will the doc know if I changed pressure?

[PhiloHypnos]

Thanks Karen for all that very useful info,
Making good use of it

Update: Day 4
13 cm pressure + poligrip & bandage tape sealed lips + GERD medicine + machine brought closer and hose hung above head

- Went to bed very late (4 AM) because of the inadvertently long afternoon nap yesterday. Woke up at 10AM.

- Gerd medicine did its job. No heartburn.

- Happy to say the poligrip cream between lips and the bandage on top kept my mouth completely sealed all the way till morning. Mouth leaks eliminated. However, when waking up I still felt a bit dry and irritated where my pallet meets my throat. So, without the mouth leaks, this appears to mean that I am still snoring and my pressure needs increasing. Unless it is because of mask leaks. remember waking a few times towards the morning, with quick breathing, so it seems I'm still having hypoapnea events. pressure issue? or mask leak issue?.

- Keeping the machine closer to me, on the window sill and the hose above did make things much more confortable hose-wise, a looser hose causing less mask displacement, fewer leaks, and thus fewer arousals during the night. I did get aroused a few times later in the morning, because of tickly mask leaks, the mask being pushed to the side by my pillow. I didn't seal the mask with silicone or poligrip because I don't think I'd like the icky oily feeling of it. I think I can minimise the problem by better adjusting the mask straps.

- Sleep quality MUCH improved by the latest adjustments. I remember waking / being aroused far fewer times during the night, with less 'disturbingly vivid' dreams, compared to days 1-3 (an effect of less leaking, hypoapnea & GERD?). Got up after only 6 hours. Still somewhat 'headachey' (a sort of tightness behind the eyes, as though my eye muscles are strained, is this due to crazy REM sleep eye movements? hypoapnea?), but definitely feeling much much more refreshed and cognitively sharper than usual, especially given the fewer hours of sleep. The 'brain fog' I usually get seems to be almost completely gone. Brain feels 'cleaner', like it's had adequate oxygen. Still feeling a bit underslept and not 100% refreshed, could have used a couple more hours sleep, but no where near as groggy, brain foggy, and headachey as before day 1. Especially when I used to sleep this late before day 1, I would feel terribly sleepy the whole day no matter how long I slept. Not at all the case today. Definitely also an improvement in sleep quality compared to days 1-3.

- will probably still need a short afternoon nap. must be careful no to let it last too long, lest I sleep too late again.

Conclusions: good progress
- keep latest adjustments and push for a full face mask with hospital RT.
- really should try sealing the mask.
- probably need pressure increase. Ideally with an APAP, I think my pressure settings would be min 10 - max 15.
- still need those thick window blinds.

[ozij]

The silicone putty is neither oily nor icky... though slightly tacky


O.

[PhiloHypnos]

Ok good if its not oily! will try and find some. I remember using silicone putty earplugs once that were literally oozing with oily mucus out of the box... yuck

[birdshell]

Do you have a 6 foot hose? Hoses are fairly cheap. I believe a 10 foot hose would still allow you to treat yourself without making any changes to your CPAP pressure. There are also 12 foot hoses that may require you to change the pressure, but I am not at all sure about that.

Also, this may be due to medication, but my tongue and soft palate will often feel dry in the morning. This never happened before starting some of my meds. If I move my tongue around, the saliva is spread and the dryness is eliminated.

Further, I should think that you do not need both the Poligrip AND tape to keep your mouth closed...but maybe I missed something? Poligrip strips didn't work for me, but simply using mouth tape does.

It is great to see that you are improving. We all have to find what works for us, through good old trial-and-error. Keep on trying, error-ing, and succeeding.

Karen,
Who often has dry tongue

[PhiloHypnos]

Thanks Karen

My former hose used to be longer. The replacement my RT last gave me is shorter. I could ask for a longer one when I next see her. But putting the machine on the windowsill is doing the job quite well. As I'm a side sleeper, I'll try fixing the swivel nozzle of the nose mask so that the hose always goes upwards over my forehead, rather than swiveling to the side, poking my pillow and displacing the mask, which causes the side leaks.

