Charlot

Age: 33 | Germany

“My name is Charlot, I am 33 years old, and I've been suffering from severe medication-related damage since I was 15. Which, unfortunately, has completely ruined my life to this day. In my case, it was the psychotropic pill Mirtazapine. Six years ago, after years of misdiagnosis, I finally learned that I suffer from PSSD. 

This has since been medically acknowledged several times. I always had the feeling and inner knowledge that all of these symptoms were related to Mirtazapine, but if I told my doctors or nurses, they all said it's impossible. Even straight after all of this happened in 2007, I told a nurse that the ‘side effects’ haven't gone away after I quit Mirtazapine after 6 weeks of use, which all set in over night. It felt as if a switch had been flipped. The nurse said I should wait 3 more weeks, then everything should be fine. I was never fine again. I was too young at this point to actually realize what a massive violence and absolute abuse those doctors have done to me. I was numb, and because of the numbness and derealization I didn't had the ‘shock effect’ at this point.

Three years ago, a skin biopsy at the University hospital of my town diagnosed an autoimmune nerve damage, and specific autoantibodies were discovered. I learned that the pills triggered a complex autoimmune disorder. My diagnosis is autoimmune, autonomic small fiber neuropathy (SFN). At least a big part or maybe the main mechanism behind my PSSD syndrome and that of other sufferers suddenly became clear. All of my PSSD symptoms were small fiber neuropathy symptoms, but in the manifestation of autonomic neuropathy. My neurologist confirmed all of this. The repeat skin biopsy also confirmed length-dependent and non-length-dependent neuropathy. (It is also possible to have a positive small fiber neuropathy without a positive skin biopsy; my neurologist also confirmed this.)

Unfortunately, this doesn't mean that you'll get help. I haven't had access to suitable therapies such as immunoglobulin therapy for three years. Despite my objections, my health insurance company refuses to cover the costs. Not only in my case. They don't want to pay because of the higher costs and the many injured. The same applies to rituximab. My neurologist went in contradiction for the rejection of IVIG, but no chance. I also can't get plasmapheresis at the hospitals. Reason? I wish I knew. Also, at the clinic where my neurologist works there are no plasmapheresis treatments available.

Of course, i don't know whether these therapies would have been successful. But since you just want to get healthier amidst all the suffering, you would have tried it. What has been going on here in Germany and around the world for well over 30 years is a massive and, above all, covered-up pharmaceutical scandal. In Germany alone, I am sure there are hundreds of thousands of people harmed by psychotropic drugs, of course all with varying degrees of severity. I strongly believe many of them call themselves "Asexual", have been castrated through antidepressant pills and don't even know, just like me the first 12 years. My symptoms range from derealization, anhedonia, apathy, emotional blunting, complete loss of libido, pronounced fatigue for the past three years, loss of ability to feel hunger and thirst, cognitive impairment, and more.

This is unlivable for a young woman. It's a brutal, lonely and senseless existence to have to live without love, intimacy and real emotions for decades. Sexuality for example is strongly linked up with connection, attraction and bonding to your partner. Due to zero libido etc., I don't feel any sexual pleasure. Unfortunately, the symptoms are persistent. PSSD and these deeply disturbing side effects are by far more harmful than many illegal drugs. Of course, there are much safer and healthier options out there to treat anxiety or other mental problems. Throughout all these years I tried a lot of therapies, including Inuspheresis but nothing worked. Neurologists told me later that Inuspheresis does not wash out the autoantibodies completely. So I hope to maybe try the immunoadsorption therapy before I die, (if I have still the power) there are some people for whom it works.

I survived until today because I could find a little bit of pleasure in music, dancing, and sports. I also didn’t fully know that I had PSSD for 12 years, so I always had the hope of recovering from whatever it was. Since I crashed, every last bit of life quality has gone.

My greatest wish is to have a little more quality of life again. My symptoms worsened due to a research chemical, I was desperate for help. Due to the severity of all my symptoms, I've been registered with an assisted suicide association for some time. I'm slowly reaching the end of my strength after 18 years of fighting PSSD. I would describe my last 18 years feeling like I am in a walking coma, like I completely entered another dimension and Mirtazapine shot me out of reality.

What I experienced in all those years is something that healthy people can't even begin to comprehend, which is totally understandable but it logically hurts. None of us deserved this.

I also know many other young women and young men who are suicidal because of PSSD. It's simply a crime. Everyone with this condition is so strong for trying to handle this situation or only existing in a state that none of us were prepared for. Maybe my experience can help someone. Thats why I thought I would share it. I wish everyone with this condition peace. All of them deserved so much better.”