Returning To Therapy with Startling Results

[GrammaBear]

You're very welcome. I will post out about that spinal stim device process in Off topic in future as it indirectly ties into how I will be doing medically going forward. FWIW my back and CPAP therapy and sleeping are definitely tied together. Each area helps or hinders the other areas depending in any given day.

Watching this post with interest.  A friend of mine also has the spinal stim device after suffering for years and is well pleased with the results thus far.  Hoping it helps you very much Dave.

[SarcasticDave94]

Thanks GrammaBear.

Got the psychological test slated mid October. Same as what insurance required to do bariatric surgery. Guess I better get to studying for the test..

[OldMarineOceanside]

Thanks GrammaBear.

Got the psychological test slated mid October. Same as what insurance required to do bariatric surgery. Guess I better get to studying for the test..

  Do NOT worry! I swear, with my severe PTSD, panic attacks etc and with all Lyme Disease has done to almost rob me of what little brain power I have remaining it was nothing at all.  It was maybe 5 minutes, 4 or 5 almost silly questions like did I ever want to join a group with Charlie Manson as my leader etc. The questions themselves were the only thing almost insane. Comical to say the least. I left asking my wife if what I heard really even happened...Sort of scary, the people making SO much money and driving up our insurance rates...Anyway, it was silly at best. At least MINE was. I so wish I could have gone ahead with the implant to help mitigate the horrific neuropathy. But since we discovered I also have late stage chronic Lyme Disease (here in California where they SWEAR it doesn't even exist), I and even my doctors halted plans for it. The fast moving spirochetes have done so much damage and such severe muscle wasting nobody knows what may happen. So my legs live on with enough electricity running through them to light all of Las Vegas...

[OldMarineOceanside]

                                                                               4.52 AHI Last Night

OK I finally broke that 5.0 barrier last night and stayed at the higher pressue folks asked me to try too. If I could find any way in this World to stop the fidgeting, itching & scratching my nose by popping my full face mask up to DO all that for the first hour in bed, I think my AHI would be under 2? I just am so new in my return to PAP therapy I am very "unsettled" and nervous. I am still very unsure of what I am hearing too when first getting to bedbecause I have just removed my hearing aids and I am unsure if this is a leak, ot that is a leak, or is it the exhaust sound just from regular breathing etc. I am SO skittish when first jumping into that bed! I swear I will try to do better. I am trying SO hard you just have no idea. I deal with a lot of demons when going to bed with PTSD and panic attacks etc when those lights go out each night.  

So, here is last night.  https://imgur.com/a/TKMMr

[Sleeprider]

OldMarine, I find it very satisfying personally, and I'm glad for you that you have made so much progress. I may have been wrong and you will achieve the treatment you need with the ST machine. Nothing would make me happier.

You keep mentioning Lyme's. I had one of the worst cases of neuro-lyme in 2013 that my many specialists had ever seen. I woke up one morning just after moving into our new house and had numbness in my arm, double vision and weakness. My wife drove me to the hospital where I underwent a battery of tests, and I was admitted for observation with no diagnosis. The first night I developed Bells Palsy and had severe abdominal pain. After the second night I had bilateral Palsy, lost muscle control in the abdomen, and needed a walker due to loss of equilibrium. After the third day I was quarantined for an undiagnosed bacterial infection, and finally on the 4th day had a spinal tap where the Lyme was isolated and diagnosed. I remember a doctor walking in before the diagnosis and announcing in front of my wife and mother-in-law "well the good news is, you don't have HIV. The bad news is we don't know what you're infected with and you are in a quarantine."

I was totally disabled by this time, and after a week was sent home where I spent the next month on daily intravenous antibiotics. I remember trying to reach overhead to change a light bulb and falling over. I could only each soft food and had to hold my hand over my mouth to chew and the paralysis meant i could not even pronounce words. I even had a handicap tag for the car I could no longer drive. I tried returning to work after a few months, but couldn't mentally focus on tasks and my mind was my living. I lost that job. It took me two years to even begin to feel like I had recovered. I might be fairly normal by now, but I sure know what you went through. No one seems to understand the neurological impacts Lyme can have on your life. I retired early, but never got disability.

[OldMarineOceanside]

OldMarine, I find it very satisfying personally, and I'm glad for you that you have made so much progress.  I may have been wrong and you will achieve the treatment you need with the ST machine.  Nothing would make me happier.

