Search the Community

Hi, my name is Aember and I have had severe negative reactions to SSRIs after very fee doses. I have been sick since January 2020 with a mystery degenerative neurological condition that is affecting my ability to think and feel. I am experiencing progressive dementia and confusion. Here is my story: Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F. Sleep became interrupted with very vivid dreams and bizarre hypnagogic states. Started hypersalivating. Vision became altered, blurry at distance, slightly photosensitive. Extreme fatigue and bed in early evening, sleeping in and off until noon. Increased red pinpoint angiomas developing all over my body. Gradually became anhedonic in March 2020, unable to laugh or cry. Confusion and anxiety increased. Was put on Seroquel 25 mg end of March 2020, immediately had some involuntary movement so stopped after 1 dose. Switched to Trazodone 2 days later and had an extreme Akathesia episode with involuntary movement, was up for 24 hours pacing and raging internally. The next week was put on Citalopram 10mg for 2 days, immediately got dyskinesia (pill rolling, teeth grinding, twitching, teeth licking, bunny nose) with compulsive behaviour, vision became blurrier and developed horizontal double vision halos, perception of time sped up, switched to 5mg Escitalopram for 1 day, started muscle twitching, became flushed, feverish could not sleep (serotonin syndome?), next day became psychotic and babbling, compulsive, bit myself, could not walk. Hospitalized April 2020, put on respiridone 0.125 upped to 0.25 for 2 weeks. Felt weird hot icy burning in chest and esophagus upon initiating, had issues swallowing, voice got raspier, experienced increased hunger, constant fatigue and sedation, dry skin some teeth grinding and muscle tension on and off, vision worsened further (my left eye is now -1 and blurry, was perfect in December 2019), increased constipation, little change in anxiety, increased social compulsiveness (speaking without thinking). Started lactating. Quit April 29 after tapering to 0.125 mg for 3 days. Since then, I had episodes of dyskinesia and teeth grinding, bunny nosing, cramping in hands and feet, but it's gradually lessening as my body adapts to being antipsychotic free. I am still in a confused state (feel like I am about to pass out, cannot focus) with abnormal sleep emotions (cannot feel happy, cannot work) and decreased intellect (issues with spelling, time perception, planning, focus and my degenerative neurological condition persists as well as the hypersalivation and weakness. I am in bed all day.

Hello everyone, I took my first anti-depressant at 21. I am now 43. In the years in between, I have had multiple psychiatric admissions, taken many many different medications, some at high doses, some inappropriate for my diagnosis, and for long periods of time, and had 8 sessions of electroconvulsive therapy (ECT). I am posting here now because I believe I may be experiencing a withdrawal/discontinuation syndrome. My life has been razed to the ground and I am reaching out, to foster hope, make connection, and see if I can educate and empower myself and find guidance and support to get into healing and recovery. My difficulties began 9 years ago. The only drug I was taking at the time was Citalopram, and I was reducing it. The first thing I noticed was increased sensitivity to sound (e.g. hearing the radiators throughout the house I was staying in). I was working as a counsellor at the time, and I began to have feelings of falling through my chair when working with clients, a sensation of falling downwards and backwards suddenly. I then started to feel strange in the car, as if something toxic was coming through the ventilation system, leading me to feel a bit like I wasn't fully there; slightly afraid I would pass out (I never have) or "disappear". I would pinch my cheeks to try and "come back". I couldn't understand it. For 18 months, I followed the initial thinking from my GP, that I had labyrinthitis, and had various auditory system tests. This revealed nothing. I then went to the London Balance and Hearing Centre and had a thorough check there. They found nothing wrong and said that 40 % of people presenting there they referred on to psychiatry. By this stage, I had stopped driving, stopped working, had considerable difficulties walking - I walked using 2 sticks, and continued to have extreme sensitivity to sound (found the sound of the dishwasher on the floor below almost unbearable). The psychiatrist diagnosed "total serotonin depletion of the vestibular nucleus" with utter conviction (no sample/scan of anything has ever been taken by a psychiatrist in 22 years of treatment), and admitted me urgently to hospital. I was not depressed at the time. I was bombarded with medications. 