Aroma Therapy with CPAP - Is it helping?

[Snoredog]

[quote="Nodzy"]Yesterday, Saturday, I received the Pur-Sleep aroma therapy trial pack from Bret. It arrived quickly.

Last night I tried the Clear fragrance.. Not that I didn't expect a pleasant deepening of my sleep. But it appears that it was very beneficial in helping me to get to deeper sleep, and achieve it multiple times after slipping back from it.

I still had tossing and turning, and only one mask-off episode. The Comfort Curve headgear quick-release button was tripped by my head pressure on the pillow. I quickly woke to latch and reseat the headgear and mask on my face.

Usually I have one to four mask-off episodes during a night for minutes to hours each from me unconsciously pulling the mask off. This time I woke as soon as the latch released and the headgear slipped position. That is encouraging, to know that I was so responsive from what appeared to have been a comfortable sleep -- which is very unusual for me.

My tossing and turning, in large part, relates to persistant pain from neuropathy and fibromyalgia, and apparently from low SPO2 (oxygen saturation) level at times throughout my sleep which causes me to thrust for oxygen.

Sadly, I was so exhausted when I went to bed, and so thrilled to be trying the Pur-Sleep, that I forgot to reinstall the card in the M-series A-Flex. Yes, that was not a bright omission from the regimen.

I will be trying the Clear fragrance again tonight, with the card in the unit. Though, I do want to try all of the fragrances over time to see which, despite my awake preference, yields the best sleep benefit for me. I'm sure that of the nine fragrances at least two or three will be preferrable to me for the sleep benefit of aroma therapy.

More to come......

[Nodzy]

4th night with the Clear aroma:

Nothing new -- the aroma therapy added to the XPAP regimen works. It is not a cure, but offers a welcome element that the brain translates into comfort and yields better tolerance of the mask and pressured air.

During the night I experienced no mask-off episodes, no extended large leaks, and managed to rest rather well for a total of 7-hours and 2-minutes with the mask on.

Despite what appears on my Encore Pro charts as a compliant and peaceful night, I still woke with a headache this morning. On a 10-scale I would rate this one as a 3-pain. Normally I would wake with a 5 to 8-pain, and movement and activities would dictate the pain intensity throughout a day. The persistent headache problems predate my xPAP therapy by decades.

This headache could be seasonal allergy related, as this is a year I have experienced some occasional low to moderate allergen responses. Normally, I suffer allergen responses during about one in five years. Rarely do I suffer the intensity of allergies as most folks do -- they don't alter my life drastically. I mean, thus far, they haven't interferred too much.

Overall, I am still amazed and very pleased with the Clear aroma added to my therapy. Three more nights of using the Clear, and then a switch to the Peace fragrance. At some point I'll start combining the EO's to try and find what is truly best for my needs.

Bret, I certainly undertsand about most men shunning such "yup'ster" and "sissy" things. Many people choose to live in the dark ages of "macho male" and "helpless female" sterotypes. While I am obviously far from being a whimp, I'm a broad-minded (no pun intended) masculine guy who is realistic about the gendered labels being just that... psychological labels.

Ok, I have to say it... Yes, I will do many things within reason to achieve success in remedying my health dilemmas. No, I will not shave my legs and wear feminine clothing to achieve that success. Ok, now I need another coffee.

[Nodzy]

Hello Snoredog,

Yes, I have been treated by doctors for neuropathy and fibromyalgia. The medications list passed the tolerance of memory about four years ago. Over two years ago I weaned myself from all the medications except two simple blood pressure medications, and my OTC products. Some you had mentioned are included in my regimen.... aspirin (two 81mg every 4 to 6-hours), C, B6, multivitamin, E, Milk Thistle, Kelp with Calcium+D and ACV twice daily at between 1-teaspoon to 1-tabelspoon.

My neuropathy (all extremities and torso) and fibromyalgia were gauged to be severe. I was in CHF for well over 5-years with major full-body edema, persistent bruised feeling around the heart area from the edema, 24-7 9-pain non-stop pain from the hips to the toes, and a multitude of other symptoms.

One of the best things I did at that time was to stop taking all the medications they heaped upon me. I bought a nice 24-speed bike and started riding -- the first days I couldn't get past 1000-feet on level ground without exhaustion. Within months I had built up my ability to ride miles at a time. Though, I would be thoroughly exhausted after each ride -- and I forced myself to peddle even once I was exhausted. I could feel toxins being excreted. That, plus willpower, music, meditation and prayer helped me to beat the CHF and passing out multiple times daily. It was rough, scary... and still is iffy as to whether I can maintain my partial recovery from being so close to death between 1997 and 2001.

