Brain Biofeedback

New Brain Biofeedback Regimen

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The biggest complaint people have about LORETA neurofeedback is they’re tired afterwards, my trainer told me. I stared at her. I hadn’t noticed anything different. But then since I’m always tired, I probably wouldn’t have. And, anyway, if you’re working your somnolent brain, it’s bound to be tired.

My cockiness got a real whooping after that. This past week marked a change to the new brain biofeedback regimen. One day I have single-electrode biofeedback, and one day LORETA. You’d think it would be the LORETA that would knock me over. Nope. It was changing that single electrode from CZ (middle top of head) to PZ-O1 (left back, sort of halfway between top of head and bottom of skull and to the left of midline). They had changed the location because CZ was assessed as normal in my EEG back in March, while PZ-O1 was busy taking a permanent break from working. It overproduces alpha waves; that may be why I continue to have trouble reading and learning and with language.

Well. PZ-O1 most certainly did not like being woken up. I probably didn’t have such a problem the first time we tried this location in the first week of April because I had received direct stimulation of the brain via transcranial direct current stimulation. And although it was in the F3-Fp3 position, somehow it helped the training in the PZ-O1 position so that it wasn’t so tiring. This time, there was no stimulation because it had been too much for me. And, as well, we were working on slightly different frequencies than the first time. Now, we will continue to enhance gamma brainwaves while inhibiting alpha waves in the 8-10 Hz range. We want me to continue to produce high-frequency alpha waves; that’s why those aren’t included. We are also monitoring busy brain and brainwaves in the 2-4 Hz range.

My heart rate dropped with each three-minute biofeedback screen, and reading dropped it even more, just like it did in the CZ position. But reading didn’t produce my best gamma output, maybe because this area is directly implicated in my reading issues.

After that session, I was visibly tired to everyone, really thirsty, and starving, and I went to bed very, very early. I have not gone to bed that early in eons. I slept a long time for me.

My second LORETA session was a bit of a kerfuffle because they were using a different machine and hadn’t realized that its DVD player had long since decided to retire. And so instead of watching a DVD, I watched biofeedback AVIs, which loop. I watched a different one for each of the five five-minute screens I did, with the last two being four minutes in length, meaning they only began to loop once. The third and fourth AVIs included text; the former as a short story a la Star Wars intro, the latter as credits. I tired quickly during the first couple of screens. But somewhere in the middle of the third or fourth one, my brain opened up. It was like someone had taken a can opener and let the light in. I continued to feel tired, yet I was alert and brighter. At the end, my trainer looked at the scores while I gazed around the suddenly-to-me-brighter room in wonder. She noted that she’d never seen anyone in the second session steadily increase their scores with each screen. People get  tired, performance drops, scores go down. But not with me. Heh.

When the AVI disappeared during my training screens, it was because the neuronal networks involved in executive function, short-term memory, failure to initiate, and/or word find went down. The word find was particularly noticeable whenever I tried to read the credits in screen 4. The AVI during screen 3 also disappeared like a shot every time it looped to the text and I tried to read it. It had to loop many, many times before I was able to keep it full screen long enough for me to read a sentence here then another sentence in the next loop, and so on.

I asked her about my vision change. I know that brain training will make your vision clearer, things will be sharper, but it was also brighter. It was like someone had turned up the lights. She noted that with LORETA, physical, not just in-the-brain, changes can occur with vision. Mind. Boggled. I was also seeing much more. My field of vision had widened, and I hadn’t realized how narrow it had been. I think this big picture awareness is translating into when I read too.

But in close-up work, it’s like my lens forgot where my focal point is. It’s like it’s saying no, that text is too close, move it farther away, no that’s too far, closer, no, that’s no good either, a little further — would you make up your mind! I felt like screaming. Over 48 hours later, and it began to settle down. The vision and perceptual changes have reverted somewhat to “normal” now. And my sleep sucked after the neurofeedback. It was like skimming on the crests of dreams.

I was hoping to experience normal reading again, like I had the Saturday after the first LORETA session. But nope. This time, I read faster than I could keep up, and I got a concentration head-ache, which I haven’t had in a long time. I did however feel great eagerness to read when I awoke and did start as soon as I could. So I think that was a spurt of initiation — my Go button turned itself on. I also felt quite engaged while watching the first TED video in the Neuroscience iTunes U course. My mind may have wandered once or twice briefly. In eighteen minutes, that’s pretty good.

So week one of the new regimen done. It will continue like this for a little while.

Brain Health

Sleep Study in the Raw: The Results

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I got my results. They weren’t anything unexpected — for the most part. This was my fifth (I think … I’ve lost count) overnight sleep study, and the results of each have been pretty much the same. And the solution has been as well. I did this sleep study in the raw, that is, without using my audiovisual entrainment device to help me fall asleep so that they could measure my sleep in its natural state.

