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Post treatment... how long to notice changes and how did they manifest?
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shewhorn Offline

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Post: #11
RE: Post treatment... how long to notice changes and how did they manifest?
(05-05-2016 11:36 PM)robysue Wrote:  I'm sharing this with you not because I want to discourage you: I am an outlier. Most people do feel much better within a couple of months of PAPing. Some feel better almost immediately. But its important to realize that patience and perseverance can be very important in making this crazy therapy work if you wind up being one of the unlucky ones.

Best of luck!

Not discouraging at all... quite the opposite actually. My first round with PAP was in... 2010/2011 I think? I tried it for a few months but didn't adapt well and gave up. This last round I started on January 3rd and have been committed to making it work this time. I had my first sub 1.0 AHI night on April 29th (swapped out the Airsense for an Aircurve ASV which seems to be doing the trick). Still waking up groggy but it's allergy season so I'll attribute it to that. I have gotten more than 8 hours of sleep every night with the exception of last night and that's a first for me. My normal over the past 4 years has been 5.5 hours of sleep, +/- 0.5 hours (with a bias towards the -).

Aside from the dream I can't say I've noticed any difference yet so it's good to know that for some, it takes a long time to notice a change.

There are some changes that I'm hoping for. I have what you could call text book ADHD symptoms and that was for a while my diagnosis until my psychologist, neuropsychiatrist, and neuropsychologist all seemed to think that something didn't quite fit. I've tried ALL the ADHD meds (at least 16 different meds, including some that were very much off label and outside of the box thinking) and I only responded to one of them for 2 weeks (after which point I developed a resistance... you can put some seriously high levels of stimulants into my body and it's as if I was taking a sugar pill... my psychiatrist was perplexed to say the least, I'm guessing I'd make a really terrible crack addict Big Grin ).

Anyhow, their current thinking is that although I have a lot of textbook ADHD symptoms, something else may be causing them.

My neurologist's theory is that I may or may not have ADHD, but... supposing I do, he says that a lack of sleep could easily have prevented the medications I've already tried from working so if I don't see improvement from PAP alone, it would be worth trying all those meds again. Anyhow, before he moves on to address anything else, he's been insistent that we get the sleep under control first (an approach which seems logical, and one that I can appreciate).

Anyhow... the symptoms... easily distracted. If I'm doing something and the phone rings... I will not return to whatever it was that I was doing as I'll literally forget I was doing it. Difficulty starting tasks, poor follow through, poor memory, poor executive reasoning... the list goes on.

So, I'm hoping the PAP helps to improve some of these.

Thanks to everyone for sharing, it's really appreciated. Feel free to keep 'em coming.
05-06-2016 09:08 AM
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holden4th Online

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Post: #12
RE: Post treatment... how long to notice changes and how did they manifest?
ADHD is one of the most misdiagnosed ailments of the last 30 years. As a teacher of nearly 40 years I've maybe met about a dozen kids who were truly ADHD. I've also seen kids diagnosed with ADHD, rediagnosed with allergies, usually connected with food or medication.

Glad to see that your doctors are relooking at your situation and I hope that a definite diagnosis, backed up by strong medical practice happens for you. You don't need guesswork. The number of kids I've seen put on strong drugs like dexamphetamines and ritalin derivatives that just stuffed their minds based on an educated guess by a doctor is well into the hundreds.
05-07-2016 05:14 AM
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kwhenrykerr Offline
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Post: #13
RE: Post treatment... how long to notice changes and how did they manifest?
RE: Post treatment... how long to notice changes and how did they manifest?

The first couple of nights I woke up to no mask. After the third night it stayed on all night. The headache and fog were less. Improvement yes, Magic Cure All no.

I used an older machine from the flea market with unknown settings. After many weeks of use I set up an appointment with a doctor. After a Sleep Study and a new machine with doctor prescribed auto machine and his settings. I feel the old system worked better.

I am sticking to the new equipment and giving it a chance to be evaluated. That is what the experts get paid for. Last night 113 times the oxygen alarm went off and I got a little over 4 hours sleep. That is an Improvement as judged by less painful headaches and less fog.

Rome was not built in a day and I have lived with the problem way too long to rush to judgment. Their are too many issues in play to point a finger and blame my suffering on any one thing.

With new equipment that records for review maybe more improvement can be made. If it did not get any better than this I would say it still is a success. I have not forgotten what it was like before cpap.

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
05-07-2016 06:02 AM
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FrankNichols Offline

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Post: #14
RE: Post treatment... how long to notice changes and how did they manifest?
Well, I have been on the hose for 4 weeks now and had my first followup with my sleep doctor yesterday. I am about as tired as I was before I started, or possibly a little more tired during the day. In my case things seem to be going about the opposite of the norm. Speaking with my doctor about it, I had a sleep study that showed AHI of 14 which is mild (makes me feel like a wannabe compare to all the seriously severe cases on here - Sad ) He said that in cases of mild OSA it is not unusual for the patient to not see an immediate significant improvement. In many cases, like mine, I was sleeping more hours to compensate for the poor quality of the sleep - meaning I would sleep 8 to 10 hours a night because I was waking up so often.

