Sleapy head what ???????????

[this-sucks]

thanks for the ones sticking up and giveing me what i dont deaserve or eaned

the haters grudge wont think or read all my posts not excuses not i blame this but just look it over look all my posts over

i really think i let ot to much info after the problem i thought i coult trust this place now with the responses

im seeing the hundreds i have been to revel any true fact or disability they eat you like wolves

well i may have had a outburst i said what needed to be

i opened and told my secreats

so like above how mature are we in this forum ladies and gents

in life it would be over and solved by doing whatever the web it follows you judges you

so hey enjoy my to much info and enjoy the person and way you act in return to my post

thanks

[zoocrewphoto]

I suspect that filter issue may be causing some of the other problems. I have never heard of a filter being used within the mask or hose. So, that would be reducing the pressure, thus reducing the effect of therapy. And could easily be causing the problems that the machine and humidifier are having.

Also, spraying something inside the machine to clean it may also be causing machine issues. I have never seen any recommendations to clean *inside* the machine.

You are going to have a much harder time getting used to cpap AND having successful treatment if the machine is set up in a way to cause problems. If your current DME set you up this way, maybe you need to find a different DME or take your machine to the sleep doctor and have them look at your setup. There are special filters that you can use on the back, and maybe they need to order a different type of filter for you. But they also need to make sure that your machine is working correctly. If they aren't doing that, then you need to find somebody else who actually cares about your treatment working.

[DreamDiver]

...its far from fun i have unheard of fibro sensitive points up there and makes face red but its sealed i check and wash me and mask at night for good seal i can dig my finger between face and mask and not get air untill the seal breaks it hurt the ears but i grab the front and pump it a time or two that helps ...

My PCP is an internist who has seen a lot of emergency room action. He's pretty much seen it all, and has taken a more alternative approach than many other MD's, but without discarding his scientific background. One of the things he's found is that many people with fibro and fibro-like symptoms seem to respond well to this treatment. What I like about it is that it's just OTC supplements that are fairly innocuous, yet effective.

Like you, I used to have terrible unexplained pain just from the weight of a blanket on my feet, numbness and migraines, etc. Here's a post I made over two years ago about how I resolved most of what my doctor called 'fibromyalgia-like' symptoms. It's been two years since I did this protocol. I am no longer taking these supplements. In general, I'm taking fewer supplements than I have in years. I attribute this in good portion to getting my gut flora back in balance. I don't know if it would do the same for you, but I have to say, it worked for me. And I didn't have to pay for a bunch of heavy-handed expensive meds, a lot of which probably throw our bodies further out of whack. That said, I eat a lot less sugar than I used to. I eat a fair amount of vegetables, mostly cooked, though meat is in there as a condiment. And I eat no gluten.

You're on a lot of meds. That's a lot of juggling. If I were you, I'd find an internist to help me with this -- someone who would help me coordinate with all of my doctors together in the same room so all my meds were coordinated, hopefully reduced, and my doctors are all on the same page, because -- wow -- there's got to be a better way, eh? If you have a friend or family member who can act as your patient advocate to help you with this, it might be worth the effort.

I wish you sound sleep. Good night.

[mgaggie]

You're on a lot of meds. That's a lot of juggling. If I were you, I'd find an internist to help me with this -- someone who would help me coordinate with all of my doctors together in the same room so all my meds were coordinated, hopefully reduced, and my doctors are all on the same page, because -- wow -- there's got to be a better way, eh? If you have a friend or family member who can act as your patient advocate to help you with this, it might be worth the effort.

Excellent suggestion about the meds. Medications that help us with one thing can cause side effects that screw another part of your body. For example, some anti depressants can cause insomnia. So while they make you feel good, your sleep debt starts creeping up, which can then make the depression worse.

I also second the suggestion about finding an advocate. Not sure what happens in the US but here in Australia there is a public advocates organisation, which can be used if you can't find someone privately. Having someone speak up for you when you can't is very helpful.

