Update from the Insomnia Wars (Chapter ???) LONG

[robysue]

When I last wrote an update in early May, my Insomnia Monster was waging a counter-offensive aided by his new allies, Depakote Side Effects and Tree Pollen and Resurgent TMJ Pain. While the number of nighttime awakenings has not grown from its (then current) level of 3 or 4 per night, the trio had begun playing havoc with my ability to get to bed by 1:30 AM, even though I continued to struggle get up at 7:30 every single morning. Needless to say, as my bedtime became more ragged, I was re-developing symptoms of (severe) sleep deprivation, and I found my daytime functioning plummeting again and the Insomnia Monster was gaining grounds on Bedtime, Wake up Time, Total Sleep Time, and How I Feel When I Wake UP. To top it all off, I had a deeply disturbing meeting with two PAs in my (old) sleep doctor's office that focused on a wide range of issues, but did NOT address the roles of either the Depakote Side Effects or Tree Pollen in aiding the Insomnia Monster---the two issues that I specifically wanted to talk to my PA about at that May 5 appointment.

I had barely enough time to mention that the Depakote Side Effects were soon to be exiled because the Liz, the PA at the neurologists office had told me to start weaning myself off the Depakote the previous day AND had come up with a brilliant idea to investigate concerning the chronic migraines and vertigo. I didn't get a chance to discuss Tree Pollen, and the soon to arrive Grass Pollen and Weed Pollen, who would happily take over Tree Pollen's role in devastating my sleep when Tree Pollen reached the end of his annual season some time in mid May to early June.

So I came out of that meeting disgusted, demoralized, and very upset.

Well, what's happened since then?

I spent May largely in a holding pattern not really knowing what to do and pretty demoralized. Hubby and I spent a fair amount of time talking about how to regroup. Liz had ordered a genetic test for anomalies in MTHFR gene, which controls (among other things) the protein that is used to properly process folate. More about this later. Hubby insisted that as upset as I was coming out of the May 5 meeting with Keryn and Mark (the PAs in the sleep doc's office) that it was time to fire that doc and his staff. I was emotionally not up to this since I was also struggling with end of semester crud and grades. So hubby started making all the phone calls---there's a reason I've remembered to put him on every single HIPAA release at every single doctor. He arranged for the old sleep doc's office to send us all the written records, including all the dictated reports after every single office visit. He had to do this TWICE because the first time, they only sent us half the records. I had my first consult with the CBT psychologist about a week and half later and even brought the (incomplete) sleep doctor's records with me. We talked (which was good), and he gave me a few things to try for easing my sense of isolation with the CPAP mask on every night AND some things to try for the insomnia. One of which was to drop the 1mg of melatonin every night because (as he said), in some people melatonin can cause TMJ pain. And think about replacing the melatonin with a teaspoon of honey at night. As he said, the honey is an old folk remedy for insomnia. And even though there is no scientific evidence that it works, a teaspoon of honey at least tastes good even if it doesn't wind up working at all.

And so, melatonin and depakote were both discontinued by mid-May. And at the suggestion of Liz, the neurologist's PA, I went back to taking Zytec, but only a half tablet (5mg) since in March and early April I'd been unable to tolerate a 10mg dose of Zyrtec on a daily basis for my early spring Tree Pollen allergies. And Allegra and Claritin just don't seem to get the job done for me.

Within a few days of quitting the melation, the Resurgent TMJ Pain started to abate. I am no longer waking up with severe TMJ pain and this is GOOD. I am, however, experiencing significant TMJ pain during the daytime now and it tends to grow worse and worse until I can put my splint in at bedtime. Within 5 minutes of getting the splint into my mouth, the TMJ pain largely disappears until after I take it out the next morning. And why don't I just wear the splint all the time? Good question. The reason is that my three or four month old TMJ splint is already looking really, really ragged with serious wear marks and I don't want to break it during the daytime. I've been back to the dentist and he's stumped and concerned and said my TMJ is beyond what he's comfortable treating. So he gave me a referral to a specialist in TMJ pain who is also a sleep dentist as well. That appointment is set up for mid July---earliest they could get me in. But at least TMJ Pain is no longer a factor in waking me up at night. And the night guard pretty quickly dispatches him at bedtime, so the TMJ Pain seems for now to not be an active player in aiding the Insomnia Monster in his counter-offensive.