The good news is that I don’t have sleep apnea or any respiratory problems during sleep apparently. The so-so news is that this sleep study caught something others didn’t, something I knew I had — restless legs. The irony: they are not such a problem for me as they used to be, in fact, it’s a problem I rarely think about. I can’t believe it’s finally being noticed when I’m no longer bothered by it!

Now for the report.

They diagnose mild PLMS. I had to look that up. It stands for Periodic Limb Movement Disorder. It’s when one’s limbs move involuntarily during sleep. Apparently Restless Leg Syndrome (RLS), which is what I thought I had, includes limb movements when awake. Well, that’s what used to happen with me, way back when. RLS also includes “a voluntary response to an uncomfortable feeling in the legs” — something I used to do every night, it seemed like. But though I may have that uncomfortable feeling when I’m rather more tired than usual, and at any time during the day, I no longer have the voluntary response or the urge to move or jerk my legs. In other words, I’m better. And now the sleep study reveals it. The doctor who gave me my results offered me meds, specifically clonazepam. They’d titrate me up to when morning grogginess kicked in. Oh goody, like I’m not weary enough when I awaken. No thank you.

The other sleep problems included increased sleep onset latency (I took longer than normal to fall asleep); 5.9 hours of sleep (almost 6 hours, not bad); 37 minutes of being awake after initially falling asleep; decreased sleep efficiency, though if we don’t include how long it took me to fall asleep, sleep efficiency was normal; increased wakefulness; increased alpha-wave EEG or alpha wave intrusions; increased stage 1 sleep; decreased stage 2 sleep; increased stage 3 sleep; and increased stage 4 sleep with increased total slow wave sleep in total sleep time; decreased REM sleep; 143 arousals. of which 116 spontaneous, 17 leg movement, 10 RERAs (hey, I thought the report said no respiratory events — is it cause this Respiratory Effort Related Arousal is an EEG thing with barely perceptible respiratory changes pre-arousal that it’s not considered an actual event? Still my oxygen saturation was 100% in the 90-100% range); 17 leg movement arousals with 2 short arousals from slow wave sleep but without abnormal behaviour noted. In other words, I didn’t sleep talk or walk. And I don’t snore! But otherwise I’m pretty screwed, eh? Especially as I was — again — given no firm solution after hearing that litany of goodness.

In any case, although the increased alpha wave EEG during sleep is something I’ve had for years, long before my brain injury, the increased slow wave sleep and decreased REM I did not. I spent years after my brain injury not dreaming at all. I couldn’t tell if I was just forgetting all my dreams, something totally new to me, or truly not dreaming. However, in the last couple of years or so, the dreaming returned. And I had thought it was normal again … but then it had been so long since I had had a rich dream life, what would I know what is normal?

I could not find much information on why I am exhibiting these changes and when I was told my test results, the doc didn’t say much about the why. But perhaps that’s because this is just another area medicine knows extremely little about. One 2012 study noted this deficiency in research and noted that:

Objective sleep studies show reduced sleep efficiency, increased sleep onset latency, and increased time awake after sleep onset. Depression and pain exacerbate but cannot entirely account for these problems. There is increased slow-wave sleep. Individuals with TBI show lower levels of evening melatonin production, associated with less rapid-eye movement sleep.

I do not know what my melatonin production is, but to test it would cost me $600, so that ain’t happening. Anyway my hypothalamus fix pretty much allows me to fall asleep at a decent time and quickly.

So what’s the upshot of all this? I was sent back to my referring doctor with the instructions to try Lyrica (a pregabalin, a GABA analogue). It may help with my sleep. It may not. It may also calm those restless legs too. One would think you go to a specialist, you get a definitive answer, a solution that works. When it comes to the brain, not friggin likely. But I have other plans. More on that in a later post.

Brain Power

What is Good Standard of Health Care?

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Standard of care. It’s a phrase that gets tossed around a lot. Let me tell you a story about what it should not be, especially for a person in a drug research trial.

Before I begin, a note on my background. I grew up as the daughter of a clinician-researcher who is to this day, in his so-called retirement, in demand around the world, whose patients think he walks on water, and who has never in his entire academic career been denied a research grant (see my page on him, a bit outdated because I can’t keep up). During my university days, I used to talk to him a lot about research work, medical care, medical education. It never surprised me when he’d come home excited about some new research finding – and not just in his field or from research done by himself. His curiosity just about matched my own. I also wrote a book on Judy Taylor, the patient who launched his career into the stratosphere and who demanded all his skills as a researcher and physician to save her life and to give her good quality of life. So I know what good standard of care is.

I have a brain injury. Since the brain controls the entire body, mind, and emotions and since we know little about brain operations, caring for me is complex. But good standard of care even for someone like me is not.