[this-sucks]

thank you both even though no one has hears of my filter

it locks to the mas hose connect then hose to that there are smaller round on ebay

i have had a tec at the company suppler tell me it fine [no its free so he didnt just lie to sell]

doc says its fine one of the repair shops said its fine it dont leak and my pressure i can leave it or turn it up my problems up so pleas its passed no leaks and been oked by all the areas

i use wipes for blower area and spray if light and dont go into blower it is fine

and last time im telling this no not rude not snotty just last time one whats a dme

i went to my provider i got it from they fixed once where the records went missing then they fixed a second time and refuse a 3rd time they want cash or credit for the machine used while mine is in the shop

medicare covers the loaner they want cash for what medicare pays

after months or a year of fighting thats when the board blew and wouldn't activate the heater

fighting with medicare to original provider on and on finally medicare got the last one in my town nice helpful looked good then like my original provider o we need $300 a week again medicare covers

now the question switch providers that above

now there are nor providers for over a hundred miles the one close refuse say take it to original or are private and have the right to refuse me i just sent email to my doc but if medicare can only file fraud and can do anything or other actions

thank you so much for replies and answers you offered im almost sure its the machine even though tight the mask is sealed dont know why my fit life has to be tight i worked when i first got one differnt levels i got it quit not to tight then at night it started chatter etc so i had to tighten it good only air i feel from it is the vent


so thanks allot

im done i had the worst anxiety manic attack mixed over the stress of how long this has drug on 1 year or more with it getting new problems monthly or so

so fixed i quit buying used or new i cant eat some weeks my credit is so bad they paid me to take it back how can i buy $300 or more machine and more cost a humidifier

[mgaggie]

OP where do you live?

[Loreena]

In general, I'm taking fewer supplements than I have in years. I attribute this in good portion to getting my gut flora back in balance. I don't know if it would do the same for you, but I have to say, it worked for me.

DreamDiver can you expand on how you got your gut flora back in balance? I find this very interesting and I think a lot of us would definitely benefit from this. Thanks.

To the original poster--Hang in there, and I am really hoping that your cpap therapy gets better and that you start feeling better soon!

[DreamDiver]

... DreamDiver can you expand on how you got your gut flora back in balance? I find this very interesting and I think a lot of us would definitely benefit from this. Thanks. ...

My doc had a test done to count gut flora and fauna as seen in a specialized fecal analysis. They found hardly any beneficial bacteria and mostly detrimental fungi and bacteria. On this forum page, I talk about what he put me on to treat the problem. Another fecal study was done a year later, showing my gut flora were more normal. I won't pretend that things are perfect, but my bowel movements are better, my outlook on life is better, I'm not waking up merely from the weight of my sheets on my legs and feet any more. My limbs don't go numb very often any more during sleep. I'm not in as much pain, nor am I as sensitive to every little stimulus. I only wake up with a headache if I ate something the night before that's a migraine trigger, or if I get a storm headache. It's been a long time since a headache or limb pain actually woke me up out of my sleep in the middle of the night.

My doc says a lot of people who have fibro seem to benefit from this protocol. He said, "Hey, it's probiotics and enzymes... things your body needs anyway. You don't even need a prescription. Can it hurt to give it a try?" I was skeptical , but I did.

I didn't really change my eating habits or exercise habits that much. I already eat a fairly healthy diet with things like veggies and brown rice. I started eating more cabbage (at least a couple times a week, or Brussels sprouts, or sauerkraut), but that's a personal thing. I notice cabbage-family veggies helps keep me regular better than pills. I already was walking about 3 miles a day, between three and five times a week. It really seemed to be a gut thing for me.

It's easy to pass it off as anecdotal evidence, but one day, I realized the pain was pretty much gone. Not sure if that helps, but there you have it.

[this-sucks]

i may give that some thought they scoped my gut top and bottom enzymes fiber and others have found on my own experimenting are bad

enzyme pills or that goofy yogurt we wont discuss more than saying five min later omg fiber has been suggested that just makes me fart so bad i scare the cat with how loud they are

right now its a balance i put up with the narcs dry it out and its once a week of a lil more and its not like the past worring about food or public

i really appreciate the info and will talk to them about it i found last night what i forgot its me oops the high leaks since sleeping in the recliner i like to knock the one side clip off beats me cat or something

the rest may be machine my health my meds all like said probably make it the way it is the suggestions

about meds much appreciated but im at a balance that keeps what happened yesterday and other stuff in check

the rest who knows not up to me i just know before the meds i had the swat team at my house and treated the wife bad sorry but thats one area i wont touch i didnt like that person

thanks and any other suggestions are appreciated but at least it happened last night so i could remember it its not every night hec not every week and not sure how long i do have a habit of checking thats good and bad that habit may be knocking it off but resperonics changed the mask the clips are crap the old ones locked had to pull hard not a bump or even on there own they let loose

i cant thank you all for patience sticking with me and all the great ideas to try and the help
and a sorry to mgaggie i have already opened up to much said and shared to much already

