Aurorax: Severe protracted Paxil withdrawal - Finally free!

[Aurorax]

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

 

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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.

 

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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

 

Edited September 22, 2020 by manymoretodays
HpPS, HPPT to HPPD, mod note in purple, members request after editing time was over

[manymoretodays]

Welcome Aurorax!

Beautifully done and written!

And welcome aboard the mighty survivingantidepressants ship and beach as well. 

 

All my best, Love, peace, continued healing, and growth

!!!!!!!! ❤️❤️❤️❤️

moderator manymoretodays

[Pina]

Hello, 

 

thanks for your report. You've done a greatful job. Congratulation.

 

Best wishes,

Pina 

[mooki24]

Amazing story. I read every single word. You have brilliant patience and determination. Congratulations and thanks for sharing.

[Readytoheal]

Congratulations!! I'm so proud you stayed the course and healed. This is truly an encouragement to so many others. 

 

Thank you for sharing. 

[Gridley]

Thank you for sharing your story.  You are a remarkable person.

[Frogie]

Thank you for sharing your journey.

Continued healing to you!

Frogie xx

[TurkeyCold]

Hello Aurorax, 

 

thank you very much for your detailed, honest and heart-touching report. There is so much familiar to me: the age, the symptoms and your final contemplation. What a great success it is that you have made it!

 

I wish you the very best for the rest of your life ☺️

 

Cornelius

[miomio]

Concrats and thanks  for your Story

much needed for many !

 

Where in Scandinavia are u from ?

[Aurorax]

 

@manymoretodays @Pina @mooki24 @Readytoheal @Gridley @Frogie @TurkeyCold @miomio

 

Thanks for taking the time to read my long story. Your well wishes and kind words means a lot to me!

My best wishes to all of you.

 

Aurorax

[Aurorax]

@miomio Thanks again for your kind words! I don't want to disclose my country, but I live in southern Scandinavia.

 

----------

 

I know that some people on this forum don't feel comfortable writing in english, especially not during withdrawal. If anyone of you have questions and/or need support, just send me a PM in Norwegian, Danish, Swedish, German, Icelandic or faroese. I'm happy to help. (I will answer you in english.)

 

Aurorax

[Hanna72]

Congratulations. How resilient and strong you are. Thank you for sharing your story, you are an inspiration. 🙏
 

[Malon]

Congratulations and thank you for sharing! Another Paxil surviver! I read your whole story and I could literally feel how much you must have suffered.


 

[Cocopuffz17]

 Glad you pushed through and got to the other side!!! Congrats!!!!!

[Altostrata]

Aurorax, thank you for posting this. Paroxetine is a very difficult drug to go off. Your story will help many people.

[Pawlove]

Thank you so much for writing this! You are amazing and I cannot imagine the journey you have been on and where you have arrived! I have gotten off methadone, morphine, xanax. lyrica and ambien in the last 2 years. Paxil is my last one. I have been on it for over 25 years and had a horrible failed wd 2 years ago. So I came back today, about a month off ambien and morphine, looking for some insight. Your post both illuminates and frightens me. Your strength is beyond what I can imagine. I will soon be 70 so I am thinking (in excuse mode) "do I have enough years to get off this crap?'... I have tried more times than the CT disaster 2 years ago, getting off once before and many times cutting my dose but the wd 2 years ago was the most horrible experience of my life. But I was totally uninformed and didn't even know it was paxil wd. My doctor didn't believe me when I told him I knew why I was so sick. After 4 months of hell I figured it out and reinstated. For you to come back and encourage all of us with so far still to go says so much about you. You are far more than "human"! 

[BigPharmaStinks]

Congratulations, what a warrior! I wish you the absolute best in your future endeavours :). 

[Aurorax]

@Hanna72 @Malon @Cocopuffz17 @BigPharmaStinks

 

Thanks to all of you for reading and commenting. It means a lot to me. Wishing you all the best!

 

@Altostrata

 

Thanks, and thanks for everything you and the moderators/mentors do. This place is invaluable.

 

@Pawlove

 

Pawlove, thank you so much for your comment. Getting off methadone, morphine, xanax, lyrica and ambien in two years is very impressive. Don't let your age stop you. It's impossible to say how long your wd will last but it's highly unlikely that it will last as long as mine did, I simply had bad luck. I was also in a very bad shape before coming off (underweight, malnourished, already damaged after constantly increasing/decreasing the dose.) Only you can know what is right for you, but I would give it a try. You can do a really slow taper (less than 10%/month) and maybe avoid wd altogether. I can't give you expert advise on tapering but will definitely follow your journey here on SA and offer support if needed.

