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  1. I am new to this forum and wondering if anyone else has experienced prolonged withdrawal symptoms. I was put on 20mg Fluoxetine (Prozac) back in 1997 or so. I was prescribed this medication because I had trouble sleeping. This was at a time of increased stress when my young daughter was going through chemotherapy. I did not want this medication but was told that I needed to be treated for the stress. I would be monitored by lab testing to prove I was taking the drug , or lose medical insurance benefits. After taking one dose, I felt awful. I became jittery and started to feel anxious. My GP told me that this drug had absolutely NO side effects and that what I was experiencing was, in fact, my reaction to being under stress. He told me to take it at night to help me sleep. I felt like I was going out of my mind. I was so worked up that I asked to go to the emergency department. They gave me IV fluids. I said this drug is killing me. No one believed me. I made several more trips to the ER department with worsening side effects.I was treated for dehydration and sent home. I saw a psychiatrist at the Toronto Sick Children's Hospital where my daughter was being treated for Leukaemia. The psychiatrist emphatically told me and showed me his computer screen that fluoxetine had NO side effects. He said that the problem was entirely mine. I now weighed less than 90 pounds and was a shaking nervous wreak. I spoke to a pharmacist and explained my symptoms. He told me to get off the drug, but also cautioned me that he could lose his job for telling me that. He said it was terrible stuff and to get off of it. He also told me that it would be a horrible experience. I only took 11 pills…. That’s it! My life was changed forever! After the last dose that I took, I broke out in a high sweat, vomiting, and screaming to keep my mind. Thankfully, I was with a friend who drove me to the hospital. By the time he got me there, I was unconscious. I had full on serotonin syndrome. I have no idea what happened after that, but I woke up in intensive care. I was in one hospital and my daughter in another one. I quit that drug immediately and assumed that my problems would be over. Not so! My body was under siege for another several months during which time I had to figure out which foods would raise serotonin naturally and removed them from my diet. It got so that I was afraid to eat at all. This also contributed to my weight loss. I went down to about 80 pounds. I was a walking skeleton. At the same time, this single mum was trying to keep it together for my daughter who was fighting for her life. This drug robbed me of everything at a very crucial time. I thought that the fluoxetine would be out of my system soon and the nightmare would be over. Not so! Things got even worse. I remember praying through the bouts of suicidal thoughts, night terrors, panic attacks out of nowhere, tremors, speech difficulties, ataxia, insomnia, nausea ,headaches and tremendous pain and now being afraid to eat. Next came a new set of challenges... any drug that I was prescribed after the fluoxetine no matter what for, put me out of my mind and the same symptoms returned: akathesia, tremors, panic attacks,muscle jerking, feverish ,sweating...all heading towards milder serotonin syndrome. Now I couldn’t have any pain meds, antibiotics, vitamins, tylenol, or any freezing at the dentist.This was more than a nightmare! I got pneumonia several times and couldn't take any medication for it. I became ultra sensitive to hand creams, lotions, air fresheners, laundry detergent and perfumes. My eyesight deteriorated, my body ached with pain, my breathing was affected, my heart raced, I had uncontrollable tremors, my muscles ached, my head hurt,brain had electrical zaps and shocks, uncontrollable sweating, and now I was gaining weight. Remember the 80 pounds? My weight doubled! On a 5 ft frame, that is brutal! What I didn't realize was that I was still reacting to medications that interacted with fluoxetine or medications that raised serotonin. It took me years to figure this out. No one in the medical profession had any time to listen. No one cared. If this wasn't enough, as time went on, my body broke down even further. The ataxia became more evident and didn't resolve with rest. It became impossible to control my tongue and facial muscles and my body twisted out of shape. My legs were restless and I lost my ability to walk and talk properly. I became really weak. After another long battle with medical people, I was finally diagnosed with generalized dystonia and offered a wheelchair. On top of that, I was diagnosed with cluster headaches. The headaches were so bad that I resorted to packing my head in ice. I got a prescription for oxygen to help with that. At this point, I had no choice but to quit my job. I was in bed nearly 80% of the time because I just couldn't function either with the pain or because I couldn't get my body to move. All of the tests that I had done revealed absolutely nothing. A botched spinal tap left me with a cerebral spinal leak for nearly four months. This also left me partially deaf and with a loss of range of vision. After all of that, it revealed nothing! Every doctor I saw, I told the same story... that all of this happened after I took the fluoxetine. They all said that it was impossible. I was subjected to countless lab tests , MRI's, CT scans, sent to specialists, specialty clinics, neurologists, spinal taps... nothing showed. My symptoms were dismissed. I started a really wholesome diet and tried on my own to keep my body working with massage therapy, chiropractic and physio. I had to fight for the right to do that. I needed a doctor slip and they refused to “entertain my game”. I went without sick leave, because the doctor refused to sign my paperwork. Said that after I went bankrupt, I would go back to work and give up the wheelchair act! I lived on Visa for another year…. And took in boarders. I spent the rest of my time devoted to research; SSRI’s, the brain, and anything I could find on SSRI side effects.Very little could be found. I researched everything down to the molecular level including pharmacogenetics, pharmacokinetics, biochemistry, you name it! No one knew anything about this! No papers published on it. I knew that there were more people who had been through what I had been through. Maybe all of the people who had serotonin syndrome died? Or committed suicide? Surely, this wasn’t my punishment for surviving this hell on earth. I paid for a pharmacogenetic DNA test in the USA just to prove that there was such a thing as drug sensitivity here in Canada. I also wanted to know how my body metabolized drugs, namely fluoxetine.When the same testing became available in Canada, I paid for a second DNA test for pharmacogenetics. This was done in 2019. I now had some kind of tangible proof of drug sensitivity. So far this is my only hope to prove that something is wrong with my system. I got a medic alert bracelet to caution prescribing drugs in the unfortunate event that I may be unconscious and not able to advocate for myself.I want to stay alive. Let’s realize the timeline. It is now 2021 and this has been my journey. It has been 24 years since my hell began. After a lot of hard work, and some recovery, I have been able to get out of the wheelchair in 2019. The dystonia and tardive dyskinesia are less pronounced and the headaches have lessened. I still experience brain zaps. I am still not able to take any medication. I was sent for a CT scan in 2019 and reacted to the dye. I had a scope done in early 2020 and reacted violently to the lidocaine. I had tremors and serotonin syndrome like effects lasting more than 7 days. Last month, I had to take ventolin for a breathing test which also made me sick. I told the technician over and over that I could not take that drug. He needed to see for himself. Again, I get to be the guinea pig to prove how awful this is. My heart pounded and raced so bad that I thought I was going to have a heart attack. My chest nearly exploded with pain that was shooting down my arm and up into my jaw. It made my breathing erratic and I was in obvious distress. I know that this greatly alarmed the technician, but the ignored this and send me home. Just get rid of the patient!All of the old familiar symptoms returned and lasted for another 7 days or so. I am so disheartened! Thinking enough time had passed, I tried some alternative therapy last January. This therapy was to work on electrical impulses in the body and meant to help with the pain. It did help with pain but it also riled up the same old symptoms. Here I am again suffering the same side effects as if I were on fluoxetine. So far, two months of side effects that just showed up out of nowhere. Heart racing, akathesia, tremors, watching my food again, anxiety, and insomnia. Pure hell.. Does this ever end? The last 24 years have been the worst years of my life. Can anyone shed some light? I am looking for some kind of documentation or published paper that long term side effects do exist. I want to put it in with my medical records. I also want to find a way to get better, naturally. May God’s grace find the way for me and many others.
  2. Hi Friends, I went off of trazadone 5.5 months ago after 15 years of use for insomnia, and have been suffering from protracted withdrawal ever since. The most debilitating symptom is severe depression that often manifests physically as pain in my heart, and a myriad of new drug sensitivities. I have a few questions about other's experience's and/or recommendations. · Has anyone had success with st. john's wort, 5 htp, homeopathy, or other approaches? · Will attempting to treat the symptoms with herbs, or ssris prolong the period of withdrawal? · Does anyone understand the mechanism behind the symptoms of protracted withdrawal coming in waves? My preference would of course be to get through this without having to medicate the symptoms, but there are times when the depression feels so intolerable, I need to have another option for my own safety (I've been very proactive of finding alternative methods to deal with the depression, ie, meditation, exercise, support, etc. but they have a limited effect). I have read that in rare cases, protracted withdrawal can last years or be indefinite. Given that I was on trazadone for 15 years, and I tapered much too quickly, I imagine mine may be a slow process. I have included a detailed history of my experience to give context for anyone who is interested. Thank you. HISTORY: 15 years ago, at the age of 23, I went through a healing crisis of sorts, dealing with issues of childhood trauma. I went to a treatment center for depression, where I was put on a number of different drugs (as best I can remember: celexa, risperdal, trazadone, vistaril, and one or two others). The treatment center was beneficial for me - I did intensive therapy, and worked very hard on my own healing. Within a year or two of returning, I tapered off all of the mediations I'd been put on, with the exception of trazadone. I had had insomnia for most of my life and was under the impression that its only purpose was to treat sleeplessness. I was unaware it was an antidepressant for the next 15 years, until after I began the tapering process. Even my naturopath continued to prescribe it without question. Over the last 15 years, I healed myself through intensive therapy, even becoming a therapist myself. I build a successful business in a field I felt passionate about, combining therapy with an artistic discipline. For years I contemplated getting off the trazadone but didn't feel like I could risk not sleeping with my demanding career. A year ago, I decided to take sabbatical and travel the world, starting with an ayurvedic cleanse program in India. A couple years prior, I started to have the creeping suspicion that my medications (benadryl, alegra-D, singular, trazadone) were creating more symptoms than they were treating, and so began the withdrawal process before leaving for India. At first I cut my trazadone from 150mg to 75mg and cut out the Benadryl completely. I struggled with sleep, but more significantly, horrible nausea for about 6 months. I attributed the sleep to the trazadone, but the nausea to the Benadryl (now I'm not so sure that was accurate - it may have been the large reduction of trazadone). Luckily, I was able to treat the nausea with small doses of medical