Now, I am sleeping less and less - it's almost a problem which he said would settle down eventually as I become accustomed to the new sleep quality. I now sleep around 4 to 6 hours at night and wake up mostly refreshed, but a few hours later I am tired and take a nap. The reason being I am still not getting enough sleep, but the reason now is that because the quality of the sleep is improved, my body is confused and thinks it's done for the night. He assured me that as I get the AHI down and become more accustomed to the new way of sleeping I would get back to 7 hours or so a night and then start feeling better, but it would take a while.

I am not a Medical professional and I don't play one on the internet.
Started CPAP Therapy April 5, 2016
I'd Rather Be Sleeping
05-07-2016 06:15 AM
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0rangebear Offline

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Post: #15
RE: Post treatment... how long to notice changes and how did they manifest?
After reading robysue's post; my experience wasn't as bad as I first thought. My first six weeks were just as she describes here, plus a severely dehydrated mouth.

(05-05-2016 11:36 PM)robysue Wrote:  I'm one of the unlucky ones. The first 3 months of PAPing were hell. My daytime functioning plummeted and an insomnia monster moved into my bedroom.

The next 6 weeks were ok, but I did not get back to feeling as good as I did b4 therapy until the end of the third month.

I am in my 5th month of therapy and can say it was worth the pain to get here.

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Thinking-about ...................... justMongo

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it'll take more than a doctor to prescribe a remedy

Observations and recommendations communicated here are the perceptions of the writer and should not be misconstrued as medical advice.
05-07-2016 09:41 AM
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parrst Offline

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Post: #16
RE: Post treatment... how long to notice changes and how did they manifest?
(05-05-2016 11:36 AM)shewhorn Wrote:  Just curious. I know everyone's experience is different. I'm curious to know how long it took before you started to notice changes, and how those changes manifested over time?

... BUT... I'm starting to dream (and remember that I've had dreams) which I'm sure is the result of the treatment as I hardly ever dream (or at least, if I do, I never remember them).

Last night I dreamt that my dog knew how to use the Force! She was floating in mid air against the wall next to my bed and using an ancient Jedi mind trick to communicate with me telepathically. I asked her if she could levitate things with her nub, she said she'd never tried before and pointed her nub at me. I could feel her touching my ankle, and then my shoulder.

First off I want to know what you are putting in your humidifier! lol

This is my second round with CPAP. First time I got the sleep study because a friend described my snoring to another friend who recognized the symptoms and suggested a sleep study. I HATED IT. I really did not notice any improvement and usually only lasted 4 hours or so before I ripped the gear off my head. I eventually stopped when I started mouth breathing and even with a chin strap my mouth would open and the machine was ineffective. Flash forward a few years later, I started experiencing micro naps. I would not feel dowsy or nod off, I would simpley wake up. These were only a second or less but when driving that is enough to cause a wreck. I saw an ENT who (short story version) took my tonciles and fixed a deviated septem. This cured me as far as my wife and I could tell. My snoring got much quieter and I was not snorting and gasping (Never did another sleep study to be sure) but I was better. Flash forward to this year and I started waking up KNOWING I was gasping for air. This was very discomforting and triggering anxiety attacks and panic. (I put on 20 lbs and my apnea came back) So I went through the process and now have a resmed A10 auto for her (took a bit of arm twisting with my DME) But this think is MUCH quieter and I am using the nasal cushion which is low profile and has a swivel connector at the top. It is MUCH easier to sleep with and keep from leaking. I LOVE the swivel at the top as the hose stays out of the way no matter which way I roll.

NOW as to how I feel. I was starting to nod off at work. That stopped DAY one! I do wake much more groggy and it takes half an hour for that to completely go away, but I think that is because I am getting GOO, DEEP sleep. I still yawn at work sometimes but never get groggy. I used to wake many times in the night (no big deal I would roll over and go right back to sleep) I wake less but have more body pains because I am sleeping so sound I don't realize my body needs to move. I also have not had to get up to pee ONCE since starting and I used to do that at least once sometimes as many as four times.

Hope this helps.
05-07-2016 10:31 AM
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shewhorn Offline

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Post: #17
RE: Post treatment... how long to notice changes and how did they manifest?
(05-07-2016 05:14 AM)holden4th Wrote:  ADHD is one of the most misdiagnosed ailments of the last 30 years. As a teacher of nearly 40 years I've maybe met about a dozen kids who were truly ADHD. I've also seen kids diagnosed with ADHD, rediagnosed with allergies, usually connected with food or medication.

