Still sleeping so much/unhelpful docs

[kteague]

Lovey, do be mindful that docs these days are known to "dismiss" patients. Say what you need to say in nonaccusatory and nonthreatening language. That's why I worded my suggestion as I did - there is implied liability without threat. Also, maybe you could start every day with a call to see if there have been any cancellations for the day - then call again midday. As long as you're out of sight and out of mind, they'll assume you're ok with waiting.

About traveling to be seen, I did that at Cleveland Clinic. Do talk with the facility before making an appointment. It is rare that you will get resolution in one visit. I had a lengthy initial evaluation, but then they told me they wanted to start fresh instead of using the several sleep study results I had brought with me. I would have to be scheduled for a sleep study then have to return to go over the results. It just wasn't practical. In emergency cases (distance was not considered an emergency) everything can be scheduled back to back with a 2 or 3 day trip. Just makes sure your ducks are in a row before you take a long hard trip only to be frustrated by unfufilled expectations.

Hey, if somebody videos that waiting room expose' you could be the next youtube star. Make sure there's no security camera!

Kathy

Kathy

[Slinky]

That oughtta do it, Lovey! After all its been "established" that some people are subject to "sleep sex"!

[lovey]

Actually, I have cried uncontrollably only once at the cardiologist's, my "yell" is about the same as a normal person talking, and has only happened once. 99% of the time, I am calm and cool. And my "angry" letters aren't accusatory or anything. I state the facts and ask for help. I guess I consider them angry letters, because I am angry when I write them. I actually am an excellent writer and handle things well. Half the time though, I don't think the doctors even get the letters. They seem clueless to my attempts to get help when I am with them in person.

Still, this hasn't worked well for me, and maybe I should keep considering my "get naked" plan .
I don't know about being a Youtube star...it might be more of a horror movie to watch me naked

[lovey]

Well, I am no closer to knowing what is going on after receiving the results of the "emergency" sleep study two weeks ago. In fact, life is going to be harder now that I have received the sleep doc's report. The impression states:

Obstructive sleep apnea being controlled completely with the use of BIPAP as opposed to the overnight pulse-oximetry recordings that were done at home on BIPAP that revealed significant oxygen desaturation. There was no desaturation at any time during the night below 90%.

Gee, maybe I didn't destat because they never let me sleep like I usually do and with my usual pressure and positions. The stage results: Stage 1 10.2%, Stage II 71.9, Stage III-IV: 17.9 and stage REM O.OO%. Gee, no REM sleep--and that is not a problem??

What do they think I did on the overnight oximetry test? Mess it up on purpose?? How can they dismiss the pulse-oximetry test in favor of this test, which was far from a typical night for me? They should have done a diagnostic study after reading the pulse-oximetry test, instead of a titration study. On the oximetry test, it showed I was fine for 2 hours, then repeatedly destated for 3 hours, and then was fine for 3 hours. Maybe I have something that only shows up when I am in REM sleep.

I feel so disrespected. "completely controlled"???? That's his opinion. Let's just disregard any symptoms, such as sleeping 12-16 hours a day for the sake of a faulty, and not reflective of my usual sleep, sleep study. I think he wanted to prove that the his opinion of the pulse-oximetry not meaning much, and this test helped his ego by "proving" him "right". Never mind if it was truely reflective of the situation.

I want to be referred to the University of Michigan. My primary doctor is gone until next week of course. I will write the sleep doc, but they never seem to get anything to him. This is slowing down any chance of figuring out what is wrong.

Aaaghh. Any advice what to do now that I have this information??? Lovey

[Slinky]

Lovey, just a thought: when you did the overnight oximetry was it whilst you were using your bi-pap too? Could it possibly be that the 3 hours of continuous desatting that you had a huge mask or mouth leak?

I wish you luck getting the referral to U of M. I wish I had more to offer you. But we seem to be at the mercy of the insurance companies when it comes to getting a second opinion.

[lovey]

Yes, I did have my bipap on during the overnight pulse oximetry test. Yes, it is a possibility that it could have been a huge mask leak. But I was very careful to prevent it, i.e. adjusting my straps tight, etc. I don't think that was the reason, but it is a possibility.

The reason I am angry at the sleep doc, is that he is relying solely on test results, and ignoring all my symptoms. I didn't even get to see him a few weeks ago, I saw the nurse practicioner so the sleep doc may not even know my symptoms. I have been diagnosed with sleep apnea for over 2 1/2 years. In September, I developed all these new symptoms, i.e. sleeping 12-16 hours a day. This was not "normal" for my sleep apnea condition. There is something wrong, and I should be able to get at least a basic diagnosis based on relevent and responsive medical care--not one based on faulty and irrevelent data.

