Ayn's Multiple World

Pretty much chatter on finding ourselves diagnosed with Sleep Apnea and with Periodic Limb Movements Disroder :(

Good morning... It’s about 4:30 am on a Friday morning. We’ve been up for about 15-20 minutes just starting the day. We’re still struggling on the scale, but doing ok with the blood glucose. I wish I could understand the weight. Yesterday the only thing I did wrong was that I had to of those oatmeal cream cookies. So the scale tipped all the way back to an unforgiving 300. The day before it was 297. I don’t understand why I’m having so much trouble. I just cant believe two cookies is the equivalent of gaining 3 pounds. It makes me feel very frustrated.

Ok, ok … we’re getting off that subject. I don’t want to lose out on everything good that we’re doing to help ourselves just because of that stubborn scale.

We had a good amount of trouble yesterday. The first thing was with our car and more expense and the second thing was because of getting back the result of the sleep apnea study. We’re going to share a couple of emails to Dr. Marvin to catch you up. Hold on …

Dear Dr. Marvin,

This is me. I'm not sure what is going to happen with my appointment today. I had car trouble this morning. First, the ABS light came on, but she drove for 4 or 5 more miles. It started getting sluggish to go forward after stopping at lights, and then all the lights came on and last she died. It gave me enough time to pull over in a tow zone. As chance would have it I was at 55th and just west of Kedzie. AND, across the street there was a tiny strip mall with a liquor store that was open. I had my cash card and they had a cash machine, which was really nice, because I didn't have even a quarter on me. I'd forgotten my few bucks cash in another coat. ALSO, they had a payphone inside that was working. This time I had kept our last service bill for our local garage in the glove compartment. I called our favorite mechanic who knows us, Bunnynose and the car. He called a tow truck that got there an hour later, we had a nice talk with the tow truck driver, and he dropped me off here ... at home. I had talked to Sr. before and after the tow. I worked on CARF all the time we were waiting, and I'll get back to it again now. She's letting me be paid for working at home today. I'm not sure what our repairman is going to find with the car, or how long it will take to be fixed. Bunnynose had left town this morning. He went out East to see an aunt and uncle and he won't be back until Tuesday. See, I am handling an emergency all by myself! He's going to be very proud of us! Last time, I'd brought the car to a bad shop, he said next time to call our regular place. I would still like to come to the appointment IF the car is fixed in time. I know the repairman will come pick me up to get the car. If it can't be fixed in time, I will not be able to come in tonight. I'll keep you posted when I hear from Don, K?

Hopin to see you.

Us

Insert: I just got back from getting my car. New alternator and tow from Chicago. $400. :( I will be able to make the appointment today as scheduled.

Dear Dr. Marvin,

Today I got the mail because I was dropped off in the front by the tow truck guy. A few moments ago I spot checked it. Didn't want to get into it, but of the two mails I opened, one was from the sleep clinic. I'm pretty sure then there is something in your computer. I was only sent pages 1 and 2 of 5. I would like to get a copy of the other pages if they show up on your computer.

The bottom line is that they are diagnosing

ICD-9 Description
327.51 Periodic Limb Movement Disorder
327.23 Obstructive Sleep Apnea (adult) OSA

I think I'm going to need rescheduling for another sleep study so they can test a CPAP devise. I might need to have checked "underlying pulmonary and/or sinus disease." I shouldn't be drinking alcohol before bedtime, which I don't, but it's probably not a good idea anyway. They might want to check some thyroid function tests. There might be medicine for the periodic limb movements after they try first the CPAD devise. And, if clinically warranted they might consider surgical options.

That all comes from the recommendations of Dr Herdegen. I don't know how generic all that is ... Basically, are these the recommendations everyone with sleep apnea gets? I guess I had about 128 hypopneic and apneic events or 20 events per hour of sleep with the normal number being less than 5 events per hour. The limb movement index was 18 events per hour of sleep. They said we have frequent arousals and stage changes and the sleep latency was short at only 4.5 min. The apnea has something to do with my REM sleep because of some kind of respiratory events (respiratory index during REM sleep was 70) during NREM it was 14 events per hour. And the lowest oxygen saturation was 71%.