I met a new specialist a little over six weeks ago. Seems like forever ago. He enrolled me immediately into a research study as he believed that the research drug would decrease my pain and so improve my sleep. I have pain from many sources, including fibromyalgia and the lingering effects of the seat belt injuries I sustained (again) in a three-impact car crash back in 2000 (the same crash that gave me my brain injury). The hypothesis made sense to me, and having conducted or been involved in a few research studies as the researcher, I was game to be the guinea pig for once. He sent me to his research team as they would instruct me. But he was in charge and would keep in touch with my progress through them. And I was given another appointment to see him end of May to follow up on all the tests and study results.

The first week was baseline week. Tedious but necessary. The second began the drug trial itself. I saw the research team each week as the dosage increased up to the highest dose. I have no idea what the highest dose is, or rather was. Every day I had to phone in a 24-hour diary on my pain, fatigue, and sleep. As I understand it now, the crucial parameter was my pain level over the previous 24 hours. Every evening when I took the drug, I had to fill in a paper diary, noting the time, which bottle(s), and when in relation to supper, snack, or breakfast. I was a good girl. I took my drug as instructed. Each weekly meeting was slightly different, but they always covered off two things: suicide ideation and/or actions and side effects. Apparently the suicide thing is de riguer for any drug, no matter how unlikely it was to cause suicide. I worried about it in the beginning, but as I got used to the process and the drug, I forgot about it.

Once I was stabilized on the highest dose, I went for three weeks without seeing them while still keeping all the diaries and taking the drug daily and wearing my Actiwatch, butt ugly thing that it was.

I wasn’t really feeling any different as the weeks went by. And then all of a sudden, things changed. But not the things the researchers were looking for. Problem number one for me.

They wanted to know about pain and sleep. But it wasn’t my pain and sleep that had changed dramatically, so dramatically that even my parents noticed. So dramatically that when I brought it up with my parents to discuss what I should do as today approached, they said categorically that I should not come off it. As I mentioned above, my father has conducted many research studies, many that involved his own patients. He knows the drill. He indicated that a patient knows when a drug is having an effect because it’s obvious to the patient. He’s seen and heard about it lots of times. Was it obvious to me? Yes. He indicated that his patients have been able to speak to him about what to do when they don’t want to come off it. And he explained the kinds of options available to someone like me when a drug is not commercially available.

So I called the specialist’s office last week to talk to him about the changes and about my options. Burgeoning problem number two for me.

The specialist wasn’t in. The specialist was busy. His assistant would let him know I’d called, and she suggested I try again on his patient day or I could fax a note. I’d learnt from previous experiences with others that faxing notes gets me nowhere. Physician reads it (maybe), files it, doesn’t talk to me. So I called again on his patient day. Gave my cell number. Ensured I was available to take his call anytime that day. No call. Friday I was at the hospital. I tried doing the really annoying ambush thing (but to be absolutely honest, another specialist had suggested it since time was ticking down) and asked him politely for two minutes to discuss what to do as I could not come off this drug Tuesday. The changes were too dramatic, too important to my quality of life. I didn’t get that far. He looked peeved and interrupted me. Well, okay maybe he was having a bad day and obviously stopping him in front of his office would not be the happiest moment of his life. But he hadn’t called me back.

Let’s talk about that for a moment. Physicians today do not call patients back because OHIP doesn’t pay them to. Medicare used to pay physicians and surgeons to telephone patients because the bean counters understood phone calls were part of patient care. But no longer. I had heard that if a patient initiates a call that OHIP will pay but don’t quote me on that. So if a physician calls a patient today they’re doing it pro bono, and they’re doing it because patient care is that important to them. To compare: lawyers don’t even talk to clients for five minutes sans billing them, and lawyers can have as big an effect, if sometimes not bigger, on a person’s life as a doctor can. However, I’m not just a patient, I’m a guinea pig. In a drug trial. For a drug that’s not commercially available. It doesn’t matter whether or not it’s derived from one that’s out in the marketplace, they still don’t know its full effect. Thus when a patient-guinea pig calls saying that there have been dramatic changes that have affected internal body functioning and cognition, it’s important from both a clinical and research point of view – and most of all for good patient care – to take the effing call.

He agreed to speak with me after his meeting. I stared at posters in the waiting room, made queries about an advertised non-drug research study (I need money), and was finally called in to “discuss” it with him. He’d spoken to the chief researcher about my changes – who, by the way, did not know about them all to say the least, but neither the researcher or the specialist knew that – and to his assistant – who also knew only some of the details – but he didn’t speak to me. And so he knew only part of the story because I was waiting to speak to him to tell him the discreet details. I didn’t feel like bandying them all over the place. I’d had enough of that during my insurance fight. The two people he spoke to were also unaware of my financial situation, and not being my physicians they didn’t understand how much this drug was changing my life. Problem number three; blew up in my face today.