It may not be a terrible medical condition that is causing this...it may be something small. But I need to have it treated no matter what and have an adequate explanation. Another consideration in all of this, is that I am a candidate for lap-band surgery. My surgeon will not do the surgery and put me under anesthesia with not having a diagnosis why I am destating.

I have the best insurance/Medicaid coverage I have had in my life right now, so the financial part is irrevelant right now. I have to live in poverty to qualify for Medicaid, and I pay huge costs for COBRA insurance, but it is actually much easier now to afford medical care than when I was working full-time and trying to pay for everything. I have the time now to work on my health and do what is best for me. I wish my doctors were doing the same--looking for what is best for me. Thanks, Lovey

[kteague]

When I've had sleep studies that did not record time in REM while supine, the summary includes language like "the test was suboptimal" so at least it's acknowledged. I understand your frustration with your doctor lording a test over you as gospel when it was technically suboptimal. Sorry to hear you still don't have answers. Would any of your doctors order a repeat home oximetry to compare to the other results of concern? Hope you get answers and feel better soon.
Kathy

[lovey]

That's a good idea, to do another overnight pulse oximetry test. My primary doctor did look at the pulse oximetry test, and once I explained the basics to him, he got it. He thinks it is an underlying medical condition. I bet I could get him to agree to another pulse-oximetry test. Thanks! Lovey.

[discusdoc]

I think you may be too focused on sleep issues as a cause of your symptoms. With only a very limited knowledge of your medical history (from reading this thread) and not being able to evaluate you in person, here are a few thoughts.

1. Lung disease: Have you ever had pulmonary function testing, CXR, or CT of the lungs? Are you a smoker? Could there be a component of obesity-hypoventilation syndrome? The fact that you had normal oxygenation on the repeat sleep study is reassuring that the problem is likely not in the lungs themselves and more likely an airway obstruction issue.

2. Cardiac disease: You mentioned having a stress test and echocardiogram earlier. What were your valves like? What was your left ventricular ejection fraction? Is is possible that you have congestive heart failure? Have you been having any problems with shortness of breath or lower leg swelling? Could you have obstructive coronary artery disease? Some people don't have the typical symptoms of chest pain and only get fatigue and malaise.

3. Diabetes: are you having frequent urination and thirst?

4. Hypothyroidism: do you have problems with cold weather, brittle hair and nails, thickening of the skin?

5. Vitamin D deficiency: I would ask your doctor to check a vitamin D level. Vitamin D deficiency is very common and I've seen many vague complaints with no identifiable cause improve with vitamin D supplementation. This is now mainstream medicine, not the realm of alternative medicine.

6. Anemia: could you be slowly losing blood from some source? Through periods or in stools? Could you have a vitamin B12, folic acid, or iron deficiency?

7. Obesity: I will just say this, ANYONE can lose weight with enough calorie deficit, or else bariatric surgeries would not work. Many people overestimate their basal metabolic rates and calorie expenditure from activity and at the same time underestimate their calorie intake. I don't say this to be mean spirited or to blame you, if anything it is to provide hope that you can lose weight with the right approach.

8. Medication effects: could your symptoms be caused by a medication you are taking?

9. Psychiatric: you will likely be angered by this suggestion but is there a chance that you might be having depression?

This is a short list of things to consider with your primary care physician.

[pdblues]

Looks like I'm a little late to this thread. I'm having a similar challenge with my treatment. Just 'gotta keep moving forward and make sure you get what you think you are getting from your docs. I've had to change both primary and sleep doc before I got two that I like. Now that I am having other issues, which I don't think are sleep related, no one will listen to me and they keep saying it's because I'm not getting quality sleep. I think I need to be seen by an endocrinologist, so that's where I'm going to go. Luckily my insurance doesn't require referrals.

Keep your chin up (I think that helps keep the airway open too). I hope you get to the bottom of this.

