Testosterone

I missed talking about a lot of things during the last few months when I wasn’t writing in my blog, and this is one of those things. It has all the features of a good blog post: It’s a story of success, and a story of how many healthcare professionals are completely incompetent.

My low libido has been a source of anxiety during my entire life. It has had a negative impact on every relationship I’ve ever had, starting with my first one at age 14, continuing to my most recent one in my early 20s. Despite that, it’s not an issue that I’ve addressed until recently because I had bigger problems. When you can’t even get out of bed, it doesn’t seem practical to worry about getting turned on. Now that I’ve made decent progress with my more important symptoms, I decided it was time to start dealing with my penis.

In early 2016, I asked my primary doctor for some blood work as I do from time to time, but this time I asked him to check my testosterone level. Like I always do when it comes to anything health-related, I educated myself about testosterone and what causes the levels to change over the course of the day. I learned that testosterone levels are highest during the first couple waking hours of the day, and that when getting your levels checked, you need to get your blood taken during these first hours because they use the high levels as a baseline. I called in to set up my blood work appointment and the nurse kept trying to write me in for a 7am appointment. I explained to her that my sleep schedule was unusual – my day usually started around 12pm-2pm, so I needed an appointment around then. It took a few calls back and a little arguing, but eventually they wrote me in for 2pm. I got the results, and my testosterone level was on the lower side of the normal range. It was not low enough for any treatment.

Towards the end of 2016 I had a physical, so again I asked to get my testosterone levels checked. I explained to my doctor about my situation earlier in the year, explained why testosterone is checked during the first couple hours of the day, and explained my sleep schedule. He said “Let me check with our endocrinologist and we’ll give you a call.” Endocrinology is the study of hormones. This is basic, fundamental stuff so I figured a hormone specialist would know what to do (you would think I’d know better by now). Sure enough, I got a call back later in the week asking me to come in at 7am. I called back and spoke with the nurse there that the endocrinologist to either write me in for a 2pm appointment or explain to me why I’m wrong about this. I explained to her how people with unusual illnesses like me need to know these things because doctors are so clueless. She told me she would again leave a message for the endocrinologist and get back to me. Sure enough, I got the call a few days later. “Hello um, Adam? So uh, the endocrinologist said um, you need to come in at 7am because uh, um, so the test can be accurate.” I started to argue back explaining that if I had my blood drawn at 7am that would be the END of my day and therefore levels would be very low and the doctor would be concerned, but I stopped myself. “Fine, let’s try it their way.”

Sure enough, I got a call a few weeks later. “Adam? Yeah, your levels are very low and the doctor is concerned.” Shocking! They put me on a testosterone supplement, a topical ointment. As I looked into it, I found that the cream is the worst form of taking testosterone. When you think of guys taking a testosterone supplement you envision them injecting it into their leg, right? Well, there’s a reason for that. The cream is very unpredictable – sometimes the body will absorb 30% of what you rub on your shoulders and other times 70%. It causes a roller-coaster effect of your hormone levels so some days you’ll be getting random erections and other days you can’t get any action going on down there. Oh well, I figured I would give it a try so I could experience what higher testosterone levels felt like and if it was indeed the answer to my libido problem. I set up another blood work appointment (at 7am again) to follow up on my levels after a couple months of taking the supplement, and the fun continued.

I was told to go to Brockton Hospital for my follow-up bloodwork. It would have been easier for me to go to the doctor’s office as it was much closer, but I went there as instructed to. As soon as I got home, I got a call from the office. “Adam, did you go to Brockton Hospital? We were expecting you here at the office.” The icing on the cake was when I got the results of that test. I was interested in seeing how my levels had changed after a couple months of treatment. Instead, I opened up the envelope to be informed that “Adam, your prostate is fine.” Well that’s cool, but what about my testosterone levels?

Later this week I meet with the chump endocrinologist. I’ve read a bit about what I can expect during this appointment. Maybe he’ll continue with the cream, or if I can convince him to switch me to the shots, he might prescribe a low dose that will cause a similar roller-coaster of hormone levels. I’ll probably end up having to find a competent doctor in Boston to give me what I want.

Did the testosterone work, though?

Hell yeah it did. Before this, I imagine if most people thought back to the last time they were really horny it would only be a matter of hours, but I can only really recall one moment in my life when I was really horny in my late teens. Since being on this testosterone though, I’ve had a healthy sex drive as a young man like myself should. Look out, ladies.

 

 

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Stimulants and Sedatives

For me, insomnia comes in waves. I will have no issue sleeping for a few months, then I’ll have a few weeks in a row where I can’t seem to get a decent night of sleep. What’s most puzzling this time though is, I’ve made several changes lately that should have made getting to sleep (and staying to sleep) easier:

  1. I’ve lowered my Adderall dose, which has helped my shoulder pain a lot. My amphetamine tick is rubbing my fingers together, which causes a repetitive strain injury in my shoulders.
  2. I’ve had more regular physical activity than I’ve had in many years, going to the gym regularly.
  3. I’ve tried all sorts of additional sleep aids available to supplement the Trazadone/Seroquel with: Unisom, Benadryl, Valerian, etc. Anything with limited risk to my brain chemistry.

Nothing worked… so I’ve resorted to something I’ve deliberately avoided my entire life: benzodiazepines. Benzos aren’t something that should be taken every day, because physical dependence happens fast and it sounds like benzo withdrawal suuuuuucks.

A while ago my psychiatrist offered me Temazepam (Restoril), but I needed to take medication to sleep every night, and I was not willing to deal with the problems that came with taking that nightly. A while after that, I was experimenting with all sorts of different things, looking for something stimulating to take during my Adderall break days. The only thing that cut through my severe fatigue at all was the curiously named CRL-40,941, commonly referred to as Flmodafinil among other things. It is one of many Modafinil analogues and perhaps the strongest. It is art of a class of drugs called “wakefulness-promoting agents.” Well, that description is very accurate. In fact, I was not able to sleep at all the night after taking it. After reading up it appears I am not the only one with this problem after taking modafinil analogues, and benzos are the only thing that works for others in this situation. Still though, I held off on the temazepam and just stuck to my Trazadone/Seroquel combo. I am still going to try using the night after a dose of Flmodafinil, but if my current bout of insomnia increases, I’m going to need to use it occasionally when I am in dire need of sleep after falling far behind as well.

The experience of getting prescribed it brought back some familiar sad realities about the healthcare system – many drugs that should not be taken daily are prescribed to be taken daily, and without warnings of the consequences. Before taking a new drug I always learn all about it for myself first. I read up on dosing information, side effects, personal experiences, drug interactions,  the way it affects the brain chemically, everything. There is a lot that can go wrong when you are on a lot of medications, and many people learn that the hard way. There are many stories out there from people who trusted their doctor and took a benzo as prescribed – every day. A couple of months later they tried to stop and started having all these awful withdrawal effects.

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.