Coming off the Depakote did end the Depakote Side Effects. But as I came off the Depakote, the Migraine Monster came back. Chronic daily migraines are NOT as painful as episodic migraines. But the thing is, they are, well, chronic---as in every day (for me). The pain ranges from being just niggly, but there to bad enough to put me in a foul mood to (occasionally) close to a mild episodic migraine. And the migraine pain waxes and wanes through the day. So as I came off the Depakote, the Insomnia Monster just did a quick substitution on his team of allies: Out goes Depakote Side Effects and up steps Chronic Migraines & Vertigo to take his place. Still, given how badly the Depakote was effecting my mood (among other things), I'd rather face the Chronic Migraines than the Depakote Side Effects as the enemy.

About the time the Depakote Side Effects had been totally and completely replaced by the return of Chronic Migraines, hubby and I took a little trip. Well, not a little trip. A big long trip in our unairconditioned 1995 Voyager MiniVan. And why? Well, Son goes to college in MN and Daugher goes to college in MI. Daugher has an apartment and doesn't come home, but Son goes to St. Olaf and lives in the dorms. And the weekend before Memorial Day was when his finals ended and we had to get him moved out on that Monday. Ordinarily hubby's twin brother (Uncle), who lives in St. Paul could have helped, but Uncle and family were down in LA watching Uncle's eldest son graduate with an MFA from LSU. Uncle did let us borrow his house so we didn't need a hotel. But we drove from Buffalo to Kalamazoo, MI on Saturday night (as in ALL night), crashed at Daughter's for the day and drove to St. Paul on Sunday night (as in ALL night) to crash at Uncle's part of Monday before driving down to get Son. We stayed at Uncle's for a full day and a half before driving back to Kalamazoo (during the afternoon and evening arriving around 1:00 AM) to visit with Daughter for several days. Daughter's apartment is unairconditioned and part of the time we were there it was hot and humid. (and part of the time it was pleasant).

On Memorial Day, we planned leaving Kalamazoo in late afternoon for the drive back to Buffalo. Mother Nature had other plans. While we were eating our late, late lunch/early supper at around 4:00ish, the tornado sirens went off. As we had heard no thunder or rain, we walked outside to take a look: The sky was really ugly with sickly, slightly iridescent green undertones that any Midwesterner knows is NOT GOOD. So we prudently decided to hide in the rather awful basement of the old house Daughter's apartment is in. The weather did turn nasty---and a huge tree was blown down just a few doors north of her house in fact. While the all-clear signal was issued by around 5:00, the wild weather continued with tornado watches and warnings continuing to be issued. The last of the watches expired about 8:00pm and we left shortly after. We decided to stop in Battle Creek for gas, having forgotten to do that in Kalamazoo. We saw lots of serious tree damage along the interstate and some of it did indeed look like twister damage rather than straight wind damage. When we pulled off in Battle Creek it took us almost 40 minutes to find a gas station with power. Lots more storm damage. At every place we stopped across MI and southern Ontario, the locals told us that the weather had been really, really bad earlier in the evening.

The upshot of all this traveling and driving at night is that my already shaky 1:30 AM target bedtime was completely demolished. Between the night time driving, the fact that both kids are night owls (isn't that practically a requirement for college students?), the hot humid weather, and my own night owl tendancies, bedtime on the trip was happening between 3:00 and 4:00 in the morning a lot of the time. On the positive side, I did find out that I prefer to nap in the car WITH Kaa on my nose instead of without. First major nap driving out to Daughter's was Kaa free and ok. Second nap, was horrid: I kept waking myself up feeling like I was gasping---a sensation I did NOT have before starting CPAP ever. After that second Kaa-free nap, the rest of the car naps on the trip all had Kaa on my nose. Most of them were "ok" in the sense of being about as good as I ever manage to get to sleep in a car (on the bad side of mediocre, but not all the way to terrible). One of the Kaa-naps was actually GOOD and one of the Kaa naps was Terrible.

