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View Full Version : Nocturnal hypoventilation and sleep studies.



jfkimberly
30th July 2004, 08:30 PM
I was at the Sleep Clinic yesterday having a consult. I am scheduled for a sleep study on Tuesday night. My doctor said he does expect to find something during the study, so he agrees with me that I'm probably hypoventilating at night. I don't know if that increases my chances of surgery or decreases. But it should go to show medical necessity, right? Anybody know?

Carly
31st July 2004, 05:11 PM
Sorry I dont have any answers... but does that mean that you sleep over at the clinic?

Vicki
31st July 2004, 06:44 PM
I think basically all it means is that if they think there's the chance of problems during surgery because of your breathing, they'll put you on a ventilator to be on the safe side. That's what they did with me. As to increasing or decreasing your chances of actually needing surgery in the first place, I guess if they think your curve progressing will affect your breathing it might increase your chances of needing it, but other than that it's probably just so that they can keep an eye on it because it's a known side-effect of scoliosis, and they don't want you to suddenly develop really bad breathing problems.

They'll probably be looking for increase in carbon dioxide levels / decrese in oxygen levels which occur during the deep sleep cycles. I've had sleep studies for years, and at one point I was on the border between being "ok" and having to use a machine at night, which quite frankly, at the time I would have been furious about. But apparently I was the only case in this "middle group" on a study which my doctor conducted, who actually improved, most others stayed the same or got worse. Mind you, most peoples' reasons for the decreased breathing / hyperventilating at night were medical / muscular reasons rather than "structural", like scoliosis.

But yeah, I've had loads of sleep studies, so if you wanna know anything, just ask!

Vicki
31st July 2004, 06:46 PM
and yes Carly, it basically means you spend the night hooked up to a machine monitoring your breathing, and oxygen and CO2 levels, and supposedly have a good night's sleep so it gives an accurate picture of how your breathing is overnight.

In reality, you lie awake most of the night with a buzzing, glowing computer next to you, and annoying things taped to your arm and hands, and sleep for maybe a couple of hours from which they try and salvage as much information as possible.

Kayla
31st July 2004, 09:23 PM
do they give you any sleep aids or anything?

jfkimberly
31st July 2004, 09:36 PM
I'll be unmedicated Tuesday night. My doctor wants to just see what's going on for the first study. If he finds that I'm hypoventilating I'll go back for another study later, in which they'll try different interventions to see what keeps my oxygen up and my CO2 down.

When I arrive Tuesday, they'll do an arterial blood gas (where they draw blood from an artery in the wrist and check it for the levels of various gasses) for a baseline "awake" measure. Then they'll connect electrodes all over to measure my brain activity (I guess), my chest movement, pulse ox throughout the night, etc. When I wake up in the morning, they'll do another arterial blood gas to see if I built up CO2 in the night.

And yes, I'll stay overnight in a hospital room. My paperwork says that it is considered an "outpatient" study for insurance purposes, but I'll sleep there.

Vicki
1st August 2004, 11:14 AM
Oooh, I never had my brain activity measured, it'd be weird to see that considering I never remember dreams. I never got any kind of sleep-aid no, but I don't know whether or not you do elsewhere

tonibunny
1st August 2004, 01:26 PM
I had a sleep study done last year to check for possible nocturnal hypoventilation as I was getting excruciating headaches in the mornings. I only got 1 hour's sleep, as they didn't give me anything to help me sleep, and I am a rubbish sleeper anyway! It turned out that I don't have nocturnal hypoventilation - the headaches seem to be cluster headaches, which are nasty but nothing to do with my scoliosis - but I did find out that my lungs are only functioning at 47%, which is useful to know for the future.

Good luck with your sleep study Kimberley - NH often happens in people who have had their spines fused at an early age, as the volume of the chest cavity is so limited, hence them keeping an eye on Vicki (infantile scoliosis, fused aged 5) and checking me for it (infantile scoliosis from birth, fused aged 10).

jfkimberly
1st August 2004, 08:48 PM
So you have regular sleep studies, then? This is the first for me. I was fused at 11months, and it is well-documented that I have 30-35% lung function... and I had to ask for the study! I'm starting to get just a little bit angry.

Carly
1st August 2004, 08:53 PM
Wow only 30 -35%!!! I dont know mine but I dont have any prblems so I am guessing it is high.... Good Luck Kim!

Little~shedevil~dee
1st August 2004, 11:12 PM
i have allways had problems sleeping since i was young , i feel tired at night but i just cant get to sleep my b/f next to me fast asleep so end the end i give up watch tv untill 4 am or some times 5 am still cant sleep in the end i do get off , but then i get up about 10.00 am and feeling very tired

my b/f talks to me in his sleep its so funny as he dont rember any of it in the morning lol

good luck kim

Carly
2nd August 2004, 12:58 AM
I sleep all the time. And I still constatnly feel tired.i got more than 20 hours of sleep the past 2 nights and still cant stay awake. I dont know what is wrong with me!

