Turning Point - Took a While, But I'm There

[Madalot]

Thanks, everyone, for sticking with me and giving me a nice, swift kick (or a thousand) in the rear end. I have finally realized and accepted that my pulmo doctor has got me covered on the respiratory issues from my neuromuscular disease. Since those are covered and I still have problems (too many awakenings AND serious daytime fatigue that is compromising my ability to actually LIVE), there are obviously issues regarding SLEEP that need to be addressed and she hasn't done a good job there. Got it.

I put on my BITCH hat today and have persuaded the sleep lab to send me FULL documentation from all three of my sleep studies AND raw data on disk from the one a week ago.

I have been promised that the package was being prepared and would be in the mail to me tomorrow.

Again - thanks for being as patient with me on this as you guys have been. For the first time in a long time, I actually have hope that we'll find the answer and I may actually start having a life again.

I'm not sure I'll know how to act if I can do things during the day and not fall asleep.

[Katt]

I am new here ... and to this whole thing ... but I have been reading your threads Mad ...


And may I say I am SO glad you are now getting thru to them .... took some work ... took some anger ... and in a better world it would not have been needed .... but am GLAD you are getting the info and hopefully closer to the answer you seek ....

[jnk]

. . . hat . . .

I assume it stands for Be Insistent, Take Charge [of one's own] Health.

[robysue]

. . . hat . . .

I assume it stands for Be Insistent, Take Charge [of one's own] Health.

LOL

And a big congrats to Maddie!

[BlackSpinner]

Congratulations!

It shouldn't have been necessary but just remember you chose "Madalot" and now you finally turned it where it should be - out to the real people who deserve the edge of your tongue.

I find it works best for me if I stay in control and ACT like I am going out of control. Acting like the furious Bitch (for me it is the Harpie) while not actually being in the state means I can push their buttons while they can't push mine.

[scrapper]

You GO Maddie.........you've taught me so much, and offered so much support! You deserve a bit of success and peace!

[rested gal]

[Madalot]

Thanks. I'm done screwing around with this. The more I think about how many conversations I had about what *I* expected out of this study and to have them come up with what they did -- Mad-a-lot doesn't do my feeling about it justice.

I remember MONTHS ago telling my doctor that I am tired of NEEDING to sleep every afternoon and her response was that there was nothing wrong with taking a nap in the afternoon. There's a big difference between being a little tired or sleepy and NOT having anything else to do and napping -- and what happens to me. If I stop moving in the afternoon (and with my neuromuscular disease, I can't keep moving but so much), I fall asleep. I'd like to see HER see clinic or hospital patients when she simply cannot stay awake. Or how would she feel if she dozed off while talking to a patient (like I did one afternoon when we had visitors -- dozed right off in the middle of the conversation).

Pain, limb movements, pressure -- I don't know, but we're damned sure gonna find out and not accept wastebasket "supine" explanation that doesn't make sense.

Tennis balls...

[Lori Dawn]

You, go, Maddie! You'll get there, ONE WAY OR A STINKIN' OTHER!

Lori Dawn

[Bright Choice]

Maddie -
I am way too new at this to give any advice but I think I'm like you - I don't like to leave a stone unturned in my quest for an answer. I have been thinking of you often and please bear with me if you have already touched base with what I am going to comment on, or if it doesn't relate to you. I just like thinking "outside of the box".

I too have had frequent awakenings and have (like you) been very diligently digging for information here on cpaptalk. I don't have an issue with AHI since obstructives, hypopneas are really not present. So, my focus has been on working with "UARS" and flow limitations , which I guess everyone has to one degree or another.

So, me being the noob that I am, I just decided to "go for it" with info gleaned here. #1 thing that I did was recognize that I probably have laryngopharangeal reflux (LPR) - or silent reflux. I was totally unaware of this syndrome until I learned more here. I have / had many of the classic symptoms. So, I started myself on Prilosec (I wouldn't advise self prescribing for anyone else - please check with your doctor). But, my awakenings have gone from 2-4 per night to 0-1 in the past week. I have been on the Prilosec for about 3 weeks. One night I slept 9 hours straight without awakening once - I was shocked!

The other eye opener was a series of Nasal Breathing videos on the internet by Dr. Krakow. I just watched them today and it was tremendously informative. It supported the recent conversation on a thread relating to an inverview with Dr. Parks and Dr. Gold on nasal breathing. What they are promoting is that one can't really have successful xpap therapy without first addressing the nasal breathing issue. Here's the link http://sleeptreatment.com/allergy-video-series It also providea an interesting approach to insomnia for anyone who needs to address that issue.