After speaking to them about my situation and only them, he told me that I would be enrolled in the second half of the trial, that if I was enrolled in the placebo portion and after a couple of weeks didn’t feel too good, they’d discuss what to do about drug options then. It’s the best way. Bye. What about the changes? Have you seen them before? Bonus. Bye.

To recap: zero discussion with me, the primary source, about my pain levels, dramatic changes, staying on the drug, and taking and paying for its approximation.

Today, the computer told the researchers I was ineligible for the second half of the study. Big surprise. Well, it seemed to be for them. Not to me. I knew what my pain levels were. I knew that once I was no longer reminded of being in pain every verse end, I’d go back to my ignore-it-and-it-will-not-interfere-with-my-life attitude, which would not actually drop the pain levels in my diary entries enough for it to show that the drug had affected them, if you follow that. So I don’t know why they were so sure last week I’d remain in the trial. They could see my diary entries in real time, but I guess they’re not good ballparkers whereas numbers being my friend and having saved my ass many a time since my brain injury, I’d sensed it.

All of a sudden, they had to figure out how to meet my needs. They had to figure out how to get a prescription for a commercially available approximation of what I was one from the specialist. They said my pharmacist would explain to me how to take it. I said point blank how about discussing it with me now. I mean seriously, since when does a physician not discuss a prescription with their patient? They couldn’t, only the specialist could, and after awhile it became apparent, he would not be available for some time, like, hours and hours even though last week I’d received the impression he would be reachable. Well, what does it cost? Oh, no worries, insurance will cover it. I pointed out I didn’t have private insurance. Did the Ontario Drug Benefit Program or Trillium cover it?  That threw them for a loop. I’d have to ask my pharmacist, they said. What do I do if I can’t afford it? Well, I was on the tapering dose since they couldn’t get me a prescription right away anyway, that would hold me for awhile. (Like, for barely a week. Maybe.)

So I trooped off to my pharmacy. The drug is not covered by any Ontario drug program for anyone at any dosage. It should be, maybe it will be, but it isn’t. What would it cost me? Well, that depends on the dosage. A bit of a problem there. The research team hadn’t told me the dosages of the research drug; had refused to discuss the prescription with me; the specialist had not yet written it; and I had no clue. So we played with some numbers. I thought about what I could give up after I heard the dollar figures. The pharmacist suggested asking for compassionate care or use whereby the pharmaceutical company would provide me the drug gratis. She explained that the specialist has to apply and how it would work in practical terms. Problem number four.

Last week I was upset, worried, stressed. This week I’m mad. This is how the problems that arose for me translate to bad standard of care:

Problem number one:

Bad or what-has-become-acceptable standard of care is that when a patient says they are experiencing changes different than what is expected – ignore them.

Good standard of care means that when a patient indicates that a drug is affecting them differently, you discuss it immediately, not at their next appointment time. You discuss it so that the patient first and foremost feels safe because a drug can be a dangerous thing and the patient needs to know the clinician researcher has their back. You discuss it also so that you can learn from it, think about how that patient differs from the other guinea pigs, and most importantly, how best to help the patient so as to maintain and maybe even improve on the good changes. The patient’s health is top priority.

Problem number two:

Bad or what-has-become-acceptable standard of care is that when a patient-guinea pig calls, you don’t return their call because it is protocol to speak to patients only during scheduled appointment times. Then be impatient with them when they do whatever they can to get your attention because they’re that desperate.

Good standard of care means that when a patient-guinea pig calls, you return their call as soon as possible because even good changes require immediate attention to ensure the patient is not hiding side effects or is not at risk of unforeseen consequences. And if they button-hole you because you didn’t call back after their repeated calls, realise it must be really important to their life and health and well-being for them to make that extra effort. You listen; you discuss; you reassure them.

Problem number three:

Bad or what-has-become-acceptable standard of care is that when a patient-guinea pig tells you that they don’t want to come off a research drug, you don’t discuss the financial details, figuring it’s their problem not yours or you’ll deal with it when you must.

Good standard of care means that when a patient-guinea pig tells you that they don’t want to come off a research drug, you discuss what is available and ask if they have insurance. You know all about how lack of money stops treatment; you’re aware if the drug is covered or not by the Ontario Drug Benefit Program or Trillium so that you don’t send them haring back and forth between the pharmacy and hospital just to figure out how to pay for it. Even better you’re willing to discuss these things over the phone. You appreciate it when a patient has given you notice so that both you and the patient have time to find out how the patient will pay and if they need you to fill out an application for compassionate care.

