Sleep Study DONE

[Sangye]

I finally did a sleep study at JHU last night. I've been trying to do it for almost 2 years but haven't been able. JHU is almost 2 hours away and it's hard to drive there at night and back again very early in the morning. And if I haven't slept well, it's a nightmare scenario. I also had to arrange someone to stay with my dogs and bird--not always easy. I was in bad shape all day yesterday but I kept telling my body, "Oh no you don't. You're GOING."

In my early days with Wegs I had a very bad sleep study experience in Arizona at a private facility. They had no idea what they were doing and the place had a creepy vibe. It was located upstairs from a gun store! When Dr Seo first asked me to do one 2 years ago I told him about the Arizona center. He laughed and said, "This is Johns Hopkins. We don't have gun stores." :laugh:

It's a great facility-- very conducive to sleeping. I was unusually comfortable for the first few hours and slept some. My body temp stayed normal and I didn't catch myself snoring. I just felt really good. I couldn't figure out why! Finally I noticed the head of the bed had been left a bit elevated accidentally. I lowered it because I wanted it to simulate my own bed. Sure enough, I got instantly hot and flushed, heart racing, felt pressure on my neck and chest, felt anxious and started to snore even while awake. I kept alternating between hot and cold, just like at home. I was so uncomfortable that I don't think I fell asleep again.

When they came to get me up in the morning I told the nurse what happened. I was worried they didn't get enough data on me. She said "Don't worry, we got a lot of data on you." I assume that means they counted a lot of episodes of sleep apnea and not just "Wow, you say funny stuff in your sleep." :w00t:

I have an appointment in a month (!!) to discuss the results but will ask Dr Seo if he can read them sooner. If they do find sleep apnea, they have you come back for a second night and try different CPAP pressures to find the right one. It takes a month to get each appointment, so I think I'd be looking at January if that happens. (And I don't know if I'd have to wait for another Results appt after that--oy!).

Ever since I gained all this weight around my neck with the original pred, I feel like I'm being strangled at night. It's only gotten worse with more pred and more weight gain. I think that having the bed elevated sent the fat south so I could breathe.

I'm tempted to elevate the head of my bed meanwhile. Two concerns I have are:
1) It could cause more swelling in my legs
2) My bed frame is wooden. Will it put too much stress on it? Any physicists out there?

[Jack]

I'm so pleased for you Sangye. I know how much you must have hanging on these results.

Yes, yes, elevate the head of your bed. It is plenty strong enough I'm sure and you only need to put some old books or something under the legs. Have you tried using more pillows? Because I have had sinus issues in the past, I can now sleep sitting up with a small mountain of pillows. If you should get more leg troubles, you can always go back to the way it was and hopefully no harm will have been done.

Hope this all turns out well!

[pberggren1]

Sangye, glad to hear that you survived the sleep study. I keep my bed elevated slightly at the head. But then again my bed is a hospital bed. But I am sure that Jack is right and you can elevate it with old books or as my grandma did with old paint cans.

[Psyborg]

I'd think you could elevate the bed. Heck maybe even elevate your box spring /mattress and leave the frame level. Depends how much you are looking to elevate.

But I would think if you elevate a bunch it might lead to some swelling.

At any rate hopefully they'll be able to get you sleeping better soon.

[Sangye]

Thanks, guys. I don't want to add pillows because it's really bad for your spine to be bent like that. I just couldn't believe how much better I felt and how instantly awful I felt when it was flat.

I'm going to try elevating the bed. If apnea is causing the leg swelling, maybe it'll actually clear up with the head elevated. Everything else about my case is paradoxical, so why shouldn't that be, too? LOL

[elephant]

Sangye elevate the bed, you will breath better and feel better in the morning. Actually the swelling might go down a little, because your heart/lungs will work better.

[Sangye]

I just propped it up about 1-1/4 inches but I think it will have to go higher. I think it's worth a try. If my leg swelling increases I can get it back down with lasix.

I looked online and have seen info about "Incline bed therapy" that is exactly what I experienced--no snoring, didn't have to get up to use the bathroom, felt good, etc... They actually say it can help with leg edema, too. Wow, this would be pretty awesome.

