so very tired and it isn't getting better

twasbrillig wrote:Late post - it's been on my mind, Marilyn, that you mention your legs kicking about at your most recent study. Maybe I missed something, (this has been a long thread) - but did your doctors rule out Restless Leg Syndrome? You mentioned it jokingly, but didn't the techs and doctors think all the leg kicking was a sign of something being wrong?

I just had my follow-up visit with the doctor concerning my sleep and day tests, this afternoon. We never discussed RLS but that is because there are signs of a variety of neurological problems that need to be addressed so I will be going for more testing. For my day test, with the four naps, even though I did fall asleep within 7 minutes every time, my brain was so active that I rarely reached REM. But then, for my night test, my brain was active almost all the time too. Within each 30 seconds that they would study, all types of brain patterns were going on and the doctor said it was hard to even label the major brain pattern for each section since so much was going on in each section.

The two sleep doctors had their partner in Las Cruces, who is both a sleep doctor and neurologist, look at my results. Some of the activity I exhibited can be seen in folks with lupus, fibromyalgia, and autoimmune system disorder patients. 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.

One good thing is that at no time did my oxygen level fall below 90...in fact it was usually above 92 or higher most of the time. She does not think the brain activity has anything to do with obstructive breathing. I showed that I maintained an AHI of 3.8 on a pressure of 11 (I think she said that I had 4 centrals). So she would like me to set my machine on CPAP 11 (and I am going to set the epr at 3 and hopefully I can handle this pressure without pain from air getting in my stomach). But really, the sleep apnea wasn't discussed much at all.

I am being scheduled for an EEG and a contrasting MRI this week. Then I am being sent to a neurologist with my results. The doctor is hoping that nothing major shows up and that I might be able to be treated with a small dose of anti seizure meds before bed, so that my brain can get rest and then I will feel rested during the day. (The medicine she mentioned is used for Parkinsons' patients and REM behavior disorder). Really though, she doesn't know for sure how I will be treated until she sees the results of the EEG and MRI...we will start some kind of treatment before I see the neurologist but once I get into a neurologist my treatment could changed, based on what he or she thinks. Neuro doctors are in short supply around here so they are booked up...I know the doctor wants me to be able to get into one soon.

My dad does have RLS and I'm pretty sure I have it too so I will try to remember to ask the doctor about that...she is mailing me all my results...there is a lot of info she had highlighted and notated...she even took my husband and in into the sleep lab to show us my data on the sleep computer...she showed how it was impossible to find much that looked normal.

For the last two weeks, I have been trying to get out and ride my horses and still work out some...about every three days I have totally crashed and burned...so wiped out my body totally ached and I could hardly move. I have been following the forum but have been too tired to type at all...plus I was trying not to obsess about the upcoming doctor's appt. I've been exhausted, yet in bed it seems like I will drop off to sleep and then jolt awake (like I have always done)...now we get to see it on the data from my sleep studies...that is exactly what I have been doing.

Oh, my heart waves were wacky too. Things would be going along fine and then my heart would speed up and then it would stop (for about an inch on the piece of paper). Not really funny, I know...but the doctor was at least reassured that my oxygen levels stayed up. She said my heart may be reacting as best as it can to all the activity in my brain. The heart doctor she consulted thought the stopping looked like sinus arrhythmias.

I will be getting the results in the mail soon (we were at her office until almost 6pm) and I should know when my EEG and MRI are scheduled when her office gets back to me tomorrow. She called my brain hyper active something -SWS discussed with me privately. Also she gave me the name of an endocrinologist that I may check out because I do want to make sure my thyroid is being properly taken care of.

mar

robertmarilyn wrote: I just had my follow-up visit with the doctor concerning my sleep and day tests, this afternoon.

Wow, mar, that's a lot of information, without many answers. But at least you're well on the way now to discovering what's really going on with you, via this process of elimination, and I imagine that offers quite a bit of comfort to you. You're presenting quite a challenging puzzle to your doctors, and I bet they're very motivated to properly diagnose and treat you. I trust that you'll get to the bottom of all these unanswered questions, and you'll be feeling much better in time.

I don't know how you're able to handle all of this, but you're obviously a very strong person, and you certainly have my admiration. (By comparison, my sleep issues seem frivolous.)

Thanks for the update, mar. Hang in there. We're all pulling for you.

BleepingBeauty wrote:

robertmarilyn wrote: I just had my follow-up visit with the doctor concerning my sleep and day tests, this afternoon.

Wow, mar, that's a lot of information, without many answers. But at least you're well on the way now to discovering what's really going on with you, via this process of elimination, and I imagine that offers quite a bit of comfort to you. You're presenting quite a challenging puzzle to your doctors, and I bet they're very motivated to properly diagnose and treat you. I trust that you'll get to the bottom of all these unanswered questions, and you'll be feeling much better in time.
I don't know how you're able to handle all of this, but you're obviously a very strong person, and you certainly have my admiration. (By comparison, my sleep issues seem frivolous.)
Thanks for the update, mar. Hang in there. We're all pulling for you.

Thanks Jan...that is a nice (non witch) picture of you on your thread I'm worn out. But I have been following your thread and BBs thread and reading the other threads...just don't have the brain power to write much. Thanks for your sweet words...they are very welcome right now (((hugs))).
mar

robertmarilyn wrote:

BleepingBeauty wrote:

robertmarilyn wrote: I just had my follow-up visit with the doctor concerning my sleep and day tests, this afternoon.