Problem number four:

Bad or what-has-become-acceptable standard of care is that you’ll be caught unawares by the patient’s need for financial help and refuse to discuss it outside of scheduled appointment times, long after the research drug has left their system and they have gone back to their sucky pre-drug quality of life. Stress them too so badly that no amount of Valium will relax them.

Good standard of care is that you’ll have discussed it when the patient called in advance of the study possibly ending and be ready to resolve this problem expeditiously, or if not, to be available when the patient needs to discuss what comes next, how it works from your point of view, how long it will take. In short, make the patient feel safe, assure them they have a partner in their care and are not alone, and that things will work out. Most important: shorten their time off the drug as much as possible.

To sum up: good standard of care is predicated on a physician being able to think laterally, vertically, diagonally, sees medicine as an art not strictly a science, sees the patient’s health as the highest priority, and appreciates a patient involved in their own care. One of these days I’ll receive good standard of care. But as of now I’m on the tapering dose.

Update 19 April 2012: A go-between asked the secretary to have the physician write a note to the drug company asking for a compassionate supply. I was told to followup this morning. Bell helped. They invented call blocking. It’s the ticket to having one’s phone call answered. Did the physician not give the prescription? Nooo. Long hold. Click. The physician came on the line. Whoa. That threw me. Then I heard:  “you think you can’t afford the medication.” Excuse me? Think? Really? I had no idea I knew so much less than he about my finances. Still, he would graciously write a letter to the drug company though they, of course, would not supply me. And he would immediately telephone my pharmacy with a prescription. As in right now. Maintenant! But — I must not call his secretary more than once a month. He was insistent on that. I thought: why would I, I finally got him to listen and act. I said: he had assured me support. And then my Parsi side kicked in, and I made nice murmurings. I wanted that prescription. Given what he’d said about the multinational drug company, implying they would be a pill, I assume the letter will be perfunctory. He left me and the pharmacist to confer on when to switch from the experimental drug’s tapering dose to the prescribed established drug, how the established drug stacked up against the experimental one pharmacologically speaking (flip open books, get out the old calculator), what side effects to watch out for, how to monitor my symptoms and titrate the dose up. Nothing like a patient and a pharmacist discussing how to switch from an unknown drug to a known one to make a pharmacist’s day interesting, I bet.

Brain Health

The Sleep Study

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It’s me and the men. Fat men. Snoring men. Young men. And extremely picky men. That latter is a new one to me in my five (six?) sleep studies. Seriously, does this guy think a hospital is going to purchase his preferred kind of sheets just for him? It’s not like in the pre-bed bug days when you could bring your own special pillow, Teddy bear, towels, even sheets. Now the sleep lab provides everything, and the only thing they want you to bring are your pyjamas and hygiene products. They don’t even want you to put moisturizer on your face. Or gel in your hair. Or mousse. Or hair spray… These last are not because of the bugs but the electrodes.

Then there are the pyjamas. Maybe what’s seen in the sleep lab should stay in the lab, after all I always take my most warm, utilitarian pyjamas in my closet to the lab. Some men, uh, don’t. And most don’t wear anything over theirs, no matter how skimpy. Personally, I like a dressing gown, an extra layer of modesty. Unfortunately, it comes off as soon as one sits down in the control room for the pasting up. More on that later. But first: what am I talking about?!

The sleep study.

The sleep study is inevitable once a sleep specialist comes into your health care picture, whether you’re just an insomniac or having sleep problems as a result of a brain injury. In Ontario, OHIP will pay for a sleep study once every two years. The sleep study records your brain waves (EEG), your heartbeat and heart rate (ECG), your leg movements, your body positions, your breathing during your entire night-time (and sometimes daytime) sleep. It also includes a video and sound recording of you. It gives the specialist an objective picture of exactly how you sleep, notwithstanding the huge distractions in the process. No one ever prepares you for the experience, so I hope this will shed some light.

After checking in at the lab, I discuss my bedtime with the sleep tech. I tell him the time I usually go to bed and usually awaken. Oh no, not enough time to get a proper study, he replies. Not enough time to get proper rest either, I grumble to myself. He talks about using alarms at home inappropriately; I reply I don’t use alarms, and still I awake too early. He doesn’t get it. Someone should tell my brain, see how illogical you are waking me up so early! He tells me I’ll be second to be prepped for bed, and that’ll make lights out for me at 10:30 pm, about an hour before my usual time. The person before me will be lights out at 9:30 pm, or so that’s the theory. This is picky man, and he yaks on the phone instead, pushing mine, and the ones after me, bedtimes back. But I digress. The only other difference to my routine are the electrodes nestled in my hair, glued to my scalp and forehead. I’ll be allowed to wake up naturally. This is new. The thing I never like about these studies is they shock you awake and kick you out while you’re still half-drugged from sleep and the city is just wakening. But I’m ready this time. I’ve prepped my mind. But turns out: I needn’t have. So will I wake up at 5:00 to 6:00 am like I have been for the past week or will this be the day my brain finally decides it wants to sleep to a normal hour?

