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Hi everyone! First of all, English is not my native tongue and this is the first post I have ever written on a forum, so please bear with me. Writing this success story and sharing it with you have been a dream of mine for a long time. I never thought I would reach this milestone. I have mixed feelings posting this, as I know some of you might find it discouraging. If you are new to withdrawal, please stop reading here. This is a post for those of you who have been suffering badly for years and need proof that it's possible to recover even after a very long time. There is a brief summary in the end of this post if you can't or don't want to read the whole story. I also listed my withdrawal symptoms. Background I was on Paxil for 8,5 years (15-30 mg) and I made several quick tapers and CTs from low doses during the years. I took my last dose 11 years ago after a fairly slow taper (15 months) I started Paxil when I was 19 after having struggled with anxiety/emotional crisis for a few months. I was very skeptical of psychiatric drugs but my parents wanted me to try and I eventually got desperate enough to give in. I could just quit if it didn't help, couldn't I? I'm not going to describe in detail the long, sad and all too familiar story of what happened next. I tried to quit after five months, developed a delayed wd with intrusive thoughts and severe anxiety, and was told I was close to becoming psychotic. I gave up after half a year of the worst suffering I had ever experienced, and reinstated. I didn't believe in the broken brain-myth but I assumed my emotional problems must be far worse than I first thought and that I needed to solve those problems before coming off. A few years later I tried and failed again, same story but this time I also had severe physical symptoms. And then, after I had lost hope about myself and thinking I would be dead by now without the pills, I raised the dose from 20 mg to 30 mg, became euphoric and saw myself change into a new, much ”happier” person. I deteriorated quickly the following years, and spent more and more of my time in bed with muscle weakness and pain. I started having internal bleedings in my hands that no one could explain. I was somehow too drugged to really understand how serious my symptoms were. By now I had a decent list of ”psychiatric disorders” and had been on disability for years. I was considered a chronic case that should medicate for life, something I refused to accept. I would probably have kept deteriorating and died if I hadn't come across a forum for people struggling to quit prescription drugs. I finally understood what had happened to me. I was in the middle of my third serious attempt to quit, so I just continued to taper. I thought I would be ok if I just did a slow enough taper. I wasn't. Withdrawal hell I can go on and on and list my symptoms (see end of post) but as you all know, these lists don't do justice to the suffering. At 5 mg I started vomiting and it didn't stop. My main struggle during the following 16 months was to keep myself alive, physically. I was underweight and dehydrated, more or less completely bedridden, so nauseous and anxious that I lived minute by minute. Me and my fiancée had no support except the forum I found. I was too ill to write myself, but my fiancée did. (Mixter, if you are reading this: I honestly don't know if I would have made it without your knowledge and support. I am forever grateful.) Some people say that it's terrifying not knowing when the wd torture will end, and I agree. But the worst part for me was that I had lost hope that I could live without Paxil. I was afraid that even if I made it through the withdrawal I would still be tormented by my own mind. I wanted to live so badly, and I was afraid that I would eventually have to end my life to end the suffering. I remember sitting in my bed rocking back and forth and vomiting, or crawling around on the floor with an unbearable sense of impending doom, convinced I would have to die. The only reason I didn't raise the dose again when the wd got really bad was that my fiancée threatened to leave me if I did and I didn't want to live without her. The worst symptom I had is difficult to explain, and makes no sense to me today. I developed a severe phobia towards people, also my fiancée. I missed her so much but I couldn't handle being in the same room. I longed for people, but their presence triggered intense feelings of terror, unlike anything I had ever experienced. The intrusive thoughts, "ocd" and my extreme sensory sensitivity made it worse, but cannot completely explain the terror I felt. I was afraid that this was me without the drug and that I would have to live the rest of my life in complete isolation. This is hard for me to write about and I still