name state the rest will be a mysteries unless someone is close and figures it out

thanks

[this-sucks]

and hey just wanted to say its not the typical umm yea sounds good crap i take each and every one serious and do plan on checking stuff suggested out with the exception of meds which i told why above

the way you live that way you manage every disorders medications life is what you get in return

i hav always drank ro or distilled water hypersensitive to taste

i met the love and best change of my life 10 years ago we found shes diabetic so i no longer eat processed food all home cooked diabetic based and pop one a week only caffeine my tea i wont stop my tea that and music relax and calm me

she mad med get better docs and is the reason for the meds counseling and changes i am always working on improving and finding answers bullheaded yea come off like i know it all try hard not to because no one knows it all wisdom is earned wisdom is learned wisdom is shared

i have never been violent mouthy yea but not violent im usually quiet laid back

when i was a response officer i was shot stabbed kicked in my jewels the works i only broke two bones on a person and on hospital

i am at a point i have learned and accepted what wont change and what its time to stop beating your head over the machine repairs etc is one does that mean i stop trying to fix me since i cant fix it hek no im sure there are plenty of changes even if the machine is to blame

i do what i preach advise whatever i have studied my meds my disorders am with a new better doc who we butt head but does what i ask runs silly tests etc a good one i practice that all the time staying ahead and like here trying though it seems not but i am trying to get better educated

thats why i thank the patience and those staying anyone in life gets to know me especially the age i am im all bark under im nice sweet kind giving easy going or at least thats what the wife makes me say in the mirror

i got the health and meds where i like docs shrinks counselors wife sleep lab hmm on sleep lab but i have no support on machine repairs or what im supposed to do other than sanitize it never in 3 years know the readouts or the importance doc never asked after two not a bad doc probably thought it was in check or how bad lab said its not worth checking only he knows

but im here im listing im trying o and the mask i have had except maybe 3 months of 3 years dry fit comfortable got home blew leaks everywhere from day one it has had to bet tight i sat up a couple nights trying to loose instant leaks seems not crushing rubber looks sealed blow out in the night finally tie the crap out of it grab and pump a few times pure suction

they switched last year to new version with changes a pile of crap sent allot back it has major lower strap lock problems

the old model it snapped hard and loud in the mourn had to push good to get it off new one bump or even on its own unlocks talked to my inside mane at the supplier he got me the filter yall never heard of free and other stuff he said he cant dig the old ones up anywhere

well i keep 2 or 3 of my masks for backups parts whatever the harness and clips wont fit the new my old is used to much to reuse im medicare i get everything including humid tanks have 3 of those i got spare hoses up the butt everything at monthly intervals and machines after 5 years im at the 3 year mark

so now its just focus on the chart how to read and ideas to better it maybe duct tape my mask on

[ems]

i do what i preach advise whatever i have studied my meds my disorders am with a new better doc who we butt head but does what i ask runs silly tests etc a good one i practice that all the time staying ahead and like here trying though it seems not but i am trying to get better educated

thats why i thank the patience and those staying anyone in life gets to know me especially the age i am im all bark under im nice sweet kind giving easy going or at least thats what the wife makes me say in the mirror

It does seem that you are trying to get educated! Read Robysue's threads again and again. She, along with Pugsy and a few others, have more knowledge than some doctors. I've been at this for two years now. I still learn something new every time I read one of their posts.

Oh, by the way, you have a very smart wife! Wise of her to suggest you look in the mirror to acknowledge yourself.

Be kind to yourself today, and keep reading and learning. You'll be glad you did.

[this-sucks]

thanks i need that even if on the other side of a pc

this is not whine or pity

i shouldn't have even been on here

i have been fight a provider for over a year about the machine then in the last 3 months it came to a head i cussed them out all the demands my honer my name they said i stole there loner i asked favors freebies and allot more the demanding money for repairs i had to pay for the temp machine

3 month of intense phone calls lot track of how many and the hours them 3 way with every provider even one 100 miles away

then the tipping point after all those calls stupid medicare finally calls the last shop left in my town that told me no and sure they will fix