Ummm, I'll probably be trying to figure what this means next. Most times it seems I'm only moderately bad at whatever I got. Shoot ... That was the car repair place. They say that its going to take about $392, which includes the tow and replacement of my alternator, and a battery charge. I made the executive decision yes do it. Usually Bunnynose does that for us, but we're going to give him peace. He said he might call tonight, maybe we can tell him then. That money had been to pay for other stuff. But, when the car goes down you gotta fix her. :(

Anyway.

Hmm, that 20 number for respiratory disturbance puts me at a moderate level, but not severe. But that dumb 70 number from before puts me at a severe level with the REM sleep. Umm am I taking tricyclic Antidepressants? A sleep-latency of less than five minutes would indicate (mines 4.5) either very unhealthy daytime sleepiness or some sort of sleep-disorder. Hmm as to oxygen saturation measures a rate below 60%, indicates that the body is in lack of oxygen, and ischemic diseases occur. I’m pretty sure that ischemic has something to do with a heart attack. Mine's at 71% lowest. That sounds a little close for comfort. Hmm this i should know ... REM Sleep (Rapid Eye Movement Sleep) - The sleep stage in which vivid dreaming occurs; identified by the occurrence of rapid eye movements under closed eyelids, motor atonia and low voltage EEG patterns. Also associated with bursts of muscular twitching, irregular breathing, irregular heart rate, and increased autonomic activity.

Hmm ... The gold standard treatment for moderate to severe cases of OSAS is continuous or bilevel positive airway pressure (CPAP/BiPAP) which mechanically maintains the upper airways space open during sleep via the administration of ambient air with a certain pressure. The minimum necessary pressure level has to be titrated individually for each patient [24]. Other treatments, especially for mild cases of OSA, include weight loss, dental devices (which advance the tongue or mandible to increase posterior airway space) or upper airway surgery (e.g. combined tonsillectomy/ adenoidectomy, nasal reconstruction, and uvulopalatopharyngoplasty). Different upper airway surgical procedures can be used for particular cases with craniofacial abnormalities.

We've been told we have a large uvula. :(

Damn ...

Therefore, the presence of a polypathology often associated with OSA, such as obesity, cardiovascular disease, hypertension and diabetes, should increase the suspicion of an underlying or coexisting OSA in a depressed patient. However, it should be kept in mind that OSA may not be immediately apparent, but might present in an atypical fashion, with irritability, tiredness, disrupted sleep, difficulty concentrating, difficulties accomplishing tasks and generally decreased psychomotor performance [12].

There may be nonspecific findings related to adenotonsillar hypertrophy, such as mouth breathing, nasal obstruction during wakefulness, adenoidal facies, and hyponasal speech.

Patients with hypothyroidism can also present with fatigue, daytime somnolence, and obesity. SDB and hypothyroidism can coexist.

In the case of an underactive thyroid gland, the obesity which untreated hypothyroidism can create eventually can also cause OSA. However, current data suggest that an underactive thyroid gland can lead to apnea even before the individual begins gaining weight. The mechanism is unknown. Thyroid hormone supplementation might lead to significant correction of the apnea if this is the sole problem. Because of this finding it has become common for routine thyroid function testing to be recommended if there is any suspicion whatever (including family history) of hypothyroidism.
For unclear reasons, uncontrolled diabetes can also lead to apnea. Control of blood sugar levels has, however, in our experience had at best a moderate effect in controlling the diagnosed obstructive sleep apnea.
Treatment for adult OSA can include behavioral therapy (losing weight, changing sleeping positions, and avoiding alcohol, tobacco, and sleeping pills), use of mechanical devices (continuous positive airway pressure – CPAP to force air through the nasal passages, or dental appliances that reposition the lower jaw and tongue), and surgery to increase the size of the airway.27

What's going to happen when I get depressed and take these … it’s always been our drug of choice when suicidal?

Moderate-to-severe OSA is associated with earlier death. The cardiovascular sequelae of untreated OSA include hypertension, cor pulmonale, arrhythmias, and increased risk of myocardial infarction or stroke.

