Extremely Painful Journey To Happier Ending

[sleeping beauty guy]

Hi there

I'm just testing to see if once I've posted my story that I can return to edit it and for how long.

Vern

Well I can find and return to my draft at least.

My story.

I live in Vancouver BC, born and raised here in fact.

I am now 64 years old.

I had a pacemaker installed in Dec 2005 with two leads, the 3rd lead will be done in a few months.

In the summer of 2010 I was tested for breathing at our St Pauls Hospital.

I blew into a hose setup to see how powerful my lungs were.

Part 2 was to use a puffer and repeat the blowing portion again.

I returned to see a doctor a few days later and he referred me to the Univercity of British Columbia's Sleep Disorder Clinic.

Update, I wasn't aware that I even had a serious breathing problem, from poor sleeping habits at least, before all this.

I was thinking that I had smoked for over 25 years and quit in early 1983.

My feeling was that I was being secretly tested for lung cancer and not being told about this, so as to not upset me.

The doctor at UBC arranged for me to sleep over at their clinic one sunday night with no external breathing assistance.

In the morning he looked at the very scientific end results and said that I was really sick.

So sick in fact that I stopped breathing over 300 times during the night.

I only slept about 5 hours and so I stopped breathing at least once every minute.

If I can say that I had maybe 30+/- wires stuck to my skin from head to toe.

The sensitivity was such that you can close your eyes and look left or right and they know it.

I was nervous that they might be able to see my dreams but I was told no, thank goodness, I don't share those with anyone.

I was written a prescription and went to our local IRS office and met Monica.

I was was placed on a trial of 2 months with a large fullface mask and compressor unit complete with a humidfier.

The unit turned on and I saw a 5 light up on the top of the unit.

That night I slept continuous and deep for about 10 hours.

When I woke up I really felt refreshed and alive.

Things kinda went downhill from there.

Some nights I would slide my finger under the mask to scratch a tickle, on my cheek, nose or lips.

Some nights this was a very common occurance many times during the night.

Sometimes I would rip the mask off my face and rub my hands up and down until I was probably close to bleeding.

I would tell the doctor and Monica with no feedback to help me.

The pressure was changed and no differences were apparent to me.

As the 2 month trial period was coming to an end I wished that I was dead rather than having a few broken hours of sleep a night.

I was at my ropes end and decided that I needed something to keep the mask off my skin or something similar.

I went to a local actor's supply house for a bottle of liquid latex makep to coat the mask or my skin.

It was about $10.00 CAD for about 1/4 ounce bottle.

The mask's seal is made of silicone with no gel filling.

First the latex will not stick to the silicone.

Next I thought about coating my skin under the mask.

The bottle had an expiry date and was 3/4 dried up.

It also would have meant coating my face and peeling it ot off and throwing it all away each day.

That idea fizzled.

I was loaned a nose mask which lays over the top of the head and happily is not so much in ones face.

The first night, after an hour or two, I ripped it off as my nose was burning inside and around the perimeter as well.

Of course I thought it was me again.

I coated the silicone cones that fit in your nose.

That lasted until I picked the mask up and the latex fell off.

Not one to give up without a fight, I coated my entire nose inside and out.

Unfortunatedly the perimeter and interior would not let the latex dry, probably too warm and moist.

I went a bought a package of, finger cots, they are small and appear to look like latex condoms for Lehpracons.

I tried to roll two over the nose insert section and put a small hole in them for me to breath through.

Of course, just as with my life experiences with condoms, the holes enlarged to full size, immediately.

On the second night the perimeter of my nose and inside where the silicxone touched the skin I was cut and bleeding.

That attempt fizzled again.

Returned the nose mask.

Back to the fullface mask again.

Found out I have the worst case of silicone alergy in the doctors 30 years of experience.

So far I am the sickest and most alergic patient on record here.

Very depressed and tired I thought, what could I use to isolate the fullface mask from my face again.

I wrapped two layers of sandwich wrap around my head and pocked a hole to breath through.

In a few minutes the hole was as large as the mask.

Back to the drawing board.

Monica found a website that sells material mask gaskets sets, a trial of one week for about $7.00.

I received about 7 mask pieces and one forehead piece.

I installed the pieces as per instructions and they lasted less that 10 minutes, lesson learned.

Monica brought me in a special nose mask but it is entirely silicone and I decided to decline a trial with it.

I was really desperate and willing to try anything.

I tried a linen table towel laying it down my face and breathing through the material.

A light went on upstairs and I tried using a cotton dishcloth that I had bought 4 for $1.00 from our local dollar store.

Much smaller than the table cloth at least.

I woke up rather more rested the next morning, at least I was on the right track now.

A word of caution though, wash the cloths before using them new.

When I woke up that first morning my eyes, nose mouth, lips and mouth was coated with small pieces of lint.

