Category Archives: Low-Dose Naltrexone

by

LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.

by

LDN Day 22…God is music.

I knew I should have posted something last night while I was feeling good… Yes, I dared to say good. I was dizzy and my neck hurt and my nose and eyes were driving me nuts blah blah blah, but, there was this moment at the dog park where I caught myself almost skipping, looking at the sunlight and glimpses of blue sky coming through the trees, humming along to music on my headphones, and SMILING. I felt normal. I felt joy. I felt hope. I thought, for the thousandth time, Maybe things have shifted. Maybe this is the beginning of the end of my affliction. Maybe I’ll be able to get up tomorrow and write, “I’m getting better, I slept well, I have hope for a future and career. Hooray for LDN and supplements and…life!”

Well, I’m not feeling so great this morning, of course. I actually had night sweats last night for the first time in weeks. After 10 hours in bed, my Zeo tells me I got exactly 6 hours sleep. I woke up with a bad headache, my muscles hurt, I’m really grumpy and I am the farthest thing from refreshed, but I have this leftover glow from yesterday. It’s like waking up with a really bad hangover, but knowing that you spent the night drinking with a wonderful guy and can’t wait to do it again.

I pray that this upward trajectory continues. I have to stop therapy because of money concerns and my insurance on massage therapy has run out. The low-dose naltrexone is $60/month (not covered by insurance, of course) and I want to be able to afford it for a while longer. I still haven’t finished the laundry I vowed to complete days ago ~ that will happen today ~ but I tidied the house and made oat bars yesterday (details on my next diet post), so those small things make me feel accomplished.

My husband went to a wedding yesterday without me. It wound up being a huge reunion of his late father’s family. I would have loved to have gone and met everyone. I feel like a ghost, like a figment of his imagination. I spent so many years pouring myself into work and now, when I have the time to pour myself into friends and family, I’m physically unable to participate. Cruel joke. Dear Friends and Family: I am participating from afar. I look at every picture, I read every email, I look at all Facebook posts, I cherish every piece of mail. If I don’t reply enough or call enough or show up enough, please know that YOU are the most important thing to me. You all keep me going, keep me hopeful, keep me grateful and compassionate, and allow me to meditate on what is truly important.

Finally, I am grateful for music. This year, whenever I have found myself lost in some good feeling, inevitably, I have my headphones on…

As the great Kurt Vonnegut said:

If I should ever die, God forbid, let this be my epitaph:
The only proof he needed for the existence of God was music.

by

LDN Day 20… feel awful.

I feel really crap this morning. I shouldn’t even write, it’ll just be depressing. I was quite excited going to bed. I had done three sun salutations without hurting my body or pulling a muscle and I was thrilled. I was planning on writing this morning that I had made progress! But, no. I woke up this morning after six hours sleep in the process of throwing my neck out. I woke up in one of those full-body tenses: fist and jaw clenched, arms and legs straight and hard and then my neck stretched itself in some weird sideways motion and, when I heard the snap, I was fully awake. I iced it for a half hour without even getting out of bed and now I am using my TENS unit. I’m allergic to NSAIDS and I can’t have opiates, so it’s tylenol and ice for me. Nightmare. I even took an epsom salt bath last night and tried to follow all the sleep rules. It was another terrible night and, this morning, my eyes are extremely swollen. My husband even suggested I have had a reaction to turmeric.

Who knows. I’m so over this. If I had a job, it would be difficult to show up this morning. I can’t turn my neck, I look like I’m having some puffy allergic reaction and I’m so tired, my eyesight is blurry. Really blurry. I have my first acupuncture treatment today. I don’t know if that’s a good thing or a bad thing. I’ll let you know later on.

I’m grateful for mod-cons: bathtubs and kettles and hoovers, beds and electricity and running water… Especially the last one. I’m grateful for clean drinking water, flushing toilets, and hot showers.

by

LDN Day 19… My visit to the sleep specialists.

Today I had the 4th (allopathic) doctor in a month bemusedly tell me there is no point in taking naltrexone. She shook her head and, with a quizzical look, said, “We don’t prescribe it – no doctor I know prescribes it. It was used in the past to help drug attacks, but I don’t understand what naturopaths are doing with it now. If you’re worried about taking drugs, melatonin is far, far safer than naltrexone.” Of course I know this. I know it’s not FDA approved, I know most doctors don’t prescribe it, I know it is a long- shot, but there are so many amazing stories out there, I felt like I had nothing to lose. Although, it’s true that I really have nothing to report except losing sleep, gaining weight and being constipated. The dizziness, sadness, fatigue, muscle pain, and all the rest of it seems to be the same.

Today was my sleep study consultation at the medical center. Luckily, these people actually seemed to be experts — it was a much better experience than the chronic fatigue circus. Although, it was still like pulling teeth to get information. The woman in the front office made a good point when I bitched to her about how doctors treat patients like they have an IQ of 50. She said that they have so many patients from different cultural backgrounds or with limited English or with limited education that doctors usually do dumb everything down. It was a good point. It’d be nice if they could really quickly read their client and adapt their communication and level of engagement, but I guess they leave that to the savvy bartenders and servers out there (do NOT underestimate what sort of skill is needed to be in the service industry — not only because of the patience, stamina, intelligence, and highly sophisticated organisational skills needed, but mostly because of the fine-tuned social tact and interpersonal communication skills that are necessary. In short, you have to be charming, perceptive, intuitive, smooth, have street smarts and be able to adapt to any situation, as well as all the physical and mathematical stuff. When a nuclear bomb decimates humanity, it’ll be the intelligent restaurant workers that are walking down The Road).

