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Sleep Study


Ernie
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Hi ,

I just got back from my sleep specialist.

My diagnosis: Upper airway resistance syndrome. Do any of you know what that is?

Of the 6 hours that I was connected I slept 2 hours and did not have any REM sleep.

I have to go back for 2 other sleep studies because this one was not conclusive for sleep apnea since I had no REM sleep. One of the study will be the regular night study and the other will be done during the sleep. The doct asked me if I could sleep during the day. I told him that I could give it a try. So I think I will have it in about 2-3 months.

Ernie

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Thanks Nina for helping me with the search.

The articles you found me were very interesting. I found out that this disorder officially exists since 1993. At least there is a name for what I have! and it did not take 30 years to figure this one out! ah! ah! ah!

The treatment is CCAP machine. So I will know after I redo the study if they will prescribe the CCAP machine.

Good night

Ernie

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Hi,

I have been doing a little research and found some of the symptoms related to this disorder: The functional somatic syndromes (9-11) include chronic fatigue syndrome, (12) fibromyalgia, (13) irritable bowel syndrome (IBS), (14,15) migraine/ tension headaches, (16) and temporomandibular joint syndrome. (7,17,18) In addition to a common symptom of excessive sleepiness/fatigue, these syndromes feature the following symptoms/signs: sleep-onset and maintenance insomnia, unrefreshing sleep, EEG evidence of sleep fragmentation, bruxism, muscle pain and tenderness, heartburn, abdominal pain/ urgency, diarrhea, headaches, depression, and orthostatic syncope.

I'll keep you posted if I find anything relatied to dysautonomia.

Ernie

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Ernie,

I may be mistaken, but I thought that orthostatic syncope is the kind of fainting people with dysautonomia experience. Also, there seem to be a lot of links between chronic fatigue/fibromyalgia and dysautonomia. Maybe this is one of them. I wish you the best of luck in your upcoming tests, and hope that they'll soon be able to give you a treatment for this.

B'Ahavah,

Ayelet

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good grief ernie! another sleep study to go through? wasn't one enough? that is definitely no fun...and to have to wait so long to get another one done and get answers...

do you have the peanuts/charlie brown in canada? that is where i get my good grief expression from. i just love the peanuts!

anyway...your post to me the other day was right on...thank you.

i do not know anything about the sleep study results...but at least you got SOME information from the test...b/c i know it wore you out and was such a big ordeal. no food, no shower, cold, etc. etc...

speaking of sleep...i really hope i get some tonight b/c last night i was peeing every two minutes and didn't get any sleep. okay, every two minutes is an exaggeration...but it felt like it!

goodnight!

emily

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Guest tearose

Ernie, could you please just explain to me one thing...do you have any treatment that can help you sleep better now? I am hoping you don't have to wait 3 months to try the CPAP. If it could be helping you to sleep better now, can't you just try it? You will know after a few nights if you are more refreshed and well rested.

Are you are happy with these sleep study technicians and doctors?

Take care, tearose

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Hi Tearose and Emily,

I got the appointment for my next Sleep Study: March 6-7 and I will get the result on ???????????? May 4th at 3:45 p.m..

I am not happy with our Health System in Quebec but there is nothing I can do about it.

Since I have been diagnosed by Dr Goldstein I have better treatment from the medical community, that is, they treat me as someone who is physically sick as compared to someone who is pretending to be sick. I have had to change all my doctors because the others had such big egos that they were denying the organic proof of my disorder even after the proper diagnosis. The new doctors are nice to me and they believe me when I tell them I will faint if they make me do this or that.

The sleep doctor that I got took me seriously and he was very interested in my case but he is changing department at the end of the month. He is the first in Canada to want to test me. Usually doctors just tell me I have nothing, I am healthy or I need a psychiatrist. So I don't know how the other one will be!

I will have to wait more than 6 months to try the CCAP machine. I am taken a sleeping pill to help me go to sleep and I need to sleep 10 hours per night.

My gut feeling is that the CCAP machine will help me. They don't want to prescribe it before I do another Sleep Study because they still have many unsanswered questions.

Ernie

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Oh, Ernie...

My heart goes out to you! I've had apnea for several years. See my "update" post today for the results of my most recent test.

I'm so sorry you have to wait. I don't go a night without my CPAP. Even with recent troubles tolerating a huge pressure jump, I can't go without it! POTS is so tiring anyway, and then to add sleep disorders... it's rough to function.

I did not realize this waiting issue with Canadian healthcare. Is this only for specialists or for all of medicine? You have national healthcare, correct? That's unacceptable!

Sleep apnea tips: sleep on side when possible, raise head of bed slightly, chin strap (I use one now to keep my chin from dropping open--it's just wide band of soft elastic with velcro. You could make one, I bet), getting as much rest as your can, and of course, all of the other regular healthy sleep habit tips I'm sure you've read about. Please be very careful driving!

Lastly, I was told, too, in the beginning I was just a tired mother. Nothing wrong with me. I wasn't overweight, didn't snore, wasn't 60 and male--a typical patient. Then I found a great family doctor who said, let's get you tested. Actually, they are now finding many children with sleep disorders!

Anyway, best of luck to you. Don't give up and keep pushing to get in sooner. Sleep disorders are not to be taken lightly! Keep us posted.

Ginger

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Of the 6 hours that I was connected I slept 2 hours and did not have any REM sleep.

I have to go back for 2 other sleep studies because this one was not conclusive for sleep apnea since I had no REM sleep.

So if you do not have REM sleep they can not tell if you have sleep Apnea? I am wondering because i did a sleep study once and they told me I do not have sleep Apnea. However I only slept for three hours and I did not have any REM sleep what so ever.

