SLEEP STUDIES

[Sue]

I am wondering why so many of you have had sleep studies??? I know my sleeping habits are abnormal but is that reason for concern?? I usually sleep 10 - 12 hours a night and that is not even enuf. If I don't get those hours of sleep I feel miserable like today. It was very warm in our house last night and I kept waking up. My husband offered to start up the air conditioner, I guess I should have let him. Now today I am total symptomatic. My head feels like a ton and I am very, very tired. So naturally its a couch day Your input is appreciated..

Sue

[MightyMouse]

Sleep studies are done to rule out a sleep disorder as the primary cause of symptoms, such as non-restorative sleep, day time fatigue, brain fog, etc. They are typically looking for things like sleep apnea and other common causes of fatigue during the day.

Nina

[Guest GayleP]

Hi Sue,

I had a sleep study done in 1999 for chronic insomnia. It basically just showed that I didn't get restorative sleep. I am lucky if I get 6-7 hours of sleep a night.

I would say I envy you for getting 10 hours a night but you proabably wish you needed less sleep.

GayleP

[Guest tearose]

Hi Sue, I just recently did a sleep study because the brain fog got really thick! I 'll try to share what I know now. Actually, I felt like simple things were harder than ever to learn...I couldn't process new information without a real effort. I was forgetting things, I was flipping letters and words, I was always tired....like now! Anyway, the internist had me do a sleep study and I mentioned it in more detail in a previous post. The results were so unsual that they will be sending them out to Mayo in Minn. for another professional look. I know we all "wake up" during the night and if you wake like me (11 times) it is in the range of "normal". Abnormal is a much higher quantity. (like five an hour) The real important key to why I do not get "restorative sleep" is that I have hundreds of "sleep arousals" during all stages of sleep. These mini second arousals of brain activity keep the brain from restoring cells, organizing information, etc. So even if I "slept" 10 hours it is fragmented sleep and is not helping my brain recharge!

(I do all the proper relaxation and breathing techniques too!) I think that Mayo is going to state what I instinctively feel....the body is trying to regulate the blood pressure while I sleep so I MUST wake a tiny bit to get things moving again and not suffer oxygen deprivation to my organs or my brain. My oxygen levels during the study were good. They don't typically do constant blood pressure monitoring and I bet that would have been a help! I bet they will discover that in people like us, our bodies are trying to self correct a dangerous situation before it shows up as a "lack of oxygen".

I hope this helps a little. Sorry, but I've had a super busy day and can't hardly think anymore tonight! Are you considering a sleep study for yourself? take care, tearose

...I will post more after the Mayo gives their impressions...

[Merrill]

Tearose, I wonder whether you ever heard anything back from Mayo about your sleep study. If you're still checking posts on this forum, will you write and let us know?

I just received the fax of my own sleep study ... I haven't talked with anyone about it yet, so I don't know what much of it means. Among other things, the report says I had 4 apneas and 12 hypopneas.

On the Web I found these definitions and explanations: "Apnea: a cessation of airflow for ten seconds or longer; Hypopnea: a 50% or greater decrease in air flow for ten seconds or longer. Apneas and hypopneas result from upper airway obstruction, either full or partial, or a dysfunction of the body's automatic drive to breathe. Both apneas and hypopneas cause sleep arousals ? moments when an individual wakes enough to resume breathing but not enough to remember any interruption of sleep. Some arousals simply cause the sleeper to shift into a lighter stage of sleep. In either case, the arousal lessens the quality of sleep. Apneas and hypopneas may cause blood oxygen levels to drop."

My longest hypopnea lasted 30 seconds. I also had 71 arousals (an average of 10.6 an hour), and the report states, "sleep efficiency was reduced." It also says, "there are some arousals of unclear etiology" -- which basically means, we don't know why she's wakin' up! However, since the report also says there's no evidence of significant sleep-disordered breathing, increased upper airway resistance, or periodic leg movements, I'm gonna have to guess it's the "dysfunction of the body's automatic drive to breathe."

The report provides lots of other information about time spent in the different sleep stages, sleep efficiency, sleep latency, and so on, but I'm going to have to do some research to figure out what all that means. I hope my doctor can shed some light; I haven't talked to him yet. I hope I can find info about what's normal and what's not in terms of numbers of apneas and hypopneas--what's worth trying to treat and what's just another funky pots symptom to live with. (Tearose and others--please send URLs if you found any web sites relating to sleep that were particularly helpful.)

Hope all this info hasn't put anybody to sleep ... Or maybe I do!

thanks,

m

[Guest tearose]

Okay Merrill, that's one way to force to put down my boxes and force my brain to work and post! I do read posts when I can. I have limited energy...these days are filled with packing the house up, moving out early July, and we just took one son off to a 4 week summer program today... anyway, I'm always here in spirit and when I can I post...thank you for remembering me!

Sue and all, I do not get restorative sleep as I discussed in my earier post. The specialists here where I live know that the hundreds of arousals I experience is "most probably" my body and brain working to keep blood from pooling while I am sleeping. They are very puzzled and wonder if I was also dumping norepinepherine during sleep to make this happen. I still have not had any feedback from the Mayo Clinic...I may just have to go out there again and make my request while they can further evaluate me. My primary care taker and I were just talking about re-sending the request to Mayo. I believe that the field of dysautonomia is so new that I must be persistant but understanding. I felt that all the doc's at Mayo were really quite willing to get an accurate diagnosis but they haven't done much research on dysautonomia and documented effects on sleep yet. Once again, when I hear something I will certainly share it here!

I have done reading while surfing the net and most serious sleep problems which are NOT apnea are not very pleasant to read about. The literature is suggesting that some neurological disorders show up as sleep problems in the earliest stages. I did't catalog them but when I come across them in a bookmark folder I'll forward the addresses here.

