LDN Day 8: O Frabjous Day!

You won’t believe it. I don’t believe it! I got 9 1/2 hours sleep. I have been wearing my Zeo headband for years ~ long before I got sick ~ and that is the longest sleep time it has ever recorded. A lifetime record! So, yesterday, this is what I did that was different than most days: I took a painkiller (we’re talking only 500mg of acetaminophen; remember, I hate drugs), I took my nasal spray right before bed, I didn’t eat very much at night, I pushed myself to go to the dog park (it was awful, I made my husband go with me and I spent the whole time crying. It just felt like I had major flu and someone had forced me to walk around a dusty, loud, hot, dirty park), I pushed myself to do some gentle stretches right before bed, and I used a different pillow. I usually use an orthopedic pillow with a lump to support my neck, but last night I wound up using a regular $5 fluffy one that I had been using between my knees. Hhmm. Maybe I was simply so exhausted, there was no other option but to sleep.

I already feel different this morning, but I think it’s just in attitude. My eyes and hands are still swollen, my muscles are still sore and my head still hurts, but I am elated that I got so much sleep, so nothing can bring me down.

The LDN does seem to be constipating me and I still have not noticed any good repercussions from taking it ~ only bad. But, I’m sticking with it. Part of me thinks, if I could get 9 hours sleep every night for a month ~ or 6 months! ~ I would be better. Or, at least, it might give me the mental strength to be positive and hopeful.

LDN Day 7…the insomnia pill.

Low-dose naltrexone is the opposite of a sleeping pill. I have been a bad sleeper my whole life, but I have never experienced anything like this. In the past, when I had insomnia it was because my mind was racing, even though I was exhausted. This last week, my mind isn’t racing, I am just wide awake. Wide awake with my eyes closed. Mind alert and blank. Eyes wide shut.

Take a look at the Zeo graph ~ there should be more black than blue. There should be fewer graph lines showing because you are asleep. You want empty space, not these huge blocks of blue that show you were awake (the top line = “W” for “wake”). I was in bed from 10pm until 9am. I didn’t sleep. Even when I was asleep, I wasn’t really asleep. Each of those graph lines represents 5 minutes. I would be in deep sleep for 5 minutes and then awake again.

Also, that bright light in my eyes was a constant last night. I am lying in a dark room with my eyes closed, but it feels like someone is shining a spotlight on my face. I would open and close my eyes and what I saw with my eyes opened was darker than what I saw with my eyes closed. How does that happen??

So, needless to say, I am tired today. My eyes are very swollen, my hands hurt. My back and shoulder muscles feel a little better than yesterday and much better than the day before, but I have a headache. I even had a massage yesterday and I fell asleep during my daily meditation ~ you would think I would be so relaxed for bedtime.

My chest was still tight last night and, for the first time, I got some nausea right before bed. Other than that, I can’t tell that LDN has done anything. I will stick with it, but I better start sleeping more or feeling better during the day ~ either one will do.

LDN Day 6…a better night.

Last night, I slept better than I have in the past 5 nights. That doesn’t mean I slept well, but I slept better. I think I might have actually hit 8 hours. Zeo says 6 hours and 50 minutes but it looks like the headband fell off or lost contact with my forehead for over an hour. I still had crazy dreams (about saving my dogs from danger. I always have this dream. What do parents of human children do? I think I would never stop dreaming about keeping them safe). I also woke up with no blood in my arms multiple times and pain in my neck, as usual, but what was different from the other nights? Well, yesterday, I got a bit of exercise at the park (walking slowly, but something), I used arnica and took a painkiller for the muscle pain, I took my antihistamine nasal spray twice, I used my neck stretcher thingy (like a mini-rack for your spine), I did mild leg and arm stretches, I didn’t eat last night after 5 or 6pm, and I did a little mental preparation before I went to sleep, telling myself that everything was great and the diet would be exciting and tomorrow I would have energy and, oh, I LOVE bed! (lie ~ this year, bed has become all things bad) Also, the temperature dipped last night and my room was much colder than usual (which is typically not a good thing for me because I get chilled and my head and ears get cold. Back in January, when this sickness started in earnest, I would wear a woolly cap to bed every night, as well as have the electric heater on, as well as cuddle a hot water bottle. I’m going to invest in an electric blanket this winter). I don’t know what, if anything, helped me get more sleep, but I want to track it. I know if I just popped a bigger, better painkiller and a muscle relaxer, I would sleep much better, but I still refuse. It freaks me out. If I stop the LDN, maybe I will try other options, but, for now, one drug at a time, sweet jesus.

