so very tired and it isn't getting better

robertmarilyn wrote:...the last time I tried to get it, through the head office guy, he pretty much told me I'm not getting the NPSG because the three pages I had far exceed the required whatever and he hung up on me.

I tell ya, at this rate, we won't be gettng any cards this Christmas.

BTW, chances are that even without the Physician Reader option the file will still be able to be viewed, since most major sleep software packages have the ability to use the same file format (*.edf).

Muffy

Mar - In regard to YOUR medical records: They are YOURS. You are LEGALLY entitled to every page of what has been generated, written, compiled etc in regard to your medical care. When you talk with office administrators, they usually act as if it is the opposite - that the medical records are theirs, and they can decide if they want you to have them. I have had to go many rounds at one place, and I had to try twice to get my hynogram. However, I think it helps to be as benign as possible. Let them know you don't have an axe to grind, you are just trying to get informations to make good decisions.

The only catch is that they are allowed to charge you a fee for copying, and postage if they mail it. There are limits, but it isn't terribly cheap. At one place, it cost me $14.00 just to get about a dozen pages. And they are allowed up to 30 days to comply.

You can google this yourself using terms like medical records HIPAA, etc. Again, it is legally required for them to give you your records!!! Don't take no for an answer.

Muffy wrote:

robertmarilyn wrote:...the last time I tried to get it, through the head office guy, he pretty much told me I'm not getting the NPSG because the three pages I had far exceed the required whatever and he hung up on me.

I tell ya, at this rate, we won't be gettng any cards this Christmas.

Nonsense! Here are a few Christmas cards early:




MERRY CHRISTMAS TO MUFFY AND MAR!!!

Six cards already and it's only June!

-SWS wrote:

Muffy wrote:

robertmarilyn wrote:...the last time I tried to get it, through the head office guy, he pretty much told me I'm not getting the NPSG because the three pages I had far exceed the required whatever and he hung up on me.

I tell ya, at this rate, we won't be gettng any cards this Christmas.

Nonsense! Here are a few Christmas cards early:



MERRY CHRISTMAS TO MUFFY AND MAR!!!
Six cards already and it's only June!

OH THANKS! I needed those What a day brightener! I didn't know Santa was a 'girl' though

Twas - I'm going to have my sleep doctor request both full NPSGs reports for me. I've had a pay a $15 fee with some doctors before and I'll do that if I need to do so. I really do want to see both reports and I'd like to see the diagnostic one to see if I really even need to be on CPAP. I'd like to see why he thought I needed to be on a pressure of 14 also. I'm tempted to have every doctor I go to ask for copies of the reports. That doctor got a lot of money from my insurance company and from me for 2 full sleep tests, a machine, mask, and other things. And if he had had his way he would have never even seen me once.
mar

robertmarilyn wrote:OH THANKS! I needed those What a day brightener! I didn't know Santa was a 'girl' though

I believe the male is "Santo" (Santa Maria, Santo Domingo....)

O,

ozij wrote:

robertmarilyn wrote:OH THANKS! I needed those What a day brightener! I didn't know Santa was a 'girl' though

I believe the male is "Santo" (Santa Maria, Santo Domingo....)

O,

...I thought that was Ron Santo, who played for the Chicago Cubs way back in '69.


There's nothing wrong with a second career based in the Holiday business...

Hi everybody,

I wanted to update you on the goings ons of this week. Monday I had an EEG...lots of electrodes and wires stuck to my hair and goop on my head Since they told me to just relax, I managed to nap through some of it.

Tuesday was an MRI. The first part was spent inside the tube (about 25 minutes) with loud clanging, banging, thumping...really loud but I would dose off from time to time. Then they pulled me out and put dye in an IV in my arm and put me back in for another round of the same loud clanging, banging, thumping.

Wed was the appointment with my new endocrinologist. The hardest part of this procedure was the 3 hour wait in the waiting room. There had been an emergency that morning and the new doctor had to take on the patients of another doctor so all the appointments were running very late. But the meeting with the new doctor went well and blood is being drawn to test for the many things that had been mentioned here and in other thyroid posts. Plus he is having my cortisol checked. I've read about this and can see how much stress can affect the body. I have realized that somehow I need to learn to minimize my stress or perceived stress to allow my body to function as best as it can. I'm working on that area of my life no matter what the test results turn out to be.

My blood test is Sat and and I will be seeing the endo doc two weeks from the last appointment. My sleep doctor had been out of town and will be out of town through all of next week. So won't know much for a little while. I have decided to do my next endurance ride (50 miles) in Sept rather than trying to do one in July. I need to be able to build up my fitness and my riding time more slowly so that I don't do a lot of crash and burns from overdoing it. Getting fitter in moderation will allow me to gain a much greater fitness level than pushing myself too hard too fast. Did I ever tell you guys that my goal used to be to run a 100 miles at a time? Well my body couldn't handle the abuse...got too many running injuries too often so the furtherest I could train to was 33 miles at one time. Still an incredible running distance I know, esp now as I look back and realize what an accomplishment that was with my easy to injure legs.

Anyway, I love long distances and being outdoors and my horses have allowed me to transfer that love to a sport where I can do the distance with them. But I do need to build myself back up...not just my body but my mind because there is stress involved and building up in small bites will allow me to handle getting to the bigger bites in a healthy manner.

