Tag Archives: CPAP

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Update: Symptoms and Doctor Appointments

Where to start? I am so behind on chronicling my life. You’d think it would be a one-liner (“Stayed home this month again, felt crappy, tried to keep spirits up.”), but there are so many subtleties to symptoms that I keep meaning to mention and so many tiny tweaks to treatments. There are so many interesting articles and blog posts that I want to comment on here and so many reasons to be hopeful and frustrated at current medical endeavors. I’ve written 100 blogs in my head this year that I thought were important and interesting ~ maybe even entertaining ~ but they never made it to the page and I’ve forgotten much of what I wanted to say. So, today, just an update.

Symptoms

First, the good news: my throat hasn’t been very sore in a while (if I don’t talk too much); my pain (below the neck) is minimal (if I don’t move too much); my dizziness is better (if I don’t stand up too much); my mood is ok (if I don’t think too much); 🙂  Haha, writing that was actually cracking me up! But, seriously, the underlying perma-symptoms of ME are stable and predictable if I don’t change my life up too much: exhaustion, achiness, tremors, horrid skin, blurry vision, stiffness, and fluishness are all manageable and (my) normal. The reality is, I feel unwell all day every day. Sometimes it makes me feel like I’m okay, I’m going to be fine and sometimes it makes me feel like I don’t want to die, I’m scared, I can’t do this anymore. My most pressing concerns lately have been, of course, the headache, terrible sleep, horrific bloating and constipation, and my free fall into less and less mobility and activity with higher and higher heart rate. Also, my brain torpor frightens me to the point that I can’t talk about it.

Thankfully, my brain pain train morphed from the high-speed TGV** to a kiddy carnival choo-choo. It still comes chugging through my skull in the afternoons and after I stare at a screen for too long, but, for the past 4 days or so, it is not torturing me. I stopped taking my Chinese herbs for a week; I don’t know if that is what caused or helped my headache, but I started them again yesterday (back down to 1/day) and we’ll see what happens.

3 weeks ago, in a place of desperation and panic about my disappearing sleep and unrelenting headache, I rummaged in my “Drugs I Don’t Take Drawer” and found gabapentin. The first night I took about 50mg (half a pill) and immediately my sleep was better. I still woke up a lot and it was unrefreshing as ever, but I slept for 8-9 hours rather than 6. That slice of heaven lasted a little over a week and now I’m back to the same terrible sleep, exacerbated by a very rare Seattle heat wave with no air conditioning. I added melatonin and went up to 150mg of gabapentin, but no relief (unless the gabapentin is the reason my headache is a better). I was prescribed trazodone for sleep, but haven’t gotten the nerve up to take it yet. I had planned to increase my dose of gabapentin first and then add doxylamine succinate and then swap the doxylamine for trazodone, if needed. Maybe I should just swap the gabapentin for trazodone since, just like last year, the gabapentin has caused awful constipation.

Let’s talk about that a bit. Within 48 hours of my first dose, things just stopped moving. It’s reached critical mass. I take a stool softener, I put soluble fiber in my tea, I drink raspberry leaf tea (thanks to a tip from Jess over at My Journey Thru ME, who wrote a great post on IBS), I take 400mg of magnesium before bed and I have been taking Miralax every single night. I’m still in bad shape, very uncomfortable, and worried that this is more dangerous than it would be in a healthy person because of my gut dysbiosis. The Good Doctor said, “You have to keep things moving because your bowels are in bad shape.” I think I’ll actually have to stop gabapentin to get back to normal.

My scariest symptom lately is my inability to do any activity without my heart rate skyrocketing. I’ve been sitting on the bathroom floor, washing my cpap equipment every week for the last 8 months. It’s never been an issue. Yesterday, my heart rate kept revving up to 110+ bpm while I sat in that same position, doing the same slow, careful scrubbing I’ve always done. This keeps happening. Taking pictures in the garden, reaching up to pick berries, talking a little too animatedly, putting sun cream on, adjusting a blanket, petting the dogs… Normally, if I were sitting down, these activities wouldn’t cause problems. Now, even sitting or lying, I feel that telltale sign (which initially registers as breathlessness, not as tachycardia), look at my HR monitor and am surprised every time: Oh, what was I thinking jiggling my foot while talking at the same time? How dare I wash my hands so vigorously. I should know better!