Today, I am stiff and achy, of course. My eyes are VERY swollen. I am going to chalk that up to sleeping longer and maybe a bit deeper and pretend it is a good thing. My hands still hurt and are swollen and the left thumb is still one raw nerve. Oh, I keep forgetting to tell you about this one crazy side effect I’ve been having at night since starting the LDN. I wake up in the night from a light in my eyes, but, when I open them, the room is black. This keeps happening! From behind closed eyes, I think someone has opened the blind or something, but when I come fully awake and open my eyes: darkness. Bizarre. Also, LDN seems to be affecting my skin ~ I have a bit of a break out on my chest (never happens) and face.

Yesterday, I did make it to the dog park, but not the pharmacy or the grocery store. I was just so wasted and the weather was crappy. So, I haven’t started the diet or the supplements yet. I’m having my tea with milk and splenda and savouring every sip. The Good Doctor dropped another bombshell about my diet late last night via email: NO BEANS. That means NO PEANUT BUTTER, NO HUMMUS. That kills me. Hummus can replace so much ~ eat it with veg to feel more full, put in on sandwiches (or, in my case, lettuce wraps. Yum), baked hummus chicken is good… But peanut butter I will truly mourn. Peanuts are my go-to food. She also said it is essential to have no refined sugar. That made me want to punch her in the face. If you ever read this, Good Doctor, I don’t really mean that. I don’t want to hurt you, you are my only hope, but I am just so overwhelmed by what I have to do, what I can’t do, how NOT easy eating is going to be.

I’ll start the diet tomorrow. I promise. I’ll go shopping today. I’ll have to make homemade soups. Lots of homemade soups, salads, nuts for snacks and … what about breakfast? I still feel discouraged about breakfast. I’ll have to develop a liking for the fake yogurts made with soy or coconut milk. I could add fruit and crumbled Lara Bar and pretend it’s granola or muesli. Then, to stop my blood sugar dropping, eat a bunch of almonds. This is going to fun. You are going to feel great.

Have I mentioned my blood sugar? If I have, forgive me ~ no memory. I have reactive hypoglycemia. I can fast for 10 hours and my sugar is fine, but, as soon as I eat breakfast, I have to watch out. An hour or two later (depending on what I had to eat), my BS plummets. I usually catch it in the 60s and 70s, once I start to feel the shakes. Last week, it was 58. The week before it was 43. That’s low. Way too low. It had an effect on my whole day. So, now I am trying to be very mindful of what I eat in the mornings.

LDN Day 5… still no sleep

Ugh. I am so tired. I had another terrible night. I took the LDN and was in bed at 10pm and didn’t get up until 9am. In 11 hours, I managed to get 6.5 hours sleep. I woke up constantly again. (Check out the Zeo graph. “W” at the top = “wake”) I had to go to the bathroom constantly. I was uncomfortable and in pain. I had crazy dreams. I was sweaty, but cold. Extreme hunger finally forced me out of bed. Ugh.

There’s this thing I do in my sleep that always wakes me up. I wake up with all of my muscles tensed from head to toe, my back in an arch, my hands in fists, my arms and legs rigid, my jaw clamped down so hard it feels like my teeth might break (and they have). I have no idea why it happens or how to stop it, but I am always afraid that I am going to throw my neck out while doing it. I have degenerative disc disease issues in my neck (cervical spine). When my neck goes out, it is the most acute pain I have ever experienced in my life. I am paralysed when this happens. I have been seeing a physical therapist for years with minimal progress. She said I had the worst case of hypermobility she had ever treated. I have an at-home TENS unit (transcutaneous electrical nerve stimulation) which I use every day. It helps me not have to use pain killers and I basically stopped going to the PT, because now I have the equipment they use at home. Today, as I type this, I have it zapping my back and neck ~ I tweaked something in the night with all the tensing and thrashing about.