Sue

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I did a little digging... and found my very first sleep study copies. I had asked for copies. I do that now for everything! I paid for them, by golly, and they come in handy to give copies to all of my other docs.

In my 4 hours of "sleep" I did actually have 36.5 minutes of REM (9.2%). I guess I remembered that one wrong (POTS cut it out!). I had 59 apneas during non-REM and 17 during REM. They were all labeled "hypopnea," none of them being central apneas. So I averaged 14 per hour over the 4 hours. The longest (low-oxygen time or hypopnea) non-REM was 17.2 seconds and the longest REM 18.6 seconds. Doesn't that seem weird, like an eternity. It also says I had 117 arousals, some spontaneous and some apneas. Weird stuff.

I also have the one from the second study in which they put on the CPAP and titrate it to the right pressure level to stop apneas. I didn't sleep well with that one, either, (2 hours, 42 minutes) but at least it showed the CPAP to help eliminate the apneas.

I think it's hard to sleep because we're in a foreign place, uncomfortable beds, maybe a bit nervous and of course, we're wired up to a bunch of testing devices and on camera/microphone. No wonder we don't sleep during these studies.

Anyway, I don't have a copy of the one I just had done yet. I will get that soon.

Oh, and Ernie, be careful with the chin strap thing. I realized last night after writing that, I can only use it with the CPAP. With no CPAP I sleep with mouth open because I can't get enough air through nose. If that's your case, maybe chin strap no good idea?

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Hi Ginger,

Thank your so much for the explanation (your case). You help me understand what the doctor told me. I agree with you that 17 seconds is like eternity when you are not getting any air especially that it's not only once in a while but very often per night.

I have 30 arousals per hour when I sleep.

Yes, here we have national healthcare. But the system is worst than your Medicare. We have to wait from 6 months to 24 months to see a specialist. It takes about 2 weeks to see a GP. Then you have to wait about 6 months to have the tests and another 2-3 months to get the result. Then you wait again for the next test. There are not enough doctors and some people don't have any GP so when they are sick the only way to get treatment is to go to the ER. Many doctors don't take any new patients. I am lucky to have my own GP.

The problem is that the government only trains a certain amount of doctors. They decide years ahead how many doctors they will need. They made the wrong forecasts for different reasons, ie the new generation of doctors don't want to work 80 hours per week (they like 9:00 to 5:00 or 2 days a week), etc., so that's why we don't have enough man-power doctors. We also have the cutback in the health system but that's only policital. More and more the government want private insurance to take over the health system so that's why we have to wait. They know that some of us have private insurance who will pay for the testing so if they make us wait long enough we will go privately. There are some tests that you cannot do privately, ie TTT because it has to be done in a hospital setting. I had to wait almost 1 year to get my first TTT and 18 months for another one.

Thanks for sharing the sleeping tips and the chin strap tips. I am new to sleeping disorders and I want to learn as much as possible to be able to help myself improve my quality of life.

I am glad that the CCAP machine is helping you. I can't wait to be given a chance to try one. In the meantime I will do all my best to improve my sleep. I find that I sleep better when I have 3 pillows and I am on my side. I can't fall asleep on my back.

Sue

"So if you do not have REM sleep they can not tell if you have sleep Apnea?" I don't know the answer Sue I just know that this is what the doctor told me. The specialist said that I slept so poorly that the study raised more questions than it gave them answers. That's why I need a repeat study.

I know Ginger had some hypoapnea in the non-REM sleep but I don't know why the doctor told me that. I need to learn more about sleeping disorders.

Ernie

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I just found this under Medscape Medical News:

FDA Approves Tests for Sleep Apnea, Influenza, Testosterone, and More

Yael Waknine

Nov. 16, 2004 ? The U.S. Food and Drug Administration (FDA) has approved an in-home test to diagnose sleep apnea, a diagnostic test to detect and differentiate between influenza A and B, a test that measures testosterone levels as an aid to diagnosing sexual dysfunction and other endocrine disorders, and a knot-less, self-anchoring barbed suture for use in closing dermal wounds.

In-Home Diagnostic Test (Apnea Risk Evaluation System) for Sleep Apnea

On Oct. 20, the FDA approved an in-home system (Apnea Risk Evaluation System [ARES], made by Advanced Brain Monitoring, Inc.) for diagnosing obstructive sleep apnea (OSA).

The miniature battery-powered device measures blood oxygen levels, pulse rate, snoring sounds, nasal pressure, and head position/movement during sleep. These findings are combined with those of a questionnaire designed to evaluate risk factors for OSA.

The approval was based on the results of a multisite clinical trial showing that the accuracy of ARES in diagnosing OSA was comparable to that of laboratory sleep studies, the current gold standard.

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Thanks for the information BuddyLeeswife,

I thought about that but I decided to stick with the lab for 3 main reasons: when I slept at the lab I disconnected the wires on 3 occasions, if I do it at home it's 500$ out of pocket, I might have another sleep disorder that would not get diagnosed with the at-home kit.

I know someone who will be doing it at home in 2 weeks and I will ask her about it. She told me that this test is like a screening and then if they don't find sleep apnea they will do the lab test on her. I'll keep you posted.

Ernie

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Wow--that's wild stuff!

My initial thought is that's an expensive "screening" tool. I would think if a person had enough of the physical symptoms, just skip to the real deal. And, they check so much more than the kit tests during the testing at the hospital and technicians are watching you/recording you.

Anyway, it does sound interesting. Let us know how it goes for your friend, Ernie.

Ginger

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