Uncategorized – Shaking Off the Chains

Introduction

Welcome to Shaking Off The Chains!

My name is Adam, and many of you reading this are already familiar with me. If not, check out the “About Me” page I wrote last year.

The goal of this blog for the time being is to have all the things I write about ME/CFS in one place. Over the past couple of years, my writing has been all over the place: Facebook posts, direct messages to friends, Reddit posts, verbal rants, etc. I’ve written in this blog a few times but I’ve never kept up with it consistently. Over time I gradually started to receive a lot of messages, usually on Reddit, from people that found something I wrote and identified with it. Many of these people are where I was a few years ago and want to get to where I’m at now.

Over time this blog will evolve to include new features to become modernized. I need to add all the usual stuff like social media charms and an e-mail list. Right now though, I just need to make this public and get moving with it.

To provide context for some of the things I’ll be writing about, I’ll explain my life.

At the moment, I’m active about 4-5 days per week. By active I mean I’m up and out of bed, dressed, and can function both physically and mentally. I have enough energy to get through the day, socialize, and achieve my goals. I’m limited to 4-5 days because of the way these meds work: Adderall gives me physical energy and mental clarity but like all stimulants, tolerance builds fast and if I took it every day it would stop working in no time. The other issue is that a powerful stimulant requires a powerful sedative at the end of the day, and if I took Temazepam every day it would also stop working and worse, I would have to go through benzodiazepine withdrawal to get off of it. That doesn’t sound too fun.

I made a lot of progress in 2017. First, I improved my sleep apnea symptoms through weight loss. This was a big obstacle, making it impossible to be active for more than a couple days in a row due to the lack of sleep. Although these symptoms have significantly improved, some still persist. Next, I identified the cause and treatment of the severe nausea and vomiting that I developed in the middle of the year. I suspected it to be related to the motor tics and tensing of muscles that can occur due to stimulant use, it was wrenching my gut.

2017 also brought an achievement I believed to be impossible: I received my first paycheck! I’ve been able to do a lot of fun things over the past couple of years, but working in any capacity remained an impossible dream. It’s easy to do things here and there when I can plan ahead and ensure I’ve had enough rest but work requires predictable, consistent good health for the vast majority of days in the week. Since my early 20s, I’ve visited college career centers, disability services, and had several appointments with Mass Rehab which lead nowhere. The work I found wasn’t the result of official aid but from the social circle and connections I had built up.

Again, it was only four years ago that I could barely get out of bed, had been years since I spoke to any of my friends, and I found no enjoyment in life. I hope you enjoy following along my journey and find the experience informative and entertaining.

Soon I will change the main categories you see up top to something like this:

Commentary: I’ll give my take on whatever topic is on my mind to give you a look at the world through my eyes.
Treatments: I’m always reading about or experimenting with different treatments. I like to talk about my experiences and the things I’m learning and I’ll do so here (instead of random outbursts of “so guys, I’ve been reading about fluromodafinil…” at social gatherings).
The Healthcare System: Quite often, finding the best treatment is the easy part – the challenge is navigating the healthcare system and acquiring it. The organizations meant to be on your side often become barriers. Between the FDA, DEA, doctors, insurance companies, and the pharmacy, there’s always a challenge and I’m still learning.
Blog: My daily life, less formal writing and rants about whatever happens to be on my mind.

Feel free to reach out to me via email at adamsotcblog@gmail.com until I set up more convenient contact methods.

Insomnia and Music

As I write this, I am sitting on a stool in front of my laptop at Rick’s Music World. I’m here every Thursday night to perform at and livestream the open mic. Anyone who knows me on even a casual level has heard about this place and probably seen some videos of my performances. It was here that some of the greatest moments of my last few years took place, including my incredible Halloween feature, which happened during the months that I got away from writing in this blog. I’ll need to write about that and fill in the blanks sometime.

Right now, I have other things on my mind. Sometimes my symptoms start causing a chain-reaction and really kicking my ass, and this is one of those times. I’ve fallen way behind on sleep, which is increasing my fatigue and brain fog. It also makes my Adderall tics worse, and the stiff muscles are causing that burning pain in my shoulders. For some reason, the past few months, when I get that burning shoulder pain it eventually causes nausea… so yeah, I’m pretty uncomfortable right now, but the symptom that caused this chain reaction was insomnia. If I could fix that, all the other symptoms would improve. Well, tomorrow I hopefully start dealing with that.

I finally had a sleep study done a couple of months ago to confirm the obvious: sleep apnea. Every night I sleep for 2-4 hours and then wake up. If I took Adderall during that day, there’s still enough floating around in my brain stimulating it that as soon as I’m awake, my brain is all “We’re awake again? Great! What are we doing? Let’s work on that project we started yesterday or start another one! Let’s go!” so I can’t get back to sleep. I can afford a 2-4 hour sleep night here and there, and actually I like having one from time to time. When you’re blasting your brain with amphetamines, missing one night of sleep isn’t a big deal and during these 40-hour bursts, I get a lot accomplished. The problem starts occurring on days 3, 4, etc… I become a zombie that can’t think or move or get anything productive accomplished.

Tomorrow I pick up a CPAP machine, which basically makes sure you keep breathing through the night to prevent waking up. The company is named Enos, which is funny to me not only because of wrestler Mike Enos, bus also because it rhymes with penis. I’m easily amused after falling way behind on sleep I suppose.

Anyway, I’ve heard mixed comments about CPAP machines. Some people tell me that their sleep improved from day one and it was the answer to all of their problems. Others tell me that it eventually helped, but it took up to a year. Others say they still can’t sleep at all. My hopes are high, but the one thing I know for sure is that my sleep can’t possibly get any worse.

The two symptoms I took aim at overcoming this year were sleep and pain. I’ve got my pain somewhat under control, now sleep is the biggest enemy. There are so many things I want to get accomplished that aren’t possible when I don’t sleep.

Fixing insomnia is one of the final pieces of the puzzle. I’m getting very close to finally figuring it all out.

Defeating Brain Fog

Brain fog sucks. It reduces witty and intelligent people that are full of ideas to mindless zombies.

When I’m not on any of the medications I have on my arsenal I am a poorly-programmed robot. I can’t think, I don’t have any emotions, I have no interests, I don’t have anything to say… If you try to have a conversation with me, all my replies will be short like “yes” or “no.” I’m not me.

I’ve tried a variety of medications and supplements to fight off brain fog, and there are many choices out there.

For me, Adderall is the winner by a large margin. However, it comes at a price.

Provigil (Modafinil) is a “wakefullness-promoting agent.” Many people have had some success with Provigil and it’s newer cousin, Nuvigil (Armodafinil). There is also Adrafinil, which converts to Provigil in the brain that you can buy without a prescription.

I’ve been taking 500mg Rhodiola Rosea, 500mg Niacin, and 50mg DHEA daily for about a month but I’m not sure if they’re doing anything significant. I have been feeling better since taking them, however it might be other things in my system. Rhodiola in particular is very interesting though and worth looking into.

Many say D-Ribose helps with brain fog but I tried it for over a month without any noticeable effects.

Often when dealing with medications you have to simply go through the trial-and-error process and see what works for you. Luckily, there are a variety of things out there to try.

The Absurdity of Healtchare

I learned a bit about how ridiculous the healthcare system is recently.

I had been taking Adderall just 2 or 3 times a week due to the side effects, so I was looking for something else to take during the other days. After some research I decided to Nuvigil (Armodafinil) a “wakefulness-promoting agent.” Once the patent of Provigil (Modafinil) expired, the company created Nuvigil to continue their profits. However, I had been on Provigil years earlier and read that Nuvigil is similar yet different in ways that made me want to give it a shot.

I asked my primary doctor which kind of doctor would prescribe it, and he told me neurology deals with that. I went on my insurance companies website, called some neurologists and asked if they prescribed Nuvigil. One did, and I set up an appointment. We met, I explained to him my situation, and he told me that I’m a great candidate for Nuvigil. Excellent! I didn’t realize it would be that easy. “There’s just one problem,” he says. “Insurance won’t cover it if I prescribe it, so call your psychiatrist or rheumatologist and I’ll guide them through prescribing it.” I’d never heard that one before, but I was hoping it would be an easy task.

I called my rheumatologist first since the neurologist claimed he knew the guy. My rheumatologist calls back and says “Sorry, but it would be better if you ask your psychiatrist.” Then, my psychiatrist explains to me that it’s very difficult to fight with the insurance companies to get them to prescribe a drug like this. Why? Well, they will say “Why not just take Adderall every day?” because it’s cheaper. They might cover if it I claimed Adderall didn’t work for me and stopped taking it, but I didn’t need a replacement – just something else I could take during the rest of the week. Insurance’s option for me is to either take Adderall every day or not at all, and neither of those options work.

This let me know that even if you find a doctor willing to prescribe you a drug, it doesn’t mean the insurance companies are going to go for it. It’s just yet another hurdle in the path of getting better. This situation was just one of many that opened my eyes to the fact that the healthcare system isn’t designed to make sure whatever the patient needs to feel better is done, no. It’s designed to make a profit, like everything else.

So what did I do? I kept looking, and discovered there is a legal alternative called Adrafinil that can be purchased without a prescription. Adrafinil converts to Modafinil in the body.

This entire situation, despite being a huge hassle and a game of hot potato with my doctors, taught me some valuable lessons about how to navigate our flawed healthcare system.