Perhaps but... I have an unusual case. A nuclear brain scan (which I will say I question the validity of as the Amen Clinic refuses to publish their research which sends out red flags to me, if you're not willing to have your work scrutinized by the scientific process then it makes me wonder what you're afraid of) and an MRI (not by the Amen clinic, the MRI was done by my GP and those findings have legitimate published science behind them) as well as standard DSM IV and V screening tests and two neuropsych tests both strongly indicate ADHD without hyperactivity.

One thing is definitely 100% certain, it has absolutely nothing to do with foods or medications (been down all of those roads multiple times). There is absolutely no quantitative data to suggest that I don't have ADHD. The reason that the diagnosis is in question basically has to do with a hunch... after getting to know me over 4 or so years, my psychologist and neuropsychiatrist (who both specialize in ADHD at Mass General... I went to them because they LITERALLY wrote the book on treating ADHD with CBT) in talking with each other over the years both seemed to be of the opinion that interacting with me was just a little bit different than interacting with all of their other patients. Given that none of the standard treatment (and some rather non-standard treatments) they tried had no effect, they started wondering if maybe there was something else going on. I still have textbook symptoms of ADHD without hyperactivity.

At any rate... once poor sleep is eliminated from the equation we can go back to trying the things that we've already tried, and failed at, to see if poor sleep was rendering those treatments to be ineffective. If that fails, then we're back to the drawing board once again.
(This post was last modified: 05-07-2016 11:38 AM by shewhorn.)
05-07-2016 11:35 AM
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Sleepster Offline
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Post: #18
RE: Post treatment... how long to notice changes and how did they manifest?
(05-05-2016 11:36 PM)robysue Wrote:  I'm sharing this with you not because I want to discourage you: I am an outlier. Most people do feel much better within a couple of months of PAPing. Some feel better almost immediately. But its important to realize that patience and perseverance can be very important in making this crazy therapy work if you wind up being one of the unlucky ones.

That is the important and encouraging part of your message. Perseverance pays off! It may be miserable at first, but that will pass.

My experiences were similar to yours, but not as extreme. It took me a couple months to reach what I call the cross-over point. Meaning I started feeling better, not worse, than before CPAP therapy. But even during that two-month period there were days when I would wake up feeling I'd finally gotten at least some good rest.

After about six months I started getting relief from the nasty tension headaches that had plagued my existence for decades. I also was able to stop using my night guard for the first time in about 15 years.

I figure that the muscle tension was caused by the extra effort required to do the thinking needed to function. The impaired cognition associated with sleep apnea was just too much, and I was unable to compensate without constantly clenching the muscles in my forehead and jaw.

I have never had to go without my CPAP machine for even a single night or even a nap since I received my first one about 4.5 years ago.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-07-2016 11:51 AM
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shewhorn Offline

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Post: #19
RE: Post treatment... how long to notice changes and how did they manifest?
(05-07-2016 06:15 AM)FrankNichols Wrote:  Speaking with my doctor about it, I had a sleep study that showed AHI of 14 which is mild (makes me feel like a wannabe compare to all the seriously severe cases on here - Sad ) He said that in cases of mild OSA it is not unusual for the patient to not see an immediate significant improvement.

This is good to know. I seem to fall into the 15 to 18 AHI range on my studies... just enough to be classified as moderate but for all intents and purposes... probably pretty close to what you have.

I'm going the opposite direction however... I was getting 5 to 5.5 hours of sleep on average and since switching from a CPAP to an ASV a little over a week ago, I've slept more than 8 hours every night with the exception of one. I am still waking up groggy but... it's pollen season here in New England where the color of every car on the road changes to green and that often causes me to get the snoozies!

I do imagine my body is quite confused right now as this is definitely the first time in my life that I can remember sleeping more than 8 hours a night so many consecutive nights in a row and it's probably trying to figure out what to do with that.

Time will tell! Smile
05-07-2016 11:55 AM
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eseedhouse Offline

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Post: #20
RE: Post treatment... how long to notice changes and how did they manifest?
(05-07-2016 11:51 AM)Sleepster Wrote:  I figure that the muscle tension was caused by the extra effort required to do the thinking needed to function.

Hmm... The Brain is not a muscle and does not require muscular effort to function at full capacity. Rather the opposite, in fact.

Yet we see people lifting their shoulders, clenching their jaws and staring hard at the job to hand. None of this helps, but we are trained unconsciously to do so, almost from birth. That's because we are seen to be trying very hard and that pleases our elders. We may not be getting any thinking done but everyone sees that you are "trying" very hard.

Clenching your muscles helps you walk talk and lift stuff. It does *not* help you think. To think best you need to be in a state of relaxed awareness. The brain is not a muscle and clenching other muscles won't help it.

It's a hard habit to break though, at least for me, I still do it even while I know it does no good.

And while the brain is not a muscle it is of course material and consumes energy.

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Actually you know, it is what it isn't.
05-10-2016 05:35 PM
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