 

Aurorax

 

[Pawlove]

Thank you SO much Aurorax! That means so much! I am having a rough day- my EPI- Exocrine Pancreatic Insufficiency is causing pain and nausea today so I don't feel as perky and up to starting anything new today. I am active on Benzo Buddies and sent your story to a dear friend on there who is in Sweden and has to struggle with her English. She has had so many of the same issues that you've had and she is in year 4 of her benzo wd and still so sick. My failed paxil wd had basically the same sxs as my benzo wd  so I know she can learn a lot from you. 

 

Did you dry cut your pills? I haven't even checked to see if there is a liquid generic paxil. I used an alcohol/water microtaper with xanax but have gotten ever more sensitive to alcohol so I don't want to use any. My system isn't great with milk but I could melt the pills in that. My wanting-to-smack-myself reality is that I was put on paxil for some pretty mild perimenopausal mood swings. No worse than regular old PMS and getting off was never mentioned by me or my Drs. And I'm an RN. That shames me! I was so trusting and all of my extended family members were on SSRIs so I joined the gang. When I first looked into getting off paxil this past January I was shocked at the gut problems that SSRIs can cause. There was no reason for my EPI. Most people have chronic pancreatitis, cystic fibrosis or cancer- some underlying cause, from what I have learned. I was scoped from every side and orifice and nothing looked abnormal. But we cannot undo the harm we have done from trusting our Drs. Only do all we can to heal and learn. I think that's may main reason for wanting to get off paxil- I have realized, way late in the game, that there is no such thing as a drug that doesn't cause issues of some sort. And long term use- no way!

 

Thank you more than I can say for your support! I have thought about you so much since I read your story! You are amazing and it seems helping others is in your DNA and you have found a great calling! 

[Aurorax]

@Pawlove

 

 

Thanks Pawlove. I'm following your Introduction post now. Don't rush your decision. I've read that some people experience delayed akathisia even after a very slow taper, you may want to research that.

 

Yes, I dry cut the pills but I wouldn't recommend doing that. I didn't have enough knowledge and had no idea what I was up to.

 

Don't beat yourself up for trusting your Drs. I was aware that you can't trust them (or pharmaceutical companies), that SSRIs might turn out to be addictive, that no one can know for sure that they don't cause brain damage…That apparently didn't stop me from making the same mistake as you did. I even asked our family Dr. for a prescription. I remember sitting in her office reading in the pharmacopeia and choosing my drug. (Paroxetine, that one seems like a good choice…) My gut feeling was screaming no but I was desperate and to be honest curious to see how the drug would affect me. I was convinced I had too much willpower to become addicted to anything.       
   Unfortunately all my insights and critical thinking skills disappeared after starting the drug. I was no longer there to monitor my experiment until I woke up from the spell 10 years later.

 

I too have regretted my decision a lot, especially when I didn't think I would make it to the other side. I believe it's important that we allow ourselves to feel that regret before we let go of it. I don't believe that things happen for a reason but I definitely believe we can turn our bad decisions into something meaningful as long as we are still alive.  

 

I sometimes wonder who I would have been today if I never started Paxil, but I no longer regret my decision. I really wish I could write this in my own language but ...I got lost and ended up with a life I never would have chosen voluntary because I felt I had too much to loose. I got lost but ended up in a really beautiful place, if that makes sense. I wouldn't trade my life with anyone else.

 

Aurorax

[Daisygirlsk]

On 9/17/2020 at 12:31 PM, Aurorax said:

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

 

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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

 

Thanks so much for sharing. I'm having a horrible day today and this helped me a lot

[Aurorax]

@Daisygirlsk

Thanks for reading my story Daisygirlsk. Try to be extra kind to yourself today and think about the future when all those painful wd symptoms are just a distant memory. I know it's hard to believe sometimes, but they will go away, whether we believe it or not. Don't hesitate to reach out if you need support.
   Wishing you the best on your journey!

 

Aurorax

[Pawlove]

Thank you Aurorax! You make more sense than many of us who are writing in our native language.  You are certainly wise beyond your years and I understand what you mean about regretting. We have a little sign on the mantle in the bedroom that says "Don't look back. You aren't going that way". It's so simple but so true and my regret at this point is that I want to be off yet another drug and know it may not be easy. I wonder too, at times, what I would've been like without Paxil even tho I didn't think it helped or hurt me for a long time. Of course I could be very wrong about the hurt part- if I could look into my poor brain I would probably amend that. I had an MRI of the brain during the terrible failed paxil wd and it commented that I had a lot of "white flares" in my brain for my age. I did a little research on it but not sure what it means. My mom had dementia but her siblings nor any of my dad's family had it so I am hoping I can hang onto what brain cells I have and nourish them.

