Horrible endstage of OSA - debrief please.

[Moby]

One of the patients where I work is in the final, terminal stages of the complications of sleep apnoea/morbid obesity/diabetes/heart failure/renal failure.

Obviously on a public forum like this I can't say very much as I don't want to break confidentiality.

But it is a shocking thing to see. And it grieves me how little the cycle is understood.

I do my best to explain to those concerned what I understand about the sleep/eat/lethargy cycle. I can't seem to get through to them.

I also suffer from depression and find that the stigma is lifting from depression, which is increasingly seen as a disease comparable,say, to diabetes or asthma. I can discuss my depression with people without fear of judgement or criticism.

There is a stigma to obesity though, and in the case of sleep apnoea I think that is very unfair. I tried to explain to some people that before my apnoea was adequately treated I was too exhausted to climb a flight of stairs without stopping, or that the only way I could get energy to move around was by eating some carbs - they look blank and shrug that self control is the answer. How hard can that be? (!)



I was watching this poor unconsious man struggle for breath, (he is my own age) and of course we were all doing what we could for him. It came home to me that I am so very very very lucky that I have the ability to understand my disease and get the right treatment for myself. I'm lucky to have the education and the understanding and the confidence and the support and the perseverance to get what I need to help me, and I have somehow been given the gift of not giving up on myself, although that has been a temptation.

I am so very very lucky to start reversing the inexorable weight gain of the past twenty years *without even trying*, now that I am getting the restful sleep I need.

That's what I need to say. I am so lucky. And I am feeling very sad for OS apnoeics who haven't been so lucky.

Di

[kteague]

So very well said. Your post could be the catalyst to change in someone's life, and in someone else's attitude toward their life with OSA. Thank you for sharing your heart.
Kathy

[roster]

Thank you. Your writing should be in the national press in place of those stupid articles about "getting a little machine to blow air to help you sleep".

[Slinky]

AMEN!

[rested gal]

Moby, your compassionate heart shines through. Thanks for your eloquent post.

[arthuranxious]

I find something important in your post beyond mere compassion. You mention having felt so exhausted prior to diagnosis and treatment of OSA that you were constantly reaching for carbs, and now (on CPAP) losing weight without trying. And a lightbulb went on in my head. I have been frustrated by not being able to lose weight on CPAP, and disappointed. And I think I know why, I never had the kind of tiredness which made me reach for carbs prior to diagnosis. Possibly the people who lose weight without trying were stuffing carbs for energy before.... And the change in metabolism theory is not as important as the elimination of pick-me-up snacking.

[j.a.taylor]

Moby,

Thanks for sharing.

It's sad when you see something like this happen, and you understand some of the reasons behind it, and yet it's still a struggle to educate others.

I'm new to all this, and after reading some of the things on this forum, and in other places, I'm so glad that my wife finally made me tell my doctor about my sleep problems.

I didn't realize how much I was endangering my health, and my future with my family.

[amandalee]

You mention having felt so exhausted prior to diagnosis and treatment of OSA that you were constantly reaching for carbs, and now (on CPAP) losing weight without trying.

I can totally identify with this. I crave carbs nonstop. I'm so sick of all the people who say "just get some self control" or whatever, because if I try not to give into the cravings, I just get more irritable and angry the longer I go without. Luckily though, I get my CPAP machine tomorrow, so hopefully treating my OSA will help with my carb cravings.
Anyway, nice post. Hopefully it will encourage those who are struggling with treatment to stick with it and serve as a wake-up call to others who are in denial or are putting off getting treatment for other reasons.

[Jeanie821]

The tide is turning for me! The last couple of nights I haven't even been hungry at dinner time. Unfortunately, my cat is now very disappointed, as he waits for his table scraps.

[Nodzy]

Very sad, yet eloquently informative.

I have had sleep apnea since I was a young teen. Doctors always sloughed it off because of my apparent great health, vitality, energy and stamina. A smoke-&-mirror show by me, for sure. I learned as a young adult how to force endorphin and adrenaline boosts, unseen to others, in order to be as normal outwardly as possible. And to exceed the stamina and energy of others I had to compete with.

Many on the board probably know how long-term detrimental those every-hour-or-two, self-forced adrenaline and endorphin boosts are to one's health.

I did hard work all of my life, working excessively long hours, also spent 4-years as a Marine and had top marks and honors in almost every area of training and specialty expertise.... and in my late 40's the OSA started taking me down beyond what I could compensate for.

Depite doctors knowing of my ailment through most of my life I was never formally diagnosed, no sleep studies were done... and I compensated and suffered for decades.

I was 51, with a ruined life and severely damaged health from OSA, out of work... and the VA finally, after several years of me badgering them constantly, had a sleep study done on me.

The tech, in questioning me, was appalled that I knew of the symptoms, as did doctors, family and friends for decades, and I was left untreated. He was kind enough to tell me that I was in immanent danger of dying at any moment, as though by then I didn't already know how fortunate I was to be alive on that day, and every day I had survived thus far.

But he did stress that I should force the VA to treat me aggressively in a STAT manner. Anyone who has dealt with the VA knows that pushing them is like leaning on a mountain, trying to scoot it an inch.

By the time I got my first CPAP, almost a year after the sleep study, I was nearly dying from renal problems, liver problems, severe full-body edema, and a host of other potentially deadly maladies. I was in rhabdomyolysis three times over four years before getting the CPAP - the third time was during the wait after the sleep study and before the VA had a DME deliver a CPAP to me.