You keep mentioning Lyme's.  I had one of the worst cases of neuro-lyme in 2013 that my many specialists had ever seen.  I woke up one morning just after moving into our new house and had numbness in my arm, double vision and weakness.  My wife drove me to the hospital where I underwent a battery of tests, and I was admitted for observation with no diagnosis.  The first night I developed Bells Palsy and had severe abdominal pain. After the second night I had bilateral Palsy, lost muscle control in the abdomen, and needed a walker due to loss of equilibrium.  After the third day I was quarantined for an undiagnosed bacterial infection, and finally on the 4th day had a spinal tap where the Lyme was isolated and diagnosed.  I remember a doctor walking in before the diagnosis and announcing in front of my wife and mother-in-law "well the good news is, you don't have HIV.  The bad news is we don't know what you're infected with and you are in a quarantine."

I was totally disabled by this time, and after a week was sent home where I spent the next month on daily intravenous antibiotics.  I remember trying to reach overhead to change a light bulb and falling over. I could only each soft food and had to hold my hand over my mouth to chew and the paralysis meant i could not even pronounce words.   I even had a handicap tag for the car I could no longer drive.  I tried returning to work after a few months, but couldn't mentally focus on tasks and my mind was my living.  I lost that job. It took me two years to even begin to feel like I had recovered.  I might be fairly normal by now, but I sure know what you went through.  No one seems to understand the neurological impacts Lyme can have on your life.  I retired early, but never got disability.

 
  Yes I mention Lyme since I have so many disabilities so try to allow information do other may be able to differentiate why/how, etc? 4 Bullet & Shrapnel wounds never helped, severe exposure to Agent Orange REALLY didn't help and ironically we meet with a Government toxicology doctor tomorrow at 9:30 AM JUST so they can check that box off as well as that TOO is not this governments fault...(yeah I AM bitter. Actually bitter can't cover it. I have had 6 spine fusions, the last time they did 4 at once using a Mazor Robot and also redid one that had been done wrong. Oh but wait there is SO much more:-( Yeah as I told the morons I didn't NEED more fusions, my pain was soft tissue pain. But no, they know far more about MY pain than little ole me. And I put the surgeons hand ON a tumor in my L5/S1 area and pointed it out, and that it had been removed prior once already. He said no, NO tumor there, our finest in the land MRI and CT scans we did to FURTHER radiate your sorry old behind would have seen anything as small as a fly spec. Yeah right, so what happened? I wake up and he is standing at my bedside RAVING to my wife how she could never possibly believe the SIZE of the largest tumor he had EVER seen, bigger than a large grapefruit and over 20 pounds, blah, blah, blah. At this point as I woke enough to speak I just yelled for him to get his BLANK OUT of my BLANK hospital room....

  I have now had over 64 tumors removed as of that moment. 3 weeks later had to have a full Mastectomy of my left breast (yes I am a GUY). A very painful pea size lump just literally sprang up in the middle of the night! In the 9 days it took to get insurance to authorize a biopsy, they instead had to rush me into hospital to remove a now larger than a XL Egg sized tumor. So to the point, what, WHAT on earth could Agent Orange have to do with anything? Yeah, nothin at all I'm sure. And I too, never got disability. But I am now on Social Security with HMO Supplemental Insurance and with MY co-pays with outstanding insurance, and my wife still with the same law firm for over 35 years & working, battling Cancer, if you add both of our co-pays, we are over a half million dollars now. 

   So often I mention whatever I might think (just guessing at this point) issue in my life, might be contributing to this or that, whatever it is I am discussing. I am told Lyme makes sleep impossible but in my case so does reliving some ugliness etc I just don't know anymore. I have so MUCH pain, in s many places and all the time I honestly don't know or even care anymore, what it is. I just sort of want it all to be over. But the wife starts sobbing and I cave in and I got to the doctor or buy another CPAP machine then come here asking for help.

  But to be clear, are you saying this ST machine might help me? I am losing track of who tells me what but most everyone says it simply will NOT, CAN not, and worse, will likely make my Central Apneas much worse. So now this has my wife running amuck looking to borrow money and me yelling I will NOT do that so we're having our third fight in over 35 years together. ANY lifeline would be sorta nice:-)  But I honestly want only the truth, I NEED the truth because I am so lost, so tired, so broke as well as so broken I feel myself at the end of a very long road. If you get this PLEASE clarify if you think the ST machine might help me? I did turn up everything quite a bit past my comfort level out of sheer desperation. I do need to take the narcotic pain medication till the end however. I tried to cut back and ended up back in the hospital last week with heart problems so kind of do believe the doctors now on that. I simply HATE drugs, used to arrest idiots on drugs. Just a tough subject for me.

  Lastly, whatever old Legacy ASV machine or machines that other forum owner sent have just arrived in San Diego so will see them tomorrow. They will be here at my home by the time I get home from the VA. Without any means to connect to any software, I really am unsure what I think about that deal?