have very little hope that anyone will understand what it was like to live with this intense terror for years. Then, about 11 months after my last dose, I had a few better weeks. I was still bedridden and the majority of my symptoms had not improved, but I remember being able to listen to music and eating solid food. I felt how reality and my personality was coming back, and I realised the world around me looked and felt completely different off Paxil. I started to feel glimmers of hope. Shortly after, my fiancée left me. I lost the person I loved the most, I lost my dog, I lost my home. I left without my belongings, too ill to pack, and spent the following nightmarish three years in my parents small guest room in the other end of the country, still far too ill to take care of myself. I was no longer in acute withdrawal, but many symptoms had not improved. I had stopped vomiting but the muscle weakness was still so severe that I couldn't sit up at a table and eat. I struggled with extreme sensory sensitivity, especially movements. I had to eat with my eyes closed as it was unbearable to see my hands move. I was nauseous, paranoid and hallucinating. 1,5 years off I estimated that I had about 0,2 % of my normal physical and cognitive abilities, judged from what I could and couldn't do compared to before Paxil. (automatic functions like heartbeats, breathing and so on not included.) Recovery I have to say that I saw only minor improvements the first years. 2,5 years after my last dose I remember thinking that I now had 2% of my physical and cognitive abilities, which after all, I kept telling myself, was an improvement with far more than 100% since the year before. The years went by. I never really had any windows. My improvements were very gradual, so slow that I had to wait at least six month before I felt certain that there had been an improvement at all. There are exceptions to this rule. A few symptoms cleared up rapidly and more or less completely. The symptom I feared the most, the horrible intrusive thoughts that I suffered the first times I tried to quit, was ironically one of the first symptoms to disappear. After about 3 years, I was able to be in the same room as another human being without fear. Most symptoms improved slightly, became worse again, got better, became worse again, until one day they didn't get as bad as before. And so on. The turning point It's hard to say when exactly I reached the point where I felt that I wouldn't have to kill myself even if I didn't continue to improve, but I believe it was in 2014, five years after my last dose. I would say I literally lived minute by minute during the first three of those five years, with few exceptions. I don't understand today how it was possible for me to live through that time but somehow it was. I wish I could say that I was brave and optimistic, but I wasn't. I was scared and alone. The thing I had that saved me was that I really wanted to live, and that I was lucky enough not to experience depression. I'm also a person with a lot of grit and with a somewhat autistic ability to thrive in complete solitude which I believe saved my sanity (well, whatever was left) those years when I was too ill to socialise with anyone. I remember thinking that I wished I could have been sentenced to five or ten years in prison instead, just to know that I would be free one day. I no longer feel that way. Addiction Most people don't experience this, but some of us do and I think it's important to talk about. I spent a lot of my time in recovery longing back to my Paxil-years. My life on Paxil may have been miserable in many ways‚ with self harm (I occasionally cut myself), aggression and lack of judgement, but I enjoyed being euphoric. Coming back to reality and getting used to having normal feelings again was sometimes as hard as managing the physical torture. I felt as if I had lost the beautiful world I had lived in, that I had thought was reality, and now was forced to live in a world that I recognised from growing up but now longer belonged to. Everything looked and felt so different, and I felt like a complete stranger here. I longed ”home” and had strong cravings at times and the cravings triggered some of my withdrawal symptoms, and that continued to be a big and somewhat embarrassing problem for several years. (The cravings are not gone but they are much less frekvent now) I wasn't consciously abusing Paxil, but I had built my whole life as an adult on a drug and created a fantasy-world where I could enjoy things I used to find boring, like socialising, or watching series, or other perfectly normal activities that just isn't my thing. Where I no longer felt alienated and different, where I no longer hated society, where I either was euphoric from increasing the dose, or hypomanic after tapering, and as soon as either the euphoria or hypomania was wearing off I just increased or decreased the dose, fooling myself than I was trying to quit when I was no longer even trying. The hardest part of going through withdrawal was that I knew deep down that my fantasy-world would fall apart, and it turned out I wasn't really ready to let go. I just wanted back, desperately. I had to be dragged out against my will until I was completely off Paxil and could think more clearly. I owe my life to my ex fiancée but it was a very cruel process at times. It’s hard to explain how you can love a drug that you know has ruined your life completely, but that was how I felt. It was like a once wonderful relationship that had turned abusive. When you realise what is happening you are already to weak to leave. It dosen't help that you know your loved one will kill you if you stay. I often felt like two different persons in one during recovery. The memory of Paxil-me that I still felt was the real me, and real me who I had to get to know again. It took about 7 years until I could accept that Paxil-me was gone for good. Looking at photos of Paxil-me today is more like looking at a younger sister, with a very different personality than mine, that tragically and unexpectedly died at age 28. I have stopped crying over her, but I keep a few of her belongings in a box as a memory. It breaks my heart every time people claim SSRI/SNRI can’t cause addiction. It may be rare, but I'm certainly not the only one. I guess those of us that have experienced this need to be more open about it but it's hard. Choosing reality over drugs was a question of life or death for me for a very long time, and the most difficult part of my recovery. It's the loneliest feeling, knowing that I might have to live the rest of my life unable to explain to people what I have been through. I fear that the most difficult time in my life will never be understood for what it was. Some advice regarding muscle weakness To all of you who have been suffering from debilitating muscle weakness for years, with little or no improvement, don't give up. This symptom was one of the most persistent for me and I remember feeling like my arms and legs were literally dead. I felt like I was damaged for life. I had no windows, although I had days that were worse than others. I know how it feels to be bedridden for years, locked up in your own personal prison, unable to participate in anything or do anything, even unable to write on a forum like this. But please don't give up. I finally did recover, and so can you. Try to remember what it was like being able to stand up normally, no matter how painful it is to remember what you have lost. Try to visualise yourself being able to run and jump, help your brain remember what it was like… When you finally start to see improvement, please be aware that you have probably lost most of your muscle mass and it will take time to regain it, and exercise is the only way to do that. It's not fair, but it will probably take a few years of hard work if you have been bedridden for years and developed severe back- and neck problems like I had. Even taking a walk may be very difficult, but don't let that discourage you. Try exercising in water if you have recovered enough to leave your bed. The water will carry your bodyweight and offer you some resistance. I strongly believe that exercise helps to heal brain damage. Today, I am more fit than most people my age, but it has been a very slow and gradual process. On year 4 I was able to increase my walks from five minutes, to ten. The next year from ten to fifteen, and so on …Walking have been especially hard for me and I'm not back to normal, but I have been able to walk 26 000 steps in one single day, which I think is amazing. Exercise made me worse in the beginning but I slowly got used to it and I never experience any bad reactions now days. Keep trying. A few words on diet You can't cure protracted withdrawal with a healthy diet, but it might speed up your recovery. I can't make a double blind study on myself, but I saw improvements in mood, cognitive abilities and speed of recovery after switching to a raw vegan diet in 2014. I do believe it makes my mind clearer and it makes me happier as well. If you want to try this diet, make sure to take natural (not synthetic) b12 and d3 supplements. Also try omega3 from algae instead of fish. My life today I celebrated 11 years off Paxil this spring. I lost 8,5 years of my life to Paxil, and another 10 years to recovery. Was quitting worth all the suffering? Definitely yes. Am I 100% recovered? No, I'm not, but I'm getting closer. I still struggle with some muscle weakness and cognitive problems. Walking still feels weird at times. I have a bad back and muscle twitches. Some sensitivity to light, sound and smell has remained, but it's very mild. The only symptoms that appears to be permanent are a few that resembles HPPS HPPD. My visual perceptions are still slightly distorted, but no where near what I experienced on Paxil. ( mod note- HPPD is an acronym for hallucinogenic- persisting perception disorder) I wondered for a long time if my lingering psychotic symptoms was wd or if the experience simply drove me mad, but I believe it was wd as hallucinations started shortly after my last dose and became more and more rare and ”mild” during the years (from occasional full blown visual hallucinations with eyes wide open, to waking up from sleep realising I'm hallucinating) I stopped panicking over hidden cameras and spys several years ago but I still struggle with interpersonal paranoia at times, which I actually find more difficult to deal with because it's more subtle and harder to keep at an arms length. This has improved a lot the last years though. This may seem depressing but it's not that bad. I would say I'm more than 95 % recovered and I'm staying hopeful that I will regain all of my former cognitive abilities, the only symptom that still makes me sad at times. (My problems are no longer noticeable to others, but I notice them.) I can live with back pain and a dash of madness if I have to. I even miss my visual hallucinations, the only symtom I actually enjoyed as they gave me a much needed break from reality. They were incredible beautiful too. My emotional life My personality came back to a large extent after 4,5 years, but my feelings started coming back much earlier. I regained an ability to feel ”real” emotions after about 1 year, although I can't say for sure whether I am 100% recovered or not as I don't remember what it used to be like. I do feel intense happiness and a wide range of other emotions, but I sometimes feel detached from them and from other people. I have a hard time relating to others, they seem ”overly emotional” and appears to be ”upset over nothing”. I do struggle a lot with empathy because of this. I’m sometimes puzzled over how I function on a social and emotional level now days, but whether this is my personality as an adult, the result of years of isolation/torture or Paxil itself is hard to tell. To be fair, I did have these tendencies before Paxil but these traits are much more pronounced now. Or maybe I just have a hard time taking my armour off. There were not much room for emotional needs during wd. Being a logic-driven observer was the only way I could handle the situation as I couldn’t trust which emotions was real or wd/psychosis. This is an incredible useful strategy while managing wd but I feel that I would like to become ”human” again. Just not sure how to do it as I more and more have come to believe that emotional reactions are a choice. This also means that I don't really know what to feel about everything I went through, or how to process the whole experience on an emotional level, and my attempts to figure it out with logic has failed for very obvious reasons. The happy end is just the beginning A few people I know of who were healthy and happy while I was in wd hell, have now died in cancer or become ill with no hope of recovery. I have learnt that although I have gone through a difficult time, I am also very lucky. I may no longer be gasping in awe during my short walks, crying of joy and gratitude over being alive and being able to see the birds fly, but that gratitude is always with me. The last 4-5 years have also taught me that you don't need to be completely recovered to live a deeply meaningful and happy life. I can't say that life is back to normal, because I was I teenager last time I was here. It was long ago in another life. Things will never be like that again. But I'm reaching a point where I feel like I don't regret what has been. I'm hoping for a long life and it's far too early to tell whether this journey was a bad life experience or a good and useful one. If I could choose a soundtrack for this post, then it would be Ordinary world by Duran Duran: "What has happened to it all? Crazy, some'd say Where is the life that I recognize? Gone away But I won't cry for yesterday There's an ordinary world Somehow I have to find And as I try to make my way To the ordinary world I will learn to survive" You will learn to survive too. No matter how hopeless things may seem right now, just keep going. You only have to go through this once, and your future self will be so, so grateful that you didn't give in. Being free again and being yourself is worth waiting for, even if it takes a decade, or more. One day you will be writing your own success story. I know you will. Thanks for reading this long post. You can ask me anything you want, I'm happy to help. Aurorax --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Summary and milestones: 2001: Starts Paxil at age 19. 2001-2004: Two failed attempts to quit. 2005: Increases dose to 30 mg. Close ones concerned about me being all wired up and lacking judgement. 2006: Life is falling apart: my carrier, my health, my relationships, my cognitive abilities. My plan to taper over two years is not going well, there always seems to be a reason to raise the dose again. 2007: Increases the dose to 30 mg again but it’s no longer ”working”. I consider increasing the dose to 40 mg but that would be like saying I'm worse than ever and that's a frightening thought. 2008: Third attempt to quit. Finally realising that my ”illness” is side effects and withdrawal symptoms. Decides to make a slow taper. 2009, April: Last dose of Paxil. End of 2008 to beginning of 2010: Lost in withdrawal hell, struggling to keep myself alive. Loses my spouse, my dog and my home. 2010-2012: Still minute by minute most of the time. Bedridden. 2013: 4 years off. I have a home of my own again but struggle with household chores. Too ill to go to the grocery store. Too ill to sit up in a chair. Too ill to do anything else than surviving. Bedridden most of the time. Mourns having been gone for so many years, feels like I came back too late. No one remembers who I am off Paxil, not my parents, not my siblings. Longing back to Paxil-land. 2014: Still spend a lot of time resting in bed. Having a home is manageable but feels like running a small business. Nausea is almost gone. I can read books, browse the internet, write in my diary. I realise that I have survived coming off Paxil. Still a lot of physical symtoms but I’m happy for the first time off Paxil. I can live without drugs! 2015: I'm starting to realise the extent of the damage done by Paxil and the wd experience regarding my personality and emotional life. I no longer feel ”human”. I feel disconnected from everyone, empathy nearly gone. I feel like nothing can really bother me as long as my or others life aren't threatened. 2016- 2017: Year 7-8. I continue to improve. 2018: I have recovered enough to return to the town I had to leave, and start my new life. I don't know anyone here but it dosen't matter, I feel no need for friends. No problems taking care of household or go shopping for the things I need. I feel lika an animal released from its cage. I'm really happy. 2019: Celebrates 10 years off. Working part time from home, self employed. I can sit up in a chair without pain. I eat out, I go to the movie theatre, I travel overseas for the first time. I go to gym classes. It stills feels unreal that the person that is running with high knees, doing burpees and lifting heavy barbells is me. 2020: Life is no longer about recovery. There is so much I wan't to do that I don't even know where to start. I sometimes feel like a young adult making plans for the future. I'm less on guard and my ability to feel empathy is improving. Things that happens to me and other people have an emotional impact on me again. I recently decided to end my lone wolf lifestyle and have just found my first friends here. Feels like I'm in the beginning of a big adventure and can't wait to see what will happen next. ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Symptoms are 100% resolved unless otherwise stated: Physical: Air hunger Arrhythmia (Improved but not resolved) Blurred vision Brain zaps Burning sensation in skin Chilling sensation in legs Convulsions Diarrea Digestive system ”shutting down”, unable to absorb water for 1-2 days during worst part of wd Difficulty swallowing Difficulty walking (Still feels a bit weird) Dizziness Dry eyes Exhaustion Exuding small, round wounds, mainly on my back but also arms, chest, head, face (Not from self harm or scratching) Fatigue Feeling of electricity running through my body Feels like hands and arms are gone Feels like muscles are melting (Various other painful or unpleasant sensations all over my body that I don't bother to list) Fever Flashing blue lights inside my head Flu like symptoms Fluid running from nose and mouth Freezing Headache Heart palpitations Heart racing when I’m trying to stand up on my feet Internal bleedings Involuntary movements in jaw and feet, usually when falling asleep or waking up from sleep Itching Legs kicking Loss of appetite Muscle cramps Muscle pain Muscles shaking Muscle twitching (Still have this a few times a day) Muscle tension (Greatly improved but still have this. Could be many other reasons for this though) Muscle weakness/low muscle tone (95% resolved, still comes and goes in waves) Not able to eat solid food Not able to eat fluid food Nausea, very intense and relentless for years Numbness (Still a bit numb in my toes) Out of breath Pain in stomach and chest Passing out Poor balance Poor coordination Pressure over head Restless legs Sensitivity to