[Fran]

I hope something really good comes out of this for you Sangye. I am going to try this myself ( elevating the bed) - I knew all those old paperbacks would come in handy someday. !http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Sangye]

Here's a good article about sleep problems and the trouble they can stir up. I didn't know about the increased risk of diabetes, but it makes sense.
Snoring, sleep problems may signal heart risk - CNN.com (http://www.cnn.com/2010/HEALTH/11/30/sleep.problems.health/index.html?hpt=T2)

[Jack]

How did the bed elevating go Sangye. Are you sleeping while standing upright yet? ;)

[Sangye]

ROTFL!! After a couple nights I put it flat again because my feet were staying more swollen than usual. Once the fluid gets in there it doesn't leave easily and they get very red, hot and painful. Last year I wound up in the hospital when it turned into a very painful cellulitis.

I decided to just wait for the study results and see what to do. The other day on Twitter my lama and I were talking about CPAP masks and nose cannulas--how uncomfortable they are. I told her at this point I'd sleep with a salmon in each nostril if it would fix the fatigue and edema. :w00t:

[Jack]

Yes, give it a try! You never know....... :biggrin1:

[Sangye]

LOL Can you just picture my next appointment with Dr Seo? "How are you sleeping these days?" "With a salmon in each nostril." :ohmy:

[jola57]

A friend has CPAP and even had it in the hospital after a hart attack. I don't know if you can get a smaller machine but this one looked big and uncomfortable, it also made a lot of noise

[elephant]

I think they have smaller CPAP machines and not that noisey.

[marta]

Yes, give it a try! You never know....... :biggrin1:

take a picture too please....:laugh:

[Brooke]

Sangye, glad you were able to get your sleep study done. My dad wants me to elevate my bed as well. I just need to do it! I also have a wooden bed.
Would it help if you were to elevate your feet as well?

[Sangye]

LOL If I elevated the head of my bed and my feet I'd be sleeping in a V-shaped position! :ohmy:

[Brooke]

LOL, well I didn't mean to quite that extreme! That sure would look funny though, hahaha! I think I am thinking of more like a hospital bed, but then I guess that is more the knees elevated. So.... maybe that wouldn't work? :)

[elephant]

Sangye if you get yourself in a V shape it will all into your middle. :rolleyes1::biggrin1::flapper:

[Sangye]

LOL! It's already there. *sigh*

[Jack]

I know you are concerned about the affect on your back, but I think that the sort of thing suggested above is well worth a try. I slept sitting up for a very long time when I was having sinus trouble and still use three pillows. I also had my legs elevated after my fall this year, but none of this has been anything but helpful to me.

[Sangye]

Sleeping with the head and feet elevated is a very unhealthy position to sleep in-- not only does all the weight sit on the pelvis and the head tend to slump too far forward, but all the organs are compressed, too. That causes all kinds of short- and long-term problems. Besides all that, I'm a side sleeper!

It's interesting, because edema is supposedly improved by elevating the legs. For whatever reason, it makes mine worse. Several days ago I dropped a dinner plate vertically on the top of my foot. (The plate didn't break, thankfully) SO painful. It wasn't that bad for the first day or two but then swelled more and more and got red and hot. I'm fairly certain I didn't break it. I think the extra fluid from the injury got trapped along with my usual edema. It was getting so bad that 2 nights ago I finally slept with my legs elevated all night. I snored a lot more and my legs were no better for it! I went to the pool yesterday and walked a lot in neck-high water to mobilize the fluid. It was pretty painful at first but it eased up. The swelling went way down almost immediately. Whew!

[Brooke]

Sangye-
If the way you sleep doesn't help your edema any, can you still sleep with your head elevated so at least you can get some good sleep at night? Are you able to go to the pool everyday to help your edema?

[Sangye]

Elevating my head seemed to increase the fluid in my legs. I've been getting to the pool twice a week for 7 weeks. I'd love to go more often and have been trying to get to 3 times a week, but I'm too wiped out. If I could I'd go every single day.