Charles

[lovey]

Thank you, thank you, thank you!!! I have been trying to get my doctors to look into the possibility of an underlying condition to little success. This is mainly due to the sleep doctor insisting it is the sleep apnea, when everyone else, i.e. respiratory therapists, thinks it is an underlying condition. My primary doc always defers to other doctors opinions, so my primary doc hasn't done much. I am going to answer your questions, mostly for my benefit. I am also hoping that if I get a referral to the University of Michigan, I will get a more comprehensive workup than I will get here locally. Again, thanks!!! Lovey

I think you may be too focused on sleep issues as a cause of your symptoms. With only a very limited knowledge of your medical history (from reading this thread) and not being able to evaluate you in person, here are a few thoughts.

1. Lung disease: Have you ever had pulmonary function testing, CXR, or CT of the lungs? Are you a smoker? Could there be a component of obesity-hypoventilation syndrome? The fact that you had normal oxygenation on the repeat sleep study is reassuring that the problem is likely not in the lungs themselves and more likely an airway obstruction issue.

I had a chest x-ray in the ER that was fine and 2 years ago I had pulmonary function testing that was normal. I am not a smoker.

2. Cardiac disease: You mentioned having a stress test and echocardiogram earlier. What were your valves like? What was your left ventricular ejection fraction? Is is possible that you have congestive heart failure? Have you been having any problems with shortness of breath or lower leg swelling? Could you have obstructive coronary artery disease? Some people don't have the typical symptoms of chest pain and only get fatigue and malaise.

I had a cardiac catherization almost 3 years ago and the valves then looked good, but the cardiologist thought that I was headed for trouble, i.e. lots of plaque, etc. In July of this year, My L ventricular ejection fraction was 55%, which is the low side of normal. I have had the clinical symptoms of congestive heart failure since 1/07, but my heart looks fine on the echocardiograms. I am still on congestive heart failure meds. The cardiologists unflattering describe it as a weight issue--that I have a Volkswagon heart in a semi-truck body...that my body is too much workload for my otherwise fine heart. If I was 95 lbs., my heart would be adequate, which I am not! I see the cardiologist late this month, which I insisted on, thinking that this might be a cardiac issue.

3. Diabetes: are you having frequent urination and thirst?

I have had frequent urination and thirst, but I think that is due to the three diuretics I am on. I do have a meter and strips through a friend. I had a few higher readings 140-160 in the summer when I was checking regularly, but mostly I was normal. In the last month, I have tested at 100 twice. It's a good idea to check this, and I'll start testing everyday for awhile to check if it is an issue now that I have these new symptoms.

4. Hypothyroidism: do you have problems with cold weather, brittle hair and nails, thickening of the skin?

I have hypothyroidism and have been on synthroid for six years. My TSH levels have been good. But sometimes, these can be deceiving, so maybe that is an area to look into.

5. Vitamin D deficiency: I would ask your doctor to check a vitamin D level. Vitamin D deficiency is very common and I've seen many vague complaints with no identifiable cause improve with vitamin D supplementation. This is now mainstream medicine, not the realm of alternative medicine.

Good idea. I am living in Michigan, and I have been not been going out in the sun as much as I did in California!! And my job changed in the last year from being outside a lot to being inside a lot.

6. Anemia: could you be slowly losing blood from some source? Through periods or in stools? Could you have a vitamin B12, folic acid, or iron deficiency?

Another thing to check. A weird symptom during this is that the nurses and phlebotomists can't get blood out of me for the last month. The last phlebotomist who drew blood thought that this might be a symptom too. They will wait and wait, and have to go to the smallest needle available to get any. I have had lots of pokes and bruises this past month. I'll try to get my primary doctor to check for the mineral/vitamin deficiences. The only thing the ER found was that I was slightly low on potassium. I had 10 days of potassium and then tested normal. But maybe I need to be on potassium long term.

7. Obesity: I will just say this, ANYONE can lose weight with enough calorie deficit, or else bariatric surgeries would not work. Many people overestimate their basal metabolic rates and calorie expenditure from activity and at the same time underestimate their calorie intake. I don't say this to be mean spirited or to blame you, if anything it is to provide hope that you can lose weight with the right approach.

I have made great strides on healthy living in the past year. Until these past two months, I had been exercising on most days for an hour and a half. Now, I run out of energy exercising after 1/2 hour, but still try to go at least 3 to 4 days a week. I lost 65 lbs from June to early September, and 10 lbs. since early September. I have kept up the diet. I do think I could lose the weight without bariatric surgery, however, I think my best bet to keep it off long-term is to have the surgery. It would be interesting to look into whether the diet is not sufficient to meet my needs, even though it is being supervised by the bariatric surgeon and I am following it well.