Anyway, today I had my sleep study consultation (by the way, it took me two full hours to fill out the paperwork for the appointment. Managing a health problem is a full-time job. Maybe I should make that my next career: managing the appointments, pills, paperwork, test results, Rx refills etc. for people. Problem is, no one with medical problems and medical bills can afford help…). They want me to definitely do the overnight sleep study because my insomnia is “quite complicated”. I don’t fit into the typical profile for someone that has sleep problems (don’t drink, smoke or do drugs, not overweight, not very old, don’t have any of the typical health problems, don’t have kids, don’t watch tv in the bedroom, don’t even have a job anymore). They gave me advice on how to change my lifestyle:

Don’t exercise or eat within three hours of sleep.
No tv or computer in the bedroom.
If you can’t sleep, get up — whether that’s at night or in the morning.
Don’t nap during the day.
No caffeine or alcohol in the evening.
Don’t read your book in bed.

Most of this is obvious and I already know. But, my problem is, if I go to bed only when I am so exhausted I feel like I must sleep, then I will either be in bed all day/night or I’ll never be in bed. I always feel like I could fall asleep and I always do, but then wake up half an hour later… I can do this cycle for 12 hours. They said the sleep study would measure how often I am in deep sleep, REM etc. and I said, wait, I have a Zeo that tells me that info. Is this as sophisticated as it gets? Thankfully, they said the sleep study would also measure my heart, oxygen levels, whether I have sleep apnea, whether I snore, how much I thrash about and the brain monitoring shows much more than the Zeo. They said, even though it may feel like I wake up 16 times a night, my brain might actually be so active that it is more like hundreds of times a night in terms of sleep quality. Also, if I happen to sleep like a baby when I am in the hospital, it might just be a vicious cycle of my worry about not being able to sleep causing me to not sleep. In which case, they recommend drugs. They couldn’t believe I hadn’t caved and tried sleeping pills during the last 30 years of bad sleep and, especially, the last year of nonexistent sleep.

For the last 6 nights, I have only had 6 hours sleep each night, but it honestly feels like 2. I am so tired! But I am still taking the LDN and sticking with the diet and the supplements. Tonight, I might start taking melatonin again and up the dose to 1mg. The doctor today laughed at me when I said I had been taking 0.5mg. She said, “Do you mean 5mg?” They never start anyone lower than 3mg.

The pulled muscle in my back feels better, so, my goal today is get to the dog park and finish the laundry. And meditate without falling asleep per the doc’s instructions.

Finally, I am grateful for my husband. It’s almost futile to write about it because there are no words to express the depth of my gratitude. I found the kindest, most generous, most patient, most selfless man in the world (or, at least, in MY world ;)). He has literally saved my life more times than I can count and he takes care of me in sickness and in health.

by

LDN Day 14… What if I never get better?

Sometimes I don’t think I’ll ever get better. If I believed that 100%, I don’t think I could keep going, but sometimes — maybe 3 or 4 times each week — I am hit by the thought that this illness might actually never go away. It hits me like a freight train. What if I can never do the things I want to do again? And my desires are pretty simple. I want to be able to sit and have dinner with my father, husband, sister and her boyfriend and not feel sick. I want to be able to engage in a conversation with my family (or to laugh — imagine!) for longer than an hour without feeling like death. I want my body to not get so chilled to the bone that I can barely form sentences — when everyone else is in tshirts. I want to be able to hug people and sit near people without being afraid that they are going to get me sick(er). Is that too much to ask? Is it too much to hope that I will one day be well enough to engage in those simple pleasures? It’s not like I want to climb mountains or deep sea dive or walk the Wall of China. I just want to be able to enjoy time with those I love.

Today I took it easy all day, stored my energy up so I could visit with my Dad this evening. I sat in the sun, letting it bake me, hoping it could scorch my very bones, heat my body up enough to keep my core smoldering into the evening… I meditated, felt pretty good…. Within half an hour of visiting with my family, the chill came on, then the headache, sore throat, nose started running, chest got tight… My nightly flu. I think I lasted two hours and then abruptly left. Thank god for my husband, I wouldn’t have been able to drive. I took a hot Epsom salt bath and I feel better, more stable, but I have to go straight to bed now. And I’m sad. It makes me so sad. All the people in my immediate family — Mother, Father, Brothers, Sister — are healthy. There may be things I don’t know, but, nothing major. My Dad is going to be 70 next month — he looks great. My Mom is going to be 68 in a few months — she is more physically active than I am. I had recurrent pneumonias as an infant and asthma as a toddler and an undiagnosed thyroid problem as an adult. Is that what set me up for this nonsense? Or is it my Type A, perfectionist, workaholic, control-freak personality, coupled with a high-stress, long-houred job, coupled with the fact that I never exercised, didn’t eat too well and never slept?

Genetic predisposition + unfortunate lifestyle + poor career choice + a brain that never shuts off = Myalgic Encephalomyelitis. Lucky me.

It’s been two weeks — why isn’t the low-dose naltrexone my miracle drug?

Almost forgot: Gratitude.
I am grateful for my amazing, brilliant, witty, intelligent, savvy, caring, supportive FAMILY. Lucky me (no sarcasm this time).