I can’t help thinking it is a direct result of deconditioning. It could be a direct result of illness ~ I know this is common is so many of us ~ but, the less I move, the less I’m able to move and that scares the shit out of me. So, every day I wonder: Should I push myself to “exercise” more so my body maintains some strength and life force? Or is that exactly what got me here and I should do less, less, less? This is one of the many contradictory evils of this disease: The less activity you are able to do, the more you panic and want to try doing more.

Medical professionals

I’ve had a some new appointments in the past few months:

1. An amazingly wonderful physical therapist whom I have been seeing each week. He is not really a PT; I don’t know the name for what he does. I lie on his plinth (I learned this name when I said to him, “That pain made me come off the bed. Sorry ~ ‘table’.” And he said, “Actually, ‘plinth’.”) and he finds the rotten-apple spots in my muscles and then eliminates them by restoring the circulation with magic fingers. I don’t have to move and there is very little energy expenditure (besides our tendency to talk nonstop about music, movies, books, and food. We never talk about my illness except for the initial update on my current problem areas. I probably chat more “normally” to him than anyone else in my life and always leave smiling ~ that, in itself, is worth every penny and drop of ATP). This treatment is the number one first time I have had a very obvious FIX to a problem. He worked on my lower spine pain and coccyx burning and, that evening, IT WAS GONE. And it stayed gone! He’s a magic man.

2. Stupidly, obtusely, naively, I went to see a cardiologist about my BP and HR issues, plus the fact that bowel rumbling triggers a sort of vasovagal heart flutter and lung tightening. I’m sure most of you people with ME know what’s coming. This doctor said, “I see a lot of you girls with low blood pressure and syncope problems and you all have one thing in common: low body weight. You need to gain some weight. Eat more protein and salt. I know everyone is concerned about being thin and looking good, but it’ll help. Start walking more and lifting 5 or 10lb weights and come back in 6 months.”

As carefully and stoically and graciously as I could, I said, “I am 5 foot tall. This is the heaviest I have been since college. [Here he interjected: “Right. And I bet you feel better.”] No, I don’t feel better, you moron. If I gain weight, it’ll just be fat because I can’t move very much. I don’t care what I look like because I’m just trying not to die I don’t ever get dressed or leave the house, you condescending bastard. I can’t imagine using 10lb weights because I wouldn’t be able to leave the bed for weeks can barely lift my arms, but I’ll try increasing my steps. See you never.” He’d be happy to know that I have since gained another 5lbs from the gabapentin and, shockingly, I don’t feel any different except I am even more uncomfortable in my body than I was last month (and, no, Dr. Iseealotofyougirls, I don’t mean uncomfortable with how I look, I mean it is not comfortable to lose most of your muscle tone and gain 12lbs of fat in its place!)

3. The saga of the oral appliance (OA) for sleep apnea. Here’s the wrap up: I saw the orthodontist in April, waited over a month before being told I had to see a sleep specialist again for insurance to approve the OA, and then waited over ANOTHER month before being called in to fit the OA (a 2 hour appointment!). I slept with it in for 5 hours and woke up in extreme pain. Yes, it had the obvious repercussions, such as temporarily changing my bite and making my TMJ sore, but the big problem was pain stabbing into my top and bottom right canines. It felt like they had been drilled into without anesthetic. So, back to the orthodontist for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back from the lab.

