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.

Explaining CFS to the Ignorant

We’ve all encountered some ignorant idiots in our time. Here are some situations I’ve encountered:

  • I told my primary doctor that I had been seeing for a year that I was going to apply for disability. His response? “Why?”
  • School teachers that tell you that they’re offended when you rest your head on the desk during class, how disrespectful.
  • Parents that think you’re just being difficult and don’t want to get up and go to school.
  • Randoms on the street that say “Chronic Fatigue Syndrome? Oh, I have that too! I’m so tired after working my 8 hour shift!”
  • Fatigue, so like what, you just get tired sometimes? Get some sleep and you’ll be fine.

 

We want them to understand how we’re feeling, but how? After years of dealing with this, I’ve learned a few things. You need to compare the feeling to something they are familiar with. When I first got the CFS diagnosis, I looked at some books and what I found was very depressing quote. I’ve since used it to my advantage to get others to understand me, however.

“CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

By comparing the feeling of living with CFS to that late-stage AIDS, someone undergoing chemotherapy, it helps garner some understanding. People as a whole have a lot of sympathy for those dying of cancer and AIDS – many have had a friend of family member stricken with these ailments.

You can find more descriptive quotes here that really paint the picture of what life with CFS is like: https://thoughtsaboutme.com/quotes/

Chronic Fatigue Syndrome – What is it?

If you’re reading this, you probably already have a decent idea of what Chronic Fatigue Syndrome is, or you’re living with it every day… but I can’t have a CFS blog without a post about CFS, right?

Chronic Fatigue Syndrome is a very mysterious illness characterized by extreme fatigue and just about every unpleasant symptom you can think of – muscle pain, abdominal pain, headaches, sore throat, insomnia, etc. CFS is not an illness with a known cause, but rather a name given to a set of unexplained symptoms. After being tested for everything else that could possible explain the symptoms (AIDS, Lyme Disease, Lupus, etc) the CFS name is given.

In addition to this already giant burden, CFS sufferers have to deal with the stigma attached to the illness. Since these symptoms are unexplained and cannot be measured, some people (and even some doctors) doubt that his is a real condition “it’s all in your head.” These symptoms are not psychosomatic and it’s very offensive to be told these symptoms are imagined. It implies that the sufferer has some amount of control over his or her illness and chooses to keep suffering. Over the years I’ve learned some techniques to educate the ignorant.

Treatment varies from person to person as there is no common treatment. Personally, I disagree with a lot of the treatment suggestions out there which is partly why I’m writing this. One common suggestion you’ll see is to not push yourself. If never pushed myself, I wouldn’t know what I’m capable of and I wouldn’t have been able to experience my amazing trip to Maine. It’s smart to not go beyond your limits, but you could constantly be challenging your limits. Situations change over time, and you might be capable of something you weren’t last year. You’ll never know if you don’t try.

At first glance, CFS is an illness with no happy endings… but it CAN be done. It’s up to you to take control of our life.

How I Finally Got Better

It was January of 2014, and something needed to change. I had been taking Adderall every day many years, and by now, tolerance had diminished all of its positive effects. Taking it only prevented withdrawal. I felt a constant burning in my shoulders, I wasn’t sleeping well, and I had no energy. I needed to do something, but I wasn’t sure what. Adderall was the only drug that ever had a significant impact on me and without it I wouldn’t have been able to graduate college or have a life outside of my bed at all. The only way it was ever going to work again was if I took a long break from it to reset my tolerance, so that’s what I did.

The next year was about what you would expect from amphetamine withdrawal. I would sleep for 12+ hours a day, quickly find something to eat and lay on the couch for a few hours watching TV. I’d then go to bed, and restart this process every day for nearly a year. I had lost contact with most of my friends a couple of years earlier when things started getting bad, and during this time I completely dropped off the map. This was a very rough period and was the closest I came to losing mind since I had in my teens. When my symptoms first started in my early teens, between the sudden constant pain that only worsened and the loss of all my friends due to the fact that I couldn’t go to school anymore, I lost it and had to spend some time in a psych hospital. I had developed a strong mind capable of processing all of these issues since then, but the isolation this year almost pushed me over the edge.

When I felt like I had been off the drug for a sufficient amount of time, I decided to start taking it again. The whole reason why I was in this mess in the first place was because I took it every day, so I decided to cycle it. I would only take it a couple of days a week. It was amazing. I hadn’t felt energy like this since I started taking it in the first place as a teenager. It allowed me to function a couple of days a week, which at the time was amazing. I managed to pass a some college classes (one per semester) during this cycle. I was very fortunate to have these two days, however I quickly realized I wanted more.

I started using my two days of brain power to make use of the internet and research medications I hadn’t heard of before. I also learned a lot about how the brain works so I could tell which drugs might be the most beneficial to me, how to take them safely, and how to avoid tolerance. I had seen all the best doctors in the world for years and they couldn’t figure out how to help me at all. I figured it was worth a shot to try it on my own.