[elephant]

I agree Sangye if you could go every day I think your legs would be less edematous. That is great you go twice a week!

[Sangye]

I've got a plan to work up to 3 times a week in the pool and then see if I can start to add in some land exercises. The indoor pool facility I go to has a small exercise room. I've got my eye on the reclining bicycle.

[elephant]

I'll hold the reclining bike for you!

[Sangye]

LOL It might be awhile. I'll send out for pizza for you. :tongue1:

[LisaMarie]

Have u all tried wedge pillows ....it may help...i get a night oxcemetry to see if i am having any apnea since i started snoting so bad...good luck all....ps i want a pic of the fish up the nose..lol

[Sangye]

Can't sleep on your side with wedge pillows....

[pberggren1]

Sangye, what about those memory foam pillows that are preformed? Are they any good to use at all?

[RCOSSIO]

Sleep Study...now imagine if they were able to read your dreams as well and all you could think of was this....what would Dr Seo say about that?????

http://youoffendmeyouoffendmyfamily.com/wordpress/wp-content/uploads/2010/08/jean_claude_van_damme_diaper.jpg

[julia]

if we had dreams filled with that maybe the pred would not stand a chance of keeping us awake.

[Jack]

I know what you mean about being a side sleeper, I used to be one too. However, some of the problems that I have had over the years have taught me that it is possible to change when presented with no alternative. ;)

I love the way this thread is bombarding you with advice! :flapper:

[Sangye]

Jack, yes it is possible to change. I unlearned stomach sleeping that way. However, back sleeping is actually more likely to cause sleep apnea and a host of other problems than side-sleeping. Side-sleeping is by far the safest and healthiest sleep position. Laying on my back for just a short time gives me a headache and back pain-- not a good compromise for me! I also notice that I snore more loudly if I'm laying on my back and that it starts immediately-- proof that it's causing breathing difficulties for me.

The point that is being overlooked in this thread (ahem) is that it is very harmful to use wedge pillows. That isn't incline bed therapy, which has been shown to relieve sleep apnea. Incline bed therapy means the entire bed is slanted downward. Wedge pillows create an unnatural angle in your center-- whether you sleep on your back or your side. Sleep apnea docs specifically warn against using wedge pillows. And chiropractors agree.

[Sangye]

Richard, LOL-- but those days are over. Vows is vows. :biggrin1:

[RCOSSIO]

Well then I hope this helps...

http://1.bp.blogspot.com/_mfv3gZMn9TA/TCAxp1zPbvI/AAAAAAAAACg/RDP_v9uhaIE/s1600/counting-sheep.jpg

[Sangye]

Zzzzzzzzzzzzzzzzzzzz..... (it worked!)

[jola57]

Ohhh that is so sweet Richard. Sangye, my hubby keeps telling me to sleep on my side (that is my preffered mode of sleep anyway) to the point that he whacks me in the middle of the night because of my snoring. Being an anesthetist he wants my head back and neck extended to keep the airway clear and unobstructed. It is a good theory but because our muscles are much weaker then normal this is just not practical and does not work. I sleep on my side with a small light down pillow and wear a regular $1.99 mouth guard. I would not buy the mouth guard that pushes the lower jaw out, it might work but it also over time dislocates the lower jaw. Hubby says that the guard helps somewhat and I don;t snore as violently.

[Sangye]

Jolanta, you should not be sleeping with your neck extended. That's an unnatural position and doing it puts unnatural pressure on your cervical and upper thoracic spine. Over time you will damage your neck and any part of the body will suffer as a result (all nerves to the body have to travel through the cervical spinal cord).

Have you done a sleep study?

[jola57]

No I don't sleep with my neck extended just for that reason, I have a soft pillow for a natural comfy sleep. And no I have not had a sleep study, the waiting list is 3.5 years. I know I snore, I know that I have a sleep apnea, so all the bad stuff that goes with it, and wearing a CPAP - well just plain don't want to- and I'll just muddle thru as best I can for now.

