Aurorax: Severe protracted Paxil withdrawal - Finally free!

[Aurorax]

Thanks, @Raindays. Wishing you all the best on your journey ❤️

[Aurorax]

 Hi everyone!
 
I'm taking a break from SA during the summer to focus on a project I'm working on, but I will be back answering questions and messages in September.
 
Thanks for reading my story and commenting.❤️
 
Aurorax

[Altostrata]

Thank you, @Aurorax. Please do come back, your voice is so helpful in the community.

[Aurorax]

Thanks a lot, @Altostrata. I'm happy to be a part of this community.

[MaggieSmalls]

Dear @Aurorax,

thanks for your story I just read it for the 1st time and with regards to the symptoms I can relate a lot.

I am over 4 years off paxil and as you know these years were pure hell for me. Luckily I finally can see improvement but waves still occur frequently and some are very heavy though they don´t last that long anymore.

Especially what you described being locked within your own body and WD mindset is excactly how I feel for years now. I cannot even remember how I was before all that because it´s been a while since I felt "healthy".

I still cannot believe that only 1 year on this drug took me 4 years and counting but I hope that one day I can write my own success story people like you encourage me a lot thanks for that!

[Meeto]

@Aurorax You mentioned hppd.  Did this start as a side effect or reaction while on the med?  I’m sorry if I missed it my cognition is very poor. 

[Aurorax]

Thanks for reading my story and commenting @MaggieSmalls. I have read through your Introduction topic, and I agree, we seem to have a lot of experiences in common. I found it interesting that you, too, have hallucinations after several years. Mine are gone now, but it took a long time. I’m happy to see you are doing better, and I look forward to reading your success story eventually! 🦋

 

I have continued to heal since posting my story. I plan to write an update, but there are so many things I want to do that I don’t always take the time to post here even though I want to.

 

Aurorax

[Aurorax]

No worries @Meeto! Some of the symptoms started after raising the dose to 30 mg, but I wasn’t aware I had them at the time. I remember noticing other symptoms for the first time during wd, but maybe I just became aware of them because I was more present, or perhaps they became more intense. But I don’t think I saw trails and halos before coming off.

 

Aurorax

 

[SunnyRainyDays]

Hello!

I wanted to ask how you are doing. Did your HPPD improve? You mentioned you continued to heal since posting your story, which just proves how remarkable our brains are to be able to hear even after 10+ years. Such stories make me truly believe no damage is permanent, and that we can heal even the last of our struggles after a few more months or years.

 

cheers

[Jilla]

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

 

---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

 

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 for sharing💕

[getofflex]

@AuroraxYou are truly a warrior, to survive what you have.  I have a deep respect for your incredible strength and patience.  

[Aurorax]

Hi, @SunnyRainyDays! Thanks for asking. I’m taking a break from SA during the summer, but I hope to have time to give an update later when I’m on vacation.

 

Thanks for reading, @Jilla!

 

Thanks for stopping by, getofflex. Your words mean a lot to me.

 

I also want to say to anyone reading this that I will no longer answer questions in PM:s and offer support unless we have already been in touch. I appreciate all messages, but I can no longer keep track of everyone, and I have realized I don’t have enough time to give you the support you deserve. I decided it’s better to give my full attention to a few people I can check in with regularly. Thanks for your understanding.

 

I wish you all a wonderful summer. And if you are still in wd hell: Keep putting one foot in front of the other. There will be more summers.

 

Aurorax

[Aurorax]

Hi everyone!

 

I thought I would have time to write an update during my vacation, but I've been too busy.

 

I've concluded that it's time for me to leave SA for now and move on. Answering questions here means I get exposed to the same suffering that I went through, and that shapes how I see myself. I'm so much more than a psychiatric survivor. Paxil was something that happened to me that I had to go through. I decided early on that it was a bump in the road and not my identity. I feel like I have lost that perspective lately. I need to look forward instead of focusing on what has been. The past is a dead end.

 

There is so much I could write about the improvements I've seen since I first posted and the ways I've changed as a person, but it would take too much time to go through everything. I've been improving steadily until a setback a few months ago. I felt close to 100% recovered this spring and worked way too much. I had a good time but ended up exhausting myself, and a few symptoms became more pronounced, some of which I hadn't seen in a long time. I'm doing better again now, thankfully.

 

On 6/29/2022 at 7:34 PM, SunnyRainyDays said:

I wanted to ask how you are doing. Did your HPPD improve?

 

The HPPD is still there, and it was one of the symptoms that got worse during my recent setback. I have had times in the last years where there have been noticeable improvements, though.
  It's now known that antidepressants can cause HPPD, and we know from hallucinogens that it can be long-lasting. Most people get better and better, but those suffering from this may want to focus on trying to live with the symptoms.
  My symptoms are mild, and I no longer think about them unless reminded. That's one more reason to leave SA. I appreciate the questions, but they make me notice the symptoms more. The world may never look the way it did before Paxil. Things still move in strange ways occasionally, like the ceiling rotating. I see intense starbursts from headlights, even in daylight. I still see halos. Only when it's dark in good periods, but they are noticeable in daylight when I have a setback. I see barely noticeable trails on bad days. I'm still sensitive to light. I've started to wonder if my sensitivity to movements is related to the HPPD, as that sensitivity came back during this setback. So did the sensitivity to light. Not even close to what it used to be like the first five years off, but still noticeable.

 

To end this post on a more positive note: I had a few weeks last summer when all sensitivity to light went away completely. It was sudden and unexpected and made me realize it had been worse than I thought. Maybe it was a window. Maybe I'll come back in a few years to tell you I had no idea what being recovered was like when I first posted my story.

 

It's hard to let go of all the people I've met here, but it's time to move on now, even though I will keep wondering how you are doing. I'll probably come back in the future to say hi.

 

Much love

 

Aurorax

[Aurorax]

One more thing. I took a CYP test about a year ago. That's a test used to assess the genetic risk of abnormal drug metabolism.

   CYP2D6 is a liver enzyme that is responsible for metabolizing Paxil. The test shows I'm an intermediate metabolizer. That is, slower than normal. (The categories are: Ultrarapid metabolizer, normal metabolizer, intermediate metabolizer, and poor metabolizer.)

 

The instruction in my test regarding Paxil reads as follows: 

 

Recommended dosage according to the label. With this genotype, exposure to paroxetine could potentially increase, predisposing to adverse effects.

 

It's possible to have protracted wd even if you are a normal metabolizer, but I believe this contributed to my getting progressively worse while on the drug. I was very out of touch and eventually had the majority of side effects listed. It might also have played a part in my experiences during wd. But this is pure speculation. There is no way to determine how high doses I was exposed to, and many other things contribute to the speed at which we metabolize drugs. 

 

CYP1A2 is also involved in metabolizing Paxil, and my test says the following:

 

Recommended dosage according to the label. This genotype is different from the most common genotype. However, there is no broad, coherent scientific evidence of its implications for drug efficacy or adverse effects.

 

Being a slow or intermediate metabolizer of CYP2D6 is not uncommon: 

 

"Allele frequencies vary considerably across the major ethnic groups predicting poor metabolizer status (AS = 0) between 0.4 and 5.4% across world populations. The prevalence of genotypic intermediate (AS = 0.5) and normal (AS = 1, 1.5, or 2) metabolizers ranges between 0.4 and 11% and between 67 and 90%, respectively. Finally, 1 to 21% of subjects (AS >2) are predicted to have ultrarapid metabolizer status."

https://www.nature.com/articles/gim201680

 

The CYP2C19 test shows I'm a rapid metabolizer. CYP2C19 is responsible for metabolizing several other common antidepressants. 

 

Always have a CYP test before you decide to hold your dose or before deciding on a very slow taper. Poor metabolizers may end up in a life-threatening situation, literally poisoning themselves. 

   But that's just my opinion and not medical advice. 

 

Aurorax

[Erell]

Thank you so much for generously sharing your story, your time and your answers with us.
Enjoy your life dear Aurorax ❤️ 

[Sottana]

@Auroraxive been interested in this for a while. Where did you get this test done? Did you have to see a doctor? Thank you for the post 

[Longroadhome]

It’s understandable you must move on and get on with living your life and let the Paxil memories fade.

Here, you have left your mark. Thank you Aurorax. 

[Aurorax]

Hi @Sottana! You can buy a test online. I recommend that you compare prices and choose a company with a good reputation. Good luck! 

 

@Erell and @LongroadhomeThank you so much. I will come back one day and read your success stories. ❤️

 

Aurorax

[ChessieCat]

@Aurorax

 

Just wanted to wish you all the best for the future.

 

Take care!

[Pawlove]

@Aurorax, you have been a shining light and so generous with your love and compassion. Thank you for that and God bless you in your life going forward. I believe you are making the right decision. Separating from the reminders will be a healthy way for you to have the best life possible and you certainly deserve that. You may be gone by now and not see this but if not, I wanted to let you know you helped me tremendously at a very difficult time. 

[rmce72a]

Aurorax, thank you for all the info you are giving those of us who are still working our way through withdrawal. I read some of the information about genes and withdrawal but wasn't able to convert the info into practical advice. You seem more knowledgeable, so I hope you won't mind answering questions for me.

 

I have had a gene test (Genesight) and I am an ultrarapid metabolizer. What does this mean for me in terms of tailoring my dose reductions? Thank you so much for any help you can give me.  Take care

[bunchesofoats]

Hi @Aurorax, I see that you are taking a break and wish you well. I had the same experience where I saw I needed to take a break from viewing the forums because it kept focus on this problem that I needed to be able to move on from to cultivate other parts of my life. Your words have helped many, including myself. I've even saved some quotes from you that I had written in prominent places for daily review during my toughest waves. Thank you for all that you've shared.

 

You mentioned some time ago that you have a connection in Los Angeles. If ever you're out here in CA and wish to connect let me know. I wish you continued healing and self love. ❤️

[boto2000]

Hi Aurorax give us an update on your recovery journey have you seen improvement since your last post ? Are you getting closer to your full recovery

[gentlehermione]

On 9/17/2020 at 8:31 PM, Aurorax said:

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.

Dear @Aurorax

 

I hope you are well 🥰

 

At six years post-zero I am experiencing a major setback at the moment. I keep coming back to your success story which gives me great hope. Thank you! 

[ShadowDancer]

Hey.

HPPD and Tinnitus are my worst and most diasbling symtoms too.

If my afterimages and light sensitivity were to resolve(along with the noise in my brain), I'd not mind the rest of my symptoms.

I hope you are doing well.

[Giuly88]

On 9/17/2020 at 7:31 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

 

---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

 

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

 

Hi Aurorax,

 

Congratulations for your recovery. What a journey. Well done for persevering. It shows how much tenacity and resilience this whole gruelling process requires.

 

I have a question if I may. Did you have involuntary muscle tightening? If yes, could you describe which muscle it affected? Did this resolve for you?

 

Thank you 🙏 

 

Giuly88

[Giuly88]

Hi Aurorax,

 

Hooe you are well.

 

I have a question. Did you experience abdominal jerks during your withdrawal?

 

Thank you 🙏