The dryness I experience is very slight and only at the back of the mouth where the soft palate meets the pharynx. The rest of my mouth and tongue stay nice and moist throughout. I'm not sure what causes that slight dryness and irritation in the pharynx. But it is definitely less pronounced than before I sealed my mouth. Not much of an irritation. Disapears quickly after I wake up. It just feels like the after effect of snoring. Snoring does occur exactly at that spot. I'll find out for sure when the pressure goes up or I use an APAP. Maybe I just need to drink more water before going to bed...

The Poligrip strips didn't work for me either. I'm using polygrip cream, which is much better because I can shape it like putty and smooth it over my lips to form a perfect seal, and it's also much easier and less messy to peal and wash off. I need to use both poligrip and tape on top because neither is strong enough to resist air leaks on its own. It's working and it's comfortable enough, so I think I'll stick to that solution for the time being

Cheers!
arkein

[birdshell]

No problem, but you must be one STRONG mouth breather.

One thing that has helped me is using mouthwash for dry mouth after very meticulous oral hygeine, such as my trusty Sonicare toothbrush and flossing. The one I have found to work best for me is: Oasis Mouthwash

The Oasis website was being updated just now when I tried to visit it. Thus, I had no idea of availability worldwide.

Another, which didn't works as well for me; it very well may for you: Biotene Mouthwash

It appears from the home web site that Biotene is not available in retail stores outside of the USA. It is, however, available on the Internet for ordering. No doubt this makes the cost overly prohibitive.

I see that the Biotene people have a new one out, Plaque BioFilm or PBF. I have no experience with this one. Anyone else out there who has?

With the differences between countries, I shouldn't be too surprised to find similar products by different names on the pharmacists' (chemists') shops.


Karen,
Who advocates for a moist mouth

[PhiloHypnos]

Many thanks again Karen for the useful info!

I'm definitely a hardcore mouth leaker!

I'd never heard about this type of product before. I do use regular mouthwash almost every night.

Checked out the Biotene site... so funny that they do it for pets too makes sense though when I think of my late dog's stinky breath!! how do you get a dog to gargle though??

I might wait and see if the pressure increase on Monday might help with the dry pharynx issue. If not, I'll try the mouth wash solution.

[PhiloHypnos]

Update, Day 4:

Got quite sleepy in the afternoon and took 1 provigil (which I haven't taken in weeks). The provigil was enough to keep me up, so no naps. Got a slight attack of weird brain fog in the afternoon. No where as strong as usual though. Familiar strange symptoms: facial tightness, tightness behind eyes, feeling of "pressure" in the head, cognitive "dimness", difficulty concentrating, attention deficit, headachey drowsiness, dimmed vision, pronounced tinnitus, increased GERD, itchy gums bizarre

This always seems to hit me right after eating foods with high glutamic acid (had two burger patties with vegies for a late lunch, also happens when I eat eggs, cooked cheeses, anchovies, soy sauce, food with msg). Kind of like "Chinese restaurant syndrome". But it only happens when I don't have an ideal night's sleep, and especially when I "oversleep" with inadequate pressure settings. when I sleep correctly I don't get it no matter what I eat. Also tends to happen more when I take these foods in addition to having taken certain medicines on bad sleep days: provigil and piracetam (a very good 'smart' supplement for concentration and memory support). Based on wikipedia article on glutamic acid, my hunch is that the glutamic acid worsens a tendency toward vasospasms on days like that, and causes lower serotonin, acetylcholine and dopamine release in brain, which is accentuated by provigil's and piracetam's increased demand for these neurotransmitters. dunno.

One thing's for sure, better sleep, fewer leaks, and adequate pressure settings attenuate this type of brain fog, and it wasn't as bad as usual.

UPDATE, Day5:

13 cm pressure + poligrip & bandage tape sealed lips + chinstrap + eye mask + GERD medicine + machine brought closer and hose hung above head + mask nozzle fixed to forehead pad with elastic to keep it from poking pillow.

- slept a bit late again. but earlier than yesterday. Rose after 6 hours without alarm, just like day 4.

- sleep quality and refreshment levels exactly same as day 4. Same slight dryness in Pharynx.

- still having trouble with annoying mask leaks in the morning. Didn't have time yesterday to get silicone earplugs to seal mask.

Conclusions:
- sleep earlier.
- is this mask too small or something? try using the silicone and get that full face mask.
- pretty sure now that the pressure needs increasing.