[Sangye]

I had my appt today with the sleep study doc to discuss the results. It was totally weird, not like my usual JHU docs.

Apparently I stopped breathing 45 times/ hr but only during REM sleep-- normal and otherwise no sleep apnea. He blew off my comments about the problems with the test. He said having the bed inclined wouldn't make a difference and there's no evidence that it helps. I don't care if there's evidence or not, I know I can't breathe when I'm flat and I could breathe when I was on an incline that night.

I explained how I put the bed flat a couple hours before the study ended but didn't sleep much more because I was so uncomfortable. He said it was long enough to see apnea. It was 2 hrs at the most, and I only slept for a small part of that. That seems ridiculous to me. I asked for a repeat study. He doesn't think it'll be different and said Medicare will probably only pay for one a year. I called them-- no rule about it as long as it's documented as medically necessary.

I asked about inclining my bed at home--what I could do about the increased leg edema. He had no idea, wasn't interested in talking about any of it. It was a really frustrating visit. I think he planned to just say "You don't have sleep apnea" and didn't give a hoot about anything beyond that. I emailed him and am waiting to hear back. I asked Dr Seo to help, but he wants to leave it up to the sleep doc.

I'm trying not to go down the road in my head--just wait for his reply.

[pberggren1]

Sangye, how frustrating! Is there a different sleep doc you can see? What does Dr. Seo think about the edema?

[jola57]

What did he say about snoring, or did you even had enough time to snore, and was this guy a real MD?

[Jack]

I've seen docs like that in the past - totally frustrating when they don't want to engage in discussion. They seem to have closed minds, little interest in the job and may only be in it for the money. :mad1:

Last time this happened I asked for a transfer to a different doc and I think he was only too pleased to see the back of me. (didn't get much more joy from the new one unfortunately :( )

[elephant]

Geez Sangye sounds like you sleep doc was a sleep! Wondering if you can go somewhere else to get your sleep study done.

[Sangye]

Phil, Dr Seo thinks the edema could be caused by sleep apnea. We've ruled out everything else. Since I also have relentless fatigue and know that I snore badly, there's a very good chance that it's sleep apnea.

Jolanta, I know I didn't even snore. That's the problem. I snore so loudly, and I often snore even when I'm not fully asleep. I said at the time of the study that I hadn't snored. Sure enough-- study said I hadn't, or that it was very mild.

He told me to call Medicare and ask if they'd approve another study and then to email him. So I'm waiting to hear back from him. I think he was hoping Medicare wouldn't cover it so he'd be off the hook. It comes down to if he's willing to say that a repeat study is medically necessary.

I don't want to go to another center. I already had a hideous experience with one in Arizona a few years ago. The one at JHU is awesome except for this doc. Just hoping that he writes the stupid order and lets me do another stupid study.

[Brooke]

Sorry you are so frustrated Sangye!! Is there a diff doc you could ask for? I would say something if I were you, tell them what you told us. Maybe he was having a bad day or whos know what. That doesn't excuse his attitude but you never know.
Hope you get some good answers!!

[Sangye]

Yay! Got an email back from the doc with instructions to his nurse to schedule me for a repeat study. Hot diggety. Hope I sleep and snore like a sailor this time. :w00t:

[drz]

Yay! Got an email back from the doc with instructions to his nurse to schedule me for a repeat study. Hot diggety. Hope I sleep and snore like a sailor this time. :w00t:

Good lesson for all of us to remember-- the squeaky wheel gets the grease. CONGRATS to you!!!

[Sangye]

Yes it was definitely a good example of a squeaky wheel. Also, as hard as it was, I began and ended my email to him by thanking him for meeting with me. It's hard to say no to someone who has expressed gratitude to you. :wink1:

[Jack]

Result Sangye! :)
Must have worded that eMail in true diplomatic style.

[Sangye]

Yes I did! It's good practice, you know? Not only was I more likely to get the result I wanted, I actually calmed my mind down. I was willing to hear his side of it and accept the outcome. It's also very good to sign such things "Respectfully."

[elephant]

Glad things worked out for you Sangye!