Limitations in upper-airway dimensions are typically associated with chronic loud snoring. The frequent arousals result in ineffective sleep and account for the chronic sleep deprivation and the resultant excessive daytime sleepiness that is a major hallmark of this condition. Additional effects include morning headaches, high blood pressure, heart attacks, heart-rhythm disorders, stroke, and decreased life expectancy.

Ok, ok … we’re back … that was the end of Dr. M.’s emails. Obviously, you could figure out we got to our “stuck” point when we started reading information on our life line being cut short. It was a good day to have met with Dr. Marvin. It was too close at the end of the session to have gone deeply into the being dead earlier conversation. He brushed it off with everything is ok … your working on what has to be worked on kinda stuff. It felt like to us, ok ok you bought yourself another week’s time, but I don’t think our fears have been put to rest. For as many times as we’ve tried to end our life, we know that happens when our illness has taken over and is being out of control. It’s not something in our more positive states that we’re real keen on.

Dr. M. says that usually people get this thing … when they are older, but I’ve been snoring loudly since I was very small. There was a frustration of knowing that 40 some years has gone by and nothing has been done and likely so much has gone against me in not getting proper sleep. I had asked Dr. Marvin if it isn’t something that could be affecting my ability to concentrate on CARF, and then he brought up yes, and that it’s probably what was affecting my being able to concentrate on school. He had on that funny smile of his that suggested that could all now be corrected and all was good. He had known people who went from sleep apnea uncontrolled to controlled with the CPAP machine. We told him that a good number of people found they could not tolerate it. But, he stuck to his guns saying that it pretty much turned their life around.

Dr. Marvin was pretty patient with us last night. We always get these bad things happening in our mind when we first walk in, but then soon after we were on this apnea stuff and we stayed there the rest of the time. He pulled up the last 3 pages for us from the doctor’s notes, which ended up being charts. That was a very handy thing. The last of the three charts was a night hypnogram. This is a gold standard kinda thing you get from having a Polysomnogram done. I couldn’t read it immediately at Dr. M’s, but after we got back … we figured out pretty much what it means. The first squiggly line is something to do with our oxygen in the blood stream. It shows the times that we dipped down to the low 71% or there about. One of the charts on another page give us more detail as to the exact numbers as they occurred. The next set of lines charts out the problem with the “periodic limb movements disorder.” That’s the one that was happening 18 times an hour. And, then the last lines are the one that shows for the 7-8 hour study whether we were awake, in REM sleep, or in NREM – non-REM sleep or more particularly, which stage 1-4 we were in. I don’t know why, but we never hit stage 4. I think the norm with REM sleep is about 18% or so, but we were down at 10% of our sleep. What it shows a lot of is how much we were waking up throughout the night … it was a lot. I could see too the part of having soo much more trouble breathing and with limb movement when we were in the REM sleep. It hadn’t occurred to me yesterday that that was actually at a very severe level. I had focused on 20 average being in the moderate level. Regular people are supposed to have under 5 events per hour. 5-15 is mile apnea, 15-30 is moderate, so obviously our 70 is falling deeply into severe apnea. Now we gotta do that without it making us very nervous.

We gotta think this is a good thing to have figured out because its going to help us get better. The patience part of Dr. M. was that I had to go through everything slowly one thought at a time. He had also on request given us the email we’d mailed (from above). So every little point we went over, but this time it was with him, so we had his handy medical and emotional take on things, which has always been very, very helpful. As we talked back and forth, I could remember stuff we had read … not well, but the general areas. Like there was a big thing about the apnea being tied not only to the heart and stroke problems, but as well to depression and PTSD, which is a cousin to being a multiple. When asked, he didn’t rule out whether or not some of the thrashing about during REM sleep couldn’t be us still dealing with the nightmare issues of abuse. He just said it was possible. We’ll have to do more reading on that issue to figure that part out.

Still thinking of that silly satisfied expression he had that this piece of the puzzle had been figured out. I think he must have been tired out or we were tiring him because I spotted him fading a few times, but he kept putting his best foot forward. I think it must be kind of humorous to him in a good way how we deal with our life crisis. I’m thinking a lot of people must rush to the Internet to figure out what’s going on with new events, but I’m not sure how many of Dr. M’s patients are doing this. I have the sense that a lot of his clients maybe poor and not so computer literate. Like we both knew with that new chart most likely I’d figure it out as soon as I got home, which is what happened. There’s a fine line balance now of knowing where I’m at and then not obsessing on it. We talked about that for a few moments too. I know what I know and I’m going to have to do some waiting before I’m to learn more.