I apologize for not being more active on the board these days. I am just so wiped out!

Wishing everyone peace and strength, I miss you guys, love, tearose

[migraine]

Hi Sue:

I am still waiting on the results of my sleep lab. Before I had kids I slept about 10 hours a night with a 2:30pm nap each day. My husband thought I was nuts. Now that I have kids I sleep about 7-8 hours a night with no naps and am still tired. Forever, doctors have told me, "What do expect with 3 kids." I am so tired now, that they decided to take notice and do some researching.

My completely non-medically educated opinion is that this is related to POTS. In my case, I'm not even sure I have sleep apneas, but I think my BP goes down so low at night that (even though I am still breathing) I am not getting enough oxygen to produce a restful night's sleep.

This has been going on since I was a child. It is extremely difficult to wake up in the morning and I am usually a little sick with a headache. I just think there has to be a link...and because so many of us on this forum have been sent to sleep labs...it must be another POTS symptom.

We'll see!

P.S. My big brain fog is vocabulary words. I'll be in mid sentence and have to point to something like a t.v. or couch because I can't remember the word for it. I work with several very intellectual people and I can't stand sounding like an idiot!

[migraine]

Alas...the results are in. I have sleep apnea. I guess I stop breathing about 18 times per night. They are only for a second and then I kick back in. I really didn't think I had this...but here I go with yet another thing wrong with my body.

Now I have to have a CPAP which I am not looking forward to and have to jump through circles with my insurance company. I am so sick of having all of these strange things wrong with me. I asked someone who has a CPAP if this really improved their sleepiness during the day and they said, yes, it really does help. We'll see...what a pain!

[Ernie]

Hi Migraine,

My nephew uses a CCAP and he says he sleeps much better with it and he has more energy during the day.

Good luck with the new equipment. I hope the insurance company will be "nice" with you.

Ernie

[Merrill]

Hi Jennifer/Migraine -- just saw your post that you got your results back ... did you see a print out of your report? And it showed obstructive apneas--not central apneas like mine? (Obstructive can be treated with cpap; no treatment that I now know of for central apneas.) Did you have any hypopneas? (I love saying that word.)

Just fyi--I did a whole bunch of Web searching a few weeks ago for stuff on apneas, and found lots of information. You may want to do the same. Apparently, many women develop obstructive apneas during the 2nd and 3rd trimesters of pregnancy; maybe you're in that group and your sleep will naturally improve after you deliver? Hope so! (You might try a google search for obstructive apnea and pregnancy and see what you can learn.)

I've heard too that the cpap takes a bit of getting used to, but it definitely solves the problem! Good luck, and good night.

Merrill

[migraine]

Hey Merrill:

The nurse that read my results was very nice, but I could tell she was in a hurry. I really didn't get any specifics. Maybe the next time I actually go to my cardiologist he will give me a copy.

She did mention something about a quick increase in weight gain. I think my symptoms are definately worse because I am pregnant, but I am guessing I have always had this. I have been snoring as loud as an old man since I was a toddler and have always had sleep issues. The lady at the insurance company said someone will set me up with my machine and probably after I deliver it will need to be readjusted and turned down.

Here's a couple funny things...I had a follow-up appointment with my neurologist yesterday. Appauled by my weight, I stopped looking at the scale at each doc's appointment...I don't even want to know! Apparently I weigh the same now as I did three months ago. I have a huge belly full of baby, so the doctor can only figure that even though the baby has grown...I have lost weight - sounds great to me! He was just concerned that I was dieting or something. Not really, but that inspired me to start walking again and I bought about $100 worth of healthy food - no McDonalds today! It's amazing what a little possitive reinforcement will do.

The other thing that scared me a little was his sudden concern about my delivery. When I first saw him 3 months ago he said not to worry about the delivery and he and the cardiologist would would be on call if anything happend. After reading the sleep apnea report though (and maybe doing a little further research) he and the cardiologist would like to be notified and on stand-by when I go into labor. He said he is not concerned, but would like my heart monitored after delivery. I guess better safe than sorry.

The lady at the insurance company actually has a CPAP. She said it's a little like sticking your head out of the window of a moving car and breathing the air. I'm sure It'll take some getting used to. So now do you think my POTS symptoms are worsend by the newly diagnosed sleep apnea?....or do you think my POTS symptoms might assist in causing that sleep apnea? - that is the question????

[Merrill]

Want me to venture a guess?

I've read quite a bit on obstructive apnea and the little bit I could find on central apnea on various web sites recently--there's a whole lot of good information out there.

Obstructive apnea (the kind it sounds like you've got) is kind of a mechanical problem...and it's not at all affected by the autonomic nervous system. The POTS isn't causing your obstructive sleep apnea. (And based on what I've read, changes in weight--especially in pregnancy--contribute to a worsening of obstructive apnea.

As for the apnea worsening the pots symptoms ... hard to know exactly! When we're beat, we're beat...and it almost doesn't matter whether it's because we're not getting enough sleep or because our bodies are working harder than other people's to stay upright, in balance, etc.! The best you could probably do for yourself is what you're already doing: eating right, taking your vitamins, getting as much rest as you can (sleeping on your left side is best for you and baby), and getting some regular exercise, like walking etc. The CPAP machine should help you a lot, once you get used to it! It'll keep that air flowing all night long.

I'm going to the neurologist who read my sleep study tomorrow, and I'll ask some questions and get some details about my results. If you sign a release, you can have the testing center where you had the study done fax or send you the final report. I found that report to be very informative and intersting--even if it prompted more questions.

Good luck, good sleep, and good third trimester!

Merrill