DublinPauline
2nd August 2004, 12:47 PM
I haven't had a sleep study done but have had regular lung function and arterial blood gas tests done, particularly since my respiratory problems following a caesarian section four and a half years ago. I have less than 50% lung capacity, after having a fusion aged 13 for congenital scoliosis. My thoracic curve is more than 100 degrees. My consultant has mentioned non-invasive ventilation (bipap type contraption) as a likely option for me in the medium to long term. He painted a very positive picture of how much more energy I would get from giving my lungs a "rest" at nighttime. I'm sure I'll be taking regular sleep studies in time. Good luck on Tuesday night Kimberly. :niceone:

jfkimberly
4th August 2004, 03:17 PM
Ugh. And ow. I'm home from the Sleep Lab, and I feel... well... miserable. Mostly, it's because I didn't sleep well. But also, I had ABGs drawn from both wrists (left one last night, right one this morning), and they are aching terribly. It's so stupid... I feel like crying and I know the pain in my wrists is nothing. I'm probably just tired. I won't have the results until early next week, but I asked Angie if my pulse ox stayed up overnight, and she said that it dropped during REM sleep. But she said it only dipped into the 80s, so that doesn't sound too bad. I'll find out more next week.

For those of you who have never had a sleep study, this was my experience:

I checked in at 7:30 and went to an office to provide my information for the computer system and have my insurance cards copied. Then I was placed in my private room in the Sleep Lab. It was homier than a regular hospital room, but not as nice as a hotel room. I went into the bathrom to wash my face (you're supposed to arrive with clean and dry hair and skin, but I had sunscreen on, so I had to wash my face), brush my teeth, and change into my pajamas to get ready for bed. I filled out a short pre-study questionnaire about my day's activities, my previous night's sleep, and how I was feeling.

Javier came in and took the pre-study ABG, then the I-don't-know-what-her-title-is-so-I'll-just-call-her-Angie came in to hook me up. I had electrodes glued to my scalp, neck, face, chest, and legs, with wires coming off of each one and bundling up behind me. There were two straps, one around my chest and one around my abdomen to measure chest movement. And I had a finger cuff pulse oxymeter taped in place (in case I moved during the night--which I did!).

I was all wired up by 9pm, and Angie did a short test to make sure everything was reading what it was supposed to be reading: I kept my eyes open for a time, then I kept them closed, then I moved them up and down, then I moved them left and right, then I lifted each leg, and finally took a deep breath and held it. As soon as that was done, I was free to go to sleep when I was ready.

I was tired, but I read a book I'd brought with me for about 30 minutes to get really drowsy, then I went to sleep with no trouble. Unfortunately, someone who looked a lot like the woman who put my information into the computer and copied my insurance cards came in at about 2am to adjust my finger cuff. (It didn't need adjusting... I was sleeping on my arm and cut off the circulation, so it was reading quite accurately that there was very little oxygen in that finger. After she left, I rolled off of my arm and the tingling stopped.) Anyway, the light spilling in from the hallway and the disturbance woke me up, and I couldn't go back to sleep for a very long time. At 4am, still without having been back to sleep, I sat up in frustration, and Angie came in to let me know that it was okay if I wanted to end the study because she got enough time before I woke up at 2. But I was still really tired, so I asked her to loosen the straps around my chest and abdomen, and laid back down and fell right to sleep. When she came back to wake me up at about 6:15, I was in a deep sleep and dreaming. I wish I'd had the straps loosened at 2am.

As soon as I was awake, Javier came in to take the other ABG, then Angie did a post-test to make sure everything was still reading correctly: eyes open, eyes closed, move them up and down and left and right, left leg up, right leg up, deep breath and hold it. Then she came back and began the process of unhooking me. As soon as I was untethered, I brushed my teeth and combed my hair, got dressed, and used alcohol pads to remove as much of the sticky adhesive residue from my skin as I could. Then I filled out a post-study questionnaire about how I slept (*chuckle*), and I was free to go.

BlueIce
4th August 2004, 03:40 PM
sorry you had such a bad night, but at least they've got enough information. Fingers crossed for good results!

sins
4th August 2004, 04:13 PM
Try not to feel so miserable Kimberly.I guess that sleep study is something I need to have done myself.If it's any consolation,you're getting excellent medical help and investigations.Hopefully the study will show nothing significant.
Sins.

DublinPauline
4th August 2004, 05:29 PM
Kimberly, that sounds like an extremely thorough test. It sounds promising that your O2 levels weren't dropping too dramatically while you slept.
The wrists can really hurt after those AGBs. Last time I had it done (March of this year), a junior doctor tried for 5-10 minutes to get into my left wrist and eventually drew a tiny amount of venous blood. :-o Another doctor managed to do a quick (but still sore) AGB on my other hand. I had to go to a meeting straight from the hospital and with bandages stuck to both wrists, looked like a self mutilator.:cry:
Good luck with the results, Kimberly.

