It started a year ago (I’m 42). I suddenly started getting very physical agitation, crying uncontrollably, having no appetite whatsoever, sleep was gone (I would sleep for maybe 2 hours then wake up, pace and have this horrible energy as if an alien was trying to come out from the inside; it was a horrible pain but I couldn’t localise it; I felt it came from the chest/stomach area and would spread to the brain causing horrendous tension headaches). I was convinced I was dying from some neurological disorder. I was convinced some permanent shift occurred in my brain structurally.

Evenings were usually better. I even sometimes felt almost like myself again and thought this was all just a nightmare. Brain MRI and all blood tests came back normal (there was one white dot but the radiologist didn’t comment on it at all; my friend neurologist pointed it out but said everyone has at least one, depending on age).

I suffered for several months in this state which kept getting worse. My SO eventually found me a psychiatrist who diagnosed me with agitated depression (I was not convinced). Mirtazapine 15mg and Quetiapine 100-150mg made this horrible feeling go away eventually after a few weeks. I could sleep again. I felt so much better. But I always felt like the medication was just suppressing this feeling of agitation but not curing it completely.

Over the last year, I had 3 set backs. First, when I increased Mirtazapine to 30mg, the horrible agitation came back again. My PDR added “possible mixed state” to my diagnosis as he thought it might have activated me.

Second time was when my psychiatrist wanted to try if I could just stay on Quetiapine and had me wean off Mirtazapine. As soon as I came off, this horrible feeling came back again. But didn’t last long: after I increased Mirtazapine back to 15mg, I felt better again.

And more recently, I have been reducing Quetiapine slowly over a moth or two until 25mg and when I started reducing Mirtazapine; it again came back. It creeps up slowly and then the agitation suddenly hits me. I notice the appetite goes first and sleep (waking up early and feeling very physically anxious). But at the same time I feel also very tired and out of it. It’s so hard to describe: the whole perception of the world changes. I only feel doom and everything that used to make me happy, makes me cry as I become convinced I am dying very soon. I pace for hours, waiting for the torment to pass.

I find it very hard to believe and accept this is a mental disorder. I feel something shifted in my brain and I can’t seem to return or “unshift” it. I don’t understand why it suddenly happened while before, for 40 years of my life I was completely fine. I had anxieties and stress before but this feels so different. I can use vocabulary to describe it and while it may sound like anxiety and agitation but it is much more than that. The vocabulary doesn’t exist to describe the terror, despair and horror plus all the physical symptoms that come with it. Can it really just be agitated depression or mixed state or whatever?

My thoughts are not fast, my speech is not slurred or pressured but there’s just this inner horrible agitation I cannot describe (whenever I reduce the meds). 

After increasing back Mirtazapine to 15mg and upping the Quetiapine a little, I feel much better after 4-5 days of this horror. But I am scared that I will never be able to be myself again. I feel so guilty letting everyone and my family down (another reason why I cry). I feel so useless and I can’t get past this permanent shift in my thinking that my days are numbered.

My psychiatrist explained that mood episodes change or get better with time, even without treatment but I feel the meds just suppress whatever it is I have but don’t get rid of it. This “thing” is now always there, lurking in the background and it will never go away. I am also scared that I will become tolerant or “immune” to the meds and they stop working. I don’t know what I would do; but I wouldn’t be able to stay alive in that state. I read Mirtazapine isn’t even a strong or very useful antidepressant but for some reason, it seems to have this pivotal effect on me.

Has anyone else ever experienced anything like this? Does this even sound like a mental illness? I am having difficulties recognising it as such or making sense of any of it. I just know what when I’m at my worst, I feel I’m gone, it’s not me, it’s someone else and I am just following the motions. At my best, I feel I’m about 70-80% of who I use to be. I mourn the loss of me and am scared I will never be the same again.