 

Do you mind if I ask why you don't recommend dry cutting pills? I had planned to get a good scale. The alcohol/water method I used for xanax gave me the feeling of a lot of control but not until later did I realize that my cutting the recommended alcohol in half could've been a real issue. With xanax I feared being cut off and not having enough for a slow taper but with paxil there is no issue like that. So I could melt each pill if I knew it would be well disbursed in the liquid so I could draw out an accurate dose and waste the remainder. With xanax I would make a big mix to use for days and whether it was a good suspension of the med I don't know but it went smoothly. I did not want to waste a drop of the xanax. I had waves that were hard but I doubt it had to do with my mix. But then again- I am sure no chemist and the whole making-a-suspension stuff was over my head with benzo brain. I want to make a small cut soon so I am gathering info. At first I had planned to wait until after the holidays but if I hold at a dose until I am sure I am good I hate to delay for 3 more months. 

 

 

[Aurorax]

@Pawlove

 

My apologies, Pawlove. I read ”dry cutting” too literally. I started thinking about how I sat there at my kitchen table weak and sweaty and tried to cut the pills into small enough pieces, without much success. I had no scale so my daily doses were random at the end of the taper. (I had managed to get 10 mg pills and aimed for 0,5 mg as my last dose, not recommended)
   You will be ok as long as you crush the pills into a powder and use a good scale! And I’m sure you know a lot more about tapering than I do. My expertise is more in the field of surviving.

 

Post an update in your introduction tread when you get started and let me know how you are doing!

 

Aurorax

[Elyssa143]

@Aurorax

thank you so so much for taking the time out to come back and write such a detailed success story! Hope your well! I’m coming up on 31 months. Things are “better” but I still really struggle, the distressing symptoms are still very hard for me. I atill have inner akasthia inner restlessness that makes me feel like I want to kill my self it’s awful, suicidal ideations, suicidal intrusive thoughts, intrusive thoughts, fear of not making it and some depression :(. I am much more functional though but mentally I really struggle. I was on the lowest dose of Zoloft for 1 year came off hit he’ll and they polydrugged me in the psych ward did they’re meds for 1.5 months and microtapered. I’ve also endured a protracted benzo withdrawal about 10 years ago which was hell but this is a whole other beast. I wanted to know why your intrusive thoughts were? Did you fear not making it, my brain tells me I’ll never be ok again, that this is me along with a bunch of other horrible things. Thank you again for your time looking forward to hearing back.

[Aurorax]

@Elyssa143

 

Thanks for reading my story Elyssa145. I want to start by saying that nothing in this post is medical advice. I'm only sharing my own experiences.

 

I've read your background story. I know you’re in a dark and frightening place right now but hold on, things will get better. I had the same symptoms and fears as you have now, including all kinds of intrusive thoughts. A lot of them were compulsive thoughts about harming or killing myself or others. Others were intrusive words or images out of nowhere. Some were neutral, others very disturbing. Some of these thoughts lasted for years. It took a long time until I could use a knife without intrusive images of how I could use it to kill myself.
   I went to a psychiatric intensive care unit and asked them to lock me in because of this. I spent 24 hours in a locked ward but felt like an animal trapped in a cage and decided that I had to get out of there.

 

I had suicidal thoughts before Paxil, but they were of a very different nature. They were never intrusive or compulsive. I just wasn't sure I wanted to live for various reasons. They were like my ordinary thoughts, and they didn’t scare me. I believe this is much more concerning than intrusive thoughts during wd.
   If you start to feel like you want to act on your suicidal thoughts, make sure you reach out for help immediately. Always have someone nearby that keeps an eye on you until you feel better.

 

Intrusive thoughts can be painful, probably because we tend to think that we are our thoughts. We are not, and that becomes very clear when we go through wd.
   You may have to live with these thoughts for a while, so why not invite them? Listen to them just as you listen to a radio or watch tv. They are not you, and you don't have to believe what they are saying. I know they can be deeply disturbing but try to see if you can laugh at them. That won't make them go away, but they may become less frightening.

 

Yes, I feared not making it, especially during the 16 months of endgame tapering and acute withdrawal. I sometimes thought that I should be compassionate to myself and end it all instead of enduring more meaningless suffering. I thought I was too weak to live and that my life was over. I sometimes regretted that I found out about the pills and started tapering, thinking I could have had a few more good years on the drug instead of having to die now.
   All these thoughts were just various ways of telling myself that I needed my drug. I believe these kinds of doubts are a common wd symptom.
 
Things got better when my personality started to come back, but I still had serious doubts that I would make it. I had very low self-esteem after all my years in psychiatry, and losing everything and having to rely on relatives for housing and help to get by made me feel like a failure. I doubted that I could take care of myself or have a home again, even if the wd-symptoms disappeared.

