Competing with sleeping beauty....

[lovey]

Sleeping beauty has nothing on me lately...I am sleeping 12-16 hours a day. I have been diagnosed with OSA for over 2 years now, and am very compliant with using my Bipap. My current pressures are 20/13. I think my AHI was around 81 at the initial diagnosis. I had another tritration study about a year ago and was changed from cpap to bipap.

I am currently on 15 medications! Most of them though I have been on for a long while, so that wouldn't explain why I am sleeping so much. I am on 400 mg. of Provigil a day--you'd think that would keep me awake! I have also lost over 60 lbs. since June. Since early September, I have been sleeping these 12-16 hours a day.

My question is how do you all deal with doctors when they are unresponsive to your needs? Obviously, if I am sleeping so much, something is wrong. But I am being ignored or treated badly. Today, I called my primary care doctor, and talked to the nurse. She was very condesending. She acknowledged that my doctor thought I had some kind of oxygen level problem, but since when I went in for a pulse oxy reading at the office a week ago, and it was fine, so that couldn't be the problem. She pretty much was annoyed as heck at me for asking the doctor's advice. Duh people...a daytime pulse ox was stupid and irrevelant for a person with sleep apnea. I was awake during the pulse oxy, and I let them know when they did it that it didn't make sense to do a pulse oxy -- maybe a sleep study would make more sense? Duh people. She also said the doctor wouldn't probably do anything because he will defer to my sleep apnea doctor.

My sleep apnea doctor is 2 1/2 hours away. I called his office and faxed a note for the doctor over a week ago to no response. I called back today, and they said he did not have any appointments until January. The person set me up with a nurse practicioner appointment in 3 weeks. I couldn't get any other help with this sleeping so much from them, despite my attempts. Even if the nurse practicioner orders a sleep study, which I probably do need, it will take approximately 6 weeks to get a study done at the local hospital.

I am feeling stuck, that nobody cares, and nobody will do anything. And a "cure" or even a diagnosis is months away. Am I to continue to be sleeping beauty until then? It is not much of a quality of life right now. I struggle to even work part-time.

Does anyone have any suggestions on how I could get effective treatment? And how to deal with the doctors? I live in the southwestern corner of Michigan, just above the state line above South Bend, IN. I have Anthem BC/BS COBRA health insurance and Michigan Medicaid. The local doctors, especially the primary care doctors, suck around here. And it would take pages to describe my problems with insurance and Medicaid. If I leave my care to MI Medicaid with a spend-down, I would be dead in months, I am sure.

Any advice is greatly appreciated!!!! Lovey

[kteague]

Lovey, sorry to hear you're still having problems. Maybe some with bipap experience can weigh in. I'm just wondering if your settings are working for you.

You could call your doctor and ask him to order an overnite oximetry in your home. Yeah, that daytime pulse ox was a waste of time. Do you have copies of your sleep studies to look over and see if anything catches your attention? Did either study mention limb movements?

How many of your meds have a "may cause drowsiness" warning on them? Could it be a combined effect? Sounds like you must have some serious health issues going on to be on that many meds. Is it the same doctor who has you on them as it is who blows you off about your sleep issues and ordered a pulse ox? If it is, I'm sorry, I'd have to question the validity of their appropriateness. Sure hope you have other doctors following you too.

I certainly don't know what is making you so sleepy, but if you were my sister or friend, I'd want you to be seen by a fresh set of eyes. Best wishes in sorting things out.

Kathy

[lovey]

Asking my primary doctor for a specific test such as an overnight pulse oximetry might work. If I can get by the nurse to convince him. I have had 5 sleep studies over 2 1/2 years, of which 2 were so badly done that the sleep center refunded the money to insurance...long story. But I remember there was a question with a few low oxygen levels that didn't correlate to the apneas in a sleep study two years ago, but whenever I have brought this up, it is ignored.

Yes, I have other doctors involved because of my medical conditions. I have a great cardiologist, but he is overworked and doesn't help me either. My primary doctor defers to him also. The cardiologist says it is a primary care issue and sends it back to the primary doc. In the end, I end up not treated in the process. This happens with all of the specialists in my care...the primary doc defers, the specialists don't do anything because they are overloaded, and it is referred back to my primary, who then doesn't treat me at all. It has happened numerous times.

Thanks for the advice!

[ozij]

Lovey,
Two additional things you could do for yourself, and they are not dependant on either doctor or nurse practiotioner are:
Buy a Bi-Lever Automatic machine, that will show you if your present pressure is dealing with you breathing disturbance properly

Buy a wrist pulse oxymeter that will let you track you own oxygenation night by night.

All you need for the first is your original script that says you need a bi-level.

By buying the first, and if necessary, the second, you'll be treating yourself the way you deserve, paying attention to your medical complaints and trying to figure out what is going on. No doctor or nurse practitioner can force you to remain ignorant of what is going on in your therapy - and nobody can force you to disrespect yourself or ignore your needs. 60 pounds is a lot of weight to lose and may have thoroughly change your pressure needs.

You need to know what is going on with your therapy. You also need to respect yourself enough to find doctors who will respect you.

Have you had a Holter study - where the track your heart for 24 hours? When did your cardiologist last see the way your heart behaves during sleep?

You need to know what is going on with your therapy.

You also need to respect yourself enough to find doctors who will respect you - and review that 15 medication cocktail you're taking - it may be a good idea to try to find pharmacist who will give input on all their possible interactions.

