We're a little crazy, about science!

Fighting to live

drowning being pulled underwater by dark tentacles

Medication roulette, it’s what I call the process I started over a decade ago. It’s the process where you start a medication, wait weeks/months for side effects or benefits from it, inevitably stop because something serious happens, and then the painful, literally, process of coming off only to go to the next. If you’re lucky this process is quick, you try your hand at the roulette wheel and you walk away slightly better than when you stepped up. Or if you’re like me, you play like a gambling addict hoping for the magical win. But what if you found it, then had it taken away?

Name an antidepressant or antianxiety medication. I’ve probably tried them all. I’ve only ever had an allergic reaction to one thankfully, but I’ve had some very serious side effects over the years. Once the medication made me so emotionally flat that I just stopped caring about everything. I stopped caring about school, I stopped caring about hygiene, I stopped caring about eating. Nothing bothered me, so nothing mattered. In a lot of ways I wish I could’ve stopped the search there, had someone manage my wellbeing and I would’ve lived quite contently as someone without a care in the world. Unfortunately life doesn’t work like that.

One time an antidepressant caused me to be super tired. I could sleep all day and it wouldn’t matter because I couldn’t wait up. This wouldn’t have been so bad if it weren’t for the restless feeling that came with it, like ants were crawling inside my skin. Not that it was itchy, but it felt like I had to move around, except the catch was I had no energy to do it. The psychiatrist at the time thought a higher dose would fix the problem, it made it worse. It was months dealing with that one because it took about a month to build up in the system, then a second round of that with the dose increase. Did I mention lately how much I hate the VA? (military veteran hospital for those unfamiliar)

The most frustrating are the ones that give you the annoying side effects though, the slight fatigue, the mild headache. The stuff that makes you question if it’s a side effect from the medication or if you’re just having some other weird issue. The one medication that I had an honest allergic reaction to I was so desperate to stay on, because of the reviews I’ve heard from others, I kept taking it hoping the reaction would clear up. It caused serious itching and what I assume are hives. From the literature (google), it’s a semi-common problem with that particular medication, I also saw no benefit from it while I was using it, not even a side effect aside from the reaction.

Thankfully I’ve never had the other extreme, suicidal feeling increase from medication. Ironically that may be due to the simple fact that I fight the urge to kill myself daily, so I probably wouldn’t even notice if a medication made it worse, I don’t know that there is a worse. Not that I mind it much these days, you learn to live with it in a weird sort of way. Like I don’t know what I would feel if that ever went away. I would probably have some weird feelings about it. Sort of like when I had a panic attack because I was worried my antianxiety medications would take away my anxiety. Don’t ask, I’m weird, I know.

So you build up a long list of medications you’ve tried and you run out. Literally, there are only so many antianxiety and/or antidepressant medications out there. Then people try to get fancy by combining medications that may not have done anything to see what sticks. Literally you’re just throwing whatever you can at the problem and hoping. If I had to sum up medication roulette, that would be it in a nutshell. There are no answers, no one size fits all, not even a one size fits most. There is just you and a long list of medications. When you’ve been playing as long as I have, there’s not a lot of hope on the better living through medication route. That doesn’t mean medication doesn’t work, because it does, it works brilliantly for a lot of people. It just doesn’t work for everyone.

Is it better to never find a medication that works, or to find one that works only to have it taken away?

Ironically on my journey to medication induced happiness, salvation didn’t come in the form of an antidepressant, it came in the form of a “wakefulness promoting agent™” which is not the same as a stimulant, although you could probably think of it as one. In my case the drug that gave me what I will firmly describe (poorly) as, “the most normal feeling I’ve ever felt in my entire life” was thanks to being prescribed modafinil. Because I was tired, I’m always tired, but I finally had someone take it serious and that psychiatrist left the VA. Because of course she would. Because she was good at her job. And because if you’re good at your job the last place you’re wanted is the VA.

It was night and day difference, not only did my depression/anxiety/PTSD/etc. get better, but suddenly everything improved. Even my handwriting from that time looks completely different. My school notes went from a jumbled mess to something elegant. I was drawing different engineering concepts to help me remember in the margins, other students seriously complimented my notes. I still have my school notes from before, during, and after. Maybe one day I’ll share some of the differences, but I felt like I was a whole new person instead of someone slogging through a vat of razor blades and molasses. For the first time in my adult life, I felt better than I had ever dared to dream. I CANNOT emphasize just how life changing it was and not a single side effect from it. I can only imagine it’s what normal people feel without any sort of realization just how spectacular being able to breathe without the crushing weight of wanting to fucking die feels.

