10 Years of Absolute Misery

[Sleeprider]

If you have a flow restriction that limits tidal volume or minute vent the Vauto can deal with that, if you can deal with the pressure support

As far as diagnostics on Lyme, Please give the internet a rest and find the best infectious disease specialist that accepts Medicare in your area. These guys are detective sleuths. They are in the business because of their curiosity and dedication to find sh*t you can't see that can hurt you. I went through CT scans, MRIs, Dopplar sonograms and bunch of blood tests, but following a spinal tap that was positive for bacterial infection, an Infectious Disease doctor asked to run the sample for Lyme. After dealing with every specialist in the book from neurology, pulmonology, ophthalmology, and others the infectious disease guy finally got it right. Today Lyme is in the forefront because so many cases exist and diagnostics are not what they were a few years ago. This diagnosis has changed rapidly. If you are clear, then great, but IF you get the right doctor working with you, life could turn-around, and they have better tools to help you than just a few years ago. Your tests in 2014 appear indeterminate and should be re-run with modern methods.

I assume you were an active guy that lead a full life and enjoyed outdoor activities and held a promising job, and today you can't. That was my world. Lyme caused me to retire because I couldn't function. None of it made sense at the time and no one could "see" anything wrong with me until I entered an acute meningitis stage. Treatment gave me back most of my life, but there were losses. I see you have a lot of what I had to go through, and want you to get the help you probably need. If I'm wrong, that's better for you, but i think you know it's better to get an answer.

I will help you optimize any CPAP or BPAP machine you want. It's a lot less mysterious than Lyme. Whether it helps or not depends on if we are treating the actual problem, and your patience.

[tarah]

Hi.  Although you may have Lyme disease, I do believe everything you describe can come from highly fragmented sleep.  I went through hell and back for 2 years before getting on CPAP, then again for almost a year when CPAP started not working before I got nasal surgery a month ago.  That has improved things greatly.  I did feel like I was going absolute insane, and wished to not wake up so many times.  I wouldn't be here without my family's support, and that's no exaggeration.  It's torture, no two ways about it.  I am so sorry you're in this place. 


Can you breathe through your nose well?

The thing that has reduced mouth breathing FOR ME, is the knightsbridge chin/jaw strap, which works much differently than all other chin strap, plus a soft cervical collar done up pretty dang tight to not just prevent chin tucking but actually hold my jaw closed a bit more.  I'd also add mouth taping if I was having large leaks.  Plus I use a full face mask, although going to try the bleep mask soon.

[SorryIamNormal]

Hi.  Although you may have Lyme disease, I do believe everything you describe can come from highly fragmented sleep. 
Can you breathe through your nose well?

The thing that has reduced mouth breathing FOR ME, is the knightsbridge chin/jaw strap, which works much differently than all other chin strap, plus a soft cervical collar done up pretty dang tight to not just prevent chin tucking but actually hold my jaw closed a bit more.  I'd also add mouth taping if I was having large leaks.  Plus I use a full face mask, although going to try the bleep mask soon.

I just got my nose totally fixed in July.  Without getting into all the details the two doctors would not let me use my cpap.  Eventually I deduced the reason was because they were trying to force me to get the Inspire implant (costs 100k).  How is it ethical to take a patient off a treatment they need to live, and have no plan? 

All they told me was either 'silence', 'you can use it when we clear you', or 'you should call the hospital and find someone who can help you with that'.  ENTs deal with sleep apnea because the ENT is an airway expert.  This is in addition to many other things I won't go in to.  After multiple violations of trust, you start to build a 'profile' of a place/person.   

The only thing that fits the timeline of the increased suffering is that I haven't been able to wear my dental splint for a month.  This TMJ splint brings my lower jaw forward.  I've worn this for 4 years straight.  Last month I had restorative dental and it wouldn't fit and I forgot to bring it with me.  Just this Wed I've been able to wear it again.  Except now I can't because now when I try to chew after wearing it, my teeth hurt (teeth have shifted and bite has changed?). 

I could feel the difference just from 8hrs of sleep, when I was wearing it on a regular basis.  That's how little time it takes for my jaw to go backwards again.  Can't wear a chinstrap because it's painful.  Prefer to have nothing on my head or face when the TMJ is bad because it's painful.

I'm putting my machine back on straight 14 tonight and I'm going to try the cervical collar.  I also had a makeshift chinstrap idea.  I'm going to use an N95 particulate mask and put a sock or two into it.  That should crowd the area in front of my mouth enough so I won't attemtp to breath through it.

[SorryIamNormal]

So I tried the cervical collar and I taped my mouth last night. Not sure Ill do the collar again.  After this I don't have anything else to try until the Vauto gets here.  Went back to auto 14-15

[JoeyWallaby]

No improvement in leak rate... guess your problem is mask fit/lots of movement then.

[SorryIamNormal]

No improvement in leak rate... guess your problem is mask fit/lots of movement then.

Right, I noticed that as well.  Any mask recomendations?  I thought I saw a pillow mask where the tube went over your head and the tube was held by the headgear.  That's always a problem for me, the tube.  Years ago I bought one of those metal tube hanger things.  But everytime I used it I felt consistently worse.  Maybe I was pulling the tube against it.  I don't know. 

I bought a comfort gel nasal mask since it was the most reviews on vender 1s site.  But the mask itself is too heavy.  Nasal mask if fine but it has to be light.

[JoeyWallaby]

Philips dreamwear maybe what you're talking about? And why didn't you like the bleep dreamport? It looks weird but a lot of people with persistant leak problems have had improvements since you basically have to rip it off to make it leak (assuming you put on correctly).

[Sleeprider]

I think you will find the Vauto much more comfortable. Most people do Your mask description fits the Philips Dreamwear Nasal mask or Resmed Airfit N30i. Both are nasal pillow designs with the air coupler above the headgear and tubed along the side. I have enjoyed the Resmed Airfit P10 nasal pillows for many years, but the headgear is not substantial and may slip.

[SorryIamNormal]

I think you will find the Vauto much more comfortable. Most people do  Your mask description fits the Philips Dreamwear Nasal mask or Resmed Airfit N30i. Both are nasal pillow designs with the air coupler above the headgear and tubed along the side.   I have enjoyed the Resmed Airfit P10 nasal pillows for many years, but the headgear is not substantial and may slip.

The bleep mask just looked weird but I haven't tried it.  I will check out both the dreamwear and the airfit on ebay.  Dealing with Lincare is impossible.  Why you can't just call them and change your mask.  Just makes it too hard to change anything and I'm not driving 20 miles to get handed a bag again.  Does apria allow online ordering?  Maybe I can switch to them and bypass all this incompetence.

I'm paying for insurance I'd love to actually use it.

[SorryIamNormal]

Philips dreamwear maybe what you're talking about? And why didn't you like the bleep dreamport? It looks weird but a lot of people with persistant leak problems have had improvements since you basically have to rip it off to make it leak (assuming you put on correctly).

Well it looks like apria DOES allow online ordering

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I'm very much interested in that.

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