Highly suspect I have OSA--any options for help for me?

[JanuarySun]

Hey all! I'll try to make this long story as brief as possible. For the past six years, I have suffered from a multitude of disabling symptoms which I originally completely attributed to hypothyroidism and a magnesium deficiency. Though I do have both, after being on thyroid meds and bringing my magnesium up, I have improved but am still disabled by...well, tons of the things I've read from other people on this board. I don't nod off very often, but I am completely drained of energy, have terrible memory/concentration problems, emotional dullness, apathy, swollen legs, reactive hypoglycemia...and two of the most telling symptoms--completely screwed up sleep, and frequent nighttime urination/urge incontinence. I typically wake up after 3-4 hours, I have to pee (and walk as fast as I can to get there), I hurt all over, and I usually can't go back to sleep. If I do manage to get back to sleep, it takes me at least an hour to come out of the groggy stupor and even be able to basically function at all. For years, even as a child, I had this issue. Very hard to wake up in the mornings, and groggy until at least lunch time. School was hell and I had a ton of concentration problems then.

Things have improved somewhat since being on meds and magnesium--when I first really went downhill, I couldn't remember conversation from two minutes prior and I repeated myself constantly. I peed so frequently that I thought I was diabetic, sometimes getting up six or seven times during the night, and then continuing to go sometimes every 5-10 minutes for the next couple of hours after I got up. Now it's typically 1-2 times and an urgent trip (or two or three) after I get up. However, the absolute drained feeling and cognitive difficulties haven't improved nearly to the degree they should have. Even washing dishes seems like a monumental task, and I can't read a book because I can't remember what happened. I don't have a social life because I rarely feel decent enough to leave the house anymore...I used to be really social and I miss that. As much as my dulled senses will allow me to miss it, anyway.

A friend was recently diagnosed and due to him talking about how incredible he felt after a few nights on his CPAP, I thought I'd do some research. I was in tears reading some of the stories on this board, because they sounded just like me. I have searched for an answer for my issues for six years, and I think this could be it. After seeing that nighttime urination, urge incontinence and leg swelling were symptoms (something that doctors have always sort of just cocked their heads at) and that OSA is frequently seen in people with hypothyroidism, I was pretty well convinced. I should mention that I'm a likely candidate--I'm very overweight, have a big neck, a slightly enlarged tongue from hypothyroidism, large adenoids and somewhat enlarged tonsils (though they were HUGE as a kid and I was plagued with tonsilitis). I snore so loudly on my back that I could break glass--I have frequently woken myself up snoring. I don't know if I snore on my side but if I do, it's certainly quieter.

Here's the thing--I haven't been employed in three years because I am physically and mentally incapable of working, so I have no income (some friends help me with living expenses). I also have no insurance. I am unfortunately in a state where they didn't expand Medicaid so REALLY poor people could get it. Does anyone know of any resources for help? If worse comes to worse, is there any harm in acquiring and trying a CPAP machine on my own if I happen not to have apnea? I thought I had read someone's story here and that's what he said he did. In the past six years I've run into maaaaany idiot doctors so I'm used to being my own guinea pig, haha.

Appreciate any guidance! Thank you!

[Thomas F.]

You can find used CPAP machines on craigslist. to get a mask requires a Dr prescription but you can get that from your general practitioner.

Masks cost a little money but can be bought at cpap.com with a prescription. You probably need to spend around $300-$400. to get therapy started. set the CPAP machine to straight pressure of 10 as a starter. Lot's of help can be found on this site.

In the meantime try sleep only on your side. I highly recommend a wedge pillow to raise your upper body up so gravity works for draining your sinuses and keep your tongue out of you airway when sleeping. Your symptoms are 99% indicating apnea. Many people (me included) have discovered that raising the upper body 30 degrees fixes the problem and don't need CPAP. Worth a try. I got my wedge pillow at Brookstone.

[Pugsy]

If worse comes to worse, is there any harm in acquiring and trying a CPAP machine on my own if I happen not to have apnea?

Not really much chance of causing harm unless you have some major issues that would be contraindication...
mainly severe lung issues that you would already know about.

As you are aware of there are ways to get a machine on your own and even get a mask without a RX.

Someone had a machine available for around $200 the other day on the forum...while not a full time apap machine it has some limited apap capability (apap is useful for helping find a suitable pressure) it could get the job done in your situation...maybe not perfectly ideal but it could get it done with just a little bit of extra work and the cost would be considerably less than a full time apap machine.

How much money could you come up with to buy a machine privately?

There are resources available for the needy to get you a machine for free but you would need a RX from a doctor to use those resources and most doctors won't write the RX without a sleep study and documented proof of OSA.

I have a machine that might work but it is an older machine and the only data available is on the LCD screen.
If you absolutely can't afford to buy privately...we might give it a try. It's an older ResMed APAP machine...used but I think still works perfectly (I need to check it out first) but the data available is limited and not ideal for what you really need. I would rather see you try at least the machine for $200 above before putting you on the one I have.