Since you've already lost 60 pounds, and are waiting for lapband surgery, I assume you are very fat. Obese people, as a group get some of the worst treatment possible from doctors, and - expecially when they're women - have usually internalized society's mesaage that they take up too much place, their body is bad, their phycial needs should be ignored.

LIsten to what you need, and respond to yourself the way you would like others to respond to you.
O.

[bdp522]

This may sound stupid but...Have you tried taking a friend or family member with you to the doctors office?
I was totally ignored by my MD concerning my OSA, until my husband came with me and told the doctor everything I had been saying for years. My Mom was to the doctor a month ago with a list of complaints(she doesn't have OSA) and was basically ignored. I brought her in to the MD and spoke for her listing the same complaints and suddenly the tests she needs are being done STAT. Of course this last month she has deteriorated greatly but that's another story. I have a friend with breast cancer. The doctors ignored her complaints for 6 months. I took her in and asked why no tests had been done yet and what damage was being done in the meantime. She had surgery within two weeks and is still with us today(unfortunately the cancer has spread). My point is sometimes having someone else go with you, someone who will be firm and direct with the doctor may help get things moving. Try to have someone who can follow through with you too. Someone who will say 'what do we do next' or 'how do we fix this' or even a firm 'that's no help, what else have you got' when the doctor seems to be brushing you off. Make it clear to the doctor that this person will be following through with you to be sure you get proper care.
Of course none of this should be necessary, but it seems to work for me.

Brenda

[lovey]

I hadn't considered that it might be a heart problem at night. That is a possibility too. I have had mild congestive heart failure for the last 1 1/2 years. It is not so much the heart not working properly/damage to the heart itself, it is that it can't keep up with my needs because of my obesity. Unflatteringly, the cardiologist refers to my condition as having a Volkswagon engine in a semi truck body. I had a cardiolite study (a chemical stress test) in July, and all I heard is that it was "fine". But yet again, doc, I was awake! A Holter test sounds appropriate.

I am continously fighting for even minimal care because of my obesity and the doctor's discrimination. If I hear "it will go away when you lose weight" one more time, I am going to punch someone. Don't skinny people have pain? In for two months this spring, I was telling my doctor that I was having pain in my shoulder and foot/ankle that was waking me up at night in pain. Again, constant deferral to the sleep doc. He told me at one appointment that if I lost weight I would be out of pain. Finally, I got mad--told the doc that maybe he should look at x-rays (and told him which ones) and stop blaming every single problem on my weight. Gee, when he did actually look at x-rays I had severe arthritis in my shoulder, and achillles tendonitis, plantar fascitis, and heel spurs in my foot. A couple of cortisone shots (plus another discriminatory comment from the orthopedist) and I was in much less pain.

I do make lists when I go to the doctors. I hand the doctor the list, and even then half of the issues are ignored (Say I have 5 concurrent problems--usually 3 will be treated). I will bring up the issues he didn't address that are on the list, and he will ignore my attempts to have them addressed. Rarely, does he actually examine me. They are a "one problem, one visit" office. I can't even get the nurses to write down more than one problem. My friends also have serious medical problems and encounter the same problems with local doctors. I live alone and am socially isolated, which also doesn't help matters.

One other theory is that my medications are causing this. In September, I had H Pyloria and a possible ulcer, so I temporarily went up to 19 medications. I thought that this was causing my sleeping initially in September. But it's been 3 weeks since I went back to my "regular" 15 medications (which I have been on for over 18 months), I am still sleeping. I have consulted a pharmacist, but all she did was give me limited information about each drug, and did not help me analyze what combination of drugs could be causing this. I5 prescriptions is a lot of variables to consider!
I ask the doctors to help me figure it out to no avail...they all prescribe their own, don't consult each other, and just treat symptoms without trying to find out causes of my problems.

With my weight loss since June, things should be getting better healthwise, not worse. Another theory is that maybe my body hasn't adjusted to the weight loss and this is affecting my apneas, etc. Who knows on that one.

Another problem is that I am poor! I went on Social Security disability this year and have Medicaid. There is a two year wait for Medicare with SSDI. I've kept my COBRA health insurance, luckily. No doctor wants to deal with Medicaid (not like I blame them though). I think sometimes I receive worse care because of the Medicaid. I can't afford to pay out of pocket anymore, i.e. for a apap, wrist oxymeter, etc. I even have asked my mom for Christmas to buy me a backup power battery device--sad, I know!!! Last year, when I was working, I paid over $12k for medical expenses. I just can't win....

Keep the advice coming..it is really helping me think this through. Thanks, Lovey

[Bert_Mathews]

All I can say is what happened to me!
I was on Blood pressure meds. and diuretics all due to being OLD / FATTTTTT....
I lost 80# and was sleeping 10-12 hrs. --- Bought a Blood pressure cuff and pulseOx

Results was BP was LOW and OX.... -----CHANGED / Reduced BP Meds and cranked up the CPAP pressure 2-3cm..
went down on sleeping to 8-9hrs.
BP went up BUT I feel better .... The Dr. finely changed my BP script and dosage < Cutting the pills in half was a PAIN >

THIS is NOT RECOMMENDED but Like you I was being treated like a 10 yearold kid with out any brain _ IN REALITY_ I'm a Cheep Oldfart!

BERT

[lovey]

That's another thought... I am on blood pressure meds and diuretics. Maybe my blood pressure is too low now, considering the weight loss and I need an adjustment to my bp meds. Thanks, I will explore that too...

Keep it coming people....this is great... Lovey...