Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cpap--sleep Apnea Machine

Judyin Philly

By Judyin Philly
in Related Issues & Disorders

Recommended Posts

Judyin Philly Enthusiast
Judyin Philly
Posted

Hi folks

I have used the old mask that covers the whole face and HATED IT but it worked.

I've bought (with my own $$$) this new one.

Loved it in the beginning (after 3 months) but now getting the 'pokes in the back' back from dh again.

He says I'm snoring again or the mask has moved and blowing cold air on him, or making loud noises.

He's having to go to the couch again as he says I don't even wake up to fix the mask.

This past week I've been so exhausted and 'foggy' like before I was dx'd.

Last nite I readjusted the whole thing and woke up refreshed FINALLY.

dh still in bed in the am:)

Does anyone else out there have celiac and sleep apnea? What masks are you using?

Like this style so much better didn't want to give it up.

Wonder if the straps stretch or the nose pillows stretch?

Any ideas other there? :huh:

Judy in Philly

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


debbiewil Rookie
debbiewil
Posted

Hi Judy,

Yes, I have apnea and celiac. I also use the Mirage Swift pillows, mostly because they come with the three different size pillows and can be worn with glasses. The headbands do stretch a bit after a while, and need to be readjusted on a regular basis. For me, I like to keep the band in the back as tight as possible, and the one that goes over the head loose. That seems to keep the pillows properly positioned for me, without being uncomfortable. I wash the headband in hot water, which seems to tighten it back up again slightly when it dries, so I don't have to adjust it as much.

Debbie

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author
I wash the headband in hot water, which seems to tighten it back up again slightly when it dries, so I don't have to adjust it as much.

Debbie

Thanks so much for writting Debbie. I'm surprised that more haven't written but am going to do a re post --but word it differently.

I was dissapointed that last nite it happend again and i moved to the guest room without the mask b/c couldn't find in the darkkk grrrrrr.

this issue makes me so grumpy...

Do you use the different sizes of nose pads...or just one..it seems like one fits better than the other.

I changed the filter pad (forgot to do it) and that seems to help too...but last nite...was a mess.

I've lost 36 #'s but thought they only needed to change the pressure if you gained.

Any ideas...could contact the company but...also they said i was ready to get another free mask so was going to get this kind...what do you think...like this one so much better...WHEN IT WORKS.

thanks again for taking the time

Judy in Philly

debbiewil Rookie
debbiewil
Posted

Hi Judy,

Any change in weight could mean a change in pressure is needed. I broke down and bought myself an autopap last January, with the software for my computer. So I can download the info every few weeks and check that I'm doing ok. Any major changes in the leaks or numbers and I can change the machine or readjust my mask, etc. I just use one size of the pillows, but I tried them all for a few days each to see which one worked best. And I was able to check the numbers from the autopap to confirm how I felt. Also, some people do better switching off the nasal pillow and a mask occassionally. I kept my old mask, and wear it every once in a while, just for a change. It helps keeps the nose from getting sore and I think that sometimes we just get TOO used to something so it stops being effective.

Any way, check out one of the message boards - Open Original Shared Link is a good one. Some very knowledgable people on there. There are a couple of others that I know of, it you want them.

Debbie

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author
Any way, check out one of the message boards - Open Original Shared Link is a good one. Some very knowledgable people on there. There are a couple of others that I know of, it you want them.

Debbie

Debbie

THANKS SO MUCH

I will check this out

I didn't know it was out there.

The computer thing..how much was it if you don't mind me asking.

I did another post but think you will be my real expert here--

Yes I'd love the other sites.

I just want to fee better and not have to keep getting up in the middle of the nite.

thanks so much for your time.

Judy

debbiewil Rookie
debbiewil
Posted

Judy,

I went for the Remstar auto w/c-flex - figured if I was going to do it, I might as well go top of the line.

Open Original Shared Link

plus the software - Open Original Shared Link

There are others out there - 2 of my friends have the Goodknight 420E and love it. There are, as always, pluses and minuses with each different machine. If you ever seriously consider it, let me know and I'll give you a rundown on the ones I know something about.