That second Kaa-free nap where I kept feeling like I was waking up gasping for breath has been on my mind a lot since the trip. Same thing happens in the recliner when I inadvertently fall alseep in front of the TV (and ALWAYS a show I want to watch). Pre-CPAP I didn't consciously wake up feeling like I couldn't breath or gasping for breath. And now it happens if I fall asleep without the CPAP and if I have a really NASTY cluster or superlong apnea in spite of Kaa, it can happen at night with Kaa on my nose. Not often, but occasionally. I've just about decided that this phenomenon is being caused by my highly sensitive body. The apnea undoubtedly had been creeping up and developing for several years and perhaps at a rate that was so slow that my body was able to keep adapting to it and arousing me just enough unconsciously on a frequent enough basis where it never got to the point of needing to startle myself WIDE awake GASPING to kick start the breathing. Now, in spite of all the protests the body has made (and continues to make) about Kaa overstimulating it when I want to be asleep, I think my body also has completely fallen in love with not needing the unconscious, but constant arousals anymore. And so the body has begun to loose its super high sensitive, but unconcious vigilance against all those hypopneas with arousal that I used to have (pre-Kaa). And when I am sleeping Kaa-free, that newly lacking of super sensitive unconscious vigilance forces my conscious mind and my concscious-level of high sensitivity to kick in when the apneas start: And so now I some how know when I'm waking up, it's because I can't breath.

But back to my main story: When we got back to Buffalo, the results of the genetic test were sitting in the mail: Yes I had a genetic mutation in one copy of my MTHFR gene! Whoopee! I've never been so happy to have a medical test turn out positive. Why? Well, as Liz had explained it to me, folks with this genetic problem don't metabolize folate all that well. And folate is related to how the migraine drugs that I'd not been able to tolerate are processed the body: LOW folate levels lead to these drugs' half-lives being extended, which in turn means that they build up in the body past the anticipated therapeutic levels. Bing! Finally an explanation of WHY something has been happening. And MTHFR gene anomalies are also apparently connected with being sensitive to many drugs in general. And the decreased folate levels combined with the too-much of the migraine drugs leads to problems with the brain's ability to regulate all three monoamine neurotransmitters associated with mood. (And mood changes were the CRITICALLY INTOLERABLE side affect in all three of the migraine drugs they had me try.)

And the fix? There's a prescription vitamin (medical food) called Deplin that contains L-methylfolate, the stuff that folate turns into when properly metabolized by the protein coded by the MTHFR gene. Folate can't cross the blood-brain barrier, but L-methylfolate can. And the Deplin pills are super concentrated with this stuff: One Deplin tablet contains 7.5 mg of L-methylfolate, which is equivalent to something like the amount of L-methylfolate that would be metabolized from 66 800mg Folate tablets. And the headache specialists at the place I go to have had good luck with migraineurs who can't tolerate topamax, lamictral, depakote, etc and who do have MHTFR gene anomalies responding really well to taking Deplin.

So a prescription of Deplin was waiting for me. Or more correctly, a prescription had been called into an on-line pharmacy from LA because the stuff is expensive and not covered by insurance. I've been on the Deplin for not quite two weeks. The severity of the headaches is WAY, WAY down, even though they're still occurring almost daily. But more notably, my MOOD has improved rather dramatically---I feel more like my old self than I have felt at any point since starting xPAP last September. My old optimism is beginning to return. And with it, some of the angst and anger about the whole OSA diagnosis and the whole xPAP thing is beginning to resolve itself. As with any prophylactic measure, the PA has told me it could take 4 to 6 weeks to see the full effect of the Deplin. So I'm very, very happy at the progress I'm already seeing.