You would think that because it’s not a stimulant, it is not addictive, I had zero side effects, and my quality of life reached heights I had never thought possible, I would have a never ending supply forcibly given to me so that I would stop being so damned depressed/suicidal/whatever. Instead less than a year later, my magical medication was taken away without warning, without anyone telling me why, and years later I found a lovely note in my medical records from the asshole who was in charge of filling that medication simply saying that they would not refill it and that I was causing problems by trying to get it refilled (the actual wording escapes me, but trust me when I say it was 23453643x worse than I’m describing here, like don’t give this medication to this crazy person bad).

So months past, then years, and I despite my anecdotal evidence, my impassioned pleas, and the subsequent stays in the mental wards because, again constantly suicidal, no help came. Once again I was forced to start playing medication roulette with medications I was already on. The trick with that is you cycle through different psychiatrists and they all have the same idea that you somehow haven’t tried this very common type of antidepressant. So you get run through trazodone, fluoxetine, wellbutrin, etc again and again and frankly you go with it because the alternative is just too damned much. Giving up means firmly accepting that this is my reality, so fuck it it’s been awhile, let’s pull out the sertraline again and party like it’s 2010.

It’s been close to a decade since I found that relief and for a decade I’ve begged, literally begged, with tears in my eyes for the one medication that helped. I miss it so much and I fucking hate, HATE!!!!!!!!!!!!!!!!!!!! that I ever even got that damned relief to begin with. Because I would’ve rather gone on with my life not knowing how good things could be. No one seems to listen or believe me because it’s not a medication to treat depression, hell they don’t even know the mechanism of action for modafinil.

I’m so fucking tired of fighting just to live. Like to my bones tired. I’m tired of surviving, of convincing myself that I should just wait to tomorrow to kill myself, because maybe, just maybe, today will be different from yesterday. Maybe today something magical will happen, because it happened once before, so why not again? Look I’m safe, I’m not going to kill myself, at least not today, but damn it if the option doesn’t look so fucking good some days. Depression eats you alive, and I mean that quite literally (here).

So I’m tired, but I keep fighting because maybe today will be the magical day that someone listens. I’ve been hoping that today was the day for almost a decade, but you keep going because, again the alternative is to either give up or check out and I’m too stubborn for either of those. Well my dear readers, today was THE day.

After two different psychiatrists since starting my PhD, one who tried to convince me to sleep with as many women as I could (technically he was trying to convince me to sleep with married women in particular, I wish I was joking) and now my latest, who doesn’t in believe medication (again wish I was joking), she, as in my latest psychiatrist, finally agreed to prescribe me my modafinil. Or rather re-prescribe it to me. She did it so nonchalantly, you would think it was the first time I brought it up, but after so much fighting, I finally have my prescription. I’m not even sure for how long or what I will have to do once this gets pulled out from under me again, but for now I’m just glad I am finally here.

It won’t be in my possession for a few days, at least, since it has to go through the mail, but I already feel a slight relief knowing that I don’t have to fight anymore. She started me off at the low end of the dosage, but I’m hopeful that I can get back to where I was after a follow up visit (probably multiple visits unfortunately).

Since I don’t think I’m a super special snowflake, I assumed someone, somewhere had seen this happen in at least a handful of others who were treated with both depression medication and modafinil. A few years after my prescription was taken away I got curious and found at least one study demonstrating the combination helps (here) significantly improve both major depressive disorder (me, in part anyway) and bipolar depression with the adverse effects no higher than placebo. Which suggests that I stumbled upon something amazing, purely by luck, but has some data to back it up.

A quick google scholar search and I’ve found (another)(and another)(and another)(more)(it keeps going). Anyway you would think that this would be common knowledge to try or something, but everyone seems surprised when I point out there’s evidence to support my experience. Then there’s the taboo of asking for medication, in a lot of cases I’ve found psychiatrists are hesitant to prescribe anything to you they didn’t suggest to start with.

Just some observations from a literal crazy person. Will modafinil work as well as I remember? I don’t know, but I’m about to find out.

4 responses

  1. Oh, Alex. Oh, thank goodness. You got it. I hope it works as well for you as it did before. Imagine what you could do if your potential wasn’t smothered by all this pain and exhaustion.

