Symptoms: Akathisia, Brain zaps, Emotional blunting, Cognitive impairment, Insomnia, Depersonalization/Derealization, Suicidal ideation, Tinnitus, Neuropathy, Severe anxiety/panic, Muscle/joint pain, Anhedonia, Dyskinesia, GI disturbances, Hypothyroidism, Diabetes, Severe weight gain, Metabolic syndrome
I am a US Navy veteran and am 56. I've been what amounts to a professional psychiatric patient for 33 years and counting. I was first medicated at age 24 while in the military. I found out much later that there were other causes that were not accounted for that were generating my issues, and had things been properly assessed I would not have had to endure the 33-year prescribing cascade and iatrogenic injury that followed.
My medication history started with lithium and Haldol. The Haldol caused severe memory and GI issues and loss of time, and the lithium rendered me nearly incapacitated. I was told this was just my body getting used to the meds. Over the years I've been on 19 psychiatric medications and an additional 28 other medications to manage the side effects, so that's at least 47 medications, and that does not include multiple short-term rounds of antibiotics, steroids, etc. I endured and still endure many severe side effects, and some of these side effects were written off to other causes that I now know were drug related.
In 2006, after several hospitalizations that I now realize were withdrawal related, I started to wonder if any of this was actually helping me. I had endured multiple ER visits for lithium toxicity, cognitive decline due to Depakote and Zyprexa, a rapid withdrawal from the Zyprexa and Paxil that led to severe withdrawal syndrome, and reached a peak weight of 269 lbs (I was 145 at the start of my psychiatric treatment). At this point I started the process of taking my health back, but kept going back to the system not realizing that the system and its treatments were the source of my issues.
None of my medication changes and stops were properly tapered or cross tapered. Over time more symptoms emerged and I just continued to get sicker both physically and mentally. This ultimately led to my retirement and transition to disability. Unfortunately, I didn't fully understand the extent of what was being done to me until 2018 after several more medication changes and prescribing cascades.
It was at this time that I went to the ER for severe anxiety, which turns out was withdrawal related, and a large change was made to my medications as an inpatient. This resulted in a complete shutdown of my GI tract, severe hyponatremia, severe cardiac issues, severe anxiety, dopamine super sensitivity psychosis, and much more. I ended up in the ICU for nearly a week. At this point I decided enough was enough, and after discharge I went home to take care of myself and start the process of getting off these meds. This has proven more difficult than I was told it would be.
I did a 3-year 4-month taper of Seroquel and despite that slow taper I still ended up in a state of severe protracted withdrawal. I became largely incapacitated for about 2 years and it's been a slow and very painful recovery ever since. Even now in my 5th year post Seroquel I still suffer from significant sleep and cognitive issues. I am now tapering a second medication, but my nervous system has become so destabilized that I have to go very slow, about 2% of the current dose per month, and it's going to be a very long slow battle to get through this and another medication after that. All of this from medications I was told I could safely stop in just a week, that I now know will take many years to slowly come down off of. It's maddening and horribly unfair and a complete breach of trust, as there was never any true informed consent.
Side effects over the years include lithium toxicity, severe weight gain, short- and long-term memory deficits, double vision, high blood pressure, high cholesterol, type 2 diabetes, akathisia, tremors that were at the time diagnosed as epilepsy, heat intolerance, light sensitivity, bone marrow suppression / immune deficiency, severe circadian rhythm disruptions, headaches, dizziness, worsening anxiety, and much more. There are too many to list in this post.
Protracted withdrawal symptoms include severe autonomic dysfunction, severe food and environmental sensitivities, a large spike in IgE immunoglobulins, urinary issues, electrolyte imbalances, severe GI issues including gastroparesis, wandering nerve pain, brain zaps, electric shocks body wide, tinnitus, severe sound and light sensitivity, and many more. Again, too many to list. I've been through a lot in my life and this is the most frightening experience I have ever had. Currently I am still slowly recovering 5 years later. I still cannot manage anything on a daily basis consistently or full time, as I can still get severe symptom flares and they are unpredictable, so I live my life one day at a time.
The most infuriating thing about all of this is that this is not a natural occurrence. It was imposed and inflicted by the system that was supposed to be helping me. I went from what could have been a successful military career followed by a civilian career in my military field to spending many years of my life struggling to recover from asking for help. That's what all of this amounts to. I asked for help and had my life torn apart and thrown away, and now I am left holding the baggage and having to deal with a system that consistently denies any responsibility for harm done. They have their lives, their vacations, their reputations intact at the expense of those like myself who lost everything and now get to suffer alone and get labeled as non-compliant because we have decided to stop the assault on our systems and take matters into our own hands. This needs to change. Informed consent needs to truly be informed consent. The risks, which have been known for years, need to be brought into the public eye to prevent future harm, and resources need to be made available to those already harmed.
In closing, there are many out there who are currently working in the advocacy movement. I and my best friend Amanda are 2 of them. One of the things we have done is to post a public awareness petition on change.org to help bring awareness to the suffering so many trusting people have had to endure in the hands of psychiatry. Here is a link to our petition that has already been sent to public officials, and we plan to send it again with updated signatures and comments. The more they hear from the harmed community, the more likely the necessary change will start to take place. Thank you in advance if you choose to support and share your voice and comments.