I ask the tech about snorers. My last study had the worst snorer. He was so loud, I heard him clearly through his door, the intervening control area, their door, the little hallway, and my door. They shut all the doors they could. No good. Guy was married too, I believe. If I’d been his wife I would’ve bought a separate house on the other side of town to sleep in. Luckily, this time it’s all insomniacs like me. They may snore but probably not loudly. The tech offers earplugs. I decline. I have faith in a snore-free night.

After filling in questionnaires and spending seconds checking out one’s designated bedroom, the next step is changing into one’s pyjamas. I must say I don’t like changing in a room with a camera staring down at me even though I know the camera is off (well, it’s supposed to be). I used to be able to stand behind it, but now they have those 360 ones. No hiding. Bathroom is safe though. Oh wait…inspect camera closely…it’s still only unidirectional! It’s aimed right at the bed. And there’s that nice blind spot underneath and to the side of it. I change in the blind spot with the door shut. You’d think shutting the door would be the obvious move. But there’s usually an exhibitionist in the bunch. Picky man is tonight’s and so oblivious to my presence he changes with the door wide open. I avert my gaze. He steps out into full view. Good grief, I really need shades for those pyjamas. Anywhoo…I’m second in line to be gooped up. That’s always my favourite time. Sit still as electrodes are glued on, my hair is totally ruined, and gossip with the lab tech — who’s almost always male; females if there are any are usually walking about doing stuff; but tonight there’s only one tech in this lab.

The sophisticated sleep lab I walked into when I first arrived on the Sleep Clinic floor has women behind the controls and ushering the guests to their rooms, handing them their questionnaires to fill in immediately. The control room looks like something out of a television show with its modern monitors and dark-tinted glass windows. How come I can’t be there? That’s where I was first going to go until my new sleep specialist amended the sleep study requisition form after he enrolled me in the research sleep study. So I get to be in the side wing with its pokey control room and in the bedroom with a picture of a foot in it and pasted-up warnings about bed bugs. Who thought that would be restful, the foot splashing on a pond with reaching tree branches? Or the warning?

My first sleep study experience was quite different. A beeping O2 sat monitor disturbed my sleep in my first study until the tech removed it. That was in the old sleep lab at the Western in the hospital proper. It was sound proofed like a sound studio. You walked in, and it sucked the sound out of your ears. It was grey too and separated completely from the rest of the floor. The EEG readings were recorded with flailing needles on paper unfurling across a wall. In contrast, the last two sleep labs had windows. The street sounds through their windows and, at one, streetcars clanging by, were rather disturbing. But nothing competes with the snorer. There’s always one. But back to the labs. These labs, main and side, are on their own floor tucked in a rabbit warren of rooms and halls. No windows to let in street sounds. Thank you Lord. Computers record the EEG and heart readings. The rooms are hushed, but sound carries in the air like normal, which makes it easy to eavesdrop on the convo between the tech and picky man while he’s being strapped and gooped up. Hey, a gal’s gotta do something when she didn’t think to bring anything to read because in the last few studies there was no time to read.

It’s my goop-up, I mean, paste-up time. First the tech measures my height and weight and neck circumference. Then blood pressure. Luckily one doesn’t need to take one’s sleeve off (which would mean removing the pyjama top; normally the BP cuff goes round bare skin).  And then the fun begins.

The tech asks me to hold out my arms; he wraps and clicks into place a soft black strap round my chest and tightens it. This one is more comfortable and sturdy than ones I’ve had in the past. He then wraps a matching strap round my waist. They will measure my chest and abdominal movements. Now the worst part: he places on my face a double form of that oxygen tubing lung patients wear, hooks it round my ears, and tightens it under my chin. One breathing monitor measures pressure as I breathe in and out; its prongs reach into my nose (oh, yuck and ticklish). The other is a nose-wide bent red rectangle, which measures temperature and temperature changes; it sits under my nose. He tapes the tubing to my cheeks so it won’t slide away from underneath the nose during sleep. But the prongs still move every time I flip over. Talk about a sleep disturbance. The electrodes are innocuous compared to that!

The tech has a cart with everything ready to paste on. He asks me to sit down next to it. I see about nineteen squares of gauze with a blob of paste centred on each lying ready for me. He places one on the middle of my forehead, pressing it into place with the palm of his gloved hand. He presses one each on my temples beside my eyes, one on each side of my jaw, midway between the jaw angle and chin, several on my head, parting my hair to get contact with my scalp, one on each side of my neck at the back base, and two more below and to the side on my deltoids (my upper back). These last four are how they measure heart rate and beat in women. No ECG electrodes on the chest for women. Good thing as almost all the techs who’ve pasted me up are men, and modesty is already in short supply when sitting there in one’s pyjamas.