Because of the decades of lack of treatment I was saddled with, in the late 1990's and on, Type 2 diabetes, severe neuropathy all over, severe fibromyalgia, hypertension, three known MI's now, numerous visible clots and a frightening amount of plaque in my arteries.

And anyone who tells you that you can't feel some clots and chunks of plaque move in your veins and arteries... hogwash. Several months ago I had a large clot in my right shin move, break apart and hit me in five places, and some of those moved more times over the next weeks. Each time a chunk lodged in a new spot I was sent into horrendous pain. Simply put, I have too many clots for doctors to risk trying to remedy one or two. They're afraid to perform any surgery that requires anesthesia.

From the diabetes, neuropathy and fibromyalgia, on the 1-to-10 pain scale I live daily with 6-to-10 pain. Usually it runs at the 6-to-8 levels. No respite from pain at all. Before my active self-involvement in my regimens I lived with 8-to-10 pain daily.

BEFORE READING FURTHER - Consult your doctor(s), DME(s) and clinician(s) before making any changes in your regimen, or adding supplements of any kind.

Through my own regimens and adaptations of doctor recommended regimens I managed to shed all of the decade-long edema weight... about 75-lbs of it. I still have an edema problem but it's a daily thing, and it does not accumulate unchecked. I managed that without prescription diuretics. What I really like is that I'm almost back to my age 18-to-47 waist of 34-inches and 47-inch chest.

Simply - had I not begun to address my own problems I would have died, even with the VA and DME issued CPAP unit. I started taking 81mg aspirin daily, instead of the one to two 325mg tablets daily -- at two 81mg aspirin every 4 to 6-hours and 1 to 1-1/2 teaspoons of brown vinegar in 4 to 6-ounces of water once to twice daily. Both thin blood, and the vinegar is a centuries proven artery cleaner. Similar to red wine in effect, but infinitely less expensive and much faster in its benefits.

I cut way back on carbonated beverages, to no more than one per day, and preferrably no more than four 12-ounce servings per week. I love Coke on ice with a twist of lime, but am surviving without so much of it.

I also take several tabelspoons of brown (natural) ketchup daily for its beneficial properties. Though, the all-natural ketchup is not carried by most stores.

Additionally, I sleep with music -- specifically, CHANT, by the Benedictine Monks of Santo Domingo De Silos, their original CD or the second or third in their series. It proved, for me at least, to have healing benefits in addition to relaxation sound.

I also take Milk Thistle capsules, and a small array of other supplements. And shun almost every medication that the doctors issue to me for pain and sedation. I found through experience that all of the ones I have been prescribed have more negative effects in me than positive effects.

I have managed to self-control my Type 2 diabetes for over a year now by using foods, rest, exercise, mental and spiritual energy... and smiling every chance I can. Yes, smiling.

I should also add - bicycle riding helped me in my recovery. At first I couldn't ride 1000-feet without total exhaustion. I built myself up over about 6-months to where I could ride about 6-miles non-stop, three of which were on slight uphill incline all the way home. I was exhausted when done... but so exhilerated from the effort. I could feel toxins being cleansed out of my body in shed water. Those were wee-hour morning rides, between 3a.m. and 5:30a.m.

I have also managed to lower the medication dosages for my blood pressure regulation by making regimen changes and adding my own regimens to the mix.

On many days while sitting at the computer for an hour to four hours, and on the rare days I watch TV for an hour or more, I slip the mask on and turn-on the CPAP.

So many things can help, and much depends on the person, their likes, dislikes and what they're willing to do for themselves. And much depends on the body and physical condition of the sufferer. The point being... if you want to live... look for ways to do more for yourself than what doctors can do for you with machines and medications. The self-satisfaction is a key ingredient in your healing... knowing that you benefitted yourself with your effort.

There is no full recovery from the damage I have suffered, but I have recovered substantially under my own guidance to a point where I am not a pained veggie who can't function at all. Though, I am a bit troubled by the rapid return of sex cravings that rival those of my 20's to 30's. Yes, another pleasant side-effect of my partial overall healing that was substantially self-achieved.

My greatest beneficial decision was to purchase my own CPAP unit... the REMstar DS510 M-Series A-FLEX with humidfier and an OptiLife mask. The VA issued CPAP's were the tank styles, with the latest technology being C-FLEX. They claim they are 2-years behind on sleep studies, and that I can't qualify for an A-FLEX unit until I have a sleep study to see if I warrant one. The DS510 is a blessing for my particular needs because it responds to my greatly varied episodes, rather than ignores them or addresses only one or two kinds. I can't say enough for the folks at http://www.youneedsleep.com who answered all of my questions and promptly shipped the unit and mask to me.

REMEMBER Consult your doctor(s), DME(s) and clinician(s) before making any changes in your regimen, or adding supplements of any kind.

[amandalee]

Nodzy- Thanks for sharing your story. If someone who has been putting off treatment or getting a sleep test for whatever reason isn't convinced by that, then there's probably nothing that will convince them.
Also, I'm sorry you had such a hard time dealing with the VA. It is a really sad situation when those who have served their country have to fight just to get decent, basic medical care, but that's another can of worms entirely...
Good for you for taking charge of your own health. I've done a bit of reading on Apple Cider Vinegar and it seems to have some interesting health benefits, but I haven't been able to get past the taste and start taking it daily.
Anyway, I'm glad you are doing so well.