   I also had doubts that I would ever be able to be in the same room as another person without feeling terror. I knew that I could no longer tolerate SSRIs and didn't want to take benzo, so I spent a lot of time thinking about what other drugs I could take instead. I decided to give it a few years, and if didn't recover, then I was going to start morphine or heroin.
   That was a sad and comforting thought at the same time.

 

What I’m trying to say is that it's easy to get the impression that those of us that have recovered from severe and long-lasting wd is extraordinary mentally strong or emotionally stable people. I don't think that's the case, at least not with me. The thing we have in common is that we didn't give up.

   You don't have to feel resilient or even hopeful to survive this. You only have to walk the distance no matter how you feel or where you believe you will end up. Make sure you have somewhere to live, eat, get some sleep if possible, and don't kill yourself. That's all you have to do. I know that's a full-time job at times, but you will get through this. You don't have to believe in healing, because healing is inevitable.

 

What you are feeling and thinking about yourself now says very little about who you really are and what your future holds. Hold on to the memory of who you were before the pills. You will be a wiser version of that person when all of this is over.

 

That got a bit long, but revisiting my past and writing about it is helping me too.

 

I wish you all the best on your journey. Don't hesitate to reach out again if you need support.

 

Aurorax

  

[Deepu]

Salute to u dude

I know how difficut it is to live with no emotions

U r a hero for me

[Aurorax]

@Deepu

 

Thanks for your kind words, Deepu. Wishing you a speedy recovery!

 

Aurorax

 

[Deepu]

Dude did u face sexual dsyfunction and no emtions ....i completely feel like i dont have any emotions....and its for me for4 years....i dont know when i will get better.....it really tough to live this life now....i have no friends because of all this.....i have no passion....in childhood...i have so many dream...i want to become an cricketer now there is no thing left....dude do u know whats help u in this journey....and will it be forever with my life...i want to recover....i also have trichotillomania...thats my go to doctor

[Deepu]

And i also cold turkey ssri....most of the time...due to which i creted aess in 6 years on and off in medication ....now i found a website which is good now i feel like i can handle it

[Deepu]

My main problem is not feeling any type of pleasure in anything not even in smoking and i also crave for drug something....because i lost everything in my life ...career...relationship ...everything

I cant feel time and i waste my 5 year and i cant anything what i have done in thoughs five years no memory 

 

[Deepu]

And the big thing is i can manage those trichotillomania my head shave or anything if i know i evil are this doctor

[Deepu]

I have on 100mg of fluxovin which cause me man boobs sexual dsyfunction weight gain....

[Deepu]

And the intersting part is when i cold turkey ssri in 5 months i have no symtops but after that a trauma happen in my life...and my withdrwal happens.....

[Deepu]

Whats your thought on antideprrssent 

Should i use it un future or this medinces cant do anything...whats your opiniun...and is chemical imbalance theory is right or wrong

[Aurorax]

@Deepu

 

No, I never had any symptoms of PSSD (Post SSRI-sexual dysfunction). I was lucky in that regard.

 

I’m still in the process of figuring out if my emotional and social differences (compared to the average person) are the result of long-term Paxil use, trauma, or my personality. I know that a lot of people here are trying to find out how these drugs affect our emotions long term. I’m looking for those answers too.

I will probably write a post later with more details about my emotional life before, on, and after Paxil, in case someone finds it helpful.

 

I’ll try to answer your other questions too:

 

I could write pages about what helped me through this, but to summarize my most important rules:

 

1.  No alcohol, no drugs. No mind-altering substances, no matter how innocent they may seem.

2.  Make sure you eat and sleep enough, and that your diet is as healthy as possible.

3.  Decide what you want to accomplish in life and break it down into smaller goals. It may seem like you are standing at the bottom of a stair that is impossible to climb, so take it one step at the time. Some of my first steps looked something like this:  - Stay alive without drugs - Be able to eat and sleep. - Not end up in a locked psychiatric ward - Be able to walk a hill where I used to run - Have a home of my own.
   These things seemed nearly impossible, but I don't even have to think about them now.

4.  Exercise as much as you can tolerate.

5.  Don't see yourself as a victim.

6.  Visualise yourself as recovered.
7.  Accept what has happened and use it to your advantage.

 

I can only answer questions about my own experiences. I can't give you advice on whether you should or should not use certain drugs, or what you should believe in or not. That is something you will have to decide for yourself.

 

You mentioned that you have cravings. They will become much less frequent with time, but you may have to learn coping skills to avoid using drugs again. My strategy, in the beginning, was to distract myself. Now I try to sit with the cravings.

 

No, this won't last forever. You will improve with time, but it may take a while. Try to keep as calm as possible, read all the information on this website, and remember that many people have experienced what you experience now and recovered completely.

 

Aurorax