I have trouble telling my doctors about my symptoms and difficulties communicating in general

It occurs to me that I have barely ever managed to verbalize the fact that the meds are ruining my life to the doctors prescribing them. This could be for a lot of reasons.

First and foremost, it seems like I go blank when I enter a doctor’s office. I’ve always been nervous in doctor’s offices and hospitals. I just answer the questions they ask me.

Another reason is that sometimes, in the past, when I have tried to bring up these things, they have been minimized by medical professionals. I’ve been told things like, “Other people are on the same medications and they cope just fine.” Well, I just told you I was not coping “just fine,” you know? Had I been coping just fine, I wouldn’t have mentioned it.

And other than those things, there is the fact that I worry nothing can be done about it, so why even bring it up? If they can’t reduce the meds, and can’t get me off the meds, then there is nothing to do besides just continue to roll with the punches.

Other than that, since I have been on the corticosteroids I have always had trouble with numerous things, leaving the house, communicating with people (I often fail to check emails or Facebook messages, just the idea of looking at them gives me anxiety), reading my mail, answering and making phone calls. I do not use text messages at all. I don’t use instant messengers, Skype, etc.

On the other hand, I have no problems communicating in more public spaces on the internet, like internet forums. I have a couple of Youtube channels, I have no problems (usually) making videos, replying to comments on them. I think the think with internet forums and public Facebook groups and posts is that there is no pressure. If you’re talking about something on a forum and you just fucking disappear for two weeks, no one cares. It’s a forum. People do that. This is less true of communicating directly with people via texts, instant messengers, Facebook private messages, phone calls, etc.

I never liked telephones much but I wasn’t especially horrified of them, either. I just can’t seem to deal with any human contact of any sort, unless it’s completely impersonal and public.

Psychiatric disturbances and corticosteroids

There doesn’t seem to be all that much in the literature about psychiatric disturbances caused by corticosteroids, but here is a good overview I found:
http://williams.medicine.wisc.edu/steroid_psych_effects.pdf
In the following, I will make some short quotes from the article and respond to them based on my personal experience.

The most frequently identified symptoms include agitation, anxiety, distractibility, fear, hypomania, indifference, insomnia, irritability, lethargy, labile mood, pressured speech, restlessness, and tearfulness.

I’ve probably had all of those at some point. I’ve been on corticosteroids for about 10 years now. I tend to divide that 10 year period into two distinct portions: the first 9 years, where I was severely depressed, often unable to leave my room (causing me to drop out of college), severely indifferent, anhedonia, tearfulness (there were times I cried about things like pizza toppings), insomnia. Then a few years when by in which I was so apathetic I couldn’t cry about anything.

The second portion began in August 2015 with what seemed to be a rather severe psychotic manic episode. The first thing I did was stop seeing my therapist. This episode wound down after about a week and a half, but continues to this day. It would probably fall under the category of a “mixed episode” now, with symptoms of mania and depression at the same time. Overall though, I am much more energetic, I have trouble sleeping, I have a disturbing and constant desire for drugs and alcohol, suicidal ideations, irritability, I cry all the time, I spend too much money (spending money makes me feel good for 10 minutes or so). The major differences are the energy and the ability to enjoy things, though. I am now more or less able to enjoy some things some of the time.

The most commonly reported corticosteroid-induced psychiatric disturbances are affective, including mania, depression, or mixed states.
Most often, patients receiving short-term corticosteroid therapy present with euphoria or hypomania, whereas longterm therapy tends to engender depressive symptoms.

This fits with my experience.

An overly stimulating environment can exacerbate a patient’s condition.

This is why I am largely avoiding Facebook. It’s a constant, overstimulating, unpredictable stream of unrelated nonsense. There is too much going on. Everyone uses it for a different reason. It’s complete chaos. On a related note, this is probably why I can’t stand going to bars anymore. Too noisy, too many people, chaotic.

Among patients with corticosteroid-induced psychosis, as many as 33% experience suicidal ideation.

I am not surprised, and I fall within that 33%, without a doubt. I have spent many, many hours thinking about killing myself. There was only one time I think that I really intended to do it right at that moment, but certainly I’ve done a lot of things that could have killed me, also, and spent a lot of time thinking about how much I want to die. On wikipedia’s page on suicidal ideation, there is also mention of role-playing: I actually purchased an air gun that looks reasonably similar to a real gun, and I keep it in my desk so I can take it out periodically, point it at my head, and pull the trigger. It’s never been loaded with anything and only takes plastic BBs anyway, but that’s not the point; the point is that I like to point a fake gun at my head and pull the trigger. It’s worth mentioning that, before being on steroids, I never had a suicidal thought in my entire life.

While the article says that some people respond to antipsychotics and antidepressants, it also notes that treatment success can be unpredictable. I have not had any success with various mood stabilizers and antidepressants. Due to adrenal insufficiency, my steroids cannot be stopped. At this point, I am not seeing any options other than learning to deal with it on my own, since drugs and therapy haven’t helped, and I can’t afford to just keep throwing hundreds of dollars at the problem anymore.

Mental illnesses report, Jan 25

It has been several months now since the bad chemicals in my head have changed their configuration. It might be not quite perfect to refer to things as only mania and depression, but that’s the best vocabulary I have at the moment. Sometimes I’m on, sometimes I’m off. I’ve been on nonstop since last August, and it’s beginning to wear on me.
I find it kind of funny, though; I spent the whole time I was depressed wishing I was manic, and now that I am, I’ve actually found myself longing for the depression. I know I don’t really want that, either, though.

This is greatly complicated by the medications I am on. I am convinced that there is little hope of psych drugs stabilizing my moods. I have tried that, and with fucking disastrous results (nearly hospitalized once) and no psychological changes. I don’t like therapy and I don’t feel like it helps me or has ever helped me or ever will. And it was costing me hundreds of dollars a month. I feel like my problem, other than the obvious bipolar disorder, is that it is complicated by the medications (corticosteroids), which exascerbate it and make it sort of unbearable, except for short periods of time when I am falling down drunk or engaging in ebay/amazon “retail therapy” (lol), which is to say, obsessively buying shit and then obsessively organizing and reorganizing the same shit. Books are nice, too. Started writing again and have been drawing more. If I can’t sleep, I have about 50 books of classical sheet music, and I do enjoy just kind of zoning out and playing some Beethoven on the piano. It is almost relaxing.

I could function more or less like a human before the prednisone. With the prednisone, I am barely holding my shit together. The depression sounds nice just because it seems like a very stable, calm, Vulcan-like state, but while depressed, I really I am just completely numb, apathetic, can’t enjoy anything, and am vaguely sick of being alive. While manic, I can be irritable, I can start raging or crying at any time, for any reason, or for no reason at all, I alternate between extreme egomania and something like a post-Catholicism super-masochistic martyrdom complex, but I am very productive and when I enjoy shit, I enjoy shit a lot. So there are good and bad points.

I have tried probably dozens of drugs over the years (talking about psych meds here) and nothing ever had any positive impact on me. Most of the time there was no change at all, and if there was, it was something unpleasant like an allergic rash (depakote) or constant diarrhea for months on end (prozac), or the zombie-like state I was in when they had me on anti-psychotics in the late ’90s.

I have given up on being stable. Part of me enjoys being unstable, just not *this* fucking unstable. So I am just hoping I can reduce the corticosteroids, maybe find something else that works, and at least get to the point where, if necessary, I can more or less pass as a human for short periods of time. I’m not there at this point, I’m more like a very volatile walking pharmacy/toxic waste dump.