3 weeks later, I went into depression, but the somatic symptoms I had been admitted for continued. More and more medications were administered. Eventually, I discharged myself and went to another psychiatric hospital. They were shocked at the levels of medication I was on (this was 2013) and proceeded to reduce and change the drugs. I left this hospital in 2014 but my somatic symptoms persisted (difficulty walking, unable to tolerate the sound of the fridges in the supermarket, clinging on to the shelves, tremors in my legs, unable to stand in line....). By this time, I had a diagnosis of Complex Post Traumatic Stress Disorder (CPTSD) - which I identify with to this day. This was September 2015. Because, despite high levels of medication, the symptoms were still present and limiting my functionality (e.g. unable to tolerate short attending a short evening course on social media at my gardening group: I couldn’t cope with looking at the screen, sitting on a chair without sides, or the sounds – and had to leave), I decided to change tack and try a different approach. That was when I sought out a trauma therapist and a more holistic path. At this time I was on Quetiapine (250mg at night, 50mg breakfast and 50mg lunchtime), 3g L-Tryptophan, 15mg Diazepam, 60mg Citalopram. Over the course of 3 years, I brought myself down off the meds in a very measured way, one at a time, titrating at what I thought was a slow pace. I managed to come off the Quetiapine, L-Tryptophan and Diazepam. I continued to experience severe somatic symptoms but could walk about a little, go into a bookshop briefly - not able to work or go out for a meal, or the cinema or anything like that. When I began reducing the Citalopram, my symptoms became seriously bad. They emerged approx. 2 – 3 months after reductions e.g. 60 > 50 > 40 beginning May 2017, resulted in severe, disabling symptoms by August: severe tremors, terrifying hyperarousal, unable to tolerate sounds at all, using alcohol when necessary literally to be able to tolerate them or walk when necessary. I made another reduction 40 > 35 > 30 > 25 > 20 from December to April 2018, at which point I became housebound and called the paramedics as I was experiencing states of terror, feeling as if I was about to die, unable to regulate my nervous system at all. I now know, how terribly and tragically misguided my reduction pacing was. I wish I could turn the clocks back. But I can't. Hence my presence here, and prayers that there is still hope that I might recover my health. The emergency services suggested I increase the Citalopram back up to 30mg, which I did - and then up to 35mg, 3 weeks later. By this stage, I was housebound, having violent seizure patterning (not seizures - I never lose consciousness), unable to tolerate the sound of using a telephone, unable to stand to wash up or make food. My therapist began visiting me in my home. At the time, she and I had been understanding what was happening as partly being a releasing of the trapped energy of the trauma of the ECT which I had when I was 29. Indeed, the seizure patterning/muscle spasms look very like this. And my therapist described what she believed was going on in Somatic Experiencing language of "overcoupling": effects of psychological trauma/stress from earlier life + ECT shock trauma + long term use of meds.....all contributing to a dysregulated nervous system. I still believe this to be the case. However, very sadly, my therapist reached the point where she felt unable to continue to support me and pointed me back towards psychiatry. This was utterly devastating to me. I had derived considerable strength and hope from believing I understood what was happening in my body, that I had agency over its process, and was resourced and motivated by this. Being advised that all that was left was to go back to psychiatry, felt like the final straw. I went into severe, suicidal depression. Since then, I have seen several more psychiatrists, 2 neurologists, one neuropsychiatrist. None of them acknowledge that there is any possibility that psychiatric medications are implicated in my somatic symptoms. They put them under "medically unexplained" or "functional neurological disorder". I had 5 weeks in another psychiatric hospital in December 2018 which was largely pointless as I could not bring myself to take further medications, except for the introduction of one, Pregabalin, but at a low dose (because I was looking ahead to having to withdraw off this too eventually, and cautious accordingly.) I am now staying with my parents, in Luxembourg because I am unable to manage on my own in my own home without carers. I am at the lowest point of my life. The depression is severe but largely "reactive", ie an understandable response to losing my world - my work, my community, my functionality and all that that now deprives me of. I am just surviving at the moment. I hope I can find a way ahead. I am new to this website. I wonder how I might best use it