[jola57]

How does it go again..."you gather more bees with honey..." Congrats Sangye, maybe this time it will be better and you actualy do get to sleep and show that smart @$$ what the problem is.

[Brooke]

Happy everything worked out :)

[Sangye]

How does it go again..."you gather more bees with honey..." Congrats Sangye, maybe this time it will be better and you actualy do get to sleep and show that smart @$$ what the problem is.
ROTFL :laugh::laugh:

[Sangye]

Tonight is the big repeat sleep study. Man, I hope I sleep. I've been having awful low back and hip pain all night the past few nights and it's kept me awake. Three nights ago it totally vanished for one night-- no idea why! Just hoping that happens again tonight. And that I snore like a sailor. :wink1:

[Jack]

Good luck Sangye! :thumbup:

[Psyborg]

Good luck to you, hopefully mister Sandman will pay you a visit :)

[drz]

Tonight is the big repeat sleep study. Man, I hope I sleep. I've been having awful low back and hip pain all night the past few nights and it's kept me awake. Three nights ago it totally vanished for one night-- no idea why! Just hoping that happens again tonight. And that I snore like a sailor. :wink1:

If you need to take some meds for pain will that screw up the sleep study?
I only did it once but found it hard to sleep with all those wires attached to me and the staff telling me to change my position every hour or two, but I guess there is no other way to get those readings on a person until they come up with some wireless devices.

[Sangye]

Well, Sleep Study #2 is DONE. (Technically it was Sleep Study #3 but maybe I shouldn't count the failed attempt at the Arizona sleep center upstairs from a gun store. Ahem.)

It was... terrible. Having to drive nearly 2 hours at night to get there was really hard on me. Last time the room I was in had a choice between fluorescent lights or a smaller bedroom lamp. It also had an egg crate mattress on a hospital bed, so it was very soft and comfy. This room had only very bright fluorescents and a regular bed with a very firm mattress. Sitting under those lights for the 1/2 hour of wiring up told my brain "It's morning, WAKE UP." The hip pain was way worse on a firm mattress and kept me from sleeping on my sides-- or from sleeping much at all. I slept mostly on my back which I rarely do at home. Anyway, I doubt that they got much useful data. It didn't reflect my home sleeping at all.... Nothing I can do at this point. There's no way they'll let me try again for a long time. I see the doc for the results mid-February.

Meanwhile today I feel predictably lousy. No sleep, pain, getting up 2 hrs too early, getting up and out in a hurry and driving home 2 hrs. Well, I'll recover in a few days. :glare:

[pberggren1]

I'm so sorry the sleep study did not go well. I know how much you were looking for some answers. I really don't know how you do it with all that driving. Speaking of driving my hearing is so bad now that I think I should not drive a car.

[Sangye]

I have friends who are nearly or totally deaf and they drive. But they are otherwise healthy and have also had years to adapt to gradual hearing loss. You may want to ask your audiologist about it. The one who did my hearing tests is a wealth of knowledge.

[pberggren1]

I have friends who are nearly or totally deaf and they drive. But they are otherwise healthy and have also had years to adapt to gradual hearing loss. You may want to ask your audiologist about it. The one who did my hearing tests is a wealth of knowledge.

Thanks again Sangye. I will have to ask my Audiologist about this. I just relied so much on my hearing in the past. And I feel that I am not 100% behind the wheel if I cannot hear other cars coming, etc.

[Sangye]

Oh yeah, I totally understand. Your audiologist might have tips to help you drive or s/he might say you shouldn't be driving right now.

[pberggren1]

Oh yeah, I totally understand. Your audiologist might have tips to help you drive or s/he might say you shouldn't be driving right now.

Right now I have my Dad do most of the driving. I would be totally lost without my parents.

[elephant]

Phil, glad your parents are great help to you. I know this year 2011 is going to be better one for you!

[Sangye]

I see the sleep doc for the results mid-February. I'm assuming he'll say I don't have sleep apnea since I didn't sleep. If he does, I've decided I'm going to get a whole body wedge pillow (http://www.medslant.com/index.html) that elevates the entire torso to the proper degree. Only one company makes them as far as I can tell. (Many companies make small wedges that elevate the shoulders, but that's terrible for your spine.)