I used it again for a few more nights after washing it.

I told my daughter and she handed me a few old but never used, ugly pattern linen table napkins.

It now costs less than $5.00 for a lifetime supply of linen table napkins in any pattern.

I have not cut and reinforced any breathing holes yet, the material is very porous on its own.

With these final material solutions and turning my humidifer off, I sleep at least 13 out of 14 nights without

farting sounds or itchiness.

An inexpensive solution to an experiment from hell, for me at least.

I also lost 5 pounds recently, I hope that is because of this mask alergy issue being settled.

I hope that my lengthly story can help someone find affordable relief.

Vern from Vancouver

[sleeping beauty guy]

Hi again

I forgot to mention that I also tried a woman's facial mask.

For you men.

This is a gel that you apply over your skin and in about 20 minutes or so you have a thin flexible film on your skin.

You peel off this film and your skin feels real fresh again.

Unfortunately it did not dry thick enough inside my nose to help me with the nose mask.

The clear sandwich wrapper that I used for a few minutes was Saran Wrap.

I missed out telling you all a very important issue that has surfaced recently, as in a month or so ago.

I wake up with a feeling that my head is much clearer and that I almost have a new brain.

I can't think any better but it does feel like I have a re-energized brain, sort of like the energizer bunny.

Must be improved oxygenation.

I bounce out of bed most every morning, rather than dragging myself out.

CPAP was started about Oct 2010 and it is now almost May 1st 2011, so 7 - 8 months of usuage and

a lot patience and perseverance was needed.

I know of a much younger man who has two CPAP machines, he tried them each for a month or two, now they are sitting in his closet.

Vern from Vancouver

[purple]

I would wonder what would happen if you, knowing what mask and size you like (other than it being made with silicon), wrote to the manufacturer of that mask and asked: If they could cast you a mask from an alternative material, like maybe teflon, or teflon reinforced with something here and there. Of course for free to you, as I doubt Canadian Health care would pay for such an experiment, and of course, you are a being a guinea pig for the manufacturer anyway.

I have to believe that the mask builders are always tinkering with what they do anyway. Nothing ventured, nothing gained.

[Sireneh]

Thank you for sharing your story, Vern from Vancouver. I enjoyed reading it very much. It read a little like "Breakfast of Champions" by Kurt Vonnegut Jr.

Your persistence is impressive. I'm so glad you stuck with it and found a solution that works for you.

[sleeping beauty guy]

Hi Purple and Sireneh

Thank you both for your comments.

"Breafast of Champions", sure had me laughing.

When I first went to IRS, Monica, told me it takes about 2 - 3 months of dedicated usuage to feel the full benefit of CPAP system.

It does no good just sitting in the closet.

Many years ago, Consumer Report's, did a testing of men's condoms.

I read the article with a grain of salt as I haven't used condoms in a long while, so it was not as important to me, so I thought.

I believe that men have broken a lot of latex condoms in use.

Consumer's included something I had never heard of before, polypropylene condoms.

It raised my eyebrows as I was thinking of the breakage factor.

It may have been mentioned, but, I do not remember why they were being made.

Definitely not a large selection as I remember.

The lack of senstivity was mentioned against the men using polypropylene condoms.

I have noticed that medical offices use vinyl or nitrile gloves.

My understanding is that doctors using non-latex gloves in surgery do no have the same sensitivity during surgery than with using latex.

I was thinking a few months back of emailing the mask manufacturer and enquiring about their research into using polypropylene seals .

My mask has a popout silicone seal which can be replaced within a minute or two.

I will also suggest Purples material.

I was feeling like a lepper with no one else in the world with this alergy.

When I was searching out on the internet for support, I found this site by good fortune.

I am returning again to add this comment, type in CPAP forum and 775+ K hits pop up.

When I first browsed for the silicone alergy information, silicone/latex togther kept popping up.

Adding to this topic again.

When I was referred to an appointment, I was told it was a 3 - 6 months waiting list they are so busy.

About 10 days later I had my appointment.

Several times I have been fast-tracked, I must be really sick.

I went to another topic a few minutes ago and read some very interesting commentary regarding having an unsupportive partner

and also sexual interest with a CPAP system.

I feel like, Darth Vader, with my full face mask on.

I don't feel particularly aroused with the mask and table napkin on, I can't see much, the hose hanging down the front of me,

the compressor humming away, I don't know about you.

That is me looking in a mirror, heaven knows if I had a partner.

Can you imagine trying to have a quicky affair, foreplay and then on goes the mask.

Scare the hell out of the woman, never saw her exit so fast. LOL

That's the way we do it in Vancouver. LOL



Vern from Vancouver

[Guest]

Hi again

Over 160 viewers and no comment regarding similar silicone alergy issues.