  Oh and on Lyme,I tried the Stephen B. Protocol for a few months but quit. I don't have the $100K-$500K the doctors here ask to treat. What I did do and stuck to was a severe Paleo MS Diet that actually helped. And not a drop of alcohol (never really drank anyway however) and ironic just had my VA Lab tests back and in my entire 68 year life I NEVER had cholesterol under 289, used to range at 289-370 which REALLY upset me since I was an EVERY day surfer after work, Kayaker, motorcycle racer, really athletic but just never got that down! Now with no changes but this diet and I just dropped, no, plummeted down to 174! Damned near fainted. REPEATEDLY! That alone made my year. Now I sold my truck, just last month after a year in bed. Like you-My eyes are gone more or less now. I give up at this point. Paid some bills with the money and sold every toy we had. I will never walk again and since I can't even stand, lost almost 3 full inches of each calf muscle in just a couple WEEKS when the severe muscle wasting came to me. Like yourself I am sure, just too much to list. I would get into trouble here if I even tried. Joined EVERY forum & found thousands of others. Most been there often for over 5 years, no real improvement so I refuse to drain my wifes future given I am just a terrible "investment". Simply the truth.

*But please, tell me, I have a TINY chance of at least "some" help with the ST? Now if it puts me at higher risk, please tell me the truth and I will cave to the wife's wishes. But if I do have to, I am gonna pout like the BIGGEST baby in the history of mankind...
Mike

[Sleeprider]

I think my comment was cle ar that you exceeded my best expectations for ST. You are doing amazing in terms of all the numbers; AHI, respiration, hours of therapy. Your results are currently everything we look for in effective treatment, and now we just need time an patience for the benefits to be realized. The central apnea is gone. There is still some residual hypopnea, but not severe. I'm frankly amazed...check my post count, I've looked at a lot of cases.

[SarcasticDave94]

Great results with that ST machine. Congrats. Hope those results are going to be consistent for you.

For what it's worth on the psychological evaluation, my last one was a video chat in a doctor's office where he was in another city. Basic Q & A. He wrote that I was sane enough to proceed with surgery.

[OldMarineOceanside]

Oh I KNOW- trust me! That is why I double asked:-) I just wanted to be double double TRIPLE sure. Also to make sure maybe you were not "joking"? Because you were so relentless about ASV, ASV, ASV and while I was honestly right there with you, I was also crushed and demoralized that I was wasting my time with this. After all I have endured, and now this? It was about as much of a breaking point as I could endure and not just walk away. But there is just something in me that is just to stubborn, desperate? I don't know for sure. I only knew that this is what I got, I was SO thrilled I got it and only sent the woman $50.00 out of gratitude and she didn't ASK for anything. But good grief she also tossed in a heated hose (not sure what they call it but also brand NEW, and a brand new (but handled ONLY at her sleep clinic DME) mask, my dream mask an F20 Airfit PLUS another F20 AirTouch face part to snap int to also try, so 2 masks in one. Like an Angle dropped for Heaven and I never asked, hinted, NOTHING about wanting a single thing. In fact is is the very first "thing" I ever accepted in my 68 year life. She, AND the owner of that other forum both thought it would be beneficial but unsure how much, so he & she got together to surprise me. The HE ships me one, maybe TWO old clunker Legacy but full ASV machine and some kind of very old full face masks, one medium, one large just in case I want to try them. And here is what confused heck out of me. He said and I quote, "I programmed one for the medium mask, programmed the other for the Large mask" All I can think is WHAT???? So no idea what on Earth will be on my porch when I get home from the VA Hospital Toxicity Lab tomorrow but USPS Tracking shows 2 boxes each insured for $500.00 each just arrived in Oceanside about 15 minutes ago for tomorrow delivery.

So I am still in a bit of Twilight Zone over ALL of this and MY head is spinning and would be even without Lyme...At this point I am beyond confused, paranoid and even embarrassed to have someone help when I never asked or suggested it. But sadly I also didn't turn it down but sent each of them $50.00 and they fought me on even that. There are amazing people in the CPAP World. And now with YOU saying maybe the ST I am using actually might help me, and not HURT me, I have a bit of hope. It too an awful lot for me to bump up my pressure so far, so fast. I have severe PTSD for Combat related "stuff" I won't ever go into. But after so much has been done for me, nothing is going to get in my way to prevent me from every option I have at success with this. I have simply gone through WAY too much. And thank YOU for sticking by me and yet letting me know you changed your mind. I really did feel I was wasting my time.

[OldMarineOceanside]

Funny almost EXACT with em. She looked up and said, "Well, I can see you are not insane so you can go"

  I took my wife's hand and got up, looked over and said " well that's great but it's obvious that YOU are CRAZY as Hell"! All she did was tell me she had medication for that...