Marti
4th August 2004, 11:06 PM
I'm sorry you got so little sleep. It's good that your oxyen didn't drop too low though. Good luck for the results!

jfkimberly
6th August 2004, 08:31 PM
Thanks everybody. I can't believe what a baby I was about the whole thing. After my brain surgery 2-1/2 years ago, I honestly didn't feel near as bad as the sleep study made me feel. But I don't know why I felt so bad. Objectively, it wasn't horrible things being done to me (except the ABG in my left wrist). But I came out of it feeling very sorry for myself.

Anyway, I feel a lot better after a couple of "normal" days and nights. After only two days, I am back to my regular sleep pattern, where I'm up until the wee hours of the morning, and I sleep until about noon. All is right with the world.

jfkimberly
8th August 2004, 11:20 AM
*big big deep breath* (I wish I could!)

My sister came in my room today and handed me an envelope from Dr. Goza's office. I assumed it was a letter informing me of the follow-up appointment during which we'd go over the results of that horrible experience they called a sleep study. Instead, it was a full-page-plus-a-little-more long letter highlighting the results and what they mean. This is what it says:


... You of course had a hard time getting to sleep and woke up again during the night around 1:00a.m. You did not fall asleep again until almost 5:00am. Most of the time you were asleep your breathing was fine. You went into REM sleep three times during the study. The first two periods lasted for only a couple of minutes apiece. The last period of REM, which occurred around 5:20a.m., lasted a little longer. Only when you were in REM sleep did we see any change in your breathing. This is a common pattern but I think that your repsonse to this is exaggerated because of the restricted breathing that you have due to your kyphoscoliosis. You developed some hypopneas which are basically episodes when you get a decrease in your air flow through your upper airway behind your tongue. The effect of this is exaggerated because during REM sleep pretty much all of the muscles you use for breathing, except for your diaphragm, quit working. This is a normal situation, but in your case I think the effect is more pronounced. This caused your oxygen levels to drop into the 70's. They should normally remain above 90%. During your REM sleep, your sleep was frequently interrupted. Some people have what we refer to as REM related apnea. Generally these people awaken feeling tired and feel unrested throughout the day. This also tends to cause enough interruption in your sleep cycle to cause your sleep rhythms to become disturbed, which is I think is the case for you. Your oxygen level on blood gases before you went to sleep was 82. When you woke up in the morning, which was just after a REM cycle, your blood gases were 68. Your carbon dioxide level before sleep was 47 and after awakening it was 53. For comparison, your blood gases from 2002 prior to surgery showed an oxygen level of 81 and a carbon dioxide level of 49, so this has really been quite stable.

Based on the breathing pattern that you had during the study, I think that either a CPAP or a BiPAP machine would prevent hypopneas (partial apneas) that were seen during REM sleep. We need to have you come back and sleep another night in the lab with a machine so that we can vary the settings to try and find an ideal pressure for you to use at home. I think you will notice a marked improvement in your sleep quality with this. Obviously we need to have you sleep some when you come back. During your first study I did not leave an order for you to receive any sleep medication as I was not sure what we were going to see. Now, I think it would be safe to give you a mild sleeping medication to help you sleep so that we have a better chance to get enough REM sleep to make observations and adjustments....

Overall, I think that these findings are good news and I feel confident that we can improve your sleep significantly. It may be that if you have surgery on your spine and this improves your restricted lung capacity this could potentially even fix this problem.

I'll post my reaction later. I'm still trying to decide how I feel about it.

jfkimberly
9th August 2004, 01:10 AM
My initial reaction was excitement. I was really pleased to learn that I am not just a hypochondriac, and also that my doctor thinks that the findings are significant enough to do something about it. Hopefully, I'll have more energy and fewer headaches soon.

But then I got to thinking about it. Nocturnal hypoventilation is, to me, an indication that my pulmonary function is declining. If surgical intervention is possible but considered risky enough that they would only do it if there is a medical necessity, then I can now demonstrate that medical necessity. However, if there is no intervention available, then I'm stuck with the knowledge that my lungs are crap, and I have to sleep with the BiPAP or CPAP for the rest of my life. *wrinkled nose*

My othopaedic appoint on September 14th can't come fast enough. *impatient grumbling*

DublinPauline
9th August 2004, 10:06 AM
Kimberly, I'm really impressed with your doctor's approach. That seems to have been a very thorough analysis and he has explained really clearly why the BiPAP/CPAP route will help - oh that all medical people would communicate so well. I must ask my doc about getting a sleep study done when I see him in September. I worry about finding out more information about my condition but I guess it's better to know and deal with it proactively rather than wait for serious irreversible problems to occur.

BarmyArmy
9th August 2004, 01:21 PM
It's great that they seem to be trying to help you Kimberly :-) . I don't blame you for not being to keen on these machines but at least it's some process. I'm glad you got some good news instead of being turned away with nothing.

