so very tired and it isn't getting better

[-SWS]

Hi guys,

I finally have some updates on various medical situations. A certified letter has been sent to my old sleep doctor in an attempt to get him to send us both NPSG reports. Haven't gotten anything back yet.

My new sleep doctor said she will get all my medical information to me soon so if I don't get it in the mail before Aug 4, I will pick it up from her in person then, at my next appointment.

My sleep doctor said that my contrasting MRI came back 'normal'. My EEG didn't show anything out of the ordinary other than I seem to have a 'drowsy' brain, which she said isn't surprising since my sleep study showed that my brain isn't getting rest. The sleep doctor is actively working to find a neurologist who will take me as a patient. She has one who can take me on in 5 months but has found another one who wanted to see all my medical records and after looking at them, he may take me on sooner. My sleep doctor told me that there is no emergency but she does want a neurologist to see my EEG, MRI, sleep study and MLST because she isn't qualified to analyse them in the depth that she wants them studied. So a neurologist appointment is in my future, once my sleep doctor gets me set up with one.

A big hindrance to my CPAP therapy has been that from the very first time I used a machine during my first sleep study, I have had very painful stomach bloating. It seems to be directly related with using the machine since I have never had acid reflux, gerd, stomach bloating, etc until I used the machine. If I don't use the machine, I don't have the problem. And as time had gone on since I started using the machine in Feb, I had been able to tolerate less and less pressure. Finally I was setting the pressure at 8 and still was in a lot of pain during the night and the next morning.

My sleep doctor wanted to start me on 0.25mg of clonazepam to see if it would help my brain stay in REM sleep when it got there...my sleep study showed that I would go into REM sleep for a few seconds and then my brain would start racing...so I wasn't getting adequate rest. But before she would let me take the medicine, she wanted me to be using my machine at a pressure of 11. She did not want me to take the medicine without being on the machine, in case the medicine relaxed me too much. We discussed the problems I was having with the stomach pain and she had me start taking simethicone. Before now, of all the things that my gastro doctor and sleep doctor had me try, they hadn't mentioned and I hadn't thought of trying simethicone (Gas-X). I guess I would have been familiar with this product if I had ever needed it before.

I take the 250mg simethicone before I go to bed (along with the clonazepam) and 250mg when I get up in the morning. I still have some stomach problems but they are very minor compared to when I wasn't taking the simethicone. I have been able to use my CPAP on a constant pressure of 11 without any EPR, for a week now. I had used an EPR of 3 than 2 than 1 but I was having my usual AHIs of 25 or so...for the last two nights I have had an AI of 1-2 and HI of 3 for an AHI of 5ish...which is pretty incredible for me. Even if they hadn't gone that low, I have no plans of fiddling with the settings for a few weeks. As it is, I have added the two new meds mentioned above and just had my thyroid meds increased. So I want to see how things settle out before focusing on the data too much.

The last few days I have actually woken up feeling good! I think I have to give a lot of credit to the simethicone since the stomach pain was a big show stopper every night and morning. I don't think I could keep using the machine if that pain had to continue every night. I already had very fragile sleep so added the pain to the mix was quite a downer. I would often just get up since it hurt to lay down anyway. I sure didn't look forward to going to bed. In the week that I have been using the simethicone, my outlook on going to bed has changed completely. I could even start liking my machine and mask.

I now have my results from the endocrinologist. This new doctor is a lot better than my old doctor but we'll have to see how open he is to things if I need to be on more than just levoxyl. My TSI was 94, T4 free was 1, T2 free was 237, cortisol was 13, and acth plasma was 18...according to the chart, those were in the "normal" range.

But my TSH was 6.97 (should be less than 2) and my thyroid peroxidase antibodies were 143 (should be less than 35). I definitely have Hashimoto's and it isn't being treated adequately. He wants to keep my TSH under 2 at all times (where as the other doctor wasn't going to make any changes unless I went over 3.5 (I was at 2.75 six months ago when the old doctor last saw me). So my levoxyl has been raised from 100 to 125mcg and I will get another blood test in 6 weeks to see where I am at then.

There is room for feeling better if I get my thyroid situation under control. I'm not sure how far I will go with this particular doctor since he doesn't seem to be very open to treating with anything other than levoxyl and I don't know if just levoxyl will fix things. But so many changes are going on medicine-wise this month, that I want to sit back and see how I feel in a few weeks. I also started back on Zoloft, which I had stopped taking several months ago, so it wouldn't interfere with my latest sleep studies.

Sorry I went AWOL the last few weeks but I didn't know ANYTHING and was trying not to fret about whatever it was that I didn't know. I am assuming my brain must be ok since I'm not being rushed into the neurology emergency room. I almost feel like I belong here now that I can actually tolerate using my CPAP machine without barfing (yes, barfing was part of the program with the acid reflux I was experiencing).

A special thanks goes to -SWS for giving me the nudge I needed to get me back online and posting. I was feeling a little down about all the non-progress I had made over the months...and once I stop 'talking', I have trouble getting started again, without help from friends.

mar

Going AWOL for a few weeks? Posters do that all the time, Mar, including me. I can't speak for you, but there are times when I want to get my own focus AWAY from a health-related message board---and onto yet other things in life. That can be a very healthy reprieve from whatever ails us IMHO.

Regardless, it's great to hear from you. It sounds as though you managed to move a few steps forward, along with the ineveitable one or two steps backwards as well. That's to be expected. Aside from the drowsiness, that's great news from the neuro work up! And that change in focus regarding your thyroid treatment is very promising!

The last few days I have actually woken up feeling good!

Well, that sounds familiar. Now where did I that before? Oh yeah!

click image

It feels great to hear you feeling good!

[robertmarilyn]

Going AWOL for a few weeks? Posters do that all the time, Mar, including me. I can't speak for you, but there are times when I want to get my own focus AWAY from a health-related message board---and onto yet other things in life. That can be a very healthy reprieve from whatever ails us IMHO.

With all the doctors appointments and procedures I was having, it really was good for me to stay off the computer and out of the health forums for a while.

Regardless, it's great to hear from you. It sounds as though you managed to move a few steps forward, along with the ineveitable one or two steps backwards as well. That's to be expected. Aside from the drowsiness, that's great news from the neuro work up! And the change in focus regarding your thyroid treatment is very promising!

Things are looking brighter. As much as I wanted to do so, I had never been able to wake up feeling even OK after using the machine, until this week. This is NICE! And all kinds of good things can come from treating my thyroid problem correctly

The last few days I have actually woken up feeling good!

Well, that sounds familiar. Now where did I that before? Oh yeah!

click image

OK....this is my new theme song
mar

[robertmarilyn]

Thank you Muse-Inc and HomeBody (oops, I typed HoseBody first) for your words of encouragement.
mar

[SaltLakeJan]

Mar,

Hang in there. You will conquer it yet. J Brown can get anyone up and movin'. You have been in my thoughts and prayers.

Jan

[robertmarilyn]

Mar,
Hang in there. You will conquer it yet. J Brown can get anyone up and movin'. You have been in my thoughts and prayers.
Jan

Hi Jan,

I was just over at your thread catching up. I'm so glad I have my data capable machine already...I had to get the ex-sleep doctor to exchange the non data capable CPAP for this APAP. Glad that is done so I don't have to tackle that particular situation with the new doctor. I do have to deal with getting a prescription from my new doctor if I want to buy masks from CPAP.com now, I see. Getting a prescription from my old doctor would take an act of Congress I think since I still have not been able to get my records from him (but I am working on it).

I have a face to face meeting with my new sleep doctor on Aug 4 and I will get a prescription from her then and my records (if she hasn't already sent them to me by then). I know she is going to want to know why I would need the prescription since I'm pretty sure she will not have any idea why I would need one since I already have a machine and I know she assumes I will always get my masks from her place. But I want to keep my options open and want to be able to obtain what I need even when the doctor is out of town (she seems to travel a lot).
mar

[-SWS]

With all the doctors appointments and procedures I was having, it really was good for me to stay off the computer and out of the health forums for a while.

The Missus and I are getting ready to pack the Jeep for a couple days at the state park...

J Brown can get anyone up and movin'.

I'll try to keep an eye peeled down at the state park to see if Papa really did get a brand new bag.


click image


Back in a couple days... after sleeping in the same old sleeping bags we have used for years. That Papa's one lucky SOB if he really is sporting a brand new sleeping bag. I'll try to get to the bottom of the rumor about Papa having a virtually endless sporting and camping equipment budget. That Papa! I bet he's got a whole lotta bag money, sleeping all decked out in the forest that way.

Take care, guys!

[robertmarilyn]

The Missus and I are getting ready to pack the Jeep for a couple days at the state park...

Back in a couple days... after sleeping in the same old sleeping bags we have used for years. That Papa's one lucky SOB if he really is sporting a brand new sleeping bag. I'll try to get to the bottom of the rumor about Papa having a virtually endless sporting and camping equipment budget. That Papa! I bet he's got a whole lotta bag money, sleeping all decked out in the forest that way.