12:30 to 2:30 i think 2 hours nice polite explained everything told me its the main board air pressure something then told me only records of one repair no it went in before my freeport provider left and the repair sheet had so much replaced it was rebuilt it said the shell too i couldn't tell i take care of my stuff never was damage or ways to tell if they did it

anyway long short bam they sucker punched behind my back and laid it on me like the original $300 a week for temp machine that medicare would cover

and im sorry all i had the worst combined attack of my life a day or so ago my head is still spinning just hazy hard to describe because i never had that big of one

so again to that use the site the member words cant cover my actions and no excuses just a fact i should never have been on

i just get so bored 8 hours till the wife then its just here i dont try to social anymore they just judge and everything i get online

so thanks for all the help and sticking around im logging of for a while i will learn and read those posts right now im tire and wore out on life and the crap o well laugh at yourself everyone else sure as hell is and lifes a joke

thanks have a great month

[Loreena]

That is great information, thanks! I'll definitely start eating more cabbage, brussel sprouts not so much. I bought some Culturelle yesterday, ran out of my UltraFlora (which I think is the best) and Wegmans didn't have it. Brown rice?--I found that interesting. I love sauerkraut but will probably have to buy a sauerkraut recipe book for that because I don't know how else to eat it 'cept on hot dogs and such. I'm glad you've been able to help your pain problems. Thanks again for the great post. I also liked your website very much.

... DreamDiver can you expand on how you got your gut flora back in balance? I find this very interesting and I think a lot of us would definitely benefit from this. Thanks. ...

My doc had a test done to count gut flora and fauna as seen in a specialized fecal analysis. They found hardly any beneficial bacteria and mostly detrimental fungi and bacteria. On this forum page, I talk about what he put me on to treat the problem. Another fecal study was done a year later, showing my gut flora were more normal. I won't pretend that things are perfect, but my bowel movements are better, my outlook on life is better, I'm not waking up merely from the weight of my sheets on my legs and feet any more. My limbs don't go numb very often any more during sleep. I'm not in as much pain, nor am I as sensitive to every little stimulus. I only wake up with a headache if I ate something the night before that's a migraine trigger, or if I get a storm headache. It's been a long time since a headache or limb pain actually woke me up out of my sleep in the middle of the night.

My doc says a lot of people who have fibro seem to benefit from this protocol. He said, "Hey, it's probiotics and enzymes... things your body needs anyway. You don't even need a prescription. Can it hurt to give it a try?" I was skeptical , but I did.

I didn't really change my eating habits or exercise habits that much. I already eat a fairly healthy diet with things like veggies and brown rice. I started eating more cabbage (at least a couple times a week, or Brussels sprouts, or sauerkraut), but that's a personal thing. I notice cabbage-family veggies helps keep me regular better than pills. I already was walking about 3 miles a day, between three and five times a week. It really seemed to be a gut thing for me.

It's easy to pass it off as anecdotal evidence, but one day, I realized the pain was pretty much gone. Not sure if that helps, but there you have it.

[DreamDiver]

That is great information, thanks! I'll definitely start eating more cabbage, brussel sprouts not so much. I bought some Culturelle yesterday, ran out of my UltraFlora (which I think is the best) and Wegmans didn't have it. Brown rice?--I found that interesting. I love sauerkraut but will probably have to buy a sauerkraut recipe book for that because I don't know how else to eat it 'cept on hot dogs and such. I'm glad you've been able to help your pain problems. Thanks again for the great post. I also liked your website very much.

Like I said, I'm eating more cabbage than I used to, but that's basically a decent serving twice or more a week in various forms. Kim Chi may be another cabbage-based food that some people may enjoy. It's not like I'm on a cabbage diet or something. I just notice that when I have a few servings weekly, my bowels move more regularly. This is purely anecdotal observation on my part, so it may be different for other people. Cabbage is in the crucifer or "mustard" family of plants.* It also includes plants like mustard greens, broccoli, cauliflower, kale, collards, and turnip greens. I think I'd eat more beets too (not a crucifer) if they weren't so darned expensive.

The products made by Integrative Therapeutics are superior to most brands in my non-professional user-based opinion. IT's Pro-Flora pearls don't release their contents until they're in the lower gut where they're most useful. I've tried a lot of probiotics: liquid forms, pills, chewables... Most of them are fairly useless for me. That Activia stuff that Jamie Lee Curtis hawks is awful. It actually makes my gut feel like someone went through with a bottle brush. I haven't tried Culturelle, or ProFlora, but if it works for you that's great.

*(Also known as the "Brassicaceae" -- wait five minutes in the botanical sciences and the scientific name of any plant will change.)

[Loreena]

The products made by Integrative Therapeutics are superior to most brands in my non-professional user-based opinion. IT's Pro-Flora pearls don't release their contents until they're in the lower gut where they're most useful.

Thanks for all the info. I especially appreciate the Pro-Flora pearls suggestion. I'm definitely looking into that!