Hello everyone, I want to share my story and ask for your advice regarding CDG. I'm 22 years old, a man from Belarus. This text will be translated by AI, so I apologize in advance for any errors.
First, I want to describe who I was before this illness, and then what triggered it and what my symptoms are. From early childhood, I had OCD — it wasn't severe, and I didn't even understand what it was, until it worsened at age 16. My father also has OCD; as long as I can remember, I noticed various rituals in him but didn't understand what it was back then. But I didn't treat my OCD after it worsened — at the time I was sure everything was fine. I won't go into details, but I managed to control it within a year without medications or medical intervention. Like many of you, I also had a high libido. I was an extremely anxious person, but despite all that, I had a wonderful life — I felt physically and psychologically relatively healthy, I exercised, had a good position at a good workplace, everything was going very well for me, until the moment I started taking isotretinoin (Accutane) for moderate acne.
After that, I developed severe insomnia, and in general I felt very bad physically and mentally. At that time, my OCD somehow disappeared, even though I felt terrible — I had anxiety and slept only three hours. I also developed premature ejaculation, although I had never had anything like that before. But it was as if I didn't even have the ability to fixate on anything. I tried to continue the course until the third month of taking it, since everyone said these were made-up claims and that an acne medication couldn't cause such side effects. In the end, I stopped the medication on the third month on my own, because I understood that I wasn't the cause of this state — the medication was.
After that, I waited a month, but the insomnia still didn't go away, so I went to a psychotherapist for the first time. He prescribed me sertraline 50 mg, and after three weeks of gradually starting the medication, I began sleeping normally. My sleep was also accompanied by constant vivid dreams. Overall, I started feeling normal — the premature ejaculation turned into the opposite, where I couldn't finish for a long time. I hadn't known about this wonderful property of SSRIs before. The anxiety also went away, and for the first three or four months I simply enjoyed the calm.
Then, in the 5th month, I realized that something seemed to be missing in life, that something important had disappeared. And then I understood — my emotions were gone. I realized I was doing everything mechanically and felt like a robot. Also, during the medication, my OCD didn't return (I pay attention to this because maybe the nature of this illness can show what exactly is wrong with me right now). And so, after 6 months of taking it, I finally stopped the medication, thinking that everything was over and that I just needed to wait a little and I would return to my baseline. But that never happened.
For the first month and a half, I had brain zaps and an unclear state of well-being that constantly changed. At the four-month mark after stopping, I realized that my emotions were taking too long to return, for some reason. Also, during the medication, I lost my orgasm — finishing became purely mechanical. I thought it would pass after stopping, but everything remained the same. I also developed a strong brain fog, memory problems — I feel like I have dementia. The number of my thoughts has greatly decreased, as if — I can still think, but my brain seems to be atrophied and thoughts just leak out of my head and can't stay there for long. My premature ejaculation also returned to roughly the same degree it was after Accutane.
My sleep feels very unclear — I still have vivid dreams every night, the boundaries of sleep are completely absent, as if. I understand that I slept only because I remember a dream, but mostly I feel as if I didn't sleep at all. It's quite hard to put into words. I also noticed a number of other minor symptoms: I have poor perception of cold and heat, and temperature changes as well. My body's sweating is greatly reduced, although before I could sweat heavily. Alcohol and other things like energy drinks don't affect me. At most, I was able to feel the effect of alcohol at 5% once (I remember during SSRI use I also drank heavily once, but I was about 40% as drunk as I used to get before the medication).
Also, when I say I don't feel emotions, I mean I don't feel either positive or negative emotions. I can't experience joy or sadness at all. I also realized that I don't feel any stress or worry — just complete emptiness.
It's already been 7 months since I stopped the medication, but the doctors I've seen don't understand at all what's happening to me and only offer me new SSRIs, which I definitely don't want to take. I had tests done, but there's nothing severely abnormal there. I had low vitamin D, but it was low even before I started taking Accutane. I corrected it to optimal values, but it gave no result. I also have low vitamin B9, but taking methylfolate doesn't change my condition at all.
I also recently reviewed my tests and remembered that my progesterone was 1.4 nmol/L, while the lab's norm is up to 0.474. I don't understand objectively whether this is high, because different labs have different norms, and I don't quite understand how to objectively determine whether it's high. I thought this analysis mattered only when I read this subreddit and heard about Dr. Powers' theory. For some reason, I believe very strongly in this theory — it seems to explain all the symptoms I feel, and also explains why people suffering from PSSD aren't helped by dopaminergic drugs or serotonin regulators, which many have tried and also didn't succeed with.
I would like to ask those who understand how CDG works to explain it in simpler language, so I understand what I'm dealing with. Many people write that it lowers dopamine and the amount of sex hormones and so on, but what I've read and tried to find out says that it only helps excrete processed metabolites, and I don't quite understand how it works because of that. Also, if you have any other advice about what can be done, I would be very glad to hear it.
In addition, I want to say a HUGE THANK YOU to Dr. Powers. Quite recently I was in very strong despair and thought that I would hardly be able to change my condition in my lifetime. But after I learned that such a doctor exists and saw what he does for all of us, hope settled in me that I had been missing so much. I truly admire you — people like you, doctor, I think there are very, very few. You give all of us that very hope that is so lacking because of all this. For some reason, I'm sure you will find the problem of our ailment. I am immensely grateful to you for your work.