4. On a good note, after I saw my GP, she sent me a letter saying she was shocked by my decline and panicked to find something to help me and sorry the medical community is failing me and honored that I allowed her to take this journey with me. I wish I could reprint the letter here because it could restore some faith in medical professionals, but I want to be respectful of her privacy. She is leaving for her annual 2-month break, but is seeing me next week on her last day and is willing to run some new tests (finally!). I’ve researched nonstop for the last month, trying to decide what tests to request, but I’ve ended up more confused than when I started. I need to email her tomorrow with my list. If anyone has any advice, please let me know. I can always talk to her about additional tests at the appointment. Here are my thoughts:

  • Mycoplasma tests
  • Cytokine profile
  • NK cell function test
  • Hormones (ACTH, LH, HGH, testosterone, insulin like growth factor(?))
  • RNase L Panel
  • Immunoglobulin
  • Lactic acid
  • folate
  • DHEA sulphate
  • Heavy metals
  • Amino Acid
  • IgG (?)
  • potassium, copper and …?

For disability (but really don’t want to do):

  • Neuropsychological Testing
  • VO2 Max (although it would be a 1-day stress test done by somebody who doesn’t know about ME)
  • tilt table test

 

Daily gratitude:
I am grateful for the few friends I have.
I am grateful for the few hours I sleep.
I am grateful for the little energy I have.
I am grateful for the still life I lead.

** I’m sure there are faster trains now, but, back in the 90s, I took the TGV all over Europe and its speed made a lasting impression. I still say “tay gjay vay”, pronouncing the letters in French, which is how I learned it.

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General Update

I feel like it has been a while since I gave a proper update. This may be a bit disjointed as I hit the important points from the past few months.

  • 19 months sick. 1 year unemployed. 9 months on elimination diet. 8 months housebound.
  • The week before Easter, I had the best 4 days since becoming housebound. Starting April 1st, I went downhill and got no respite from the crash for over a month. Each day, I hoped for a new beginning. Each day felt as bad or worse than the day before. I was spending days in bed and, very quickly, my mood tanked. It is very hard to see the light at the end of the tunnel when you get no relief day after day. I am usually quite good at articulating what I’m feeling ~ what is worse, what would help ~ but, there was a point in late April, where I was lying alone in my room and all I could think was. “Help me.” I didn’t know who to call or what I would say. I didn’t know if I could speak ~ I had been crying for days and was at a point of hopelessness that made me mute. I managed to text E. who gave me a little pep talk and made me feel less alone. That’s all anyone can do. Things started to ease up the second week of May. I’m not back to my normal crappy baseline yet (no walking around the garden, no stretches), but my body feels a bit better and my brain feels like I’m a different person: As usual, as soon as I get some space from the symptoms, I bounce right back to someone who can talk and laugh and see a future.
  • Which brings me to what caused that crash: I think I got so much worse because I stopped wearing the cpap. I really didn’t believe it was doing anything except annoying me. The mask was waking me at night, the necessity of washing all the cpap parts was exhausting, the tape over my mouth wasn’t doing my skin any favours… But, it finally dawned on me that I got worse about a week after I stopped using it. And then I started to feel better exactly one week after I started using it again. So, I’m a believer. I may be aware of the cpap mask waking me, but I am not aware of the apnea awakenings and those are the ones that are really affecting my health.
  • Which brings me to my sleep: I am still having a rough time. I intend on writing a post detailing all the information and tips I have gleaned from various sources on how to improve sleep without prescription drugs, so stay tuned for that. For now, suffice it to say I have tried EVERYTHING. As I have mentioned before, I am addicted to reading the New York Times on my phone in bed before I go to sleep ~ but I wear amber-lensed, blue light-blocking glasses after the sun goes down so I am supposedly protected from the way the screen affects my brain. Well, my birthday night, instead of reading the NY Times, I spent far too long looking at Facebook and answering all the wonderful happy birthday posts. I forgot to wear my amber glasses and wound up staying awake until 6am, tossing and turning.
Zeo graph: These lines should be SHORT when I'm sleeping. The "W" at the top means "Wake".

Zeo graph: These lines should be SHORT when I’m sleeping. The “W” at the top means “Wake”.

This is very unusual for me ~ I always fall asleep right away, it’s the waking up throughout the night that is my problem. So, for the last two nights, I made a strict rule of no phone or computer screen of any kind after 8pm and no tv after 9:30pm. My sleep was instantly better. Look at last night:

Proper sleep waves.