Vern from Vancouver

[cflame1]

have you tried a sleepweaver mask... it's cloth... not silicone.

[LSAT]

Hi again

Over 160 viewers and no comment regarding similar silicone alergy issues.

Vern from Vancouver

Try mask liners... http://www.remzzzs.com/Default.asp

[roster]

Hi again

Over 160 viewers and no comment regarding similar silicone alergy issues.

Vern from Vancouver

There is nothing in what you have posted to this point about your experience with masks to indicate that you have a silicone allergy. It seems like typical problems that patients have with irritation from the mask.

Silicone allergy is extremely rare.

Found out I have the worst case of silicone alergy in the doctors 30 years of experience.

So far I am the sickest and most alergic patient on record here.

How did the doctor determine that you indeed have a silicone allergy?

[chunkyfrog]

Rooster has a point.
If the doctor did not do a standard allergy test,
you could confirm your allergy by taping a small piece of the cushion or pillow material to another part of the body;
for example the upper arm--in the daytime; and keep an eye on it over a period of time.
I would check for inflammation, etc. and remove if pain and redness appear.
Silicone allergy is so very rare, I'm surprised you could tolerate liquid latex, but not silicone.

[Guest]

Hi again

I re-read my first writeup and see I made an error or two.

When I used the nose mask I tried using the woman's mask, not silicone.

I actually never had an opportunity to use the latex on my skin other than coat the nostril portion of the mask, which fell off.

The first night was quite a burning sensation and I ended up sleeping, poorly without a mask.

The next night I coated the nostril pieces with the latex, which also fell off.

I bought the latex finger cots and cut a 1/8" diameter hole in the end to breath through.

I had difficulty rolling the cot onto each tip and ended up with the entire cot wide open.

The nose mask was by far a better choice for it's light weight and freedom of facial movement.

The last night I used the nose mask, my nostril and inner nose area was burning and now cracked and bleeding.

We are not talking of a slight discomfort or slight pain.

I was in pain, my comment was, it felt like a lit cigarette was shoved up my nose.

There was no latex contact to my face, just the hard clear plastic and the silicone seal.

It has been mentioned several times here where I could obtain by mailorder fiber pieces, that was my source.

I wrote the few minute trial off as, what else can I try and the small expense, as a lesson learned.

I explained to Monica that the trial package would be great for a display mannequin or a corpse.

My meaning was, no warmth, moisture or skin oils and no facial movement.

I wasn't trying to be a smart ass, just an honest comparison.

Yesterday I saw a write-up here regarding wearing pantyhose, on ones head, not body.

I'll follow that topic a little more as it also maybe another material of choice, though not as colourful as my ugly table napkins.

I would need to put on a pair of sunglasses and hat to disquise myself if I went to buy them. LOL

Vern from Vancouver

[SleepingUgly]

No one else was distracted from the main point of the story by thoughts such as, "He doesn't share his dreams with anyone, but is telling us about his experience with condoms?"

[NightMonkey]

I was too distracted by the very strange writing style of Vern the Vancouverite.

[Guest]

Hi again

My point of mentioning condoms here was in hopes that someone here was familiar with polypropylene.

I assumed lately that polypropylene may be hypo allergenic or ?

Because of the personnal nature of that product I cannot be the only person that has heard of it.

With the issue of latex alergies is that possibly the reason for them being manufactured.

I haven't researched polypropylene but it was what I was thinking of the manufacturers using rather than silicone.

My alergy has not been an issue since I went through all this adventure and having relief now for several months.

There has been 2 suggested alternate materials here and as I also mentioned reading about pantyhose.

Perhaps this will also be a no-no topic being as how I am a man, rather than a woman.

After all the pain and discomfort I've been through, I will still search out and broadcast whatever

forms of relief I find for anyone interested in reading about it.

Availability and affordablity of relief is very important to a lot of people.

Until something better comes along, with experiments or members advice, it's table napkins for me.

Vern from Vancouver

[SleepingUgly]

My point of mentioning condoms here was in hopes that someone here was familiar with polypropylene.

No, but I'm familiar with the lamb skin condoms, although I don't think that's going to help you.

I assumed lately that polypropylene may be hypo allergenic or ?

Because of the personnal nature of that product I cannot be the only person that has heard of it.

Have you considered a trial with a silicone lubricated condom? I'm pretty sure that will be a good test of whether you have a silicone allergy, as well as a test of this:

I don't feel particularly aroused with the mask and table napkin on, I can't see much, the hose hanging down the front of me,

the compressor humming away, I don't know about you.

That is me looking in a mirror, heaven knows if I had a partner.

Can you imagine trying to have a quicky affair, foreplay and then on goes the mask.

Scare the hell out of the woman, never saw her exit so fast. LOL

Perhaps Monica would be up for some experimentation? I have a feeling you have a bit of a crush on her...