After our long waiting room wait on Wed, my husband and I went next door to eat and ended up eating with a couple that was 20 years older than us. They had been the appointment before me and we had a nice dinner discussing common topics. She has fibromyalgia, hypothyroidism, sleep apnea (and she has been on a machine for years) and a host of the other things we talk about here. Poor thing fits in very well with the rest of us I told them about CPAPtalk.com. They aren't big internet users and are on dial up but maybe we will see her here one of these days. We have their contact info and will probably be keeping in touch in the future...they have 4 chihuahuas so they are animal lovers like a lot of us.

So even though the wait was long at the doctor's office, something good came out of it by allowing us to meet these really nice folks.
mar

It sounds like they are being very thorough in tracking down what is causing your fatigue. Kinda feel like your health is your job right now? Good for you on following through with all of this! Remember to figure out some rewards for making it through all the testing and appointments. They can be exhausting, and you have to remind yourself you deserve some pleasure, too. If you have to wait for your normal rewards, you could find some to hold you over till you can get back to the horses.

Here's hoping something clear and easy shows up in your testing!

riverdreamer wrote:It sounds like they are being very thorough in tracking down what is causing your fatigue. Kinda feel like your health is your job right now? Good for you on following through with all of this! Remember to figure out some rewards for making it through all the testing and appointments. They can be exhausting, and you have to remind yourself you deserve some pleasure, too. If you have to wait for your normal rewards, you could find some to hold you over till you can get back to the horses.
Here's hoping something clear and easy shows up in your testing!

I want you to know how helpful you and others have been to me. I have printed out the details about things to test and my husband has read them. He went with me to each appointment and spoke with my endo doctor just as much as I did. He is helping me to stay focused. Also, I HAD planned to go to the EEG and MRI myself, while he worked but the anxiety and fatigue I was feeling pretty much wiped me out the day before (Sunday) and we realized that there was no need for me to do this all alone (esp since town is so far away and each trip in meant a day in town)...instead we were able to go together and at least make each day as fun as possible around doctors appts

And once the doctors visits were over I've been able to relax. That's where I realized just how wound up I was. Robert is helping me to realize it is ok to take it slow and easy. I know I get scared I might never get going again, but I have done so in the past...gone from serious operations (UPPP and titanium plate and screws in shoulder to mention just two "downers") and gotten in shape again. But I do need to not push myself so hard...some of my pushing is mental and emotional and I need to not do that to myself in a way that makes me crash.

I will have some things to ask you once I get results. Thanks for your help and support.
mar

I read recently (don't remember where, and I'm paraphrasing) that our main problem with returning to fitness is that we tend to do it using our memory of what we could do, instead of paying attention to our body as it is now.

I would also imagine that for a person so focused on ednurance like you, mar, has too have to very very mindsets, one for training in which you're highly attuned to your body's messages to stop, rest, recuperate and the other for challenges, in which your mind dictates to your body that now it the time to endure.

Sounds like a right and wise decision to concentrate on training and wait for September.

O.

ozij wrote:I read recently (don't remember where, and I'm paraphrasing) that our main problem with returning to fitness is that we tend to do it using our memory of what we could do, instead of paying attention to our body as it is now.
I would also imagine that for a person so focused on ednurance like you, mar, has too have to very very mindsets, one for training in which you're highly attuned to your body's messages to stop, rest, recuperate and the other for challenges, in which your mind dictates to your body that now it the time to endure.
Sounds like a right and wise decision to concentrate on training and wait for September.
O.

Yes, I think I have to change my mindset in order to move forward and stay healthy. -SWS pointed me to a website that deals with the mind, that I looked over and then went from there exploring the concept that my mind can certainly play a part in wearing me out. I know what I just said is very oversimplified and not quite correct but still, at least that is an avenue that I can work on when physical avenues aren't as easily accessible.

And I do have a feeling that if I approach my love for activity correctly, for my body, that I may be able to get out there and do what I like to do rather than getting out there and beating myself to a pulp by overdoing things past what my body can handle. I've always taken a lot to extra time to recover from races and hard workouts compared to others (and this might have to do with some of my physical limitations/health problems) and the only way I could continue to improve as an athlete was to recognize I needed that extra time to recover. I can look at this time now in that light and work with what my body needs and probably go a lot farther and enjoy things more than if I try to brute force my way through things. Which reminds me of what -SWS mentioned too, that trying to be something that isn't really me can wear me out...once again, not exactly his words but something that I realize I need to stay aware of and work on.

mar

robertmarilyn wrote:I can look at this time now in that light and work with what my body needs and probably go a lot farther and enjoy things more than if I try to brute force my way through things.

Have fun, when it becomes "work" and no fun, watch your training as well as the horse's training. Make it fun again.
I remember how much "work" is involved. Sometimes I think that they should have vet checks for us humans too.

You do need to "start were you are in" getting fit again so you are wise to wait until September and work on your fitness level until then.

I have had Rheumatoid Arthritis for almost 20 years now and keeping fit is a big part of dealing with this condition. Every time I have a flare or need to slow down for some other reason, I have to determine where I am at fitness wise, start slowly again and build myself back up to a level I can then maintain and maybe build on. It can be hard work and difficult to "start where we are" but it's the only way to progress.

Good luck!

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

robertmarilyn wrote:...I finally have some updates on various medical situations...went AWOL the last few weeks...

I'm glad you're back and 'back on the hose' . Interesting to read about other's experiences. Sounds like your new doc's a keeper and really looking out for your best interests!