Wow, mar, that's a lot of information, without many answers. But at least you're well on the way now to discovering what's really going on with you, via this process of elimination, and I imagine that offers quite a bit of comfort to you. You're presenting quite a challenging puzzle to your doctors, and I bet they're very motivated to properly diagnose and treat you. I trust that you'll get to the bottom of all these unanswered questions, and you'll be feeling much better in time.
I don't know how you're able to handle all of this, but you're obviously a very strong person, and you certainly have my admiration. (By comparison, my sleep issues seem frivolous.)
Thanks for the update, mar. Hang in there. We're all pulling for you.

Thanks Jan...that is a nice (non witch) picture of you on your thread I'm worn out. But I have been following your thread and BBs thread and reading the other threads...just don't have the brain power to write much. Thanks for your sweet words...they are very welcome right now (((hugs))).
mar

Rut-roh. Muffy's triplet confusion is apparently contagious.

(And I agree with mar, Jan - that's a very nice pic of you on your thread!)

Post when you can, mar. We're not going anywhere.

robertmarilyn wrote:[
For the last two weeks, I have been trying to get out and ride my horses and still work out some...about every three days I have totally crashed and burned...so wiped out my body totally ached and I could hardly move.
mar

Hi Mar, it's amazing that you're able to retain all that information and relate it here so well. All of us are thinking of you. Your comment above brought out my "mommy" instincts and I was wondering if your docs say it's OK to engage in such strenuous activities until they have a definitive answer? I've never ridden a horse so I don't know what's "too much". Best regards, Dori

Good to hear from you, Mar! All those pesky procedures and the typical "mind churn" that goes with all that are bound to make you feel plenty fatigued.

Hey! All that gives you a free pass to ride horses at least a teeny bit and rest a whole lot! Just makes the rest of us jealous...

Hang in there with those tests!

DoriC wrote:

robertmarilyn wrote:[
For the last two weeks, I have been trying to get out and ride my horses and still work out some...about every three days I have totally crashed and burned...so wiped out my body totally ached and I could hardly move.
mar

Hi Mar, it's amazing that you're able to retain all that information and relate it here so well. All of us are thinking of you. Your comment above brought out my "mommy" instincts and I was wondering if your docs say it's OK to engage in such strenuous activities until they have a definitive answer? I've never ridden a horse so I don't know what's "too much". Best regards, Dori

I forgot to mention that after visiting with the doctor and seeing just how very very busy my brain is and how little rest it gets (I already knew this but seeing the data confirmed it), that I'm going to go easy on myself. I'm going to get outside with the animals but not push myself like I had been doing over the last two weeks...I don't need the total collapse thing going on every few days...thanks for the mom thoughts....
mar

Oh Mar,

You seem to have it all, you're brilliant, clever, superb horsewoman, and have a devoted husband. It doesn't seem fair you have to have complex health issues. With all the specialists you are going to see, they may find simpler answers than you think possible. Above all, I hope you can find a definitive answer for your fatigue. If you got the proper treatment, you could live with many of the possible conditions - but the fatigue you have have experienced, must be like daily torture.

As for the picture, we were at a party last summer, I was laughing when a friend took the picture. I liked it because it caught the spirit of who I am - not the Jan who has been sick with somethin' or other more than she likes.

When your doctors listed Fibromyalgia as a possibility, I recalled one of my doctors telling me if I had to have a brain-scan, not to get upset over the findings. Fibromyalgia leaves the same appearing lesions in the brain as M.S.-- only you do not have M.S. This was somewhere in the late 1980's, I don't know if research has proved different now.

You were a great support to me in my pre-doctor appointment crisis. I'll always remember your kindness to me, and how much I appreciated it. I want you to be well, and fully enjoy your life. I'm glad you posted, I have watched your thread, and I saw the posting early today, and hoped you would respond.
Jan

BleepingBeauty wrote:
Rut-roh. Muffy's triplet confusion is apparently contagious.

(And I agree with mar, Jan - that's a very nice pic of you on your thread!)

Post when you can, mar. We're not going anywhere.

Thanks BB,
mar

-SWS wrote:Good to hear from you, Mar! All those pesky procedures and the typical "mind churn" that goes with all that are bound to make you feel plenty fatigued.

Hey! All that gives you a free pass to ride horses at least a teeny bit and rest a whole lot! Just makes the rest of us jealous...

Hang in there with those tests!

Yeah, I think I'm going to rent a whole bunch of movies and enjoy the air conditioning! I really am going to back off of what I was doing. I was afraid I'd go in and they'd tell me it was "all in my head"...well they DID tell me it was all in my head but not the way that means they don't believe a thing I say...when I think there is not going to be any kind of resolution, I end up picking myself up again and just trudging on. And that is not always a good thing, esp when I am already tired.

Thanks for your support,
mar

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

Was it hypersynchronous theta?

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

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?

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.

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.

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

And if the brain wave disturbances are actually based in REM being repeatedly obliterated before REM has a chance to establish, then pharmaceutical REM suppression may yield better sleep and daytime vigilance.

twasbrillig wrote: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 suspect more than a few of us probably do experience more sleep arousals after CPAP is introduced during the PSG. And if those additional arousals are based in discomfort or sensory input (versus CompSAS), then we are probably expected to acclimate---very similar to what Dr. Dement described in his book (Promise of Sleep) about eventually adapting to train nose after moving near the tracks.

However, I doubt the entire population will satisfactorily adapt to noise while sleeping near the train tracks. Similarly, I don't think the entire population will adequately adapt to CPAP-based sensory arousals. And perhaps a UARS patient such as yourself, twasbrillig, is neurologically predisposed to more discomfort or sensory based arousals during sleep.

-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......

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.