So....how much money could you spend?

I can help with a mask most likely...depending on size...cross that bridge later.

[So Sincere]

to get a mask requires a Dr prescription

You know I've been wondering about this. I recently bought a PR Wisp mask for $49.99 through Amazon just to check it out (didn't like it), no prescription ask for or required. They have lots of masks, and as far as I can tell you don't need a prescription for any of them. I also buy "prescription" eyeglasses online from Zenni Optical without a prescription. I wonder if it's merely customary or vendor policy to require a prescription and not required by law. Regardless, it's not true that one needs a doctor's prescription to buy a mask.

[ChicagoGranny]

Until you are able to acquire a CPAP machine, don't sleep on your back. On your back, gravity is pulling your tongue and soft palate directly into your airway. So, sleeping on the back is the most dangerous position for most people.

large adenoids and somewhat enlarged tonsils

This is the cause of obstructive sleep apnea in some people. It sounds like you are a candidate for surgical removal of tonsils and adenoids. It may not cure your sleep apnea, but it could be a significant help. If you decide to pursue it, you might want to get two recommendations for the surgery before proceeding.

I thought Obamacare was going to cover people in your position???

[Guest]

Thank you all for the replies! Through repeated attempts at Googling the right phrase, I did finally find a few stories of people who decided to self-treat and did so successfully. That's hugely encouraging!

In the meantime try sleep only on your side. I highly recommend a wedge pillow to raise your upper body up so gravity works for draining your sinuses and keep your tongue out of you airway when sleeping. Your symptoms are 99% indicating apnea. Many people (me included) have discovered that raising the upper body 30 degrees fixes the problem and don't need CPAP. Worth a try. I got my wedge pillow at Brookstone.

I've actually been using a wedge for several years, a) because I have reflux and b) because it's just more comfortable since I'm fat. Doesn't seem to help my apnea symptoms, though. I have always been a side sleeper but I've slept on my back a lot simply because I will sit in bed and then decide to "rest my eyes for a minute" and of course, I go right out. As I said in my original post, I don't really nod off a lot during the day but boy if I lay back and relax I will go out in an instant almost every time. Now that I've realized apnea may be the issue here, I'm trying not to "rest my eyes" anymore, haha. Didn't stop me last night, though. Oops.

There are resources available for the needy to get you a machine for free but you would need a RX from a doctor to use those resources and most doctors won't write the RX without a sleep study and documented proof of OSA.

I have a machine that might work but it is an older machine and the only data available is on the LCD screen.
If you absolutely can't afford to buy privately...we might give it a try. It's an older ResMed APAP machine...used but I think still works perfectly (I need to check it out first) but the data available is limited and not ideal for what you really need. I would rather see you try at least the machine for $200 above before putting you on the one I have.

So....how much money could you spend?

Wow, thank you so much!! I'm not sure how much I can spend. I know the friend who let me know about his apnea was thrilled for me when I told him that it was probably my issue too, and offered to help me financially, but to what tune, I don't know (I do know he's not loaded, haha). I also have a couple more friends who could probably pitch in. I don't know that I could come up with enough to afford one of the newer data-capable auto ones, but I might. I'll just have to start circling the wagons and see how far I get!

However, I have a new doctor who I adore, and he's aware of my financial situation. He miiiight be willing to write me a prescription. I called and left a message with his nurse yesterday, told her about my findings and told her to ask him if there were any resources for me, but I forgot they're on vacation this week, so I haven't heard back. There is a medical clinic here that I've been to once before that helps low-income people, but the main guy who works there is an NP who is a condescending, moronic jackass and I'd rather avoid him at all costs if I have to. But...y'know...if they can help me, I'll suck it up! But I went to this idiot once before and told him all my symptoms and that I suspected I had a magnesium deficiency, and after a lecture about how I needed to eat right and exercise (who can exercise when they don't have the energy to wash the freakin' dishes?!), he didn't even test my magnesium when he was running labs anyway. So I don't hold out much hope for that option.

I thought Obamacare was going to cover people in your position???

Unfortunately, states were given the option to choose to expand Medicaid. My governor chose not to do that. Thanks, Governor Deal, you absolute bag of crap!

------------------

Another question, and forgive me if it's stupid, because I'm new at this and boy is there a lot more research I need to do...if I record myself breathing when I'm on my side (as I already know I snore like hell on my back), will that tell me anything? Will I definitely hear pauses in my breathing, or does that always happen with OSA? I found a nifty little phone app that will record for 4 hours and then stop. Is that enough time? And you should've seen me testing it out this morning, holding my phone at random distances and faking sleepbreathing, snoring, snorting and pausing to see if the mic picked it up...it was quite a scene, haha!

