Learning to Live with My New Brain

When someone loses a limb, they have to learn to walk with their new prosthetic. Similarly, when I started finding the right medications in 2015/2016, I had to learn how to go through life with my new brain.

If you’ve ever had any friends that show symptoms of mania (such as in bipolar disorder) then you know how unnerving their never-ending stream of thoughts can be. Excess dopamine in the brain can result in things like mania and schizophrenia, and that’s exactly how the stimulants I take work – they end up causing my brain to pump out a lot of dopamine. ME/CFS causes me to lack both physical and mental energy. Fortunately, the treatment provides both… unfortunately, they’re given in uneven amounts. Each dose grants me about 4 hours of physical energy and 24-36 hours of mental energy and wakefulness. As a result, at the end of the day I often lay in bed and type way too much. I’ll no longer have the energy to feel like doing anything beyond laying in bed, but my brain is still going at full speed and I end up typing a lot.

As I’ve explained before the first step I took to start figuring my issues out was giving my brain a year’s rest away from Adderall because it was the only medication that ever provided me with energy, but I had become too tolerant and it no longer worked. When I started using it again, it was working again I finally had some energy to get things done… but I had too much.

I had grown apart from my real life friends for many years but I had some online friends I had been close to during those years. Despite the mania, I at least knew to keep my crazy thoughts out of the public eye, so what did I do? I spammed my friends’ private messages – two friends in particular, Sher and Amanda. It wasn’t uncommon for me to leave them 100-300 messages over the course of the night, which they would wake up to. Amanda told me she had to start muting her phone before going to sleep because my messages would vibrate the phone until it fell off her bedside table. She didn’t mind, though. In fact, both of them were either extremely patient good friends or they found my rants interesting enough to keep read. Sher told me she would read my messages on the train on her way to school. Regardless, I had an outlet for my runaway thoughts and an audience to receive them.

I quickly noticed a problem, however, I’m not always a manic maniac. I started cycling my meds to avoid tolerance occuring again so I’d go from my brain working overtime at the peak of my med cycle to becoming a braindead zombie at the low point. I’d leave messages and ask questions that I wouldn’t feel like responding to or following up with by the time they responded. These two polar opposite versions of me struggled to form the collective unit you know as Adam. Zombie Adam hated dealing with the problems that Crazy Adam created and vice-versa.

Side note: any close friends of mine know that I use a couple slang terms to refer to my two mental states. If I’m all stimulated and manic I say that I’m “blasting,” and if I’m on the other end then I’m “crashing.” Blast and crash, that’s my life. At first I was very careful and only blasted 2-3 times per week but I eventually worked my way up to my current cycle which is typically 5 days of blast, 2 days of crash.

blastmaster.png
When I returned from the bathroom at a Judas Priest concert and glanced up at the big screen, I thought the universe was speaking directly to me. In addition to the “blast” connection, I also use “Master” in many online aliases, including my eBay/Etsy shops.

I realized I needed to set some rules if I was going to resemble a functional human being. If I knew that I was going to spend the next day or two crashing then I would have to avoid leaving any open-ended conversations because I wouldn’t feel like dealing with them when I woke up the next day. Early on it was difficult to stick to this because I felt like all my thoughts were very important and needed to be said. After all, it had been many years since I felt anything at all… I needed to express myself! After a couple years though, I felt like I got most of the important stuff out. Nowadays I mostly stick to this rule but occasionally still screw up and leave myself a mess to clean up on my rest days. Beyond that, instead of firing off messages directly to friends I instead type up my messages in Notepad and wait on them for a bit. If they’re still important to me later on then I’ll know they’re worth sending. I’ve also gravitated towards chats where I can type as much as I want without needing to follow up later. I’m using Discord less and less (every time you open it, you’re bombarded with notifications) in favor of IRC, where the conversations end as soon as I stop chatting.

irc
Here are the stats for #chat in IRC. As you can see, I (Barrydarsow) am by far the most active user. The stats here are recorded over a span of the past 14 days: https://chanstat.net/stats/rizon/%23chat

This all allows me to handle the mania well enough. What else?

When I added high dose Baclofen to the cocktail, things got more interesting. After giving my brain a rest for a year, I had a couple college classes I needed to finish up. I’ll never forget walking to class from the parking lot during an autumn month and thinking that the leaves looked strange. They were… beautiful? My mom had been pointing out nature scenes to me for my entire life but I never understood what the big deal was. Yeah, the sky is pretty. So? This was different though… I felt it! As I exited my car and walked to the classroom, the surrounding autumn leaves filled me with a strange emotion I’d never felt before, or at least hadn’t felt in a long time. It was a positive emotion.