He lifts up a tangle of very thin, coloured wires. At one end of each wire are yellowish plugs that look like laces that have been fused closed with a lighter; at the other are tiny metal circles: the electrodes. He attaches all but four of the electrodes to the paste on the gauze squares on my head and neck. He hands me the last four wires, two at a time, asking me to thread two down my right and two down my left pyjama legs. He plugs all the fused-ends of the wires into a purplish rectangle box, except for the leg wires, clips a strap to the box, slips the strap round my neck so the box dangles down my chest, and hooks the leg wires and tubing though my chest strap. Time for bathroom and bed.

Lie down on your back on the bed with its two soft pillows (two! Luxury! Last time I got one small pillow), not-tucked in sheets, and light coverlet; have a man loom over you as he takes the box off you, plugs it and the tubing into the equipment next to the bed, and places it on the bed near the edge; sacrifice your left forefinger to an O2 sat monitor that is clipped and tightly taped on; thank the techie stars that the O2 sat monitor is much smaller than the behemoth used twenty years ago; wait patiently as the leg electrodes are pasted and taped to one’s calves then plugged into the box; wait for the sleep tech to return to the control room then obey the spoken commands coming through the intercom for the calibration session; watch as the tech searches for the problematic connections, tapes them, and pulls the stomach strap down so that it is over the belly properly; finish calibration; watch as the tech turns off the light; get blinded by the red spotlight of the O2 sat monitor as move hand into field of view; lie on side, feel nasal prongs move in nose, get blinded again by that red spotlight, tuck offending hand under pillow, be very aware one is being watched and listened to, and wonder:

How the hell is one supposed to sleep?

For a very dark room (no windows), there was an awful lot of light once my eyes had adjusted to the blackness. There was the thin space between door and jamb through which light seeped, and there were two inexplicable rectangles of faint light on the ceiling above my head. There was also that damn red spotlight that shot into my eyes like an alien probe every time I shifted position and moved my left hand in the process, always accompanied by the prongs moving against the inside sides of my nose.

I didn’t sleep.

Well, I’m sure I did because I awoke with a final snap at about 6:10 am, after several awakenings, to hear the gently happy snoring coming through the wall from the next bedroom and because the tech commented on how long it took me to fall asleep and asked me if it always took me that long.

And that’s when I realized how effective my AVE unit is for getting me to go to sleep and stay asleep. Even though the nasal monitors interfered greatly, the lack of sleep and time to fall asleep wasn’t that different from how it used to be before I began using my home AVE unit. It was my sleep in the raw sans aids. God, how did I survive without my unit all those years?!

Anyway, he asked me to stay in bed on my back. The others in previous sleep studies removed all the stuff in the control area or room, but he did it while I remained in bed. After unplugging the box, thankfully the first thing he ripped off was the nasal monitors. He threw a 3-pointer side- and backwards into the garbage bin. Good to know for hygiene reasons the nasal monitors and tubings are disposable. My chest strap had slipped down but everything else had remained in place. They were all soon off. Last time, the tech used alcohol to remove some of the paste in my hair. Most don’t. This tech didn’t. He then handed me another clipboard of questionnaires. I ticked through them quickly, eager to get out of there.

The penultimate step in the sleep study process is the shower.

They provide a shower. But I prefer to use my own. It means looking rather like Frankenstein out in public. A hat that comes down to the forehead and is washable is a must. The provided washcloth and their tepid water can remove the paste on the forehead and any tape remnants but not from the hair.

At home, ensure your hot water tank is full and ready. You’ll probably drain it. You’ll need hot water to melt the paste, otherwise it’ll take much longer to remove. If you’re bald or have a buzz cut, this process will take five minutes or less. But for everyone else… I’ve tried many methods. The alcohol certainly helped but didn’t do even half the job. I first massage in a large blob of shampoo in. Don’t bother. Instead, take a big bar of soap, and while standing underneath the hot, running water, push the bar against the paste, like one pushes air bubbles out of wall paper or out of an iPad screen protector. After one blob of paste comes out, move to the next. Or, if you’re like me and get bored with one blob, move on then come back. The paste at the back will be harder to remove because it’ll be buried in more hair, especially if you have long hair. Once you think all the paste is out (it won’t be), massage in a large amount of shampoo then comb it through. Rinse with hot water. Repeat with conditioner. Comb that through too, this time with the fine teeth. Rinse with hot water. Using this method, for the first time, I didn’t discover bits of paste in my hair once it had dried, and I didn’t need a second shampoo. Now commence with your usual shower routine and soothe your scalp with cool water.