Obviously it'd be cheaper if I just inclined my bed. That's not a good option for me, though. I only have a computer chair and my bed to sit on in my basement. I sit on my bed for a few hours a day to do my practice--no other place to do that in here-- and sitting on an incline like that would be awful on my back. Also, I have a wood frame bed and I have major concerns about putting it on an incline (ie, will it break or weaken the frame or legs). My dog Patch sleeps under the bed and I won't take the chance of the bed breaking with him under there.

When I told Dr Seo how much the inclined bed at the first sleep study helped me he encouraged me to try it at home. The sleep doc thought inclined bed therapy is a crock. I can't stop thinking about how great I slept and felt that night, though. I'm voting with me and Dr Seo.

[Jack]

If you slept well during the first part of the first test, I think you should be trying to duplicate that condition no matter what anyone else says.

[Sangye]

Thanks Jack. I'm going to do it. I can't afford a wedge pillow until February but I can survive until then.

[drz]

I see the sleep doc for the results mid-February. I'm assuming he'll say I don't have sleep apnea since I didn't sleep. If he does, I've decided I'm going to get a whole body wedge pillow (http://www.medslant.com/index.html) that elevates the entire torso to the proper degree. Only one company makes them as far as I can tell. (Many companies make small wedges that elevate the shoulders, but that's terrible for your spine.)

Obviously it'd be cheaper if I just inclined my bed. That's not a good option for me, though. I only have a computer chair and my bed to sit on in my basement. I sit on my bed for a few hours a day to do my practice--no other place to do that in here-- and sitting on an incline like that would be awful on my back. Also, I have a wood frame bed and I have major concerns about putting it on an incline (ie, will it break or weaken the frame or legs). My dog Patch sleeps under the bed and I won't take the chance of the bed breaking with him under there.

When I told Dr Seo how much the inclined bed at the first sleep study helped me he encouraged me to try it at home. The sleep doc thought inclined bed therapy is a crock. I can't stop thinking about how great I slept and felt that night, though. I'm voting with me and Dr Seo.

My bed at the nursing home had adjustments to allow it to replicate this type of incline. I seemed to sleep well there on it. The web site doesn't seem to say how wide the pillow is. Would you have to worry about sliding off it or falling off the incline during sleep?

[Sangye]

The pillow is 24 inches wide so should accommodate me just fine. I'm not concerned about falling off it but if someone were, they could put pillows on either side. It's not very high, even at the top of the incline. You can get more specifics about it (like the dimensions) by clicking on the Medslant Benefits link at the top of the page.

[pberggren1]

If I could I would buy you that pillow right now Sangye. I have a hospital bed that I sometimes increase the height of the head.

[Sangye]

That's sweet, Phil. There's a chance I might be able to get it sooner but have to wait and see on some other major expenses first. I'm glad you have an adjustable bed. It probably really helps you with your cough and sinuses.

[pberggren1]

That's sweet, Phil. There's a chance I might be able to get it sooner but have to wait and see on some other major expenses first. I'm glad you have an adjustable bed. It probably really helps you with your cough and sinuses.

Ya, I have been playing around with the different adjustments on it but have found that flat is best, so far.

[stikker]

Did you ever get a cpap machine?? I have a bipap and I love it. I can't sleep without it. You get used to the mask( I sleep with my mouth open so I need a full face mask). It made such a difference in how I feel.

[Sangye]

No, they haven't demonstrated that I have sleep apnea. Sleep study in AZ 2007--failed, couldn't sleep at all. Sleep study in November--failed, bed was left elevated and I didn't snore. Sleep study this week--probably failed, barely slept and slept in different position because of back pain.

[Deanne Hull]

I think I might give this bed elevating a go

[Sangye]

I actually dreamed I was sleeping on an inclined bed last night and it felt good! I think my subconscious is trying to tell me something. Wonder what it is? :wink1: