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  1. 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.
  2. I'm having trouble with my eyes since a bad reaction to a steroid and also since coming of Prozac. My pupils have been smaller since coming off (I read that SSRI'S dilate, so they've probably been dilated for many years) and I've had blurry vision and just "different" vision since the steroid too. Kind of like having a permanent migraine. I feel like I have a hard time focusing. I'm sensitive to colors. Things look weird. Driving feels weird. Super sensitive to light and visuals. I went to eye doctor and of course they didn't find anything or do anything helpful. I have eye pain. I feel like my eyes are strained, muscles behind them have tremors too, and maybe aren't working right. And like I have a haze or veil or everything. I'm scared obviously and don't know what to do. Also facial tics and spasms seem to be getting worse, as well as other tremors.
  3. Good morning all, My name is Erica and I was taking Zoloft for over 20 years before recently tapering off due to side effects. My journey with Zoloft started with my PCP using it to control debilitating migraines. It ended with poisonous spider bites, and an infection causing the hospital to dose me with steroids. I had already been experiencing some side effects but I didn't know it and the steroid sent me over the top. I developed weakness, fatigue, OH, tremors, daily headaches, dizziness, and lost my mental focus all at once. I'm no longer taking Zoloft but I'm still feeling the wreckage it left behind. I'm now on an anti-seizure med for migraine prevention and a Parkinson's med to control my other symptoms. Official diagnosis is Neurological Tremor as of now, but its most likely Drug Induced Parkinsonism. It takes a Neuro to make that diagnosis and I haven't found a good one so far...the first 2 didn't even listen to my symptoms. This has been a terrible, frustrating journey for my family. Some days I can't think, can't work, can't drive, and can't hold onto anything. I'm only 42. This drug seriously messed up my life and I had no idea that could happen. Hoping to find and give support here. Thank you.
  4. I started Effexor (venflaxine) excuse my spelling 75mg and buspirone 7.5 mg on Wednesday last week. Friday night I had an adverse reaction. Skin burning, dizzy, tremors, rapid heart beat, dilated pupils, muscle stiffness, I’m sure there’s more I’m forgetting right now. I did not take the meds after Friday night. Now Thursday (4am) I’ve been having withdrawal symptoms. Tremors, anxiety, insomnia, no appetite. I see my pysch today at 130. I actually went to the hospital twice in the same day because I could not sleep, eat, or relax. I couldn’t go to work but I am going to try today. I was wondering if maybe Prozac or sertraline would help me ease these withdrawal symptoms or if anyone else has experienced this after on three days of being on meds!!!
  5. Hi my name is Bruno, I'm a 24 year old biology student from brazil so I apologise for my bad English. I'll try to make it short. So I started taking Lexapro for depression a month and 3 weeks ago. Everything was going well, besides the weird nightmares and weird toughts, Lexapro was working. When I reached 24th day of medication I woke up with a really bad ringing in both of my ears, I got scared and said to my doctor I want to stop cuz I fear the side effects. Since i was in a lower dose (10mg) he said I should take 5 mg for 5 days and then stop. I did that and in about 3 days off of medication my tinnitus got really low and I was feeling great again. 1 week out of medication I developed palatal myoclunus ( can't find anyone with this symptom) 2 weeks I developed eye twitching then 3 weeks out of Lexapro I started having eye floaters wish for me are not a big deal. The real problems started 1 month and 2 week out of meds, I got this really bad fellings on my body like eye twitching and twitchings all over my body not all the time but sometimes, also started having this sharp pains in my fingers and 2 days ago now 1 month and 3 week out of medication im getting tingling sensation on my face on my upper lip pain at the back of my ears and neck pain inside of my head but the thing that really scares me is my arm that has been shaking for 2 days now and and my hand fells week and numb. So to summarize all the symptoms I have to this day ( very low tinnitus , palatal myoclunus , eye twitching , eye floaters , pain in my fingers , arm weakness and tremors, jaw pain) and o forgot to say that my jaw fells like is slightly dislocating to the side. I know thats is a lot of stuff for someone that has been on meds for small period of time. Nobody belives me but I know that something is wrong with me and is not anxiety like my parents and psychologyst says. Please help me.
  6. Hi everyone. I'm here to get my 12 years old daughter whom we just weaned off of the last of 13 medications that failed to control her seizures. Although it's taken us 3 years to wean off all meds and we've dealt with and overcame withdrawals from most, this last one "Topomax" has been the worst and she's experiencing severe withdrawals from it. I need help understanding and identifying symptoms and mostly if anyone has suggestions in treating them please. She has constant and severe tremors all over her body. Insomnia. Nausea. Blurred vision or zoned out. She is non verbal at this point so these are symptoms that we can see. I'm sure there are others. Appreciate your input. Thank you.
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