I haven’t had a “good” day since the day I started LDN. I have felt fluish and chilled every day this week. The pain in my back, shoulders and neck makes it difficult to do much ~ even walking up and down the stairs. My chest is tight the past 5 days and my nose is either running or stuffed up. My hands ache. My left thumb has been virtually useless for days because there is a painful electric jolt that runs down it every time I press it into a certain position. After lunch yesterday with my friend, I had planned on going shopping for groceries and supplements for the new regimen, but, after two hours of visiting, I was weak, felt faint, my muscles were buzzing, my concentration was totally shot. I was having such a hard time focusing on our conversation and the responses I should give… That doesn’t happen a lot to me. I have had some cognitive disturbances with memory, but having to put so much effort into focusing on what you are hearing and what you should say… that’s a new one.

I would love to tell you about the stool sample kit that I have to do, but I won’t. It might be the most disgusting thing I’ve ever dealt with. Well, that’s not true. I’ve dealt with more disgusting things (work in an elderly care facility and restaurants long enough and you see things you don’t want to). In fact, I’ve experienced more disgusting things just surfing the internet.

Today, I am determined to go to the dog park, the pharmacy and the grocery store. I’m determined to finish the laundry and laugh and PLEASE GOD get a better night’s sleep. Maybe I should take a melatonin…. but I hate mixing drugs. Stay tuned.

LDN Day 4… a visit to the Good Doc

Last night, I didn’t feel great: My IBS was acting up, making me feel passy outy. I had a sore throat, chills, was achy, was sure I was getting a cold (but I’m sure I’m getting a cold about once a week when the flu symptoms are acting up). I went in the hot tub to alleviate the chills, then, an hour later, took a shower, then, an hour later, took an epsom salt bath and went to bed. Couldn’t stave off the chills until I made the bath about 110 degrees. I went to bed at 7pm, but didn’t go to sleep until 11pm. I again took the LDN at 9:45pm and still had a bit of a tight chest, but nothing scary. My night was very tossy turny, as usual, and quite sweaty and feverish. The night sweats had completely gone away there for a few weeks, so I need to get back to that. When I sleep without sweats, it changes everything. I “slept” from 11pm-9am. 10 hours, but I only got 7.5 hours sleep. I was awake from 1am-2am, 5am-5:30am, 6am-7am and multiple other times briefly throughout the night (so said my Zeo). It makes me so crazy. I just want 8…9…10 hours of deep, uninterrupted sleep.

This morning I feel okay. Very stiff, but that is usual. My hands aren’t quite as swollen and sore. My eyes are still puffy. I have a sore on my tongue ~ something I’ve never experienced before. Hopefully it will go away if I ignore it.

Maybe you’re reading this for the LDN info and you didn’t sign up to hear the other stuff, so,for you: I feel no different than before I started on LDN 4 days ago (probably worse, actually) and, now, here is some fun other stuff I’m doing to help my symptoms:

My new Good Doctor has me starting a new regimen today. I have to do a 3-day stool collection (that’s probably why my IBS is acting up ~ at the thought of a poop collection!). Today, I am also starting a new diet and going shopping for a bunch of new supplements. The diet is: absolutely no grains of any kind, no dairy, no red meat, minimal amounts of processed foods and sugar. She said, if you can’t grow it, don’t eat it. I already know I’m going to break that rule. I will be strict about no grains (no granola, no rice, no popcorn! Oh my!) and no dairy, but I’m sure I’ll be using ketchup and mayo etc., buying tinned soups… those are things I can’t grow, right? Anyway, I’m trying to figure out what to eat for breakfast and it is stressing me out. Maybe I need to buy a juicer. Gross.

I’ll tell you the supplement details later in case anyone wants to try them.