Long time since I've been here .... UPDATE

[robysue]

It's been a very long time since my last post.

Lots of (nonsleep related) stuff has been going on and I wound up getting to a point where I simply had to go cold turkey.

But I'd like to come back and start posting and I thought I'd start with an update.

Back in October 20112 (around the time of my last post) things were going OK. Not great, but ok. I was waking up feeling decent enough in the morning and I'd finally gotten to the point where I no longer dreaded putting the mask on each and every night. Sleep doc number 3 was treating me with benign neglect---more on that in a minute.

The insomnia, however, was starting to raise its ugly head yet again and by the end of November it had permuted into a type of insomnia that I have traditionally NOT had much trouble with: I was waking up frequently in the middle of the night and finding myself unable to get back to sleep in a timely fashion. Sometimes there was aerophagia with the wakes, sometimes not. Around this time the headaches also started to increase, although mainly they were tension headaches rather than migraines. And the TMJ started to act up again big time.

Needless to say, my daytime functioning started to deteriorate rather quickly and by the middle of December I was feeling really lousy all the time. I woke up feeling like sh*t; felt exhausted and sleepy most of the day with frequent headache pain that would kick in shortly after lunchtime. Final exams were an out right disaster for me---I missed my grade deadlines in all my classes. And at a long awaited follow-up with sleep doc #3 (who was also headache doc #1)? His response was: Your problem is a mood disorder. I don't even believe you have apnea at all. And I can't continue to treat you (for headaches or sleep problems) unless you are willing to start taking Lamictal again.

Note: Lamictal is technically an antiseizure med that is frequently used for mood stabilization in bipolar disorder. Back when sleep doc #3 was merely headache doc #1, he had presribed Lamictal as a migraine prophylactic. It triggered severe, evil mood changes at the initial

starting dose---severe enough where hubby grew concerned about my mental well being. Alarming mood changes are listed among the known sided effects of Lamictal. Like any semi-intelligent adult, I refused to take Lamictal given my previous experience with taking the drug for all of two weeks in Spring 2011. And sleep doc #3/headache doc #1 fired me.

Hubby had the foresight to call the psychiatrist that I started seeing at the insistence of sleep doc #3 back in Spring 2012 after the first time sleep doc #3 told me that I probably didn't have sleep apnea and that my sleep problems and my daytime functioning problems were all caused by a mood disorder. Note: The psychiatrist has told me (more than once) that I don't need to be on a mood stablizer, but there is a "mood disorder not otherwise specified" on my medical record, presumably so that he can continue to get paid. The psychiatrist has been a huge patient advocate for me ever since I started seeing him. I only see him about every 6 months or so. Just before the time everything started to blow up, I'd seen his PA because of some emergency rescheduling, but after things started to go to h*ll in a handbasket, hubby insisted on calling the psychiatrist himself. (Hubby is on all of my HIPAA forms just so I don't have to do phone tag.) The psychiatrist and his PA have helped me find a new quality PCP, get transferred from sleep doc #3/headache doc #1 to sleep doc #4 and headache doc #2 (who are different docs). Headache doc #2's PA is a PA who I had seen before and had a great working relationship with. Sleep doc #4 appears to be a keeper.

At any rate: In late December the headache PA started me on trigger point injections for the tension headaches (and they help alot) and with the help of the pyschiatrist, I was able to get a consult with Sleep Doc #4 in January. We talked alot about what was going on with my insomnia, he looked at the data printout from Kaa and aggreed that the apnea seemed under control and since both the headache PA and the psychiatrist have been working with me on insomnia issues, he concluded that once the other issues were better under control the insomnia would likely get better. He scheduled me for a 6 month follow-up, however, since I was having some real problems with sleep.

From February 2013 through June 2013, however, my sleep continued to deteriorate. And alarmingly, my AHI as reported by Kaa started to climb. A year ago, my AHI was typically between 1.0 and 1.5 most nights and was almost always under 2.0. Now? It's been bouncing around pretty severely the last two months. On vacation, it topped out at 11.** one night. It's mostly above 2.0 and it's frequently above 3.0. The last 45 day average was about 2.8; the 45 day average for the same time frame a year ago was 1.4. So when I went in for my follow-up earlier this month, Doc #4 first ask how I was feeling. After giving it some thought and looking again at the data and considering my answer to his question "What might have changed last winter?" (My answer "I have no idea."), he observed that on all my previous titration studies, my spontaneous arousal index was above 6 and much above the spontaneous arousal index on my diagnostic study, Doc #4 asked: How would you feel about doing another sleep test?