Take care, guys!

Have fun and be sure to shake out those sleeping bags before getting in them. That lets the spiders know you are getting ready for bed.
mar

[robertmarilyn]

[robertmarilyn]

[robertmarilyn]

[Muffy]

...I think that after things not improving at all since I started CPAP testing in Feb, that in the last two weeks I am finally noticing that I feel better.

That's good, because given this sleep architecture, things probably couldn't get much worse:



That is truly awful.

It has taken a LOT of tests and trial and error and finding out that certain meds do work and don't work.

Like what? What medications (and when) did you take during the above study?

Also, what's up with that pressure titration (literally)? Why increase pressure in the absence of events? Why not go down (like to "off" for instance)?

Muffy

[robertmarilyn]

...I think that after things not improving at all since I started CPAP testing in Feb, that in the last two weeks I am finally noticing that I feel better.

That's good, because given this sleep architecture, things probably couldn't get much worse:



That is truly awful.

Thank you for replying Muffy. Would you mind explaining what we are looking at and how it relates to "awful"?

It has taken a LOT of tests and trial and error and finding out that certain meds do work and don't work.

Like what? What medications (and when) did you take during the above study?

The meds I was speaking about just had to do with my acid reflux/GERD/air in stomach problem that I only have when using an XPAP machine. I had an upper endoscopy done and a test to see how fast food left my stomach and both tests came back normal. No signs that I ever have had those problems in the past. Meds for acid reflux and GERD didn't help me be able to use the machine without getting air in my stomach. Two weeks ago (more than a month after this sleep test) I started using 250mg of simethicone when I go to bed and 250mgs when I get up and that has helped me to tolerate using the machine.

But I hadn't started simethicone the night of the test. At the time of my test the only meds I was on were Allegra D, Singular, and Levoxyl. The day of the study, I didn't take these meds so the last time I had taken them was 36 hours before the sleep test started.

Also, what's up with that pressure titration (literally)? Why increase pressure in the absence of events? Why not go down (like to "off" for instance)?

I noticed that. Was it because I didn't go into REM at the lower pressures? The higher the pressure, the more stomach pain I have so I'd like be on the lowest pressure that would work. I'd love it if my best pressure was OFF (no machine) but they didn't do any testing without the machine. I did have a test without the machine in Feb, by a different doctor and then a titration test by him. He said I needed a pressure of 14 which tears my stomach to pieces. He is the doctor who says he doesn't have to give me more than the 3 summary pages of my tests.
mar

[Muffy]

Would you mind explaining what we are looking at and how it relates to "awful"?

Of course.

To review Sleep Architecture 101:

These are examples of hypnograms showing sleep architecture during a full night's sleep.

The first example represents normal sleep. Sleep progresses from wake, through light sleep (Stage 1 and 2), followed by deep sleep (Stages 3 & 4), and finally a REM period. This is called a Sleep Cycle, and takes about 90 minutes to complete. There are usually 4-6 Sleep Cycles per night. Most deep or delta sleep occurs in the first Sleep Cycle. The duration of REM periods increase as the night goes on. Normal sleep stage percentages are Stage 1 5%, Stage 2 60%, Stage 3 & 4 combined 20%, and REM 20%. Delta sleep generally decreases as a function of age.



This example represents someone with OSA. After sleep onset, the patient moves back and forth from Stage 1 to Stage 2 sleep. Stage 1 sleep is simply a transition stage to quality sleep and should only appear at the begining of the night. It has virtually no value as far as restorative sleep goes. It is should not appear to any great degree once bona fide sleep begins. There is no delta sleep whatsoever. REM sleep is 19.9%. The patient is aroused to wake at least 10 times. There is some continuous stage 2 and REM sleep, but overall this is fairly poor quality sleep, with frequent disruptions caused by OSA.



This example shows a patient with a large quantity of delta sleep (20.8%) and REM sleep (33.8%). Sleep is fairly continuous. This patient will be well rested in the morning. This patient is the one from example 2 during his CPAP titration. This greater than normal quantity of delta and REM sleep is termed Rebound Phenomenon. With regular use, the CPAP user will move to a more normal sleep architecture as the "sleep debt" is paid off. This usually occurs in a day or so. This also serves to explain why some people think they slept so well in the lab, but then do poorly at home. It's not that they're doing poorly, they're actually now approaching normal architecture, the aggravating factor is now gone.



This example represents a Split-Night study. Initially, there is a very disrupted, light sleep pattern, that turns into prolonged REM after application of CPAP. There are areas of sustained sleep, but there are still areas of disrupted light sleep. This patient also had Periodic Limb Movements which continued to disrupt sleep even though respiratory events were well-controlled on CPAP.