But... now I know that OSA was a, or the, top player in my failed health. OSA was not a result of the other maladies as the doctors had told me it was. In understanding the order of the maladies, and learning to understand the intricacies of OSA, I'm finding even more relief and recovery, however slow. I beat Type-2 Diabetes and now control blood sugar with food alone. My blood prressure medication needs are a quarter of what they were several years ago. xPAP therapy compliance, aroma therapy, understanding that part of my failed compliance was mouth breathing and mouth venting are helping me to climb further up from the pit of peripheral ailments and feeling miserable during every minute I breathed.

I am not healed, and will never be. But, I'm now starting to feel like I might possibly live to enjoy a vibrant 90 to 95th birthday. Of course, I pump myself up with each small success in therapy. I also thrill at reading on the board of the successes that others achieve.

I've even started to really like my A-FLEX unit, and refer to it as my sleep-partner. Sad, of course. But being very comfortable with the therapy and its peripherals means that I no longer dread the mask, the pressured air, the sound, the feel or the knowledge that I'm on a lesser form of life support while still being independant and somewhat vibrant. I no longer cringe at the thought of admitting to anyone that I am hooked on having a hose attached to my face every night. In fact, I smile about it... and relate it an upbeat manner.

Obviously, that narrows the field of potentially eligble mates... considering that I don't really relish being alone for the duration of my time here. But,
the xPAP therapy I must have... a mate would just be icing on life. And I can handle cake without icing... if I have to. LOLOL...

So, to end this rambling missive... the neuropathy and fibromyalgia are not medication treated at this time. Aspirin therapy has helped to a small degree. xPAP therapy has helped to a larger degree, despite that I'm only marginally successful due to soon-to-be-remedied mouth breathing and venting, and neuropathy pain. I strongly suspicion that better compliance, better oxygenation on a nightly basis... will result in far less pain. As it is, I already feel some differences in the pain levels being generally lower. I don't expect the pain to ever disappear, but even if the levels were halved I would be thrilled.

You have my sincere appreciation for the effort, energy and time you devote to helping me and so many others here.

[Nodzy]

5th night with the Clear aroma:

Again, there is nothing new to note. Despite a highly stressful week, and a several-hour mask-off epiosde last night, I managed another night of compliance with 5-hours and 10-minutes of mask-on time. Overall, I don't feel too bad today, based on my former morning condition just months ago. I don't have a headache, but a dull fuzziness is there.

I should add that yesterday I was using Clorox Cleanup, and despite having great ventilation in the area, managed to inhale the fumes several times. That product always has a major negative effect on me for hours after inhalation of the fumes. That could have a part in my fitful night.

I strongly believe that the EO aromas can have a major impact in bettering sleep quality and duration for many people. It certainly appears to be helping me lower the number of mask-off episodes I experience per night. And my large leak numbers are edging downward.

Though I am impressed with the aroma therapy results thus far, being on the aromas for a straight 60-days to 90-days, and finding the aroma or combination of them that prove best for me, will really tell the story of their effectiveness with a difficult to treat therapy patient.

[Nodzy]

6th night with the Clear aroma:

What can I say? I had another compliance night, despite the usual neuropathy ache and pain, and mouth breathing and tunnel venting. Six-hours and 5-minutes of mask-on time isn't perfect, but it is far better than my pre-cpaptalk.com patterns.

The first 3-hours of sleep were excellent in all respects. Then my leak numbers climbed, with over 100-minutes of large leak. But I finished the sleep with a solid 80-minutes of great sleep, and just a little above designed mask vent.

Overall, greatly improved compliance and more than doubling to tripling the quantity of good sleep hours per night speaks well of Pur-Sleep EO aromas being added to my therapy

Addressing my mouth breathing and venting will begin this weekend. Maybe I can find a combination that will yield even more effective sleep and better numbers. With all of the helpful and proven ideas presented to me on the board, it's just a matter of finding the tolerance fit for me. I sure hope the Hybrid mask and Ruby chin strap arrive today.

Happy hosing!!

[SleepGuy]

Nodzy, I'm very pleased! It's amazing what a difference sleep makes in a life. I'm very impressed that you're no longer removing your mask in your sleep. No doubt you'll be able to figure out the latest leak issues and--you'll be well on your way to complete compliance.

I find it interesting how compliance is defined. In one medical study I read, doctors defined compliance as being a minimum of 5 hours a night for 5 nights a week. Even then, average "compliance" rates were extremely low. According to that standard you're doing great.