light, sound, motion, smell (not completely resolved but very mild) Sensation of insects crawling over my skin Shaking Shortness of breath Slurred speech Sounds echoing in head Stress intolerance Sweating Temporary hearing loss Tinnitus (Greatly improved but still there) Vomiting Weight loss Weird attacks/blackouts, not sure what this was. Seizures? First one had me crawling on the floor, my visual field was rotating back and forth and I was vomiting. Second I felt like my foot was stuck to the floor while strong electric current was running through my leg, woke up in bed later after blackout. Whole body jerks Whole body suddenly numb, can't walk Zaps in jaw and legs (still have occasional mild leg zaps) Distorted visual perception: These resembles HPPT HPPD and seem to be permanent with no improvement last years. It's very mild, except the halos (I have had my eyes checked) No prior use of hallucinogens/street drugs. Floaters (Improved) Halos (Some improvement) Seeing sparkling lights (Improved) Things moving in the corner of my eyes (Improved) Things moving in weird ways (Resolved) Trails (Improved) Visual snow (Resolved) World stills looks/feels a bit weird in a way that reminds me of ”Paxil-land” but not near as intense. This comes and goes too) Cognitive: Brain fog, it literally took me half a day to write a few sentences on a postcard. (95% resolved) Confusion, like having to think to remember whether its winter or summer right now Difficulty finding words Difficulty speaking Difficulty understanding speech Disorganised and slow speech Exaggerated three-dimensionality (Still experience this when reminded of wd-hell. Not sure this is a wd-symptom, feels more like dissociation related to the trauma) Feeling drunk in an unpleasant way Feeling like I have lost my intelligence (Still not sure if I’m 100% recovered) Impaired memory Phrases repeating themselves in head, random words and images popping up out of nowhere Panic attacks or nausea while trying to read Poor concentration, could take me half an hour to read a page in a book. Used to be a very quick reader (95% resolved) Unable to process information Unable to se TV/watch movies Emotional: Aggression Akathisia (Most likely resolved. Still pacing and moving feet and hands a lot, but the intense inner torment is gone. Maybe I'm just a fidgety person) Anxiety Crying spells Delusions Drug cravings (Still happens if I'm triggered) Feeling of impending doom Hallucinations, mainly visual Hearing ”silent” voices while resting. Not auditory hallucinations, but not ”my own” thoughts. Usually incoherent and absurd phrases. Always different ”people”. Harming self Harming others (hitting, biting) Helplessness Homicidal ideation Hopelessness Hypomania Insomnia Intrusive thoughts Irritability Mood swings Nervousness (95% resolved) Nightmares and dreams about craving drugs ”Ocd” (Improved but not resolved. I had tendencies before Paxil so could be my personality.) Panic Paranoia (Still experience mild paranoia occasionally) Phobia towards people Psychotic break with reality Rage Ruminating Screaming Strange ”panic attacks”, mostly during night Suicidal ideation Terror Waking up crying/screaming/hitting/kicking (Still happens a few times a year) Walls bending
RobbieP posted a topic in Introductions and updatesHi, I was put on mirtazapine to help with some health anxiety and insomnia i was experiencing and started noticing increased floaters a couple of weeks after starting and visual snow (lots of tiny fast moving dots when looking at the sky. This didnt improve and after 10 weeks my doctors put me up to 30mg. After 2 weeks on 30mg I then started noticing other visual stuff - palinopsia (after images - I can look at the google logo for a split second, look at a blank part of the screen and I see it again in negative for a few seconds), ocsillopsia (striped patterns start to vibrate if I look at them for a few seconds) etc - so went back down to 15mg. I then started getting frequent muscle twitching/tremors (withdrawal?) so after 4 days on 15mg the doctor said to stop taking them altogether and try sertraline! Had the usual hot flashes, crazy bad anxiety, headache, insomnia etc. After a week the withdrawals subsided a lot but the twitching remained so I went back on 15mg in the hope that it would stop. I'm now a month later, tapered down to 7.5 in the hope that the visual stuff would subside but if anything it has got worse and the twitching still persists 😞 Just wondering if anyone has actually recovered from the visual stuff? I dont know whether I should stick on 7.5 for a while to try and stabilise a bit more to stop the twitching or whether I should be getting off them altogether quickly because of the visual disturbances?? I really dont know what to do or where to turn to and the visual stuff (and twitching) is really scaring me!