Edit: further update on Day 5:

Had a 1:30 hour post lunch nap. Feeling very refreshed now! almost like 100% functional!
For the nap I sealed my lips with poligrip and tape, but no chinstrap. Now, I definitely know that I was leaking through the mouth: I slept the whole nap dreaming that I was walking around with inflated cheeks! woke up with inflated cheeks too. Seems the chinstrap keeps the cheeks from getting too inflated when I seal the lips up.

[birdshell]

I should not be at all surprised if piracetum and Provigil taken together are causing your problem with glutamic acid. In looking at the Wikipedia article on piracetum, it is recommended for some Attention Deficit Hyperactivity Disorder (ADHD) cases. Provigil has been approved for use for ADHD cases as well, at least here in the USA.

Provigil was withdrawn from recommendation for ADHD, but I am not sure if that is still true or not. At any rate, it is still used for some ADHD cases.

Provigil, which I take twice daily, makes me somewhat ADD. I am not ADD without the medication. I figure that since it speeds me up, then it makes some sense that it may slow down an ADHD brain. (Most ADHD medications would speed up a "regular" brain, yet slow down the impulsivity and distractibility of that belonging to an ADHD person.)

Thus, I am thinking the two taken together may be causing a sort of "overdose" as you noted, by fighting for the same transmitters and receptors in the brain. Best wishes, and sleep well.

Karen,
Who enjoys sleeping AND being truly awake

[PhiloHypnos]

Thanks Karen for the input,

I don't think Provigil and Piracetam compete with each other for neurotransmitters: It is thought that provigil mainly increases dopamine and serotonin release in specific portions of the brain, while Piracetam increases acetylcholine release throughout. So they work on different circuits. When Piracetam is taken without a choline supplement, it can cause headaches because of increased demand and insufficient supply of acetylcholine by the body. Taking Choline Bitartrate or Lecithin eliminates these headaches. I've pretty much confirmed this for myself through experimentation.

However, low quality sleep from Apnea/Hypoapnea when the CPAP is not adjusted correctly probably causes a reduction of the brain's ability to synthesise neurotransmitters, and can cause vasospasms which lead to vascular headaches. If I am correct and remember what I've read correctly, excess Glutamate not only causes release of GABA, which is an inhibitory, drowsiness-inducing neurotransmitter, but reduces dopamine, acetylcholine, and serotonin synthesis, leading to 'depressed' cognitive functioning. It can also cause vasospasms. I have found that when I get my bad-sleep-day + glutamate brain fog, taking 650mg choline bitartrate + 500mg L-tyrosine (a dopamine precursor) + 50mg 5-HTP (a serotonin precursor) + 250mg Magnesium (helps calm vasospasms) tends to relieve the symptoms somewhat. That being said, a disclaimer: these are my medically untrained opinions and should not be taken as authoritative medical advice or information

UPDATE: Day 6.

13 cm pressure + poligrip & bandage tape sealed lips + chinstrap + eye mask + GERD medicine + machine brought closer and hose hung above head + mask nozzle fixed to forehead pad with elastic to keep it from poking pillow.

- slept slightly earlier (still a bit late...). Woke up after 7 hours.

- Sleep quality was very good! Feels like I slept like a log all the way. Had fewer arousals. Using the eye mask has had a good effect. Very few mask leaks as I seem to have better adjusted my straps. I bought some silicone putty yesterday, but didn't use it as I wasn't sure how to.

Overall I'm feeling so much better now! I'm still not 100% refreshed. I'd put it at 85%. Hugely reduced headache, drowsiness and brain fog. I seem to have almost completely eliminated the leakage and other secondary problems. So I'm confident that with a further increase in pressure I'll be feeling even better. Unless it turns out I have an underlying REM disorder or a bad case of Central apnea, in which case APAP and adapted REM disorder therapy will help.

I think I'll have a very productive day today! YEY!

Edit: I'm beginning to doubt I have bad Central apnea, this would have been visible in the take home oxymetry test I did a few months back... On the other hand, it seems from the info I've gathered, that hypoapnea, and snoring, can cause arousals without significantly impacting on blood oxygen levels. It was only a single night oxymetry test, and I don't get nightly sleep data from my machine to measure the number of events...