SG

[Windfall]

I received the Pur-Sleep trial kit from Bret last Thursday. Every night since has been a vast improvement over months of waking up repeatedly, battling with hoses and masks. I sleep, I dream, and if I wake up I quickly go back to sleep. YIPPPEEEEE!

After the first night (a wonderful success) I was so jazzed that I decided I should try Pur-Sleep for the entire week before commenting. After all, what if this was a fluke?

So, it's now been a week. I'm delighted to say this is no fluke. I've had such a great week sleeping that I've had a great week awake too! Because I'm able to sleep and dream I feel better than I have in months (heart attack in February 2007, diagnosed with OSA shortly there after). I'm now getting quality sleep! This means much less fear and frustration because CPAP therapy is a MUST for me - OSA (very low O2 levels) was a contributing factor.

My overall favorite is Spice, followed by Peace then Clear. I rotated the scents each day. Spice brings back very happy memories of times that I hadn't thought of in years. What works best for me is placing the Pur-Sleep diffuser slightly behind and to the side of the CPAP machine. The scents are pleasant and do not take over the entire room/house.

The other good news is this may be the end of my personal "mask madness". My leak rate is much improved because I'm not tossing and turning trying to get comfortable to go back to sleep. I've been using the Ultra Mirage and Quattro this week with great success - keeping a mask on, not ripping it off to throw across the room or just waking up without it on. I'm a mouth breather and have tried every full face mask my DME normally offers plus a couple special orders with specific prescriptions.

Bret, THANK YOU THANK YOU THANK YOU. Pur-Sleep has absolutely made a positive difference in my life!!! I remain very grateful for your efforts.

[Nodzy]

7th night with Clear aroma - with a drop of Spice aroma:

I can't say too much about the aroma therapy last night. I had switched to a Hybrid mask yesterday and had a disconcerting first experience with it during my 3-hour trial run nap.

Last night I raised the pressures to offset what I suspicioned about that mask with A-FLEX at my normally moderate pressures - which, good or bad, seemed to help my tolerance of the new mask and my total absence of events during sleep.

I did sleep well overall, and had no unintended mask-off episodes. And after each waking managed to get right back to sleep.

[Steelknee]

Been using aromas in my cold water humidifier for a number of years. Don't use them every night though but I do notice a modest imrovement in my sleep when I do.

Try Eucalyptus if you have a mild head cold.

While aromas are nice nothing improves your sleep like getting lots of exercise!

[Windfall]

Exercise helps but in my experience it's not a guarantee of good sleep. I went to Phase II Cardiac Rehab 3 times per week for 12 weeks, then joined a gym. I now work out 3 to 4 times per week (one session with a trainer) even when traveling.

I was tired enough to fall asleep in front of the TV, but was not able to sleep longer than 2 to 3 hour bursts. I was not able to easily go back to sleep. With Pur-Sleep I've slept through whole nights with my mask on. I feel more relaxed since using the oils, and am more at ease with the therapy. I have more confidence in my ability to be compliant with CPAP, which helps even more.

Whether Pur-Sleep is the cause or the catalyst for this turn of events isn't important to me. I'm just very grateful and happy with the positive impact.

[Nodzy]

8th night - 1st night with the EO Spice aroma:

The Spice aroma, though I thought I wouldn't like it, was really great. Used along with the new Hybrid mask which is taking some getting used to, and the machine switched from A-FLEX to Auto C-FLEX, yielded a decent night of sleep.

It wasn't one of my better nights, but the Hybrid mask is offensive to me by feel of so much headgear and mask-seal tight against my face and head. That causes some restlessness while I am in sleep -- excessive movement.

Still, I doubt that I could tolerate the new mask as well without the EO aroma therapy adding the other sensory dimension to the experience.

The Pur-Sleep: It gives every indication that even an aroma that may not be so pleasing awake and vertical may yieled great benefit if used with xPAP while sleeping.
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As for exercise: It's well known that moderate exercise several hours before sleep can benefit the diurnal cycle in many people much of the time.

Now I just need a trampoline and four spotters, and four more people to keep bouncing me up and down on it -- I'm sure they'll sleep well afterward.

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, auto

[Nodzy]

9th night - 2nd night with the EO Spice aroma:

Is it common to not remember sleeping? I can't think of the last time that I went to bed and did not remember sleeping.

While I wasn't really fond of the Spice EO aroma while awake and vertical, it seems to have a very beneficial impact on my sleep.

Of course, the Hybrid mask, with chin-cup removed, and the machine switched from A-FLEX to Auto C-FLEX has much to do with that good night of sleep. Though, I do not remember waking at all until one of my two cats walked on me several times at about 6:20 a.m., in an attempt to get me to serve breakfast early. I fell right back to sleep and rested solid until 8:10 a.m.