This may have nothing at all that relates to you but I just wanted to post this.

Blessings!

[Madalot]

So, me being the noob that I am, I just decided to "go for it" with info gleaned here. #1 thing that I did was recognize that I probably have laryngopharangeal reflux (LPR) - or silent reflux. I was totally unaware of this syndrome until I learned more here. I have / had many of the classic symptoms. So, I started myself on Prilosec (I wouldn't advise self prescribing for anyone else - please check with your doctor). But, my awakenings have gone from 2-4 per night to 0-1 in the past week. I have been on the Prilosec for about 3 weeks. One night I slept 9 hours straight without awakening once - I was shocked!

Reflux has been one of my "issues" for a long, long time. I've been on Prilosec & Nexium. Because of recent stomach issues including nausea, I'm seeing a gastroenterologist who says I have a "sluggish" stomach. Despite the medications I've been taking, my stomach is FULL of acid. It's not coming up like in typical reflux, but just sitting in my stomach, thus causing me to feel like crap every day. He switched me to a different medication, Dexilant. Seems to be helping some, but we may have to take it another step and work on the stomach muscles themselves. I see my doctor mid-May for a followup on that.

The other eye opener was a series of Nasal Breathing videos on the internet by Dr. Krakow. I just watched them today and it was tremendously informative. It supported the recent conversation on a thread relating to an inverview with Dr. Parks and Dr. Gold on nasal breathing. What they are promoting is that one can't really have successful xpap therapy without first addressing the nasal breathing issue. Here's the link http://sleeptreatment.com/allergy-video-series It also providea an interesting approach to insomnia for anyone who needs to address that issue.

Thank you for this! I started watching some of it, but don't feel like watching for an hour at this time of day. But I will watch it tomorrow. Something to definitely consider.

[Bright Choice]

Oops, forgot to mention, I also put a wedge under my mattress for elevation.

[SleepingUgly]

Madalot, do you take a wake-promoting agent, such as Provigil? If not, is there any contraindication for you to take it? Perhaps you should be discussing that with your physician.

I think that it's great to work on the cause of one's EDS. At the same time, it's a known fact that EDS does not remit in all OSA patients. Furthermore, I'm sure that many people with OSA have EDS due to other factors, some of which will never be known (and perhaps it's also a symptom of your neurodegenerative disorder, I don't know). One can work on trying to find the source of their EDS while taking a wake-promoting agent, and perhaps that is an option for you.

[DoriC]

Congratulations!

I find it works best for me if I stay in control and ACT like I am going out of control. Acting like the furious Bitch (for me it is the Harpie) while not actually being in the state means I can push their buttons while they can't push mine.

You've stolen my "secret weapon"!

Maddy, I'm glad you're mad, it's better than being sad! Tennis balls, indeed!!

[Madalot]

Congratulations!

I find it works best for me if I stay in control and ACT like I am going out of control. Acting like the furious Bitch (for me it is the Harpie) while not actually being in the state means I can push their buttons while they can't push mine.

You've stolen my "secret weapon"!

Maddy, I'm glad you're mad, it's better than being sad! Tennis balls, indeed!!

I think that while I was VERY angry and made it clear, I was enough in control to get my point across loud and clear.

Another thing that I told both my doctor and the woman in the sleep lab is that one of my "issues" was that I was put down to sleep at 10:08, but some idiot (or multiple idiots) were banging things around, on and off, for almost two hours right outside my door. That, plus the backup rate not being the same as I'm accustomed to (despite my doctor's response -- it was set to 7) -- I could NOT get into a good sleep. I see that I dozed, but I never got into a "normal" sleep during that first two hours.

At home, if I was having that much trouble sleeping, I would get up. I would never lay in bed for two hours like that.

Why in the heck they would be making noise like that outside a patient's room is beyond me.

I think everything that's happened (and not happened) just exploded and I spent a lot of time on the phone making it clear how I feel about it.

I told my husband last night that it's possible my doctor will dump me for both sleep and pulmonary. His response to that was if she does, she'll make it easier for us.

I haven't heard anything from her since Monday.

I should get the information from the lab by the end of the week (hopefully) then I'll figure out what to do with that.

I the meantime, I need to figure out what to do about the daytime issue of fatigue and naps. I think one thing that did come out of this was absolute proof that recliner napping is bad, but I still haven't figured out a good way around that short of going to bed, which I still have a major problem doing. I am considering trying to find a used bipap (good one) just for napping. I think for that short time, it would be better than nothing if I feel I just have to sleep in my chair. But, I hate to spend the money if there's any hope of resolving this daytime sleeping problem.