to seek support and guidance? I will list the medications I am currently taking: Citalopram 40mg Pregabalin 50mg @ 09.00, 25 mg @ 13.00, 25mg @ 22.00 Diazepam 2mg @ 09.00, 25mg @ 13.00, 25mg @ 19.00, 25 mg @ 22.00 Zopiclone 3.75mg: began tapering under advice of GP 10 days ago, reducing by 1/4 = cutting the pill in half and half again and taking 3/4. He suggested I taper by 1/4 every 2-3 weeks. I feel trapped in a Catch22: I am unable to function in the world as I am. My symptoms are prohibitive of most activities and restrict where I can be, even within my parents' home, as my sensitivity to sound is so great and I am unable to be standing for very long due to the tremors. I am due to see the GP again tomorrow to ask his advice. I do not have a psychiatrist here. I am not keen to see yet another psychiatrist unless this person understands the fight/flight/freeze response, believes in withdrawal syndromes and tapering. My despair lies in the fact that I am sadly not in a position to be tapering really until I have adequate functionality restored. But I don't know how to restore that, how to address the tremoring and sensitivity to sound. The advice I have had from psychiatrists is to increase the dose of Pregabalin to quell the tremors. I am currently on a sub-therapeutic dose. I am reluctant to do this as this will be yet another drug to come off (which holds risks of seizures through withdrawal). Does anybody here have anything they could suggest to help? I am only just beginning to try to understand what the effects might be, on my nervous system, of extensive use of the drugs I have been on in the past, and am currently on. In particular, Quetiapine (I was on 800mg in 2005 and reduced over a couple of years - I never had any psychosis; and again 2013 - 2016 at 300mg), Diazepam (30mg in 2013, now 8mg) and Citalopram (60 for many years, now 40mg). I don't know if everything my body is manifesting is an expression of a depletion of receptors throughout my body? I am doing an online course on the nervous system and understand the intricacy of it, and how every cell in our bodies is affected by nervous system dysregulation. What is the next step? How do I address the somatic symptoms, in particular sensitivity to sound and to gravity: my sympathetic nervous system is "turned up way too high" in response to my standing up = tremors How/where can I find a clinician to guide me? I am due to see a Functional Medicine practitioner next Thursday with a view to try trying to do something myself to help heal my system. Any thoughts on this? I am also acutely aware that my life situation is such that I feel insecure and at sea. So, I need to find a way to create a secure base for myself, professionals I trust, decide which country to live in to do this (I will probably be unable to live alone until/unless I can heal this)..... I understand now that my nervous system is picking up cues about safety all the time. And if my life situation is unstable, it will keep going into fight/flight/freeze in reaction to that too. So, I need to also do some internal work on finding safety in the midst of uncertainty. This is so challenging. I feel very grateful to have this space in which to share and hopefully help each other. Thank you.

Hi! I have a very long post on this forum under the introductory part but I would like to run a poll. Have you experienced muscle twitching called benign fasiculations? Tremors at rest? Facial grimacing? Any other dyskinesia/dystopia/ or tic? The next part: What medications were you on? Did this start shortly after starting the medication? Or did it start within a 2 month period after you stopped the medication? The purpose of this poll is for my own curiosity. Thank you for your time!

Hey Guys, I found some info online about a law firm that is looking for people to come forward who have incurred movement disorders from psych meds. I called the number and spoke to the law firm, and I can vouch that they are serious. They spoke with me for an hour and I am also sending them my medical paperwork. Be assured that steps forward ARE being taken. I was so pleasantly surprised at how seriously the law firm took me, and how kind they were. Here is the information for others who want to call. This is what I copied and pasted from online, and it includes the phone number to call: "Have you come down with a movement disorder from psych meds, whether they were prescribed to you on-label OR off-label? Did you come down with permanent or temporary dystonia or dyskinesia or akathisia or myoclonus from psych meds? Please join me and others who are working with a law firm to hold the pharma companies accountable. Call Grisham and Barnhardt at 434-293-2939. Ask to speak with partner attorneys Tyler or Addison, or with their assistant/paralegal Bethany. Please, we need ALL the victims to come forward, no matter how long ago this happened to you!"