As time went on I started enjoying many other things. To put things in perspective, let me explain what I surrounded myself with during my worst years. I disliked anything new or unfamiliar, it took effort and brain power – which I didn’t have – to process and understand these things. As a result I stuck to what was familiar. There were many years where I listened to nothing but Black Sabbath. To vary it up, I joined a message board where people share recordings of live shows. I built up a collection of dozens of shows for every tour they did from 1970 to 1996. That was my way of keeping things familiar yet fresh, I guess. I watched the same shows on TV, I never left my familiar environment unless I had to, etc.

Now all of a sudden I’m listening to genres of music I never enjoyed before, I’m appreciating art like I never have before, I’m coming up with all these off-the-wall, creative ideas… it’s not just the fact that I was enjoying these things for the first time ever, it’s also the fact that I spent most of my life apart from these things. EVERYTHING was new to me! When I started travelling, even driving 45 minutes away was an adventure because I avoided even leaving my bed for so many years.

Sounds great right? Well, I had to learn to reel myself in so I didn’t seem too crazy in public. Of course I always noticed pretty girls before, but now they were absolutely breathtaking. I needed to either keep quiet or figure out how to give compliments in a way that didn’t come off like “HEY, I WANT TO FUCK YOUR BRAINS OUT WHILE WE LISTEN TO RAGTIME PIANO.” I also needed to always remember that although I might really enjoy something, it doesn’t mean my friends that aren’t on meds that flood their brain with happy chemicals will feel the same way. I can’t go around telling people “Hey, this song is amazing and you need to listen to it right now!” or “Hey, I’m going to drag you to a wrestling show with lots of people, bright lights, and loud music.” I always need to keep my previous mental state in mind so I don’t forget that a lot of people simply like to do what’s comfortable.

[honk]

I started this journey in 2014 when I gave my brain a rest, then started finding the ideal meds for my brain in late 2015. It’s now halfway through 2019 as I write this and I still find myself making mistakes from time to time. I plan the rest the next couple of days because I’m driving to New Jersey for a Horror Punk show on Sunday. I’ve sent at least two messages to friends that I’ll have to deal with tomorrow. I say “at least” because there are always things I forgot that I did until they pop up later (edit: yep, discovered another as I was proofreading). Stimulants trick you into thinking everything is really important and at the time it is… however, I’m always only 24-36 hours away from nothing being important besides uninterrupted rest.

Lastly, fun fact – due to poor sleep last night, I am in a particularly manic state as I write this. It’s difficult to sit my ass down and focus on one thing long enough to come up with a well-written, organized blog entry. It’s much easier to spam an IRC channel in a loose, stream-of-consciousness manner. However, I’m going to try and remain consistent with my blog. I’d like for my thoughts to all be in one place rather than spread across 20 different private messages and chat rooms. We’ll see how long it lasts!

Adderall – The King of Prescription Stimulants

My life completely changed when I first started taking Adderall. For the first time in a while I had an abundance of energy and motivation. I thought I was cured.

Unfortunately, strong stimulants come with some side effects. The most obvious one is that it’s difficult to sleep. You don’t need as much sleep when you’re on drugs like Adderall – you can get 4-6 hours and wake up feeling ready to go, but after a few days of this it starts to creep up on you. Your muscles get more tense and a variety of ticks can develop which vary from person to person. Some rub their fingers together, some make facial twitches, and worst of all some grind their teeth together.

Tolerance develops very quickly with stimulants. I recall looking up a drugs experience site for people with Chronic Fatigue Syndrome, and all the reviews for Adderall were either “I just started taking it last week! It’s great! I’m cured!” or “I started taking it a year ago… it’s not working as well anymore. I’m tired and my brain is getting foggy again.”

Doctors prescribe Adderall for daily use, but in my experience, using it daily just makes all the negative effects listed above much worse. I learned this the hard way. I took it daily for many years and it helped me live somewhat of a “normal” life for a while. At the end though, I was sleep-deprived, my muscles constantly felt like they were on fire, and my fatigue/brain fog levels were getting pretty high again. I realized there was nothing to do but stop it, so I did. After a year of withdrawal (sleeping up to 15 hours a day, only getting out of bed to use the bathroom, only being capable of watching TV) I began cycling it.

Cycling helps reduce side effects and prevents tolerance. Some people take “Adderall vacations” on the weekends. I take it 2-5 times a week depending on how much I need to get done.

Adderall is fairly easy to get prescribed from a psychiatrist. It’s cheap for insurance companies, it’s their go-to stimulant drug. In fact if you try to get a perscription for a wakefulness-promoting agent like Modafinil, they’ll refuse to cover it and say “Why not just take Adderall instead?”

I’ve seen some members of the CFS community say they don’t like stimulants due to the side-effects and crash. While it’s true that there are some uncomfortable side-effects like muscle stiffness, ticks, and insomnia, it’s done more for me than I ever could have imagined.