And the meeting with the new sleep doctor? Well, it left me upset. But in looking back, I think I may have been overreacting to somethings and hubby is has a much more positive take on it. He says I need to give myself the time to see if I can "train" the new sleep doctor to see me the way I want her to see and treat me. And a couple of positive things HAVE come out of that meeting.

Concering the bedtime and sleep maintenance insomnia: The new doc wants me working on extending my sleep time. Not by taking naps, but by working on "both ends" of the night: She's told me that since I'm a night owl, that if the only way I can get up to more than 5 1/2 hours of sleep is by sleeping until 8:00 or 8:30 (instead of moving bedtime back to 12:30) then I should do that since I've got the freedom to sleep that late right now in the summer. And worry about fixing the problem of getting up in time to teach in the fall closer to fall.

The biggest positive thing is that the new doc understands that my allergies ARE an issue that is causing problems with xPAP therapy right now in that my airway is somewhat inflamed and swollen due to the allergies. And that inflammation does seem to be making the Auto BiPAP increase the pressure towards the high (uncomfortable) end. And that when my congestion is minimized, the pressure doesn't seem to increase so much. So in addition to recommending the heated hose (which doesn't easily work since I have a System One and a stingy insurance company) and an increased humidity setting, she's also prescribed Flonase for me.

And the Flonase added to the daily Sinus Rinse and half-Zyrtec really seems to be doing something positive. Last three nights my AHI has been lower than it's been for a long time (below 1 the last two nights) AND the time EPAP = 4 has been WAY up (90% EPAP has not hit 6 for the last three days and last night 90% EPAP = 4). IPAP's been down some, but not as much. But IPAP=8 seems to bother the stomach less than EPAP = 6 does.

And so I end this novel length post with this: For the first time since skiing season ended, I'm in a GOOD mood most days. I can't say I like putting Kaa on my nose every night, but the level of angst when I sit there and look at Kaa is going down again. I'm feeling more like my old self. And my energy levels may finally be starting to get back to where they were pre-CPAP. Brain fog is still an problem.

I'm still recovering from the havoc the trip and the month of May played on bedtime. Right now, I've let my schedule settle at Bedtime around 2:00 and Wake up time at 8:00. Bedtime ranges, however from 1:30 to 3:00 and that's the main thing I have to start dealing with. Number of night times wakes is pretty steady at 2--3, but I've had several nights now where it's been 1--2. So that's almost there!

So even though it was touch and go for April and May, with MY new allies of Deplin and Flonase, I've stalled the Insomnia Monster's counter offensive and I'm ready to go on the offensive myself!

[busylady]

So glad you've had some positives. I really did read your whole post. Your vertigo---- I had that problem 30 yrs ago and determined (with no doc's help) that I had a bad case of candida. I went on an extreme allergy elimination diet and cured myself. I love cheese, and can eat some, but have to be careful how much. Also at that time I discovered my migraines were caused by caffeine, for one thing. No caffeine since then. In fact chocolate causes a migraine about 24 hrs after I eat it. Oh, and I'm a chocoholic! Used to hide it on the top shelf away from the kids. Now I can have one bite of a brownie or candy.... it has to be something realy, really good to tempt me. But, I can't eat one bite more than about once a week. My non-chocolate migraines went away after menopause!

An aside, to you from our previous chats, last night was not a good one -- 21 Sensawakes and 9.6 AHI. The previous night was so good. Win some, loose some. Keep ploddin' along. Oh, and I understand your comments on tornado weather. I'm a Kansas girl. Married a guy going in the Navy so I could see the world.

[M.D.Hosehead]

Glad to hear your good news, RS.

Your story illustrates how genome-based targeted treatment will improve lives, and the field is exploding.
Couple that with something like IBM's "Watson" for diagnosis, and you can foresee revolutionary change in medical care in the offing.
How to pay for it so everyone can have it for all their conditions is the big unknown.

[Bright Choice]

So glad to hear the good news. The gene testing is fascinating and I am thrilled for you that there may be a light at the end of your tunnel. I am keeping my fingers crossed for you! The best thing is that you are feeling more upbeat and like your old self. That is a huge step!