[rested gal]

arkein, you're a smart cookie! Your treatment is in good hands.... YOURS! WTG!

[PhiloHypnos]

Many thanks for the compliment Rested Gal, an honour

I certainly couldn't have made such good progress without all of you wonderfully generous and caring individuals!

You have all really helped me get out of that depressive slump I found myself stuck in

All the best,
arkein

[birdshell]

Nice of you to compliment us, arkein. Thank you.

But, as hard as people on the forum may try--it is up to each of us to adjust our attitude, now, isn't it? Someday soon, you may be helping others to try for themselves. We are just paying back while we hopefully pay it forward, so to speak.

You have obviously done your own work and research as well. Look at your attempts to try various things and your knowledge of the supplements. Besides which, one shouldn't discount the effects of effective therapy!

Karen,
Who loves to help those who try

[PhiloHypnos]

Many thanks Karen for your compliments and wonderful support throughout

I am lucky to have found such generous and wise CPAP mentors!



Yesterday was great! I only got a little bit tired in the afternoon, but that was not because of sleep. Cognitively my brain was functioning so well! it was fantastic and I got a lot done.

The tiredness came from a very rigorous and complicated diet and exercise program I am following. It works like a charm but is very strenuous! I've lost about 17 Kg of bodyfat with it and gained approx 9-10 KG of muscle mass. Went from a UK size 42 to size 36 in three months. It is the most effective program I've ever used.

It works in cycles. 5 days high protein, low carb, moderate fat. 1 day high protein, very low carb, very low fat. 1 day eating only fruits. Then 5 days low fat, high protein, moderate carb. and a "cheat meal" of any "fattening food" you want to reward you on the last day.

These different phases switch your body to specific metabolic modes: first 5 days remove sugars and force your body to use the fat from your food and body for energy; the 5 first days also promote muscle growth with high protein; day six removes fat from the food altogether to get your body to burn only your body fat; the all-fruit day starves your body of both fat and proteins, so you continue to burn muscle fat, and you deplete your protein stores; and on the last 5 days you flood your body with protein, which your body avidly stores as muscle after being starved of it, and you replenish your glycogen stores thanks to renewed carb intake, which supports strenuous muscle building exercises and thus muscle growth even further.

This is accompanied by a very precise and strenuous program of weight and endurance training, 5 days a week. The types of exercises on each day are designed to suit the particular metabolic mode that corresponds best to the diet phase you are in: fat burning and muscle toning on the first 5 days; endurance on day 6; rest on the fruit day; muscle mass building for the last 5 days. You repeat that 12 day cycle three times, and end with 7 days of regular nutrition and strength training for "recovery". Then you start again until you reach your target bodyfat percentage. At this rate I'll be at 10% body fat (down from my original 35%) in about three to five months.

The idea of the program is to boost your metabolism into energy (fat) burning mode, and to increase muscle mass (which also boosts energy metabolism).

I got the program online, in e-book form. Its called the Metabolic Surge program, and I highly recommend it for anyone who can handle strenuous physical training. I don't know if I'm allowed to post a link here, as the e-book is sold for about $30. Would that be spam? I will happily send the link by PM to anyone who requests it. I can gladly say the 30$ I spent on the e-book was well worth it!

Yesterday was my all fruit day and the five preceding days are very tiring in terms of the workouts. I always feel physically exhausted on day 7 of the program cycle.

However, as I said, my sleep quality was really good, and cognitively I hadn't felt so sharp in ages!

and the same goes for today!

UPDATE:
DAY 7:
Same set-up as previous days.

- went to bed very late (Friday!). But I slept like a log. Got up after 6 hours.

- Sleep quality felt even better than yesterday. I remember no arousals. No pesky ticklish leaks to wake me up. Only a faint echo of past headache and brain fog remain. I am really feeling quite refreshed. Not perfect yet, but really better rested than ever. 88% there! I am very slightly drowsy because of sleeping so late, and probable need for an increase in pressure to at least 14. But before I made the changes, when I slept this late I felt terrible no matter how long I slept.

conclusions:
- The positive effects of the changes seem to have set in, providing my body and brain with much needed rest.
- It still feels like I need to increase the pressure, as I'm not at 100% yet.

Arkein is Happy

[rested gal]

Arkein is Happy