New, Help

[herownsociety]

Hello, I have seen a sleep specialist/neurologist who believes I have sleep apnea. I have been suffering for about two years. I wake up feeling like hell every morning. I am constantly exhausted. A few months ago I started to wake myself up with snores/gasps. More recently I've woken up to a racing heart. I feel shaky during the day and like my life has been taken away.

I have very limited (extremely high deductible) insurance. It is likely that I won't be able to have an official sleep study or be able to go back to see the specialist. I'm trying to find a way, but this is my situation. I'm here for help and not any type of lecture on what I should be doing. I am doing the best that I can.

I generally do not find doctors particularly engaged, knowledgeable or helpful anyway. I would appreciate well intentioned advice. The specialist said it was unlikely he would put me on any type of machine anyway after reviewing my symptoms. I am frustrated as the only solutions I've been able to find are, don't drink alcohol before bed, don't sleep on your back and lose weight. I don't sleep on my back and it helped for a while. I could stand to lose a few pounds, but I am not significantly overweight so I'm not sure how much of a factor that is. Is there anything else that helps? Also, do you find that practicing good sleep hygiene provides any sort of help or does it not matter anyway as you will be waking up regardless. I think I'm subconsciously avoiding sleep as it's very difficult for me to go to bed before 3 or 4am. I sleep until 11 or so, but I still like death when I wake up.

Has anyone experienced chest tightness as symptom? I went to a walk in and they claimed this was just muscular. I also sometimes have the sensation I can't get a good breathe when I lay down when I'm awake, but I seem to be breathing. Is this common?

I also read that acid can cause sleep apnea, anyone have experience with this. Seems that elevating the bed may be a solution to this. How is this done, with bed elevators just on the top?

[Janknitz]

If you have some budget you may be able to find a home sleep test--your regular doctor may be able to refer you for this. It involves a device that straps to your wrist with probes attached to two fingers, and sometimes a chest strap. You do it at home in your own bed. That's often less expensive than a full sleep test in a sleep clinic lab. Another option is to rent or borrow a recording oximeter to see what your oxygen levels are doing during the night.

It's always worth trying to negotiate a price with a sleep clinic. Call around and explain that you would like to be tested without insurance. (If they know you have insurance, they may be required to charge you the price the insurance company will pay). See if they will negotiate the price for you. I've heard of people getting $1,200 MRI's for $250 by negotiating a cash price with the provider.

Some people skip all that and obtain their own auto adjusting CPAP machine. They are very affordable on Secondwind.com or Craigslist, and you can use it as a diagnostic device (people here may guide you if you're interested in trying that). Sometimes people on this list will sell an autopap for a good price. If you determine that it helps, we can help you titrate--which means determining a setting that works for you, and then you can use the machine.

[Julie]

You need to be tested, whether formally in a sleep lab, informally with a paid for home study (less than lab cost) or at least be titrated (gauged) using an automatic Cpap machine that gives nightly data about your condition (more than 'compliance data), and you may be able to find such a machine at somewhere like Secondwind.com, Craig's list, etc... but need to know more about machines and how to set them up before shelling out a couple of hundred. I suggest waiting, however, for others here who are more expert to chime in with advice on the machines (just give them an hour or so - things go fast here ) and who can talk about insce. in the U.S. better than I can from up north here. You definitely sound like a candidate for therapy though.

[robysue]

Welcome to the forum herownsociety!

You write:

Hello, I have seen a sleep specialist/neurologist who believes I have sleep apnea. I have been suffering for about two years. I wake up feeling like hell every morning. I am constantly exhausted. A few months ago I started to wake myself up with snores/gasps. More recently I've woken up to a racing heart. I feel shaky during the day and like my life has been taken away.

I have very limited (extremely high deductible) insurance. It is likely that I won't be able to have an official sleep study or be able to go back to see the specialist. I'm trying to find a way, but this is my situation. I'm here for help and not any type of lecture on what I should be doing. I am doing the best that I can.

