that i have been on this path for 13 years, trying to find out what the hell is happening to me and being roadblocked by so- called medical professionals who not only don't know the answers but who are not remotely invested in trying to find them; i thought i had finally found the answer through years of digging and trial and error...i finally got a diagnosis and yet the treatment i have been offered is substandard; the cost of paying for better treatment out-of-pocket is prohibitive as these things are so much more expensive here in canada (not to mention maddening, since i should have been given this option in the first place before using up my coverage on shite) and i feel more hopeless than i did before i started this therapy

maybe i can maintain this level of anger till next tuesday and i can blow the head off my sweet, ineffectual little sleep doc with a torrent of angry yet eloquent and productive demands!

sorry, thanks again, must be run-on-sentence riddled rant day ...now i'm even more exhausted! lol

sharon1965 · Post by **sharon1965** » Tue Jul 10, 2007 1:39 pm

In my case, it took 4 full months before I started feeling rested. Like you, I couldn't get enough sleep. Wondered if I would ever get enough. It's really only been a few days that I feel better, so I'm hoping that I'm not jumping the gun, but a few days ago I got up at 7:30 AM on a weekend.

cathy
i didn't realize it had taken that long for you ( am i self-centred much? )
thanks for telling me that! it gives me hope

btw, my appointment is july 17...send me virtual courage! luck doesn't seem to cut it

thanks
sharon

Mask

Additional Comments: Equipment isn't correct, S9 ASV w/H5i