Lieve
9th August 2004, 01:45 PM
Wow it's great this awful tests are usefully and they can help you, Kimberly. Can anyone explain me what BiPAP/CPAP is?

jfkimberly
10th August 2004, 05:49 AM
Continuous Positive Airway Pressure (CPAP) is a machine that helps a person who has obstructive sleep apnea breathe more easily during sleep. A CPAP machine increases air pressure in the throat, preventing collapse of the airway when you inhale. CPAP also may help your bed partner sleep better.

CPAP is used at home every night during sleep. The CPAP machine has a mask that covers the nose and mouth, a mask that covers the nose (nasal continuous positive airway pressure, or NCPAP), or prongs that fit into the nose. The mask that fits over the nose is used most frequently.

(From WebMD - CPAP (http://my.webmd.com/hw/sleep_disorders/hw48752.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}) )



Bilevel Positive Airway Pressure machines (BiPAP) have two pressure levels, one for inhaling and one for exhaling. Pressure for inhaling is usually set higher than pressure for exhaling. A sleep study is necessary to determine the pressure levels you need.

You may find BiPAP more comfortable than CPAP because you can exhale against a lower pressure. As a result, you may be more likely to continue the treatment.

(From WebMD - BiPAP (http://my.webmd.com/hw/health_guide_atoz/hw48741.asp?navbar=hw48752) )


I will post pictures of whichever I end up getting.

Kayla
10th August 2004, 07:20 AM
wow interesting

jfkimberly
11th August 2004, 07:52 PM
Ugh. I got a call from Denee who runs the sleep lab at the hospital, and I have scheduled my next study. They are accomodating my bad sleeping pattern, so I'll check in at 3am Monday (really, really late Sunday night) and I'll sleep until noon (hopefully). I'm to be given a mild sleep aid at night because they really want to make sure I sleep. I'm not sure I trust them well enough for this...

Anyway, I won't have one before I go to sleep, but I'll have an ABG after I wake up. While I'm sleeping, they're going to try the CPAP and/or BiPAP machines to see what pressure works for me.

Lieve
11th August 2004, 08:05 PM
Thanks Kimberly for your explanation of the different machines. I cross my fingers you'll get better sleep in the future.

jfkimberly
12th August 2004, 01:38 AM
Thanks, Lieve. I hope so, too.

DublinPauline
12th August 2004, 01:37 PM
Yes, best of luck, Kimberley. Maybe you should go dancing on Saturday night so that you're whacked by the time you get to the clinic on Sunday night. :yawn: :-)

mark
12th August 2004, 01:58 PM
Good idea Pauline, if you go clubbing Kimberly you can go straight from the club to the clinic.

jfkimberly
13th August 2004, 04:14 AM
Great idea! Except... well... I don't dance, and I rarely drink. And I don't have any friends 'round these parts. Clubbing wouldn't be much fun, I don't think. Maybe I can find something active, though. My family could go walking, or something. That always wears me out.

Little~shedevil~dee
13th August 2004, 11:07 PM
good luck kim

Lieve
16th August 2004, 11:58 PM
How did the test go Kimberly?

jfkimberly
17th August 2004, 03:00 AM
*smile* Thank you for asking, Lieve. It went so much better than the last one, even though I had the mask over my nose and everything else.

After I was hooked up to all the electrodes, the technician set up the CPAP and handed me the mask. She told me she was going to let me "take control of the mask" and do it at my own pace, because it takes some getting used to. So I took the mask and brought it toward my nose and just about suffocated from the blast of air coming at me, so I jerked it away really quickly. And it was on the lowest setting! She explained that I won't be able to talk when the mask is on my nose because the air will come out of my mouth (I tried it, and it left me breathless), and that I should just close my mouth and breathe as normally as possible with the mask firmly in place. So I tried again, and it was better when I had a good seal around the mask and kept my mouth closed.

She left me alone with the mask for about 15 minutes to get used to it (leave it on for a minute, then take it off, then leave it on for a bit longer, then take it off...) before she started the study. After fifteen minutes, I was keeping the mask on all the time, and I was so drowsy (it was 4:15am by then) that I was starting to doze off while waiting for her to come back.

She came back and gave me a 5mg Ambien capsule (a sleep aid), helped me strap the mask into place, and then left to do the little test to make sure all the electrodes were recording properly. I fell asleep almost as soon as the pre-test was done. The next time I am aware of being awake was at 11am, and light was coming in around the curtains. Denee (the morning technician, and I think the woman who runs the sleep lab) had come in to adjust something and that's what woke me up. I tried to go back to sleep, but I don't think I did. At noon I "woke up" for real, and I felt rested. Really rested.

When I took the mask off, I felt like I deflated. I can't describe it adequately, but I could tell that the pressure made a difference in my breathing. After she removed all the electrodes and I showered and dressed, they drew a post-study ABG (I don't know the results), and the woman who did it was so good! My wrist isn't aching, and I don't think it's going to bruise much at all.

Oh! Denee looked at my face right after we took the mask off, and she told me to tell Dr. Goza that I didn't like the mask at all and she said, "tell him Denee said the mask didn't fit right." Apparently, it isn't supposed to leave pressure lines on my face like it did. I think it was too big for my face so when we tightened the straps to get a good seal, it was too tight. I'm not sure of that, but I get the impression I'll have a different mask than the one I used last night (which doesn't matter to me either way, because I was able to sleep through all the stuff on me).