marijuana. I went off my other allergy mediations much more easily - with a week to two of acute symptoms that afterwards subsided completely. When I began my cleanse in India, I tapered the trazadone from 75mg to 0 in a matter of 5 weeks. Way to fast given what I now know, but again, at the time, I had no idea what I was dealing with. Each time I would decrease, I would have acute withdrawal symptoms for about a week which would then subside; mainly night terrors, sleeplessness, and irritability. For the next three months I only managed between 3-5 hrs of sleep a night, but although it was frustrating, it was manageable, given that I was spending hours each day mediating. My nausea went away after I tapered from 75mg to 50mg but for the first two weeks, I suffered from persistent sexual arousal disorder (pgad, the female version of priapism) - a nightmare which caused incredible discomfort as I was barely able to pee for two weeks. Luckily, I figured out it was due to the trazadone withdrawal after some research. That experience only made me more determined to get it out of my system, and quickly. The PGAD disappeared when I tapered from 50 to 25mg. After my final dosage (I had basically just been taking a crumb for a week), I began experiencing the most horrific emotional pain I have ever experienced. I often find myself at a loss for how to describe it as it's never felt like typical depression. It was something like a combination of an ongoing panic attack with a grief stricken/shock-like feeling - like when you learn that your beloved has died and it knocks the wind out of you. I felt a palpable heart pain -though it was clearly emotional in nature. It is not the first time I've felt that heart pain, and may just be how my body metabolizes severe depression - but it was the most extreme experience I've had, and totally devoid of content. At the time, I had never heard of protracted withdrawal and so assumed I was having some kind of spiritual crisis. I was staying at an ashram, and so spent many hours in meditation. The symptoms gradually got a bit better over the first month, but then came back with a vengeance, though usually with some breaks of relief during each day when the heart pain would subside briefly and I'd get a bit of perspective. The odd thing was that this 'depression' came seemingly out of the blue at a period in my life where I felt stronger and happier than I'd ever been before. After some research, and consulting with a colleague who specializes in psychiatric drug withdrawal, I realized I could be experiencing protracted withdrawal. I tried to stay in India as long as possible to heal myself there, hoping it would pass quickly and I could continue my travels, but at some point the pain became too intolerable and I decided to come back to the States where I would have more resources to treat the symptoms (or so I thought). I decided to stay with my family in the midwest while I figure this out, and enlisted the help of a wonderful holistic psychiatrist, who luckily recognized the symptoms (at that time - depression, arthritis, and gum pain) as protracted withdrawal. I first tried supplements, homeopathy, and st. john's wort, in an attempt to stay off SSRIs. The St. John's Wort did provide some relief after week 5, but I was experiencing extreme fatigue and rapid hair loss. My psychiatrist suggested I try a small dose of prosaic after weaning off the SJW in order to get through the protracted withdrawal. Over the next month I tried 4 different SSRIs in miniscule doses (Prozac, lexapro, celexa, wellbutrin) and had horrible adverse reactions to all - sleeplessness, panic, wired/restless leg syndrome, loss of appetite, migraines, nausea, diarrhea. I had to take Clonazepam (luckily only one dose for each attempt at a new SSRI) to counter the reactions. Next we tried SAM-E at 50mg/day. I had some mild reactions, but after 6 days, felt wonderful - depression had subsided though I was a bit wired, but on day 7, I ended up with the same reactions as the other SSRIs and had to discontinue. Interestingly, I've taken almost all of these medications in the past without issue. I was given zoloft twice during my life (once for chronic mononucleosis when I was a teenager and for two years for 12 days out of every month for endometriosis). I had no problem on the drugs, but did experience acute withdrawal symptoms when I was going on and off the zoloft each month. I had horrible dizziness, and only after thousands of dollars of mris and other tests did I realize from my own research that it was caused by my body going into withdrawal for two weeks of each month. A few weeks after my final dose however, I was fine. I swore never to touch another antidepressant - totally unaware that trazadone was one! I also tried SAM-E at one point when I was experiencing depression after a total hysterectomy (for the endometriosis). It didn't help but it also didn't have any adverse effects at the time. The depression subsided when we were able to get my estrogen levels back on track. My psychiatrist works in cooperative clinic, so together we saw the nutritionist there, who tested me for deficiencies and then started me on a regiment of supplements. As far as I can tell, I have not had any adverse reactions to the supplements, but have not felt improvement from them either. For the past three months I have been on a very strict diet: no grains, no dairy, no sugars, no caffeine, no alcohol, and no meat (my choice). I basically just eat vegetables, lentils, lots of fish, and a few nuts. I've also been adamant about making sure I get 1-3 hours of mild to moderate exercise/day. This seems to be the one thing that routinely brings me a bit of relief, though only while I'm walking, moving, etc. I am lucky to have a wonderful support system and minimal external stressors in my life at the moment. I have tried my best to keep a positive attitude and am often successful, though I continue to get knocked out by the intensity of the heart pain when it arises, even with my myriad of coping strategies. Having tried so many ssris, and then the SAM-E (last dose was 12 days ago), it's hard to know what my norm off of meds will be - if there is one.
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