The Hybrid mask massive design vent LPM was supposedly remedied quietly by Innomed. Innomed is sending me a revised-frame for the Hybrid mask that is supposed to address the massive design vent LPM downward to make the mask suitable for use with the Respironics M-Series Auto units and particularly the Auto A-Flex.

Even with the Hybrid mask headgear having more surface-to-head contact, and the mask seal having more surface-to-face contact, all of which I find to be repulsive, I had a great night of sleep. That is, as compared to my norm for almost every night for the previous 5-years on xPAP therapy. And certainly better than during my multiple decades of being miserable with undiagnosed apnea.

I have no doubt that without the Pur-Sleep EO's I would still be waking every few minutes and pulling the mask off in my sleep multiple times per night.

At this juncture I would say that my sleep has improved about 30-40% overall, but is still far from what is needed for best health. Considering the misery I lived in even in xPAP therapy for the past 5-years, and prior to joining this board and finding answers and taking charge of my own health, even a 30-40% improvement is like candy.

Some things of note are: I have fewer days of waking with headaches, most headaches now are of lesser severity and duration, I have more morning energy and all-day energy, fewer nod sessions when I sit during the day, less head-fog when waking, and I am getting a bit more of the important matters handled on each day now. My thought processes are improving slowly, but noticeably.

[Guest]

I tried them and ended up with stopped up nasal passages. Tried again a couple of weeks later and same closed up nasla passages. Mentioned it to my pulmonary doctor and his response was "Are you nuts, putting an unknoiwn chemical into your lungs?". Needless to say I won't try a third time.

[Nodzy]

I tried them and ended up with stopped up nasal passages. Tried again a couple of weeks later and same closed up nasla passages. Mentioned it to my pulmonary doctor and his response was "Are you nuts, putting an unknoiwn chemical into your lungs?". Needless to say I won't try a third time.

I couldn't agree more with you, and your "pulmonary doctor."

But generally we use, to name a scant few, various fragrance-laden kitchen and bathroom cleaners, various fragrance-laden dishwashing and laundry liquids, various room, home and vehicle air fresheners, and all manner of multiple thousands of other products with supposedly safe aromas.

If you smell the product aroma, you're also inhaling some of the chemicals in the products... even the cleaning agents.

Your skin is the largest organ of your body. It breathes constantly, and lets molecules pass in and out through it. Every chemical whether liquid, gel, gaseous, powder or solid that touches your skin, has the immediate potential to be inside of your body through the airway or skin.

Most nasty chemicals enter the body through the skin and the airway. Of course, we eat and drink many of those nasty chemical food additives, and thousands of other traces of various toxic chemicals (that are not listed on the packaging labels) in our foods and beverages.

I won't even detail makeup, what goes into making lipsticks, eye liners, skin creams, skin cleansers and all of the "beautifying" products. But, if you knew the exact ingredients and processes of manufacture you may cringe at using or wearing some of those products.

Almost every personal enhancement product has added fragrances, or adjusted aromas to make them pleasing to most people.

That you personally can't use EO's in sleep therapy, is akin to me being MSG reactive -- too much MSG and I can be sent into frightening chest and artery pain. I still eat foods with MSG, but in quantity and frequency moderation. Of course, one doctor told me that MSG is deadly. For some people that could be very true. For me, MSG in small to moderate quantities is troublesome -- but I won't stop consuming all foods I enjoy just because MSG is, or may be, hidden in an ingredient in them.

Your doctor is right, that you should be careful. But I seriously doubt that Pur-Sleep Essential Oil aromas pose any more risk to the vast majority of people, when used as recommended, than, say, the aromas of homemade pies baking and that "eat me while I'm warm" fragrance wafting though a home.

I wish you luck and hope you achieve the best consistent sleep possible in your therapy.

[barbpsleep]

While I wish I could say that use of pur-sleep has helped me sleep through the night - oh you lucky folks for whom this is true - I do find it pleasant enough that I ordered 4 additional scents. I just received my order for creme, comfort, deep, and fresh. I'm looking forward to experimenting.

The only problem I've had with the product is that it's hard to control the number of drops that drip out on the pad. Several times, 3 drops have dripped out before I can tilt the bottle. The easy solution is to move the pad a bit further from the intake. But this does affect my ability to combine scent, since I don't want to use too much. I was concerned that my husband would complain about the scents, since he's not a fan of scents in general and sometimes has allergic reactions to perfumes. He hasn't said anything positive, but he hasn't been bothered either so that's a good thing.