[ChicagoGranny]

if I record myself breathing when I'm on my side (as I already know I snore like hell on my back), will that tell me anything?

Who knows. Just give it a try. But, what are you trying to learn anyway?

I've actually been using a wedge for several years, a) because I have reflux

Sleeping on a wedge can make reflux worse. Unless it is one of those long, expensive wedges that reaches all the way to your hips, a wedge causes a bend at the stomach. The bend in the stomach may cause reflux to be worse.

It's better to put your bed head legs on risers. You can improvise, or here are some commercial ones - http://www.amazon.com/s/ref=nb_sb_ss_c_ ... Caps%2C183

If you want to improvise, go for a 4-inch height. Higher is better for the reflux, but I have heard people slide down in the bed if they get too high.

[chunkyfrog]

Actually, some of us are short enough to use a regular wedge; but I still don't like it.

[JanuarySun]

if I record myself breathing when I'm on my side (as I already know I snore like hell on my back), will that tell me anything?

Who knows. Just give it a try. But, what are you trying to learn anyway?

I've actually been using a wedge for several years, a) because I have reflux

Sleeping on a wedge can make reflux worse. Unless it is one of those long, expensive wedges that reaches all the way to your hips, a wedge causes a bend at the stomach. The bend in the stomach may cause reflux to be worse.

It's better to put your bed head legs on risers. You can improvise, or here are some commercial ones - http://www.amazon.com/s/ref=nb_sb_ss_c_ ... Caps%2C183

If you want to improvise, go for a 4-inch height. Higher is better for the reflux, but I have heard people slide down in the bed if they get too high.

I didn't realize I wasn't logged in for my previous post...whoops! I think I fixed that now!

By recording myself, I guess I'm just hoping for some definitive proof before I go diving headlong down this avenue. It's been such a crappy six years filled with plenty of disappointments stemming from me thinking I know what my health issue is and how to fix it. But now that I think about it...I haven't actually been wrong yet! Both my thyroid and my magnesium WERE out of whack, and I was the one who figured both out. It's just that I thought the next thyroid dose or more magnesium was going to fix it all. Really, though, I don't know what else it could possibly be besides apnea. It just fits too well.

And yes, my wedge pillow is one of the long ones. My best friend's mom had two, for some reason, and gave me one. I really don't have issues with reflux at night anymore though...I've finally found a balance of meds that works well.

[ChicagoGranny]

thyroid

Not getting continuous deep sleep has been shown to literally wreak havoc on every system in your body. A sleep-breathing problem can aggravate, if not actually cause, hypothyroidism.

Some doctors, who are really on top of their game, always look for SDB (sleep-disordered breathing = an umbrella term for heavy snoring, UARs, apnea.) in patients presenting with thyroid irregularities.

I forget which doctor wrote that he always treats SDB before he spends too much time trying to get the thyroid regulated. Once SDB is controlled, the thyroid becomes easier to regulate, and in some cases, medication may no longer be needed.

Dr. Steven Park understand the connection between hypothyroidism and sleep apnea. He has a great blog - http://doctorstevenpark.com/.

[JanuarySun]

Some doctors, who are really on top of their game, always look for SDB (sleep-disordered breathing = an umbrella term for heavy snoring, UARs, apnea.) in patients presenting with thyroid irregularities.

After reading yesterday that SDB shows up in nearly ALL hypothyroid patients, I'm now rather shocked that no doctor has brought it up to me, especially since I am so overweight. Makes me a prime candidate. But then, I was shocked that my last regular GP never brought up thyroid issues when I had 70+ symptoms, either. My experience with doctors has not been great, to say the least.

I also just found out that screwed up sleep can cause weird vision issues...which is, I bet, why my vision is wonky for a while after I wake up (it's hard to read text, especially...it's like some of the letters partially disappear...hard to describe) and I have this fluttery, vibration-looking thing in my peripheral vision when a bright light is shined at my side. No one's ever been able to tell me why, not even my ophthalmologist.

[ChicagoGranny]

I also just found out that screwed up sleep can cause weird vision issues

Sleep deprivation, oxygen desats and excess cortisol levels have a negative impact on every living cell in the body. Every organ is made up of cells.

[JanuarySun]

Son of a gun. The more I read, the more the revelations keep coming. I have had spells of dry eye only at night--sometimes so severe that I would scratch my corneas by just opening my eyes. Guess what THAT'S a symptom of? Good grief! They were MUCH worse back before I started thyroid meds...back when I was practically bedridden and barely functioning at all. But I've had a few spells lately that were pretty rough.

What ELSE does apnea cause? This is wild!

[Julie]

Strokes, heart attacks, glaucoma, kidney problems, do you really want to know the possibilities?

[JanuarySun]

Strokes, heart attacks, glaucoma, kidney problems, do you really want to know the possibilities?

Heh, I just meant the milder, weirder stuff. I know about all the big bad stuff.