I never had much luck with rheumatologists before. Much like other doctors I saw, they would run their tests, find nothing wrong, try a couple of meds, and give up. In my experience if you go to a rheumatologists complaining of muscle pain, they will try you on Neurontin and Lyrica and give up. I read about a drug called Baclofen and brought it up to my doctor. He had heard of it, but he needed to get his tablet out and do his own research to learn how to prescribe it. I thought “He needs load up Wikipedia to learn about this drug?” Unfortunately, the maximum he was willing to prescribe was only about 1/3 of the dose I needed. High-dose Baclofen has a variety of benefits, and studies exist showing that these doses are safe and without side effects. In France, they use high doses to treat alcoholism with great success. Baclofen helped lessen some of the effects of Adderall, so I now had a winning combination to be even more productive on those two days.

I had been on Neurontin previously without success. I was taking it on my Adderall days to try and lessen my pain, but it has little effect. I thought “Why don’t I try it on my tired days and see what happens?”It is chemically similar to Baclofen, a medication I’d like to take daily but couldn’t get a high enough dose. I spoke to my psychiatrist about it and he wrote me a prescription. It was then that I realized I had been taking it all wrong before. I found if I take Neurontin the day after I take Adderall, I still have enough leftover dopamine floating around in my brain and when I throw the Neurontin on top of it, I’m able to keep my sharp brain for the rest of the day until I go to sleep. If I take Adderall 3 days a week and I take Neurontin the day after, that gives me 6 days a week where I can function instead of the previous 2-3.

I was still having pain, though. The various doctors I saw over the years were hesitant to give me any sort of painkiller despite my severe pain. For a couple of years I dealt with the pain by downing a pint of vodka a night, and that solution doesn’t last forever without causing some serious problems. I discovered kratom, a plant from Thailand. I read that it tickles the morphine receptors in your brain, yet it is safe and does not cause bad withdrawal. It is self-regulating since if you take too much it just upsets your stomach. It’s very popular in the chronic pain community as well as the opiate addict community since they use kratom to get off of more dangerous drugs like heroin. This all sounds too good to be true, why hadn’t I heard of this before? Well, it lived up to the hype. For the first time in my life, I had something I could take when the pain started getting too bad.

Now at my time of writing, my week looks like this – I am superman 3 times  week, tired but very functional another 3 days, and totally incapacitated one day a week. It’s not all perfect – I still have ups and downs: I might have a couple weeks of insomnia every few months, a week here and there where my fatigue is very bad, some pain, immune system flareups that dry out my skin, etc… but I am enjoying life. I got my friends back, I can go on long trips without being uncomfortable the entire time, I can start and finish projects, I can do things and enjoy it.

Maine Trip

I took a two day trip to Maine recently, and I shook off a lot of chains in the process.

I have a ton of memories of situations that caused me a lot of pain that I’ve been conditioned to avoid. You only have to put your hand on a hot stove once to learn to never do it again. There are many “hot stove” moments in my past.

Some years ago I drove a friend of mine to go see her girlfriend that lived an hour away. My friend didn’t have a license, and I had just gotten mine, so I figured a long car trip would be fun. It was about two hours each way, and afterwards my joints were so sore I could barely walk for a few days. This conditioned me to avoid long car trips.

I’ve been at concerts where my back will start hurting so bad halfway through the opening act that I can’t stand up anymore. Again, I learned to avoid spending too much time up on my feet.

I was able to improve my health a lot the past year or two, so I decided to challenge all of my fears. My situation changed, but I was still playing by the old rules. I need to overwrite these bad memories with good ones. I needed to shake off my chains!

I drove a couple hours north of my home state of Massachusetts to Maine. A good friend of mine grew up there, so she gave me plenty of ideas of where to go and we kept in contact by phone during the trip. I visited some beaches, ate some great food, spent hours walking around Portland, and played a couple open mics. Unlike most open mics that only give you 10 minutes to play, the first restaurant gave me 40 minutes! The second bar I played at wasn’t and open mic anymore but I was able to talk my way into playing for 30 minutes. I met a lot of very interesting people that kept me company after playing my music.

These were the happiest two days I could remember in recent memory. I was on top of the world. Sure I was sore as hell afterwards, but I just didn’t care.

One of the more annoying features of Chronic Fatigue Syndrome is post-exertional malaise. Any physical activity is followed by a long period of immune system flareups. This means a variety of symptoms such as muscle aches, dry skin, nausea, headaches, and other things. Any time I do a lot of physical activity for a long period of time (hours or a couple of days), it is followed by a couple weeks of all of my symptoms flaring up and feeling like I had a bad cold. After my two-day Maine trip, for the first time, I didn’t get sick afterwards.

This trip filled me with a lot of confidence for my future. I really needed it. I can’t let past memories of bad experiences prevent me from doing things, I need to constantly challenge my limits. Things change over time, but if you aren’t constantly challenging your limits, you’ll never know what you’re really capable of.

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.