There should probably be about 40-50 stage shifts in a normal, healthy patient not troubled by lab effect (the test itself can drive up the stage shifts). Most references are looking at about 7 stage shifts per hour, give or take. There should be few, if any awakenings, perhaps in the neighborhood of like "2". An awakening is a sleep disturbance that lasts >15 seconds, as opposed to an arousal, which lasts 3 - 15 seconds. Consequently, awakenings are highly disruptive to sleep.

BTW, those were generated prior to the new standards for NREM, which now combine Stages 3 & 4.

So now, look at your architecture. Most striking is the amount of awakenings. There are so many they are uncountable (usually this number is reported out). There is too much Stage 1 as well. The REM is delayed - did an ADM sneak in there?

Is the Allegra-D 12 or 24 hour? Pseudoephedrine is the enemy of sleep, I think that's something to keep in the back of our mind, even at 36 hours.

Right now, there is no justification to be on high pressures based on the data presented thus far.

I'd get those other studies. It's time for the XM-214.

Muffy

[Muse-Inc]

Thanks for posting this Muffy! Explains my exhaustion when I reviewed my Sleep Study results.

[robertmarilyn]

Would you mind explaining what we are looking at and how it relates to "awful"?

Of course.
To review Sleep Architecture 101:

Thank you for explaining it with the graphs. I can always understand better with pictures. I have never known what it was like to just wake up twice during a night. In fact, from the time before I even started school (kindergarten), I was aware of being "awake" all night. If there is a lighted clock around, it is easy for me to see that sometimes I will 'fall asleep" and then wake up all in the same minute throughout a night. I think that is why I move around constantly in bed too, I can't sleep/stay asleep so I'm pretty much flopping around 'trying' to sleep and get comfortable.

So now, look at your architecture. Most striking is the amount of awakenings. There are so many they are uncountable (usually this number is reported out). There is too much Stage 1 as well. The REM is delayed - did an ADM sneak in there?

ADM =Adrenomedullin? Don't understand it but looked ADM up to see what it might mean. I have a summary of my EEG and my contrasting MRI, done on June 22 and 23, 2009, that I will upload in my next post on this thread. Never mind, I already uploaded the EEG and MRI info...it's 6 posts down from this one.The sleep doctor who did the June 2 sleep/day tests, had me get the EEG and MRI and is trying to get me into a neurologist (there are only 6 in this city from what the doctor told me).

Is the Allegra-D 12 or 24 hour? Pseudoephedrine is the enemy of sleep, I think that's something to keep in the back of our mind, even at 36 hours.

The Allegra-D is 24 hour. I have severe allergies. Before I had the UPPP 15 years ago, my allergy doctors were not able to get my allergies under any kind of control. After the UPPP, I was on allergy shots for 5 years. I never made it to "maintenance" because we had to go so slow in raising the dose but the shots did help my allergies a lot, along with allergy meds. During that time was the first time I was able to get relief from my allergies. What would be a better allergy medicine for me to take, that wouldn't interfere with sleep? And is it a case of me dealing with Allegra-D and sleep/not sleeping much worse than most folks? Would most people who had taken Allegra D-24 thirty six hours earlier have the type of activity I showed?

Right now, there is no justification to be on high pressures based on the data presented thus far.

I'm beginning to think that my "feeling better" this past two weeks is just a case of me actually just going back to how (crummy) I felt before I started CPAP in March. I had the first sleep test because I was so very tired, got put on a pressure of 14 which caused massive acid reflux/air in stomach (which I had never had before CPAP), which led to me finding out how to change the settings on my machine (made my ex-sleep doctor very mad) and led me to getting tests by the gastro doctor. So it has been a hellish 4-5 months of feeling worse than before CPAP because of my stomach problems...by the time I had this second sleep test with the new doctor, I was using my machine on a pressure of 8 because of the stomach problems.

So now that I have found that taking simethicone helps my stomach while using CPAP, I have been taking that for the last two weeks, so I feel better than I felt for the last 5 months. But I'm not at all sure that I feel any better than I felt before I started CPAP. In fact I went out and rode my horse today, enjoyed it immensely and then promptly crashed once I got home...just like I had been doing before and during CPAP.

I'd get those other studies. It's time for the XM-214.
Muffy

Ok, it's in the works. Both my husband and I are working on it. If the doctor says there is nothing to give me between the raw data and the 3 page summary, we'll tell him to give us the raw data. I'm going to set my machine to CPAP pressure of 8 tonight.

mar