It is a shame that you cannot afford to have an official sleep study done or even go back to see the specialist. There are some home sleep studies that can be ordered by a doctor (including your PCP if you have one) and they are typically much cheaper than the formal in-lab sleep studies are. Perhaps that route might be affordable to you. But perhaps that's even too expensive.

I generally do not find doctors particularly engaged, knowledgeable or helpful anyway. I would appreciate well intentioned advice. The specialist said it was unlikely he would put me on any type of machine anyway after reviewing my symptoms.

This is a particularly interesting comment for a sleep specialist to say: Most sleep specialists now start people on CPAP if they have any kind of daytime symptoms and a sleep test verifies that there is mild OSA, and most sleep specialists will start people on CPAP if a sleep test reveals moderate to severe OSA regardless of whether the patient has other symptoms.

It would help us help you if we knew why the specialist said it was "unlikely he would put [you] on any type of machine anyway after reviewing [your] symptoms." Did he indicate what he WOULD be likely to suggest instead of CPAP? Did he say why he would suggest it?

I am frustrated as the only solutions I've been able to find are, don't drink alcohol before bed, don't sleep on your back and lose weight. I don't sleep on my back and it helped for a while. I could stand to lose a few pounds, but I am not significantly overweight so I'm not sure how much of a factor that is. Is there anything else that helps?

Unfortunately these suggestions are usually only moderately effective at treating very mild OSA. If you've got moderate or severe OSA, none of these suggestions is likely to do much good. For people with moderate to severe OSA, there really aren't any "self-help" measures: CPAP is the most effective way of treating moderate to severe OSA, and CPAP requires a prescription. (More on this in a bit.) The other official medical treatments for OSA include prescription oral devices (which can be just as expensive as a CPAP machine) that typically reduce the AHI by about 50% (which can still leave a person with clinically significant numbers of apneas and hypopneas) and surgery, which is declared a success if the AHI is reduced by 50%. And surgery is only successful about 50% of the time. And surgery is more expensive than CPAP.

Also, do you find that practicing good sleep hygiene provides any sort of help or does it not matter anyway as you will be waking up regardless. I think I'm subconsciously avoiding sleep as it's very difficult for me to go to bed before 3 or 4am. I sleep until 11 or so, but I still like death when I wake up.

As important as good sleep hygiene is helping people with insomniac problems adjust to CPAP, good sleep hygiene does NOT effectively treat OSA. The reason is simple: OSA is caused by physical anomalies in your upper airway and your oral-nasal cavities---the airway is too narrow, the tongue or the upper palate is too large, and the muscles relax too much when you're asleep. All of which allow the upper airway to collapse and become blocked when you are asleep. All the sleep hygiene in the world won't prevent the airway from collapsing, and until the collapsing airway is dealt with, the OSA is not going to get any better.

Has anyone experienced chest tightness as symptom? I went to a walk in and they claimed this was just muscular. I also sometimes have the sensation I can't get a good breathe when I lay down when I'm awake, but I seem to be breathing. Is this common?

While these kinds of symptoms are not unheard of, they can also indicate other problems. When was the last time you had a plain old physical exam with your PCP?

I also read that acid can cause sleep apnea, anyone have experience with this. Seems that elevating the bed may be a solution to this. How is this done, with bed elevators just on the top?

I'm not sure that acid reflux (GERD) can directly cause OSA, but GERD and OSA can be comorbidities---meaning it is not uncommon for people to have both conditions. And certainly OSA can make GERD worse. (I'm not sure if GERD can make OSA worse, but it's possible)

Elevating the head of the bed is often suggested in treating GERD. The usual way is to put "risers" under the legs of the bed at the top end only. (I believe the risers are usually about 2-4 inches high, and they can be bought without a prescription.) A large wedge shaped very firm pillow called a bed wedge can also be put on top of the mattress (and usually under the bottom sheet) as a way of providing some elevation for the head.

