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.
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.
Rag and Bone Shop of the Heart 
Supplemental oxygen is great for improving sleep quality. Wonder if you have already tried B12 (preferably injections), inositol and ashwagandha, those can help you stay asleep.
For some people the problem is low cortisol and they can benefit from taking a tiny dose of hydrocortisone at bedtime (I have panhypopit and used to take HC at bedtime and during the night, without it I’d sleep 1 hour max – now I’m on longer-acting steroid and only dose once a day). For others, the issue may be hypoglycemia.
To me your symptoms sound like seizures or TIAs. Sleep deprivation can cause seizures.
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Maija, thank you so much for this. These are great, practical suggestions, most of which I haven’t tried. Oxygen makes me shaky, like I’ve taken an asthma inhaler, not sure why. When I’ve had oxygen, it’s always been inside a hyperbaric oxygen chamber and I don’t feel very good afterwards, so can’t tell if oxygen on its own would be helpful. When they tested my salivary cortisol (years ago now), I had high nighttime levels, so they were trying to bring it down. I take low-dose steroids once or twice a week to manage immunoglobulin infusion reactions, but I think they disrupt my sleep more than anything.
Btw, Did you know you were the first person I discovered when I became sick? I read everything you wrote. Thank you for all you’ve out there. X
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Oxygen with HBOT might not be the same as oxygen by itself, I’m not sure about that. It’s also possible your flow rates were too high and/or you need to get used to it. When I started oxygen with 3 liters per minute flow I got so wired up I couldn’t fall asleep, I even saw caleidoscopic patterns behind my closed eyes(!) – perhaps some neurons in my brain were finally waking up? – and would have morning headaches for a few days suggesting “overdose”. Yet my body learned to tolerate it and it took a month to get the full benefits. I think the stimulant-like effects are actually a good sign, that it’s doing something helpful for your body.
If steroids disrupt your sleep, you’re taking too much (for this purpose, it’s probably fine for the intended purpose). I’m talking about something like 2-3 mg of hydrocortisone, which would be way too little to have any effect on immune reactions, or pretty much anything else but this purpose.
Glad you’ve found my writings helpful.
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You’re not alone EM. I know *exactly* the symptom you describe with your brain – mine felt like it was plugged into the electric, buzzing constantly like it was receiving electric shocks. And I had seizure activity, where my whole brain felt like it was cramping – a Charley Horse in my noggin. But nothing showed up on ECGs, MRIs or my sleep study (well, apart from telling me I didn’t have any deep sleep, but no explanation as to why).
I didn’t sleep the night through for 15 years and usually only slept in 1 hour patches (I slept perfectly before getting ME). Tablets didn’t make any difference and then I became allergic in any event. I tried everything. Not sleeping, and the consequent brain symptoms, made me suicidal.
I knew if I could somehow sleep that I would improve ME-wise, but I had no idea how to get my brain to sleep.
I feel for you x
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Jak, my lovely friend, I quoted you in my reply to hopefulhomies below, I hope you don’t mind. I saved that message from you from almost two years ago — to remind myself how much better I am and to remind myself of what you experienced and came through. Whenever I get worried about lack of sleep I read it. And now with my doctor so emphatically saying that I won’t get better without twice as much sleep, it’s kicked up my perfectionist tendencies and thus my fears about the future. I don’t like to fail at a task.
You’ve done it again now by being the only person to recognise my buzzy brain description. “Charley Horse in my noggin”! Thank you for that. ❤❤❤
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Sleep problems are a doozy to deal with, so I empathize with ya.
That said, I’m always so perplexed by my own sleep habits. I read a lot of complex evidence regarding sleep and while I’m sure that there are conclusive studies about a variety of topics, I choose to employ a sort of minimization on sleep importance. I choose to concretely believe sleep ain’t really da bees knees whenever I get a meager amount the previous night, and I try not to allow negativity of lack of sleep affect me. That belief can go a long way, and it’s helped a homie or two I’ve known along the way that had sleep OCD tendencies (counting hours analytically) as well.
Best of luck!
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That’s interesting you say that because, although the ONE THING I know is sleep changes everything for me (slept pretty well after my infusion this week, didn’t get a migraine, was able to do laundry, cook two meals and Skype with my Mum), a few years ago I decided to NOT CARE about sleep and it made a dramatic difference in my mood. That’s actually when I stopped following the “rules” about going to sleep before midnight and decided to stay up as late as I wanted… And discovered 11pm-2am are good hours for me!
I have to also give credit to Jak (who commented above). When I was very, very sick and desperate and prolonged sleep deprivation was exacerbating everything and making me very scared, she wrote to me and, because she’s made a lot of recovery, I clung on to it like a lifeline. I can quote it because I saved it. She said, “I once went 3 entire weeks with no sleep, which is supposed to be impossible but actually isn’t. But I’m still here. I survived on about 3 broken hours sleep per night for about 8 years. You’re not going to die.” That night, she threw me a life jacket.
My sleep is NOWHERE NEAR as bad as it was, so I’m thankful for that!
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