Brain symptoms and sleep.

I wanted to clarify something from my last post. I got a few messages which made me realise that when I said, “This year, my worst symptoms by far are from the shoulders up”, people thought I meant the over-analytical, perfectionist tendencies I have, which cause me to ruminate on details and not be content with anything. It makes sense, since that is what I was discussing for the majority of the post, but that’s not what I meant. In no way do I consider those tendencies — my personality — to be symptoms. It might make things a little easier if I weren’t always craving change and could accept life as it is, but I love that part of me that never feels settled, it’s the part that longs to keep learning, better myself, change the world. With a different body, who knows what I’d be allowed to accomplish.

When I wrote about my worst symptom, I was referring to my Buzzy Brain. I’ve tried to describe it on here before and I’ve discussed it with doctors, but I’ve still never talked to anyone who seems to experience the exact same thing. I’ve started to wonder if it isn’t some sort of optical migraine or silent seizure or atypical narcolepsy. It comes on very quickly and it’s not brain fog, not even close. Moments of mental acuity, accurate recall and speedy connections — the confidence that I can master any information like I had in the past — are quite rare; my mind is usually pretty fuzzy, foggy. The Buzzy Brain is entirely different. It doesn’t make thinking difficult, it literally stops my functioning, both physical and mental. It starts with a physiological buzzing feeling in my brain, as though, if you could look under a microscope at the cells and synapses, you would be able to see the disability. I get testy, my forehead can feel numb, my eyes droop, I slur, my tinnitus roars, everything is impossible: walking, answering a question, watching TV… and there is no pushing through it. I can’t even relax in a dark room, listening to an audiobook. It is my great limiter because, even on days when my body and muscles feel capable of activity, if I have the Buzzy Brain, nothing can happen. The odd thing is, it is reset by even a very short nap. I can meditate in silent solitude, lying still for hours, and nothing will change, but, if I fall asleep for even 10 minutes, I get some relief. Maybe not total relief and maybe only for an hour, but enough to function. It is exactly like turning off a phone and plugging it in briefly just to get a little more battery life.

Of course this begs the question: is it 100% sleep-related? Could I eliminate this symptom if I had consistently good sleep quality over the course of months, years? I’ve had 5 sleep studies with no real answers. The first one in 2012 (long before I had my Buzzy Brain symptoms) showed my brain was waking up 49 times an hour. They diagnosed me with sleep apnea and gave me a CPAP.

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After the most recent one last June, my sleep doctor told me I didn’t have to wear the CPAP or my oral appliance anymore because obstructive sleep apnea wasn’t my problem. I was overjoyed because the CPAP keeps me awake all night and the oral appliance causes terrible jaw pain and TMJ issues. But, I know I feel better when I can manage to sleep while wearing one of them, so there’s something there. It was explained to me that as my tongue relaxes and my airway is just slightly blocked, my brain wakes up (not enough blockage for my oxygen to drop and not enough wakeage to be fully conscious) and that’s what it feels like, subjectively: that I’ve never really slept properly. This is part of nervous system dysfunction — the brain always being on high alert, never “allowing” deep sleep. So, although I may not need the CPAP for air flow, I feel better with it keeping my airway open so my brain isn’t triggered. But I can’t wear it, so what to do…?

When I saw my ND a few weeks ago, she said she wanted me getting 10-12 hours of sleep in every 24 hour period. I was incredulous. It’s impossible, that’s literally twice what I get now. She looked at me hard: “Then you’re not going to get better.” I told her I was wiped out after my hyperbaric oxygen chamber appointments and she said she wanted me to sleep 3-4 hours after each session. On top of 8-10 hours at night. This is truly ludicrous. I struggle terribly to get 6 hours sleep and I very rarely nap during the day. Plus, I hate bed. Hate it. I can’t see it as a place of healing, it represents life passing me by and sickness. My doctor said: “Would you rather force bed now and not be sick later or stay as you are forever?”

I’ve tried a lot of sleep medications and supplements and they’ve all had intolerable side effects, made me feel worse than the lack of sleep does or done nothing at all. I’m still not falling asleep until after 3am most nights. I know what everyone says about better sleep quality before midnight, but some of the best hours of my day are between 10pm and 2am, so I’m resistant to change. But I could go to sleep earlier, if I wanted to — my problem is not getting to sleep, it’s staying asleep and this is a harder issue to medicate. I thrash around in pain and nightmares for 5 hours, fight against encroaching consciousness for another hour or two and then my mind takes off at light speed and there is no going back. I feel quite helpless to change this and my doctor’s words are haunting me a bit now. Good quality sleep — or even just more hours of poor sleep — could be the ticket to healing.

I’ve gone significantly backwards the past few months, so I’m trying to convince myself that this autumn and winter will not exacerbate the downturn, but will be the perfect opportunity for hibernation and repair. So far, it’s not working. I see nothing positive about losing my garden oasis and the healing sun. I do have three new sleep medications to try, but… I don’t hold out hope. If anyone has any leads on a good pillow that doesn’t cause neck pain or ways to prolong sleep or force naps, please let me know.

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Sleep Study

Last Friday, I had my third sleep study in as many years. This one was to see if my oral appliance was helping my sleep apnea. I’m a pro at these studies by now, but it’s still an awful night’s sleep, no matter what. Check in is at 9pm and they wake you up between 5:45am and 6am the next day. My sleep has been a lot better in recent months, but it’s also gotten later and later. I haven’t gone to sleep before 2am once this year. I haven’t tried to change this because I don’t want to mess with whatever is working about my sleep. For example, last night I slept from 2am to 10am. My sleep is still fraught with problems and awakenings, but actually having my eyes closed for 8 hours is miraculous.