My very best wishes for you1!

[robysue]

@MD Hosehead: Yes, I do think that genome-based targeted treatments will eventually become common place and that they could well improve treatments for a variety of things. I understand why tests aren't done before having problems tolerating medication right now, but it sure would be sweet if we get to point where they can run a test to see if you're at high risk of some truly scary side effects before starting you on daily maintenance meds.

I continue to be amazed at how much my overall mood has improved since starting the Deplin. The severity of the headaches has dropped on most days---even on a bad headache day. But then I do have multiple layers of headaches and they're not all migraine related.

And over all, even on a bad day (like today), things are nowhere near as bad as they were back in late April and early-to-mid May when things were starting to spin badly out of control and I was really worried that it would become as bad as last October and November in terms of daytime functioning. Here's hoping that by the end of summer I really am feeling like my old self every day and sleeping a decent number of hours at in a decent time frame.

[SleepingUgly]

Glad to hear this about the folate and headaches!

I have always thought that your sleep restriction therapy was both a solution and a problem, so maybe a break from it is good advice.

[robysue]

I have always thought that your sleep restriction therapy was both a solution and a problem, so maybe a break from it is good advice.

Well, it's only a semi-break actually.

At the new sleep doc's suggestion, I am not worrying (too much) about my night owl tendencies this summer while I'm working hard on trying to get the total sleep time back up to my "average" pre-CPAP sleep time of between 6 and 7 hours of sleep a night. Don't think I'll ever get to 8 hours a night, but I also don't think I really need 8 hours to function. A very good doctor friend of ours (who's a gerontologist) has told me more than once to focus on getting enough sleep for me to feel well and not worry at all about how much sleep that actually turns out to be.

Right now I'm allowing myself to sleep until 8:00 am most days. If I really can't get up at 8:00, I'll tell my husband to get me up by 9:00 since I need to be up by then for the summer class I'm currently teaching. But it's a rare day that I can't get myself out of bed by 8:15 and most days, I'm up by 8:00.

On the other end of the night things are problematic, but improving (I hope). Many nights (like last night) I really am not sleepy enough to mask up until about 3:00 am. My own defined target bedtime still 1:30---in the sense that I'll call it a night as soon after 1:30 as I get sleepy. Problem is I'm just not particularly sleepy between midnight and 2:00 am right now. So most nights I'm getting to bed between 2:15 and 2:45. And the occasional nights where I succeed in getting to bed earlier than 2:00? They tend to have far more middle of the night wake ups, which I seem to find more disturbing than simply not going to bed until later.

In other words:

If I go to bed between 2:30 and 3:00 and get up around 8:00, I'll have about 2 or 3 wakes and get a total of 4:40 -- 5:10 of sleep for the night and wake up feeling "almost refreshed" much of the time with a slightly groggy mind.

If I go to bed between 1:30 and 2:00 and get up around 8:00, I'll have more like 5 or 6 wakes and at least one 15--20 minute "restless period" in the middle of the night. So when I only have one restless period, I'll get somewhere around 5:10 -- 5:30 of sleep for the night, and I tend to wake up less rested with a much, much more groggy mind. Those longer wakes seem to be the problem for me.

So the very short term goal is to get that bedtime consistently being around 2:30 (plus or minus 15 minutes) without the long restless period. The long term goal by the end of summer? Get back onto a schedule that works for my fall semester AND gives me the 6 -- 7 hours of sleep that I know I need to function on a long-term daily basis.

[SleepingUgly]

What are you doing at those late hours of the night before bed when you aren't sleepy? TV? Computer? Lights? Lots of moving around? Unless you're using blue-light blocking glasses, you're exposing yourself to light that will make it more difficult to get sleepy. Perhaps you should get some. Also, do boring stuff, like read something incredibly boring (I'm not sure what to recommend to someone who actually might find a math textbook interesting...).