8. Medication effects: could your symptoms be caused by a medication you are taking?

Yes. It is a possibility. This originally started in September, when I was put on Prevpac for H. Pylori. That made my daily total 19 prescriptions. I thought that the number of prescriptions then was wiping me out. I am still on 17 prescriptions, which is a lot of variables to consider. I am on 400 mg. of Provigil though, which should be waking me up and not allowing me to sleep this long.

9. Psychiatric: you will likely be angered by this suggestion but is there a chance that you might be having depression?
No, I am not angered. I do have a psych history, including depression. However, I have been doing wonderfully this year. Nothing has changed or I haven't had a trauma, etc. I was taken off some psych meds, i.e. risperdal for my PTSD symptoms, this summer because I have made so much progress. I did have my Effexor lowered by 75 mg. in August, which is something to look into with what is going on. Maybe I am "physically" or "physiologically" depressed after being on higher doses for so long, but don't feel less depressed. Life generally is going well. I get my whole 15 minutes of the psych doc in early December, and he will be a new one who I haven't met yet. Aagghh.

This is a short list of things to consider with your primary care physician.

[lovey]

Keep your chin up (I think that helps keep the airway open too). I hope you get to the bottom of this.

Charles

Too funny!!! Thanks for the laugh.

[lovey]

Just another update. Last week, I wrote a letter to the sleep doctor about the sleep study, and how I did not feel his interpretation of it was correct, because I was kept up all night by differing pressures and having to sleep on my back. The study supports this in that I had zero REM. This is far from a typical night's sleep for me...I have long complicated dreams, so I am in REM, and can sleep up to 14 hours without waking up. Well, the sleep doc stands by his interpretation. Never mind any of my symptoms. I wrote a letter back and faxed it, complaining about the lack of care, his ignoring my symptoms, etc., and how he and his staff have done nothing but delay care for my urgent problem.

My primary care doctor is MIA. He's not been in his office for 2 weeks now. I need him or the sleep doc to refer me to the University of Michigan. If the doctor refers, I can get in within a few weeks. If I make the appointment, I can't get in until March. Nice system we have here in the U.S.

Tired, frustrated, and still scared of dying in my sleep due to this lack of care, Lovey

[nonono]

Gee, maybe you should try to sleep like they have you sleep in the studys at home? if nothing goes wrong when your at the study, why not do that at home? don't sleep like you usually do with your usual pressure and positions. That might be the problem?? have them change that for you?

I don't understand all that is happening to you, but it sounds like you need love.
attention.
The doctors can not do that for you. Maybe you are sleeping so much because you are sad about something in your life other than having to sleep with a mask? messing up things will not make you better, you silly!
You know what is going wrong! better than the Doc. I know you do. why aren't you happy? I don't think it's because your sleeping to much. The reason might be that you are sleeping to much. It sounds like you need something to keep you motivated, make you and your body to want to be awake! talking med and going to the Doc, are not always the right
things to do for you.
Try thinking something nice about yourself. think of something happy. tell yourself that you will and are getting better and that you want to stay awake! Try going about this thing that is going on with you in a new different way? Take a new
approach.
I'm going to pray for you and you might try doing the same!

[lovey]

nonono--you do not have an understanding of what is going on. I wanted to sleep at the "emergency" sleep study like usual. The sleep doc had orders to change my pressures to very low and to have me sleep in positions, such as on my back. I couldn't sleep because of what the doctor ordered. And so many other people thought that this was an underlying condition causing me to destat. He didn't. The sleep doc is not trying to diagnose me, and all he did was try to prove that he was right, and had no regard for my symptoms.

I appreciate your prayers, but I do not need love, I need adequate medical care. It is not psychological. I have been very happy this year, and this was a sudden decline in September with my sleeping so much. I was waking up even with my bipap on not able to breathe, after 2 1/2 years of having no problems. I do wake up and go to work, etc. I can barely make it energy wise after about 5 hours. I start to fall asleep when driving home from work, etc. I have waken up with chest pains a few nights. The oximetry tests showed that I am not getting enough oxygen at night, even with my bipap on; and I am even without a good oxygen level for up to 2 hours at a time with my oxygen level being below 88%. There is tangible proof that something is wrong, but I can't get anyone to call me back or do anything positive. I have an absentee primary care doctor and a egomaniac sleep doc.

So, rather than pray for my happiness, why don't you instead pray that some doctor does something or for the referral to the University of Michigan gets completed.
Sorry to to be snippy-- I just don't understand why you took this position with me.
Lovey