:bounce:

DublinPauline
17th August 2004, 08:48 AM
Kimberly
It's good that the study went so much more smoothly than the last one and that the CPAP seemed to work so well. :niceone: I can imagine your deflation when you took the mask off but I guess noone's lungs could compare with the action of the CPAP, so that's natural. As you know, a CPAP or BiPap is a possibility for me to "give my lungs a rest" at night which my respiratory physician tells me will avoid me developing pulmonary hypertension and other complications so it's a relief to know that it wasn't too uncomfortable for you.
Pauline

Lieve
24th August 2004, 11:10 PM
I'm glad the tests were ok and you slept well :niceone:

jfkimberly
25th August 2004, 05:15 AM
Thanks, Lieve. It was much better than the first one.

Now it's been a week since the second sleep study, and I haven't heard from my doctor yet. I was really happy with the amount of rest I got and how I felt last Tuesday, and I was actually looking forward to getting my CPAP machine. Now I'm beginning to wonder when I'll get it. I slept very deeply the last two nights, and I woke up remembering my dreams but with the most horrific headaches. I think I'll call Dr. Goza tomorrow.

jfkimberly
27th August 2004, 12:14 AM
I didn't call Dr. Goza's office the other day (I forgot), but someone from his office just called me. She said that the CPAP (continuous pressure) did not work for me, but they found levels on a BiPAP (bi-level pressure) which worked. So they had to order a BiPAP machine, and I am to get it either tomorrow or early next week.

A couple of weeks after I get it, I'll have an overnight pulse ox monitor one night to make sure it's keeping my oxygen up the way it's supposed to.

Marti
27th August 2004, 04:49 AM
That's great to know! It must be nice to know that you'll be feeling better soon.

DublinPauline
27th August 2004, 09:24 AM
That's great news. So will you start using it straight away?

jfkimberly
27th August 2004, 09:40 AM
Just as soon as it's delivered. Hm. Actually, I hope I get to go pick it up. I don't like people coming to my house. Icky.

Lieve
27th August 2004, 08:51 PM
That's fantastic news Kimberly! :niceone:

jfkimberly
27th August 2004, 09:04 PM
Even more fantastic, they're not coming to my house! I'm about to get ready to go. I have an appointment in about an hour to get set up with it. I'll take pictures and tell you all about it when I get home.

Marti
27th August 2004, 10:13 PM
Good luck!

Carly
27th August 2004, 10:25 PM
Good Luck!

jfkimberly
28th August 2004, 04:45 AM
I got my BiPAP machine this afternoon. I'll post the pictures to the Gallery, too, but they're available on my website here (http://www.franzen2004.com/bipap).

Marti
28th August 2004, 05:46 AM
be sure to tell us how it works!

sins
28th August 2004, 09:18 AM
Good luck with it Kimberly.How are you going to set up the machine and adjust it to the required settings?Is it complicated to do this?

jfkimberly
28th August 2004, 01:09 PM
As it turns out, I have no real control over the settings. There are two functional buttons--the on/off switch and the heat (which only affects the humidity level, not the actual temperature of the air). The pressures are determined by a card that is nestled in a slot on the side of the machine, and it is programmed by the medical equipment provider. As she said when I was being oriented to the machine: You can't do anything to mess it up.

I'm off for a very early start to what will probably be a very long day, and I'll want a nap when I get home (I'm waking up at my usual bedtime... that can't be a good sign), but I'll take a picture of the card slot when I get home and have rested. I wonder what would happen if I pull the card out...

Joy
29th August 2004, 12:08 AM
lol. Please don't do that Kim. We love you and wnat you well-rested and healthy!

jfkimberly
30th August 2004, 09:04 AM
Oops. I totally forgot about the card slot. *looks for her camera* I'll post a pic to the gallery after this message...

Meanwhile, I'm a bit annoyed with the woman who oriented me to the BiPAP. She showed me the three sizes for the nosepiece, and she put one on for me and sent the other two home with me. But while I was there in the office, I told her it wasn't sealing very well... she should have fixed it for me!

Anyway, my first two nights with the machine were totally yucky. First of all, as you may know, I'm a bit of a night person. However, I had to get up at 6am on Saturday for a convention. So I tried to go to bed around 11pm Friday night. When I found myself still awake at 1am, I decided that it was not the best night to try sleeping with the BiPAP and I took it off.

I had a long, full day yesterday at the convention. I met the people I was carpooling with at 7:15am, and I didn't get home until after 7pm. Then I had my older sister and her family over (see my nieces here (http://www.franzen2004.com/nieces)!) for dinner, which always means hours and hours of visiting (even though they live just 20 miles away and we see them all the time). Anyway, it was about 11pm before they left, then I still stayed up until my normal 4am (total awake time: 22 hours)... so I figured I'd be able to sleep through the BiPAP with no problem.