So, I knew I was in for a rough night during the sleep study. This time around, I wore my pajamas to the clinic since I would just be getting straight into bed; I brought melatonin, since I knew I’d be trying to sleep earlier than usual; I brought an electric blanket since it’s always cold (stroke of genius, it turns out, because I have a very hard time sleeping with icy feet); I brought both of my pillows (one for my head, one to support my legs when I sleep on my side); I brought water and snacks (didn’t need the latter); and, most importantly, I brought ear plugs. During my last sleep study, I was woken by the crackling of the speakers, the water in the pipes, the hissing of the air conditioning, the closing of doors in other rooms… Ev.eRy.Thing woke me. I can say, without any shadow of doubt, that finding ear plugs that block all sound and are comfortable enough to sleep in (i.e: NOT the $100 custom-fit hard ones) was the best thing to ever happen in my health life. The key was, my husband had to teach me how to put them in properly. I didn’t realise there is an art to this. Silence is pure bliss, even if it’s filled with various pitches of shrieking tinnitus.

Another trick I had learned from experience was to shower (and not put on any lotion) right before coming to the sleep study, so the sticky pads would stay stuck through all my nocturnal thrashing. In the past, the tech had had to wake me to restick sensors that I’d ripped off. It was also a pleasant surprise that the huge brick that connected all the wires, which used to be strapped to my stomach, has been eliminated.

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Once I was all hooked up to the wires and monitors, I read for a bit and then tried to go to sleep at around midnight. I had to call the tech in twice: once to move the massive cord of tethered wires coming from my head and gathered together at the back of my neck like the brain plug-ins in The Matrix — that’s a design flaw when they want you to stay on your back — and another time because of the bright green speaker light reflecting off the ceiling and blaring through my shut eyelids. She got on a chair and threw a washcloth over the speaker light. Can’t believe no one else had ever complained about it.

My night was terrible. It felt like I was awake the whole time and I remember at one stage thinking I just needed to call the tech in and tell her I was going home because I obviously was never going to fall asleep for more than a few minutes at a time. Turns out, I was wrong about that. I did sleep, but spent an inordinate amount of time in stage 2 sleep, during which, my doctor said, you can be slightly aware of your surroundings. Was I ever. I also remembered snippets of about 5 dreams. It felt like I would doze for 10 minutes, have a dream, wake up and lie there thinking about it for an hour, before dozing off and having it happen again, over and over. Dr. M confirmed that I did wake up after every REM cycle, but said this wasn’t that uncommon. We surmised that my problem is, because I’m often having stressful dreams and nightmares, when I wake up it isn’t a slight surfacing and then back under, it is, instead, a fully awake, heart-pounding episode that I have to come down from. He said my “sleep architecture” was terrible (how I progress through sleep) and my brainwaves showed that I spent most of my time in flight or fight mode. I’m hoping this was exacerbated by being hard-wired into a foreign bed. I’ve done so much bloody work over the years trying to calm my nervous system and feel like I’ve made progress. The ear plugs are a good example — I spent years not even considering wearing them because then I wouldn’t be able to hear the intruder/dog whining/crackling of flames or any one of the other million crises that can strike in the night. I’m not on high alert anymore. Usually.

The biggest revelation to me that night was how much pain I am in when I’m sleeping. I thought I was just an extremely active sleeper but, just like my experience during the tilt table test when I was forced to lie on my back and stay in one position, all hell breaks loose in my limbs when I can’t move. Blood pooling, pins and needles, numbness, cramping, sore muscles and, worst of all, skeletal pain — deep aching in my joints and bones. I had to move to alleviate the pain and get my blood flowing, so, as much as I tried to stay on my back (where the apnea is a real problem), I wound up flipping from side to side, just like I do at home. I’d never equated the tilt table test to sleeping — while I was supine, there was no blood in my extremities at all and they went from numb to excruciating. I was almost in tears. I don’t know what to do about this particular problem, though. It’s not a painkiller issue. I think I need stronger muscles to help the bone and joint pain and, for the circulation issues… what? Would Florinef or Midodrine help with this? Can I just hire a gaggle of elves to rub my arms and legs all night long?

Anyway, there is some great news. I managed 3 short cycles of deep sleep during the night, which blows my mind when I didn’t think I’d slept at all. My oxygen saturation was 96-97% (that’s good). And… sound the trumpets… I had ZERO apneas or other breathing events. Picture me kissing my ResMed Narval oral appliance like Jimmy Stewart kissing the newel post knob in It’s a Wonderful Life. Mmuah mmuah mmuah! I love you, my uncomfortable little OA. I’ll never speak ill of you again. Even though you destroy my jaw every night, you are a much better friend than the CPAP mask.

So, with ear plugs and the OA, I’ve tackled 2 of my sleep issues. Now, I just have to work on the hypersensitive nervous system, temperature dysregulation, cervical spine injury, the night terrors, muscle aches, bone pain, joint bursitis, blood pooling, photosensitivity, intermittent drenching night sweats and the awful mast cell poisoning reaction events and I’ll sleep like a baby. Yay!

But, seriously, this is really good news. Sleep is absolutely the key to my healing. Oh, and Dr. M prescribed a newish sleep drug called Belsomra, which works on brain neurotransmitters. I think I might give it a try. 🙂