so very tired and it isn't getting better

carbonman wrote:

-SWS wrote:very similar to what Dr. Dement described in his book (Promise of Sleep) about eventually adapting to train nose after moving near the tracks.

The only thing I could find on train nose was
the aero-dynamic shape of the nose cones on bullet trains.

When I moved near to a train route, I luckly did not
have any development of that type, so no adaptation was necessary.
Guess I was just fortunate to have escaped this phenomenon.

I guess that the extent that someone is afflicted w/this condition,
could be problematic to their cpap therapy.

....but, it could have been advantageous for my bike riding....

.....hmmmmm......

ozij wrote:
I caught that one too, carbonman, and I was thinking how funny it was in two contexts:

• twas brillig has UARS which is a nose problem, and I assume -SWS had a nose at the back of his mind
  And the of course, I suppose more than one snorer can be aptly described as suffering from "Train Nose".
  As may their partners.

Hmmmmm speaking of the rear placement of that extra nose -- didn't we have something about ice cream cones a while back?

O.

-SWS wrote:

robertmarilyn wrote:All throughout the night there were really short brain waves that she called tiny seizures. I'd go from a few seconds of REM to my brain being totally awake...over and over and over. My brain never settled down...it's start to settle and then take off again.

Muffy wrote: Was it hypersynchronous theta?

Depending on the overall diagnostic analysis, anticonvulsant medication just may help

-SWS wrote:I had hyper-arousability in mind...

twasbrillig wrote:Mar - do you suppose there is any chance that CPAP is causing some of the brain hyperactivity? Is is possible that your previous sleep problems have been exacerbated by CPAP?

Well I do know that having to lay in bed with a machine and mask and all the stuff on my face, doesn't make laying there without feeling like I am getting any sleep, any easier than not having all that stuff on. Although the machine and mask may make things a little bit less ok, I think my problems are extreme enough that the added machine and mask are just a small fraction of the problem. But the GERD and air in my stomach are major sleep and comfort inhibitors.

I feel like I have been headed downhill since I started CPAP treatment almost a year ago, and I am beginning to wonder - after all the adjustments of pressure, masks, etc, getting desensitized to the machine and even doing yoga now - whether for some of us, CPAP creates more problems than it solves. I know that I had more arousals in my CPAP titrations than in my diagnostic study. I have been getting blamed for this (maybe I have psychological problems) but I wonder if anyone has stopped to do a before-and-after comparison across the board of all the stuff they measure in a study. As you note, breathing doesn't seem to be the main problem in your case. It's nice that your doctors are actually willing to look at the other things.

Nothing about using the machine has made me feel better so far and I have done all I can do to make the machine and mask as doable as possible. I have been very willing to go the extra mile to make CPAP work since I have felt so tired for so long. But when the GERD and air in stomach came with using the machine and using the machine didn't result in feeling rested...that bubble burst. Now, maybe if some med helps my brain calm down and rest, maybe I will find that the machine helps me feel better too...but I will have to find a pressure that doesn't cause GERD/air in stomach.

I am going to keep following your thread, Mar. I have been having a heck of a time with the diagnostic part of my sleep problems. Perhaps your story will inform mine. Keep posting (when you feel well enough!) Take care.

Our modem from our interent provider just died on us so we were 24 hours without internet...but we are back now...hope things start getting better for you somehow...I'll keep researching things from my end

-SWS wrote:

robertmarilyn wrote:All throughout the night there were really short brain waves that she called tiny seizures. I'd go from a few seconds of REM to my brain being totally awake...over and over and over. My brain never settled down...it's start to settle and then take off again.

Muffy wrote: Was it hypersynchronous theta?

Depending on the overall diagnostic analysis, anticonvulsant medication just may help:
http://content.karger.com/ProdukteDB/pr ... 116383.pdf


Carbamazepine is the medicine mentioned in the link you posted and that is the medicine my doctor mentioned might help my brain to calm down. Then supposedly I would get good REM sleep and that would result in me feeling rested during the day. The amount of medicine she has in mind for me to take is a very small amount.

mar

Muffy wrote:

robertmarilyn wrote:She called my brain hyper active something -SWS discussed with me privately.

Was it hypersynchronous theta?

I don't remember her saying those words exactly...so I'm not sure.

robertmarilyn wrote:All throughout the night there were really short brain waves that she called tiny seizures

If that was alpha intrusion, I think calling them "tiny seizures" would be inaccurate and misleading.
Muffy

I know that she mentioned that seizures wasn't the 'right' word but that is the word she used over and over throughout the discussion. I looked up alpha intrusion so I could better understand what it meant and I see it is often linked with things like fibromyalgia. I know she mentioned that some of what I showed is often present in those with fibromyalgia. When I get the paperwork I will share it so that you can see what the doctor was actually saying and what she was looking at to come to her conclusions so far.

BTW, Monday will be my EEG test and Tuesday will be my contrasting MRI test. Wed will be my first appointment with the new endocrinologist that this doctor is recommending.
mar

Muffy wrote:

-SWS wrote:

robertmarilyn wrote:All throughout the night there were really short brain waves that she called tiny seizures. I'd go from a few seconds of REM to my brain being totally awake...over and over and over. My brain never settled down...it's start to settle and then take off again.

Muffy wrote: Was it hypersynchronous theta?

Depending on the overall diagnostic analysis, anticonvulsant medication just may help

Well, there's a couple of ifs there, like IF there's really hypersynchronous theta, and "bad" hypersynchronous theta at that (there's plenty that isn't).
Based on what's presented so far (which, from a purely factual point of view, is zip) this could easily be just a pile of alpha intrusion.
Muffy

Muffy wrote: Did she mention REM behavior disorder?

robertmarilyn wrote:I know that I often wake up throughout the night with a big jerk (and I don't mean rooster) And even when I was as young as 5 years old, my mom told me that I move around a LOT before I fall asleep and during my sleep. The tech that did both of my sleep tests in Feb commented on how active I was in my sleep... Before XPAP, I probably would wake up several times a week or more with one of my legs jumping in the air...I do think I toss and turn because of an inability to STAY asleep...I don't know if I have PLM...I just know that I do have my legs jump and wake me sometimes.

robertmarilyn wrote:But the techs were nice and they did a great job of keeping an eye out for loose electrodes...I really flopped around a LOT and they had to add extra tape to my leg wires several times during the night. I was doing a very good job of Restless Leg Syndrome for the first several hours...my legs didn't hurt but they bothered me and I kept having to move them around...that happens to me when I am having trouble sleeping...usually I would have gotten up and read when I have felt like I did last night but that would have messed up the sleep study even more so I just tried to sleep.

What are complex partial seizures?
Complex-partial seizures (formerly psychomotor or temporal lobe Epilepsy) are characterized by a complicated motor act involving impaired consciousness. During the seizure the patient appears dazed and confused. Purposeless behaviours such as random walking, mumbling, head turning, or pulling at clothing may be observed. Usually, these so-called "automatisms" cannot be recalled by the patient. In children this seizure may consist of staring or lip-smacking, and therefore may be confused with the absence seizure described below.

Muffy wrote:Well, a choice between alpha intrusion and seizure disorder would be a no-brainer (so to speak).

Oh yeah! When she used the word seizure though, I do think she was trying to make clear that at this point she doesn't think I'm having real seizures. But it was also clear that she wants the MRI and EEG done right away. In fact, her office dealt with my insurance company yesterday to get through the pre-certification and made sure that the appointments were made right away.

What's the chance of getting some printouts of the areas in question? This seems so contradictory with the seizure thing.

I will try to get them...my husband was with me and I can enlist his help on getting the pages that she showed me...she said she is mailing me my results.

Did she mention REM behavior disorder?
Muffy

She did mention it in the context that the medicine she thought might help me is used for older men with REM behavior disorder. She didn't actually say I had that though. Also, she wants to talk to my husband and me a few days after my EEG test (which is on Monday) and also a few days after my MRI test (which is Tuesday) to go over all of this more. She is very perplexed by what she is seeing and wants to rule out anything "serious". And she wants me to see a neurologist once I have the test results.

mar

-SWS wrote:

Muffy wrote: Did she mention REM behavior disorder?

I realize that sleep anecdotes are not definitive. But they can sometimes be clues for further investigation. And based on some of that extreme sleep movement that Mar recently mentioned, REM behavior disorder is not yet out of the question in my mind.

Earlier in this thread Mar also posted SpO2 results from her CMS-50 with a whopping artifact rate of thirty-some percent (excessive motion is perhaps the most likely artifact candidate, short of fingernail polish

ha ha, no finger polish here!

obscuring signal induction via impeded or filtered light waves). As a side note, I can't generate a thirty-some percent artifact rate with my CMS-50 while awake and very aggressively moving my fingers and arms. Mar may have a bad CMS-50, or she may be generating those artifacts via means other than excessive motion. But wild flailing during sleep may also account for those excessive SpO2 artifact rates as well.

In light of the excessive sleep motion Mar repeatedly described, nocturnal complex partial seizures with associated REM behavior disorder (excessive psychomotor motion or automatisms during REM) may not be off base here.

maybe? I am really active in my sleep it seems...although I can't say how active I am in REM sleep since we've seen little of that...in fact, from what my husband has seen, when I am sleeping really deeply, where it is hard to wake me up, I don't move at all.

Mar, do you per chance show any hints of complex partial seizures during the day? Any daytime automatisms?

I asked my husband and parents and they have never seen any signs of this during the day. In fact, I think I am always very aware of what I am doing. No "lost' moments or behavior that I am not aware that I am doing, at all.
mar

-SWS wrote:Mar, I have a feeling that you and your doctors are going to come through these diagnostics with improved sleep and daytime energy. Fingers crossed.. Good luck!

robertmarilyn wrote:I've been trying to get the full nocturnal polysomnogram (NPSG report) for both my diagnosis night and my titration night from my sleep doctor and I've hit a brick wall. All he and the office tech say I will get is the three page doctor's summary that I already have. They claim they don't even have a template for what I am asking for...apparently between the three page summery and what would be 1000s of pages of raw data, there is nothing they can/will give me.

Muffy wrote:Going back to Post #1:

robertmarilyn wrote:I've been trying to get the full nocturnal polysomnogram (NPSG report) for both my diagnosis night and my titration night from my sleep doctor and I've hit a brick wall. All he and the office tech say I will get is the three page doctor's summary that I already have. They claim they don't even have a template for what I am asking for...apparently between the three page summery and what would be 1000s of pages of raw data, there is nothing they can/will give me.

Tell 'em "OK, fine, gimme the 1000s of pages of raw data (given the Miracles of Modern Technology, it'll easily fit on a CD)". Depending on the software, it should come with a Physician Reader to be able to view the tracings. I think it would be important information to know that if there is something on the new NPSG to see if it was on the old NPSG.
Muffy