I fell asleep fairly quickly, but the nosepiece wasn't very comfortable. I had to pull the headstrap really tight to get a good seal (and you really want a good seal!), so I woke up around 8am with a tingling/numb scalp and face pain from the pressure against my nose. So I took it off and vowed to check out the strap and nosepiece after I'd had some real sleep.

I just compared the three sizes, and held each up against my nose... I've replaced the "medium" sized one with the "small" (which should have been the obvious choice by looking at me!), and it's a perfect fit. I then loosened the headstrap, so I shouldn't wake up all tingling and numb. I expect to sleep quite well tonight, and feel good in the morning. I'll let you know how it goes, but already it feels tons better than it has felt so far.

Pikey
30th August 2004, 11:27 AM
i wake up at 3.15 everyday , it's really annoying . I just put it down to stress but now you all have me thinking .I hope you get some good sleep soon Kimbo , take care .

sins
11th September 2004, 11:49 AM
Bumping this for Amazed!! :bump:
I was just curious about when your difficulties with breathing first became evident.I think I was over 30 when I really felt the difference in increased breathlessness.Until then I really didn't believe that my lungs had been damaged in any way by scoliosis.My curves are 110/60.
Sins

Marti
11th September 2004, 11:26 PM
How's the BiPap working now?

Amazed Jean
12th September 2004, 03:43 AM
I've been having more and more problems keeping up with people. It was disconcerting sense I'm admittedly a control freak. The scoliosis IT was sitting on my chest. It seemed like I couldn't do much then after 5 min. I would just have to sit and take ten. Then I would fall asleep several times a day. In March I think I got a touch of pneumonia and I volunteered to go in the hospital. This just doesn't happen - I hate hospitals but literally I felt like hammered peanut butter. My family had all been coughing and congested and try as I might to avoid it I got so tired I asked to go see our GP. Of course they can't see anything on the xrays (Duh) but I got a monster round of antibiotics IV and full time O2 at the hospital just made me feel better. The only way the Doctor said I was going home was on O2. Doc. drives a hard bargain - O2 it was, I've tried to go off and it ain't happening. I still can't keep up but at least I'm not falling asleep every ten minutes. This was a new doc and he listened and said we were in this together he'd find me scoliosis help. He has. Scoliosis guy is now passing me on to his mentor. This guy in Minnesota better be good. My husband and I are driving up there from Oklahoma Sept. 21. Its 800 miles. Its a dually pick up (rides rough) but its 800 miles (OK I'm whining) We do love each other but I feel lots of whining going on, he'll be ready to dump me in Iowa. The Bipap thing is something I'm going to look into since my husband said he knows he's heard me stop breathing in my sleep. They also say Bipap can help open airways just a bit. I'm all for open airways. Let's all cheer for open airways! O.K I am weird !

jfkimberly
16th September 2004, 10:30 PM
Okay, so as I was saying in another thread... I've not had a good night's sleep since I got the BiPAP. It's uncomfortable, and the pressure opens up my eustachian tubes, and that creates this horrible rushing noise in my head that's impossible to sleep through. The reason I sought treatment is because I wake up with horrible headaches every morning, and they were becoming more and more frequent and severe. So a sleep study confirmed that my pulse ox drops during REM sleep. My gas exchange is fine, so as long as I'm awake, my oxygen stays up. I just need something to keep it up during sleep so I can get some rest. But it defeats the purpose if the treatment actually prevents me from sleeping.

amazed: How did you get on O2 rather than BiPAP? Are you able to sleep comfortably with it on? Can I see a picture of what the delivery looks like? I have my BiPAP pics here (http://www.franzen2004.com/bipap).

Amazed Jean
17th September 2004, 01:54 AM
If I only knew how to put up pictures I would. My husband and daughter promised to help me get stuff up this weekend. O2 came about when I had pneumonia and I had to go to the hospital. I was miserable and I made everyone at the hospital crazy. (I actually asked too many questions - like why are you poking me for the sixth time ?) I stayed through a round of IV antibiotics and the O2 really helped me breathe . They also were giving me some inhaler treatments but I was getting really bitchy because they wouldn't let me sleep. I promised the doctor I would do ANYTHING if he would let me go home. Hence the O2, and inhaler came home. I did well but as soon as I went off the O2 I felt hammered again and was breathing with my mouth open and really struggling to keep up. Literally, I walked across the room and was out of breath. His verdict back to the O2. I also sleep better but Allen (husband) says I quit breathing in my sleep once in awhile, so we may be looking at Bipap. I have also read that the Bipap helps increase breathing depth since its forced. I need all the lung help I can get, I didn't look at my numbers on the last lung function test but I will soon. If you want to see an oxygen seperator look at AirSep.com I think. Lots of places sell, rent home O2 units just look for Home Oxygen on the computer. My G P wrote the prescription for it and they delivered it. Our insurance pays less than half every month but we do have crappy insurance.

jfkimberly
17th September 2004, 10:38 AM
I'm going to call Dr. Goza's office and let them know what's going on. I'll try a different mask first, and maybe a sleep aid (though I don't like medications unless they're absolutely necessary). If I don't start getting some quality sleep soon, I'll go mad. I think I felt better before I knew what was causing the headaches... now I stress out about the potential damage I'm doing to my heart and brain when I take the BiPAP mask off in my sleep and wake up with a headache.