    I got to the middle part of this blog and started literally whining in distress. Like, out loud. You should NOT feel bad for writing it, that is not at all why I’m telling you this – I would rather know the truth than be happy, as a general rule, so never hold back from sharing anything on my account. I tell you because it means you really are my friend and are loved for it, and you should hear that. You say you’re safe, I know, but the level of pain you’re in and the fragility with which you cling to life still hurt and frighten me. Maybe when she gave you the modafinil, she gave me a respite too.

    However bad things are, don’t ever forget that somebody is very fond of you and would have had a blander, poorer life for the past six months if she hadn’t met you. Knowing that you’re valued and sympathized with isn’t a magic fix for mental illness, and I certainly don’t expect it to be. Just hold onto that for whatever it is worth. I’m glad you kept fighting this long, I’m glad you were too stubborn to give up.

    Well, you’re getting the medicine, and it better work. If there is anything else that would help you (company on chat some evenings? I don’t know) then tell me. If nothing else is useful or comfortable, and all I can do is keep leaving you comments, then forget I said anything – I just have to make sure you know that you would NOT be bothering me. Don’t make me watch you suffer if I can tone it down at all. With some of the stressful hurdles out of the way, I was hoping the downward pull would be fairly weak these days. Guess maybe I was wrong.

    Liked by 1 person

    May 2, 2022 at 11:43 pm

    • Aww I’m sorry for causing distress! It’s okay though, really. Maybe I’m being overly dramatic, but I’ve lived with it for this long and I don’t plan on going anywhere. I’m just tired of it and tired of fighting to get back to where I was.

      It was more of a happy post than a sad one. I don’t think there’s anything anyone can do really to help fix the issue, but I do greatly appreciate your comments and friendship. It means a lot to me and you’ve already been a big lifesaver for me. It may not feel like it when I talk about how exhausting it is just to breathe, but you do make a difference.

      I think the big issue was that I had something that worked for me and it was taken away. Sometimes you don’t notice a problem until its gone, sort of like people who leave abusive relationships say they didn’t notice it because it was so slow to build up. I think it’s the same way for depression and what not, after awhile you wonder if maybe it’s not really depression and it’s just the way you are.

      But in my case, I had this magical pill that made me feel somewhat human. So I got out of it, I know what it’s like to not feel like this and it felt like no one that could do something for me cared. I’ve pleaded with so many people and they all looked at me like I was crazy, which to be fair I am, but I don’t have to be.

      Anyway, point being you make my life a little better and I appreciate it. I just needed some chemical intervention, but now I’m finally getting to go back on it and I absolutely cannot wait.

      I’ll probably take you up on chatting one of these days, things are incredibly busy, but I have a feeling that if the medication works half as well as I remember my workload won’t feel so heavy and I’ll have some time for it. I know I’ve said it a few times now, but thank you.

      Liked by 1 person

      May 3, 2022 at 8:55 pm

      • I told you not to feel bad and then you did anyway. Sssh, don’t apologize. It wasn’t you that made me distressed, it was the fact of the situation. Because you’re my friend and if you get hurt, I get hurt. That’s just how it works.

        Yeah, the conclusion of the post is happy, so I’m not quite sure why it stung so badly. I guess it was finding out that you were more beaten down than I thought, even at a relatively good time when your prospects have stabilized. Hopefully that’s about to end.

        I agree it must have been incredibly frustrating to know that things didn’t need to be this bad, that you were being held down by human incompetence and apathy rather than something inevitable.

        I don’t feel unappreciated either, no no no how could I, you’re so grateful for the smallest things always. If anything I’m just worried about being inadequate. Like I have to fight that kraken in the picture, but all I’ve got is a pocket knife. Just let me do what I can; don’t worry about asking too much of me.

        I can attest to the fact that sometimes you don’t realize how bad a thing was until you get out of it. Here’s to better days ahead.

        Liked by 1 person

        May 3, 2022 at 10:10 pm

      • Ahh! I’m sorry!! Wait, no I’m not sorry…? haha But thank you seriously. And I’m glad you don’t feel unappreciated, I do worry I’m not a great friend since I’m barely around and don’t have a lot to offer in return, at least that’s what it feels like anyway!

        Liked by 1 person

        May 4, 2022 at 2:06 pm

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