The only other addition to the process is cleaning every fabric thing you took to the sleep lab. Given that bed bugs are rising up again and you don’t know who you’re sharing the lab with, it’s only prudent. Toss them all in the washing machine, including your clothes, as soon as you walk in the door, before showering.

Last step: flake out.

Brain Health

The New Sleep Specialist

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A new year, another new doctor. The first thing my new specialist said as soon as I sat down was: I know what your problem is. Pause. You have physician fatigue.

No kidding.

Astute.

I don’t recall another doctor noticing that on their own or, if have, acknowledging it openly to me. I immediately paid more attention to this sleep specialist, this new one I had been referred to because my new neurodoc had found it unacceptable that my last sleep specialist had stated that there was nothing he could do for me then ushered me out the door sans support or options.

But what could a new sleep specialist do? I had not developed any new problems. My fibromyalgia was as it had been since being reawakened at the time of my closed head injury; my brain injury had healed some in the years since 2003 and had not created new sleep issues. When the new sleep specialist asked me what he could do, I replied that his mammoth sleep questionnaire gave me hope that if there’s that much progress in discerning the issue, then maybe in treatments too.

He told me a little story, the first of a few, to illustrate he understood my physician fatigue. He told me another little story to illustrate that he, regardless of outcome, would support me. He would not usher me out the door. He repeated that twice, thrice. Not even if there is no solution for me. As proof: he runs a weekly support group for people with chronic sleep problems and has done so for eighteen years.

He doesn’t give up on his patients.

The neurodoc told me the same thing a few weeks after I began to see him. They both needed me to hear that because they must’ve seen how I expect physicians to dump me, to discharge me, to not pursue options and work with me on solving my myriad health problems stemming from my brain injury (and my fibromyalgia too apparently) – for that’s pretty much what’s happened to me. The best ones take me so far and then discharge me and leave me to cope and solve on my own. The worst… Well, it’s why I searched and searched for treatments and found the ADD Centre; it’s why I created my hypothalamus fix. It’s also why I ended up in the ER back in 2007. A person who has health problems can only support themselves alone for so long before the body screams bloody murder, revolts, and flings you into the ER or psych ward.

The new sleep specialist asked me to stand up, stood up himself, edged round his table and stacks of papers and journals, bent my right arm, and pressed on the fibromyalgia tender point. I yelped. I jumped. But I somehow didn’t leave his grasp. I guess he’s used to that reaction. It had been so long since I’d had my fibromyalgia tender points tested, I didn’t clue in to what he was doing till too late. I steeled myself for the next point presses. He tested my other elbow, then two chest points, got the same response every time, stopped as he was only confirming what had been tested a bazillion times, and stated bluntly that though I had claimed to his Fellow* I didn’t have much pain, I had exquisite pain.

Oh.

At that point, the ordinary appointment morphed into a wild ride. Before I knew it, he had called the researcher in charge of (or helping to run) a multi-centre Canada-US research study he’s conducting on a new formulation of a drug whose name I’d heard of but knew nothing about; determined they had just enough time to slot me in before the study closed; and sent me to her to answer questions, have blood drawn, have an ECG done, my BP taken, answer more questions, have a Philips Actiwatch Spectrum strapped to my right wrist, given phone-in diary instructions, and sent out the door to have a rather late lunch. Very late lunch. Almost like supper lunch.

I’m now someone else’s guinea pig. How unusual…and neat (says the person who designed and/or conducted her fair share of psychological and marketing studies in university and work). In the first week they’re measuring my baseline sleep and activity. Then I will receive the drug. Although I went along for the ride with hardly a murmur – mostly because of his first statement that told me this man knows his stuff and because of his logic (more in another post on that) – I did vet the drug as is my wont. Later, I also discussed it with my father. I have a healthy skepticism of medications; I know none is without risk. The question for me is: is the risk worth it? In this case, I’m trepidatious: Will it work? Worse, will it not work? Even worse, will I have to be on it for life and will my finances be able to handle it? Still, I think it’s worth the risk.

Meanwhile, I’ve also been booked for the usual night-time sleep study. Can’t wait. Ugh. Yet despite the unpleasantness of blood tests and sleep tests, for the first time in eons, I have hope that maybe, just maybe, my sleep problems will get better. And whatever happens, I am no longer alone in dealing with my insomnia.

 

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*When you see a specialist in a teaching hospital, you usually see the medical resident first. But with an academic physician, you may see their Fellow instead of a resident. A Fellow is someone who studies under or works with an eminent physician as part of their academic training and research studies. My father has Fellows all over the globe, he’s taught so many. And because I’ve met several of them while they were here, I’m totally comfortable with them, probably moreso than with residents.