Amazed Jean
17th September 2004, 07:28 PM
Kimberly, If its any consolation I did a recent round of heart function tests and the heart specialist even was surprised how strong my heart is. He said my mitral valve prolapse is there but my heart was just doing its thing strong and long. He also said that he was afraid since I had such crowding of organs and needed O2 that my heart might be in trouble. He did a chemical stress test ( they put some nasty drug in an IV that makes your heart work like crazy) and he was pleased with the results. So my lousy oxygenation hadn't damaged my heart. Now my brain might be a different story but so far no one has been concerned enough to order any tests. Yuck No more tests!

jfkimberly
17th September 2004, 08:05 PM
Oh, you have MVP, too? Do you have regurgitation with it? Any pains?

I'm being monitored for that, and I do have "some" regurgitation, but my cardiologist wasn't concerned at this time as it hasn't changed since my last echocardiogram 2-1/2 years ago. Occasionally I'll have really sharp stabbing/throbbing pain where my heart is, and I was beginning to get really concerned about it, but my cardiologist and the Internet both assure me that pain often occurs with MVP, and that it doesn't signify progression.

Lieve
18th September 2004, 12:58 AM
I'm sorry to read your BIPAP is not working well after all Kim. I hope you'll find a solution soon.

jfkimberly
18th September 2004, 08:32 AM
Thanks, Lieve. :/ I'm not sure what the solution is... except, of course, a bigger chest cavity.

Amazed Jean
18th September 2004, 08:00 PM
Oh, I wish we could just get bigger chest cavities. My lungs wouldn't be smushed. "they" say my right lung is so scrunched that it might not be functioning at all. - I beleive is because the size of my curves "they" have estimated that I would be at least a foot taller,so I have at least a foot worth of organs, intestine, bones etc. all crammed in almost no space. I cannot imagine how I ever carried a
baby to term in there. She is stubborn devil like her Mom I guess.

Yep, I've got a mitral valve prolapse and the regurgitation too Kim. I can't seem to get out of anything. Its like I must of been in line to get stuff and thought they were handing out candy and said,"Give me one of each." That will teach me to pay attention. Really the MVP seems to cause only minor pains , sometimes I can't tell the difference between MVP pain and the GERD reflux that feels like I'm being stabbed in the middle of the chest. I take a Zantac type pill and lie down for either one.

jfkimberly
19th September 2004, 12:06 AM
GERD, too?! How awful. I can stop with the scoliosis (and related complications) and MVP... oh, and the one-kidney thing.

Stop being so greedy... leave some disorders for the others. *wink*

sins
23rd September 2004, 07:13 PM
I had my respiratory consultation with Dr Moira Nolan today in the Cork Clinic.It seems the lung capacity is hovering around the 50% mark as expected.It was a useful and informative consultation with a very pleasant and interested physicain and I'm being admitted to the Bons Secours Hospital on 4th October for a full pulmonary work up, chest x ray and stress test/abg/sleep study/asthma assessment.I also had my meds changed again and hopefully will stop the palpatations.My heart rate is very high so I'll have an ECG too.
If my blood gases are ok she thinks I won't need BIPap for another 15-20 years. I asked about the possibility of further scoliosis surgery improving my lung capacity and the answer is that it won't and if the chest wall is disrupted during surgery it may cost me a few percent.
I will have an overnight stay which is a bit annoying but I'll be pleased to have this done.I could have gone in next Monday but I expect to be in a state of complete exhaustion from my trip to the UK this weekend....... :pint:
Sins

DublinPauline
23rd September 2004, 09:51 PM
Sounds like a good appointment Sins. The overnight in the Bons will be a bit disruptive but maybe you'll actually enjoy the break - that's if you manage to get some decent sleep!
It'll be great to have a throrough workout and you'll have baseline figures to compare against in the years ahead.
I meant to say work-UP of course, not workOUT.....

jfkimberly
24th September 2004, 03:34 AM
Why the ECG and stress test? Do you have a heart problem, too?

That sounds like a great appointment, Sins. 50% capacity is excellent with your curve. Good luck with the tests on the 4th. I hope you're able to get more sleep during your study than I got during my first one. *shudders at the memory* And I really hope the person who draws your ABG is better than the guy who drew mine! Let us know how it goes.

sins
24th September 2004, 11:04 AM
The Ecg is because I have a rapid hart beat (tachycardia) and palpatations.Whether or not this is caused by asthma meds we don't know.The stress test is to measure my O2 uptake during exercise.I don't have any heart problems but sometimes with severe scoliosis you can be at increased risk of pulmonary hypertension and left sided heart problems.With my degree of curvature chances are my heart is displaced and pumping against the flow of gravity as opposed to pumping with it.A chest x ray will tell if all is ok and the ECG will hopefully pick up on the palpatations and fast heartbeat.
Sins

Jonny
24th September 2004, 05:28 PM
Wish you loads of luck with the battery of tests you're headed for, Sins.