Depending on how long you've had your machine, the insurance company may reimburse you for purchase. Mine will reimburse if the old machine is over 2 years old. Or if you can convince your doctor to write a letter that the autopap is required, instead of the regular cpap, you might be able to get reimbursed. The reimbursement may only be for the cheapest machine, and if you want a more expensive one, you have to pay the difference, but it is worth while to check your insurance.

Websites:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Message boards

Open Original Shared Link

Open Original Shared Link

Debbie

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

Debbie

Thanks so much for the sites...ask and you shall receive :P

I looked at some of the sites and they are full of info.

I went swimming today and was so tired for last nite I came home and took a 3 hr nap :blink:

It's going to take some time and phone calls but tonight...going back to the old mask and see if my hubby and I can get some sleep.

thanks again for your time and expertice.

Judy in Philly

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


debbiewil Rookie
debbiewil
Posted

Judy,

You're welcome. Just glad I could help.

Debbie

gdiluca Newbie
gdiluca
Posted

Judy,

I use the NasalAire II and wear it over my ears and let it hang

down in front like a bolero. The only strap I use is one to hold

the tubes together at the back of my neck. My daughter, on the

other hand loves her Snapp.

Gretchen

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author
Judy,

I use the NasalAire II and wear it over my ears and let it hang

down in front like a bolero. The only strap I use is one to hold

the tubes together at the back of my neck. My daughter, on the

other hand loves her Snapp.

Gretchen

Thanks Debbie and Gretchen

I have to get familiar with these different kinds of masks.

When i got mine 5 years ago they said i could only have one kind.

After going on line last nite to some sites Debbie gave me realized why the insurance companies only say one kind..cheapest.

I've got alot of research to do...just want i want...more time on the computer...

seems like I'm getting some food questions under my belt and now this..but worth it to get good nites sleep.

thanks again

Judy

ebrbetty Rising Star
ebrbetty
Posted

my hubby had sleep apnea very bad, he had the surgery..its like he's a new man, to this day he say's its the best thing he has ever done. have you thought about it?

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author
my hubby had sleep apnea very bad, he had the surgery..its like he's a new man, to this day he say's its the best thing he has ever done. have you thought about it?

Hi

I don't know ANYTHING about a surgery.

Want to tell me about it :blink: "

Judy

ebrbetty Rising Star
ebrbetty
Posted

hi judy, he had it pretty bad, I used to stay up and watch him sleep because he would stop breathing and I would have to wake him. he tried the mask, hated it!! he tried to loose weight, did loose some, but because his neck is so big it made no difference, anyway he had his uvula [sp?] removed and the excess skin inside his neck removed, the healing process was a bit painful for the first few days, but as I said he firmly believes it's the best thing he ever did. he only snores now if he has a bad cold, he wakes up feeling really good, like he got a good nights sleep..no more falling asleep on the couch in the middle of the day. I remember before the surgery he always woke looking like he never slept, said thats what he felt like.

hope this helps you..good luck, feel better

Betty

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

Betty

Thanks so much.

They never mentioned surgery

Where do you folks live?

I sure hate the think of sleeping like this the rest of my life but maybe if i continue losing weight I might not have to...do you think??? :rolleyes:

I'm so happy for the both of you

Judy

ebrbetty Rising Star
ebrbetty
Posted

hi judy, we're from MA

good luck to you :)

debbiewil Rookie
debbiewil
Posted

Judy,

There are several different surgical proceedures, which can help in some cases. It very much depends on how your face, throat, etc. is shaped and what the actual cause of the blockage is. They can range from a very simple proceedure called "pillar" done right in the doctor's office to actually reconstructing the whole jaw. Some have had great success, and others have had major stuff done with no success at all. Really need to talk to a surgeon you trust (I'd get 2 opinions) before you opt for this. You need to know exactly what the cause of the apnea is in your case, and what if any surgery might help first. Don't want to scare you off, it does help some people, but you really need to check it out before you do it.

Debbie

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

Thanks so much Debbie

I appreciate all you info and ideas.

I have already had 25 surgerys over the years for a rare bone disorder and it's the last thing I'd want to do but nice to know there are options...

I did take your advice and pulled out my old mask and slept 13 hrs last nite...wow....think it was the nasel mask????? :rolleyes: No brainer here.

judy in philly

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.