I have the same problem with delayed phase, but I don't have the bonuses you have of needing very little sleep to function well. I am not sure what to do about my delayed phase... For example, I'm now having to wake up between 7-7:45am daily during the week, and I'm tired during the day. This past weekend, I could sleep until 8:45am, and even though it only afforded me about .25-.5 hours of sleep more, I felt better. I have always said that no amount of sleep is sufficient for me, but 8 hours that ends at 9am (or later!) yields a better outcome than 8 hours that ends at 7 or God-forbid 6am. What to do?

[robysue]

What are you doing at those late hours of the night before bed when you aren't sleepy? TV? Computer? Lights? Lots of moving around? Unless you're using blue-light blocking glasses, you're exposing yourself to light that will make it more difficult to get sleepy. Perhaps you should get some. Also, do boring stuff, like read something incredibly boring (I'm not sure what to recommend to someone who actually might find a math textbook interesting...).

Mainly boring stuff. Crosswords, Soduku, Cryptoquote, etc. I usually take my shower/bath later than I should, but what the hey it helps relax me. I now put Kaa back together for the night sometime after 1:00 AM since this no longer keys me up like it did back in October and November. Filling in the daily log of "How to do I feel?" that I started back after you and others asked me what I wanted to accomplish with CPAP back on my RobySue's Summary Graphs thread. (And that data shows some real improvement in the quality of my day-to-day life since starting the Deplin and Flonase!) If I'm not out of energy, I'll even do the dishes or straighten up the dining room table a bit. Problem is basically I've always been a bit of a night owl. My current bedtime routine itself takes about 30 minutes or so since I don't rush anything. If I'm not sleepy enough after that, I'll typically read something in the dining room for a bit. When I read it's usually the Old Testament. I'm currently working my way through 1st Kings with its strings of good and evil kings of Judah and Israel; most of them seem to be evil. Once I'm appropriately almost sleepy, a chapter or two of the OT seems to do the trick.

And I'll admit, I am bad about getting that TV and computer turned off as early as I should. Particularly since Hubby is willing to stay up till 1:00 with me if we've got Star Trek: The Next Generation on and it's a decent episode---and this is proving to be a decent enough substitute for the snuggle in bed and talk time that I still keenly miss since I have not yet discovered how to talk with the mask on without getting a tummy full of air. If hubby falls asleep before it's over, I wake him up and tell him to go to bed and then typically turn the TV off. So the TV and computer are off for an hour or so before my de facto 2:00 am bedtime most nights.

I have the same problem with delayed phase, but I don't have the bonuses you have of needing very little sleep to function well. I am not sure what to do about my delayed phase... For example, I'm now having to wake up between 7-7:45am daily during the week, and I'm tired during the day. This past weekend, I could sleep until 8:45am, and even though it only afforded me about .25-.5 hours of sleep more, I felt better. I have always said that no amount of sleep is sufficient for me, but 8 hours that ends at 9am (or later!) yields a better outcome than 8 hours that ends at 7 or God-forbid 6am. What to do?

Ah yes, delayed phase. And I really do understand that comment about sleep ending at 6am or 7am never seems as good as sleep that goes on further in the morning. I think that's part of why the current 2 am to 8 am schedule is leaving me less tired than the 1:30 to 7:30 schedule did. There's something about being able to sleep until at least 8:00 that's deeply satisfying to my psyche I think.

And delayed phase syndrome---it's common in my family and it's clear both my kids have a tendency towards it. The family always refers to it as "getting your days and nights turned around." I did find back during my spring semester that NOT allowing myself to sleep in on weekends made it easier to get to bed on time (i.e. 1:30) all during the week. I also think for me (and my kids) the problem is Sunday night/Monday morning: If we sleep too long on Sunday morning, we don't get sleepy early enough on Sunday night to make it easy to wake up Monday morning. So we drag through the day on Monday, but wake up when the sun goes down like a hoot owl. Monday sets the stage for the whole week much of the time. And so by Friday we're dragging. And sleeping in on Saturday and Sunday then triggers the cycle all over.