I apparently was very tachycardic during my anterior surgery. While I was in hospital my pulse stayed between 90 and 100 pretty much all the time, rising to 137 just before they anaesthetised me for the posterior... I was terrified! :-o

jfkimberly
26th October 2004, 05:35 PM
I got a call on Friday to confirm my follow-up appointment with Dr. Goza today to look at how I'm doing on the BiPAP machine, and I confessed to the medical assistant from his office that I was having trouble with the mask and hadn't had a successful night with it in all this time. She told me to call the equipment supplier and get a different mask, but it was too late to call on Friday... so I called yesterday and got a new mask. And I slept from 3:30 to 10:00 with it on last night! It will take a bit of adjustment before I'll sleep soundly with it, but it doesn't hurt so bad that I wake up in the middle of the night to take it off! I'm so glad I got it replaced! I suppose I should take a picture of the new contraption... but later. I'm not in a photographic mood.

Marti
27th October 2004, 02:02 AM
yay! that's terrific. You shouldn't have to give up sleep.

Amazed Jean
27th October 2004, 05:28 AM
I haven't heard anything from my doctor about the all night pulse oximeter I slept with two nights last week. We are still negoiating about Bipap or whatever. I am not looking forward to it. There is enough weird stuff in our bedroom already and I'm not counting Allen or me! I'm glad that yours is a bit more comfortable Kimberly.

jfkimberly
27th October 2004, 06:03 AM
Oh, I didn't know about the all-night pulse ox study, Jean. Was it in home, or did you go to a sleep lab?

Amazed Jean
27th October 2004, 01:42 PM
It was at home. The doctor ordered the test through the oxygen supplier I use (Lincare) . They brought the pulse oximeter out and told me what to do. This was very complicated -clip on finger, turn on and go to sleep. Wake up. Turn off. Lincare comes out after how many days it was ordered for. Takes the little thing back with them and someone there opens it and reads it. The fax results to doctor. The finger clip is the same size as the ones at the hospital. It is attached by a 3 foot long wire to a box that was slightly larger than television remote.

sins
27th October 2004, 02:06 PM
I think the bipap is a marvellous thing in your situation Jean although I do understand your reluctance to have it in the bedroom.If my consultant was considering bipap for me at 49% lung capacity I think in your situation we can safely say go for it!!
My tests have revealed that I'm not at immediate threat for ventilation but when the time comes I'll take it as it prevents complications from possible pulmonary hypertension which if not expertly managed can have a very serious outcome.
Sins

DublinPauline
27th October 2004, 03:58 PM
I'm with Sins on this. My respiratory physician painted a very positive picture of how a BiPap could let my lungs rest at night and would leave me feeling much more refreshed and energetic during the day due to higher waking oxygenation PLUS a more restful night's sleep. I have 47% lung capacity and my O2/CO2 figures are within the bounds of "normal" at the moment so my doc doesn't think it's necessary now but we are keeping an open mind. The contraption seems to be about the size of a small laptop so it shouldn't take up too much space or look too ugly. The main challenge seems to be finding a setting that is comfortable, from what Kimberly has said.
Look at it like this, we're lucky that it is available as an option and who knows, even less invasive options might become available in the years ahead.

jfkimberly
27th October 2004, 08:14 PM
Pauline, I have a picture of my BiPAP (which is generally a larger machine than a CPAP) here (http://www.franzen2004.com/bipap/). I am using a different mask now, though. The one shown caused me a lot of discomfort and would wake me up after two hours or so.

They find the setting that best allows you to sleep comfortably and keep your pulse-ox up during your sleep study.

Oh! I haven't posted my follow-up appointment. I saw Dr. Goza yesterday, and he showed me the charts from my two sleep studies (one to diagnose, and one to find the right CPAP/BiPAP settings). The charts have one bar for your level of brain activity. When it's up, you're awake; when it dips down, you're asleep; and when it's in the middle and has a thicker line, you're in REM sleep. There's another bar below that one that tracks your pulse ox throughout the night. If you look at the pulse ox bar for dips, you can refer up to the brain activity bar to see what was going on to cause the dip.

My pulse ox was fine most of the night... except when I was in REM sleep. That's when the only mechanism to make me breathe is my diaphragm. Dr. Goza thinks that with the other muscles of the chest wall and with my throat not relaxed, that I'm able to get enough air in and out, but with my restrictive lung capacity, the diaphragm isn't able to pull enough in and out to keep up with demand. So my pulse ox dropped off suddenly and dramatically. The lowest it went was 59% saturation.

For the second study, the same bars were there, and they also identified what level(s) the CPAP or BiPAP was set to at any given time, so we could see what the effects of the intervention were.

More later... I'm running late.