So Sleep Test #5 was set up as a split study. It happened on Tuesday night---the day after my birthday. But the insomnia monster was present and it took too long to get the data they needed to see what the apnea itself was like and so the tech never came in to put the mask on my nose. So tonight I'm heading off for Sleep Study #6, a full night of BiPAP titration with my own mask.

And by happenstance: Hubby is going for Sleep Test #2, his CPAP titration study.

So wish us luck.

[Pugsy]

Good to see you again Robysue.
So sorry that things have gone to hell for you but I do hope that they will get things sorted out so you can get some relief very soon.
Thanks for stopping by...we have been worried about you. It's good to hear from you again.
Don't be a stranger again. We missed you.

[HoseCrusher]

Good to hear from you.

But, what a bunch of crap you have been through. I hope you find your way back to a low AHI.

[49er]

Welcome back RobySue. Wow, the crap you have been through with doctors. Good luck with this sleep study and I hope you get things things straightened out quickly.

49er

[Todzo]

Through years of experience I have come to believe that better circulation in the brain helps the brain deal with life. I know that it is very easy to over breath and that my tendency to do so has been greatly exacerbated by severe trauma in my past. I also know that if I over breath my brain takes a major hit in it's circulation tummy[3].

My experience is that the insomnia and aerophagia that I experienced while using my CPAP under stress were well controlled by using EERS[1]. I believe that EERS simply maintains better blood flow to the brain. With better circulation in the brain breathing control is more consistent and arousals from respiratory effort are eliminated. Better sleep means a better you.

Give your doctors the old [1,2].

I am off of SSRI/SNRI drugs for over a year. I am getting more healthy.

I honestly to wish you and yours the best!

Todzo

p.s. I think your being “fired” by your “doctor” will turn out to be a blessing!

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[3]: Philip N. Ainslie and James Duffin, Integration of cerebrovascular CO2 reactivity and chemoreflex control of breathing: mechanisms of regulation, measurement, and interpretation Published online before print February 11, 2009, doi: 10.​1152/​ajpregu.​91008.​2008 AJP - Regu Physiol May 2009 vol. 296 no. 5 R1473-R1495
Link: http://ajpregu.physiology.org/content/296/5/R1473.long

[BlackSpinner]

Welcome back! You have been missed!

So sorry that things have not been going well. I hope that your next test helps a lot.

[nanwilson]

I have often wondered how you were....happy to hear you are back and HOPEFULLY on the right track to your old self. Welcome back! you are more than due for some good news... hope it comes soon.
Cheers.. and chip up
Nan

[ems]

Wow... I really do wish you and hubby much good luck with all of this. Please continue to let us know how things are going.

[kaiasgram]

robysue, I've thought about you often this past year and I'm so sorry to hear what you've been going through. I'm glad you're back in touch here.

I had the very same thing happen at the one and only sleep study I had a chance at -- couldn't sleep enough. I'll keep my fingers crossed for both you and your hubby and I know you'll let us know how everything goes.

When you feel better you get a "do-over" on that last birthday.

[Janknitz]

Good to hear from you, we were worried about you! Sorry to hear it's been so difficult for you.

[Dreamrobot]

Wishing you well and to your hubby too,
I always followed your situation, hope you get some useful data from the titration,
Dreamrobot

[avi123]

Frankly, I thought that you died. Otherwise, you could have just curtailed your posts and tell us about it. Good to know that you're alive!

[DoriC]

Glad to see you back, I hope posting about this difficult situation will help you in some small way. Please keep us updated and hope you get things sorted out quickly. We need you here!

[kteague]

Welcome back Robysue!

[DreamDiver]

Robysue, I'm sorry to hear you've been through so much misfortune. I hope your next titration goes swimmingly. Best of luck!