Now for some practical advice: The specialist has told you he thinks you have sleep apnea and the symptoms you describe

I wake up feeling like hell every morning. I am constantly exhausted. A few months ago I started to wake myself up with snores/gasps. More recently I've woken up to a racing heart. I feel shaky during the day and like my life has been taken away.

sure sound like OSA. There are a number of members here who have self-diagnosed their OSA and have found ways to treat it with CPAP even though they don't have a formal diagnosis and are not working with a doctor. Personally I would NOT recommend doing it that way, but sometimes people have to do things in a less than optimal fashion because of circumstances that are beyond their control. If you believe you have OSA and you really can't afford to get a sleep test done and to work with a specialist, then you have to decide whether you want to self-treat with CPAP or not.

If you do decide to self-treat, here are the hurdles you will face and some suggestions for getting around them:

1) Buying a CPAP/APAP. A prescription written by a doctor is required to buy a CPAP from a durable medical equipment provider (DME), and that's true even if the DME is an on-line one like our host. But CPAPs/APAPs do show up on craigslist frequently and there are occasionally people here advertising a PAP for sale. If you decide to buy a used PAP off of craigslist or at a garage sale of some sort, you want to have done a lot of reading about these machines before hand: The sellers of these machines often vastly overestimate what a reasonable price for the machine is (particularly outdated models). Moreover, as someone who is self treating, you absolutely must have a machine that records full efficacy data. And many sellers of used PAPs haven't the foggiest idea of what the exact model of the machine they are selling is, let alone whether it really records any useful data.

2) Buying masks. Masks require a prescription to be bought from a DME, and that's true even if the DME is an on-line provider. Used masks are not usually a good idea. (They do wear out.) However, mask parts do NOT require a script to buy. And so it is possible to buy the mask in pieces and then put it together yourself. (Its pretty easy to do as long as you have all the parts.) New mask parts sometimes show up in Ebay, and that can save you some $$ when compared to buying the same parts from an on-line DME. Choosing the right mask will also be harder for you since you won't be able to just wander down to the nearest DME and try them on. So before starting the quest for the mask parts, you'll want to get as much information as you can about the pluses and minuses of each style mask so that you can figure out what kind of mask may work best for you. And do keep in mind that many new PAPers go through multiple masks before finding one that works for them.

3) Once you have the equipment, you have to set it up and start using it. You won't have a clinical study to provide a good "guesstimate" for a starting pressure. But if you have an APAP that records full efficacy data, you will be able to use that data to get help from the forum on how to start tweaking the settings until you get your PAP therapy optimized.

Best of luck.

[robysue]

and you may be able to find such a machine at somewhere like Secondwind.com, Craig's list, etc... but need to know more about machines and how to set them up before shelling out a couple of hundred.

and

Some people skip all that and obtain their own auto adjusting CPAP machine. They are very affordable on Secondwind.com or Craigslist,

I believe that Secondwind requires a script to buy a machine from them. Their web page says:

If you are unable to purchase a replacement CPAP or BIPAP machine because you have lost track of your prescription, have an out of date prescription, or 'pre-existing' clause in your policy, we may be able to help with our physician authorization. (http://secondwindcpap.com/)

[herownsociety]

I generally do not find doctors particularly engaged, knowledgeable or helpful anyway. I would appreciate well intentioned advice. The specialist said it was unlikely he would put me on any type of machine anyway after reviewing my symptoms.

This is a particularly interesting comment for a sleep specialist to say: Most sleep specialists now start people on CPAP if they have any kind of daytime symptoms and a sleep test verifies that there is mild OSA, and most sleep specialists will start people on CPAP if a sleep test reveals moderate to severe OSA regardless of whether the patient has other symptoms.

It would help us help you if we knew why the specialist said it was "unlikely he would put [you] on any type of machine anyway after reviewing [your] symptoms." Did he indicate what he WOULD be likely to suggest instead of CPAP? Did he say why he would suggest it?

It's a safe assumption that he felt my symptoms were mild and he didn't want to prematurely scare the bejesus out of a relatively young and health individual that they might have to sleep hooked up to a machine for the rest of their life.