The appointments concerning all this will be on this next Wednesday night for another sleep study … this time with the machine, and then there will be another meeting with the doctor on November 30th. So, still have three weeks to wait out that one. *Sigh* but plenty of things to tie us over until then. We have that day the appointment with the sleep doctor at 10:15, and then we have an appointment with our regular doctor at 1:30, and then we have an appointment with Dr. M. at 4:30. Should be kind of a rip-roaring day. I’m glad Dr. Marvin will be at the end of it. That should help immensely. In between now and then we have in addition to the 2nd sleep study – two more psych visits, two more dentist visits, two more staffings, an OIG meeting, AND Thanksgiving. Woo HOOO!!!

Last night as promised our sweetie lips called. He was in Kentucky and had just finished a big dinner. He didn’t have any trouble on the road, but was on the tired side I could tell. We told him about the car and losing another work day and about the sleep apnea. He was rushing us a bit, because its his tendency, especially when tired to minimalized stuff happening when it gets to be too much. That, of course, made us jumpy about the hard parts like in reading in a couple of sources of having a shorter life line. Our friend is definitely more apt to want to talk about that kind of stuff face to face. I know though that he heard us, because he made a statement of saying when it rains it pours. That meant a lot to me, because I felt appreciated for doing as well as we are considering all of the circumstances.

There was a little while last night when Dr. Marvin went back to the computer. We had asked him early on why they had put into my records that I have hyperlipidemia and schizoaffective disorder. He had seen that part too and calmed me in saying I didn’t have schizoaffective disorder and he wasn’t sure why they had stated that. I guess I do have hyperlipidemia, but he didn’t know why they included that because it isn’t something I knew to tell them. Basically, it means that I have fats in my bloodstream that include things such as cholesterol and triglycerides – so in particular I have hypertriglyceridemia. Eh. I like the umbrella term hyperlipidemia just as well HMPF … if everyone has to go about knowing what’s running through my veins HMPF HMPF!!!

I just got this to say that they should be telling me when I get stuff in particular. Dr. Marvin acknowledged there was a place on the computer file where it is theoretically supposed to list all the things I got. I think most of them were stuff I knew about, but he added as well gall stones. Like, FINE FINE … as long as they aren’t causing us no trouble!

Man … it says that they are mostly made from an accumulation of cholesterol, salts and something I don’t want to say. They live in the duct between the liver and the gall bladder and if this duct gets blocked then I could get jaundice. And, if that happens, we are going to be in severe pain. GREAT! It’ll happen in our upper right hand side of the abdomen and spread to the back and right shoulder along with nasea and vomiting … and that all can lead to an infection or inflammation of the gallbladder, jaundice or pancreatitis. It might just be that I have narrow bile ducts. Grrrrr

Ok, ok … we did all that … I have the kind of gall stones that just sit there politely and don’t say nothing! Because we DON’T want any PAIN around here! That little thought is what keeps us away from being suicidal probably more than any other. We just don’t tolerate pain.

Hmm, so all that isn’t putting me in too good a mood. Plus its about time we take our shower, which seems almost like fine, because our jaw is letting us know its time for another Tylenol 3 to be taken with the other medicines. We’re pretty sure we have a point or two yet to make, but I suppose it will have to wait … brb

Maybe we should have a few thoughts when we get back as to how we do or do not do medical realities so good … HMPF!

Pshwoo … through with the shower. We’ve only got a few more moments left now. I didn’t think we had taken as long as we did. But, that’s the way she goes.

I’m going to leave this marker, because it is an article we are going to want to read later. It was too long for this period of time.

http://www.acnp.org/g4/GN401000075/CH075.html

Ok, better get going … would like to get this posted and us out the door. Be taking care …and as always … thanks for reading us … I know I put out a lot of stuff to be read. Thank you.

posted by Ann Marie @ 11/10/2006 06:57:00 AM Comments: 0