Proper sleep waves.

So, like the cpap, I believe I really underestimated what the phone or ipad light does to my brain. The room is black, but when I close my eyes I see lights, colours, moving lines, exploding stars. Basically, if I open my eyes it is darker than if I close my eyes. Someone on Phoenix Rising surmised that I was experiencing hypnagogia, stuck between wake and sleep. Either that or staring at my phone really, REALLY messes with my brain.

  • Which brings me to the supplements I am currently taking for sleep (and all the others, too, plus prescriptions). Here is my daily regimen:

2x Probiotic
2x tsp fiber
100mg Colace
Chinese Herbs (Lightning Pearls, currently 3/day)

2,000mg Acetyl L carnitine (1,000mg 2/day)
1,200mg Alpha Lipoic Acid (400mg 3/day)
4,000mg Borage Oil (960mg GLA) (2,000mg 2/day)
10,000iu Vitamin A
4,000iu Vitamin D3
2,000mg Fish oil (1,000mg EPA, 50mg DHA)
Vitamin B-complex (Thorne #12)
100mg CoQ10
400mg Magnesium glycinate
200mcg Selenium
400mg Riboflavin/B2
5,000mcg Biotin
15mg Zinc sometimes
500mg Vitamin C sometimes

Valerian sometimes
1mg Melatonin
100mg Phosphatidylserine
Tart cherry juice concentrate

5ml Zyrtec
Thyroid hormones (T3 and T4)
Pantanase nasal spray
Clindamycin topical lotion
Miralax as needed
Albuterol inhaler as needed

  • The magnesium (for muscles), melatonin (for sleep onset), valerian (for relaxation), tart cherry juice (for pain and melatonin) and phosphatidylserine (to decrease nighttime cortisol) are specifically for sleep (I tried the Seriphos ~which is phosphorylated serine~ for a few weeks, but it seemed to keep me awake. The Good Doctor switched me to the new one). The other new additions to my protocol are biotin (the dermatologist told me to take this for the vertical ridges in my fingernails and hair loss) and the Chinese herbs. I stopped these for a week while I was feeling really terrible and thought I might be getting a cold, but it never materalised, so I started them again, increasing the dose much more slowly than I had originally.
  • My diet is still the same (no gluten, grains, dairy, legumes, tomatoes, potatoes, or eggs), but I think I am going to add rice any day now… I’ve just been waiting until I have a more predictable day-to-day baseline so I don’t blame crippling muscle pain (which happened on the 17th for one day only from head to toe for no apparent reason) or the disappearance of sleep or an extreme headache on a rice cake.

I want to write about my recent doctor visits and some of the amazing presents I got for my birthday, but not today. Just know that I am flying high with all the love and generosity that was showered on me. I keep saying it, but one more time: I am one lucky lady. I have the most compassionate and caring family and friends imaginable. I thought I always knew that, but I am truly humbled today. NOTHING matters but loved ones! In the end, they’re all we have.

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Try something different. Surrender.

After over a month it occurred to me that maybe just maybe this downturn has been caused by the break from my cpap. I guess, if I’m honest with myself, I didn’t quite believe my apnea was a problem. I sleep through my brain “waking up” 49 times an hour, but I don’t sleep through the cpap mask waking me up 20 times a night, so my subjective view of my sleep is that it is worse when I wear my cpap. What I know for sure is, my symptoms wax and wane in direct relation to how well I sleep. Although I know my ME/CFS was caused by viruses and the flu shot taking advantage of an extremely stressed and depleted body, I sometimes wonder, if I’d slept well my whole life and known about the apnea sooner, could I have avoided this illness?

When I went downhill in April, I reversed any changes I had made in the weeks before: I went back to Now Foods vitamin B2 and alpha lipoic acid, since I had recently changed brands. I stopped the Seriphos supplement, I stopped the Chinese herbs, I stopped driving anywhere, I stopped walking and doing stretches, I stopped taking baths since they raised my heart rate so much. But nothing has been working. I have to try something different. Since my health insurance is taking its sweet time approving my apnea dental device (shocker), it’s going to take well over a month to have it made. Verdict: back to the cpap. Keep your fingers crossed that this makes a difference.

My other plan is to surrender to this new low. Somebody on an ME/CFS forum recently said, “We may have lost everything in our lives, but WE HAVEN’T LOST OUR LIVES.” It stayed with me. I’ve spent 1.5 years fighting, investigating, grieving, pleading, hoping, wailing, warring… Again, time to try something different.

I’m sorry to throw quotes at you, but this, too, has stuck with me for weeks and it is my current inspiration:

Very little grows on jagged rock.
Be ground.  Be crumbled.
So wild flowers will come up
Where you are.

You have been stony for too many years.
Try something different.  Surrender.

~ Rumi

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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

Title Credit.

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Sunshine on my shoulders makes me happy

It’s like I flew to the Caribbean over night. I just sat in the sun for an hour, wearing only a tank top and shorts. I had to come inside in case I was in jeopardy of getting a sunburn. Sunburn?! A few days ago, it was snowing! And it is only meant to get hotter through the weekend. It definitely lifts my spirits. Although, you know how odd it is when you have a cold during the summer? That’s how I feel. I took my bad turn for the worse at the end of last summer, so it feels all wrong to be sick in the heat. Intense spring sun is meant to energize and bring a low hum of excitement and vibrancy. Instead, my head is full of cotton balls, my body is swollen, throat is scratchy and my muscles are extremely stiff. But, it’s warm out… focus on the positive!

IMG_20130329_153753

And, speaking of positive moments, I thought I should let you all know that I felt good yesterday. Yesiree, I said GOOD. I drove myself to an appointment that was only about ten minutes from my house. I stopped at a store and got lunch from the deli (this is the first time I have walked into any building but a clinic or hospital in months). I walked around the garden with my dogs. I stayed awake until 11pm and actually felt okay after 6pm ~ able to watch a movie, able to laugh.

There always has to be an unfortunately and, unfortunately, my night was quite tortured. I stopped wearing the cpap about a week ago as an experiment. My allergies flared up and I was too stuffy and inflamed in my sinuses to use the nasal masks (the alternative is a full-face mask, but mine is extremely bulky and wakes me up as I thrash around). My brain during sleep fascinates me. I would love to see an fMRI of the whole night. I would love to do a sleep study in my own bed and really see what happens from minute to minute. My brain is on fire. It is infected by unease. In the brief moments of waking ~ like surfacing periodically from quicksand ~ before the incubus’s long fingers push me down into unconsciousness again, I feel somehow crazed, like the mental version of wild-eyed. I am tensed against the cold or curled on the edge of the mattress, trying to avoid the heat. I am clawing my way out of nightmares that are always about running from whatever is trying to kill me or desperately needing a rescue, with no hope of help.

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If I had to objectively interpret what is going on beyond the obvious fear/loss of control dreaming, I would say perhaps I do need a prescription remedy to calm whatever chemicals are misfiring or maybe I am low on some neurotransmitters and, just like I take thyroid hormones everyday, I should be taking something to regulate brain chemicals… But that’s just it: they’re BRAIN chemicals. That’s scary. And it’s such a crap shoot. What Rx to choose?

So, I am at peace with my current stubborn obstinacy to sleep meds and maybe, if I ever take that step, I will wish that I had done it sooner, but I refuse to regret my choices.

As if to reinforce my thoughts, when I called the closest hearing aid store to inquire about custom-fitted earplugs, the lady that answered the phone told me she had taken half an Ambien and wound up in an ambulance to the ER, with doctors thinking she had had a stroke.

Anyway, I don’t know what the no-cpap experiment shows. I feel like I’m sleeping a little better and I think my Zeo graphs show slightly better sleep cycles, but I feel worse when I wake up and during the day. More tired and stiff and groggy and beaten up. Maybe it’s just allergies. My husband is watching tv with tissues shoved up his nose, so I know it’s definitely in the air.