ByeByeSSRI: tapering paroxetine after 24 years - started aged 10

[ByeByeSSRI]

Original title:  Tapering off of paroxetine after 24 years of use (started at 10 years old)

 

Hello friends-

 

I'm 18 months into slowly tapering off of 40mg of paroxetine (currently taking 7mg/day). I'm a 34M and I started taking this drug when I was 10 years old. I was originally put on it because I was experiencing panic attacks and was diagnosed "OCD" (a label that I no long identify with). Here's an abridged version of my story:

 

When I was 9, I came down with a horrible case of food poisoning and spent a week vomiting. I eventually healed but what resulted was a fear of germs, vomiting, and a general sense of panic. I started having panic attacks and stomach aches which led to my doctors performing a variety of stomach/digestive tests before ultimately realizing I had developed some sort of "mental illness."

 

I was put on 10mg of paroxetine which soon was raised to 20mg/day. I remained on 20mg/day until I turned 30 years old in 2018. A that time, I was experiencing a lot of life/work stress and so my doctor and I decided it was time to double my dose from 20mg/day to 40mg/day. What resulted was months of manic-like behavior and 4 months of constant suicidal ideation (both of which I had never experienced). Eventually, these symptoms calmed down and I continued at 40mg/day, still convinced that the paroxetine was "medicine balancing out my 'broken brain.'"

 

When COVID hit in 2020, I experienced a new level of panic and uncertainty. After processing the traumatic experience of increasing my dosage to 40mg, I started to become more weary of running to my doctors for solutions. I looked elsewhere for mental health treatment and discovered a powerful meditation/breathing technique class over zoom. For the next year (during quarantine) I started meditating/breathing, journaling, doing yoga, etc.

 

I think this experience started to help me to "reconnect" with myself, seeing how I had become pretty emotionally numb over the years. In April of 2021, I was struck with a powerful thought one night while sitting on the couch: "It's time to come off the pills."

 

I had tried to taper off my paroxetine twice before, once in high school and once in college. I tried twice because the idea of taking brain-altering drugs for the rest of my life never sat quite right with me. However, in both of these experiences, I tapered too quickly (over the course of a month or two) and was devastated by the withdrawal effects. What made the experience worse was that I didn't realize I was experiencing withdrawal. My doctor at the time simply told me that I was experiencing was "me" and that this was proof that the drugs were helping. This experience made me admit defeat and I stopped doing any research about tapering. I resigned to taking paroxetine for the rest of my life.

 

But by 2021, the amount of information we have on tapering off SSRIs is incredible! Due to the wonderful advocating work of you all and many others like you, I started learning everything I could about slowly tapering and the predicable withdrawal symptoms most of us experience. I read "Your Drug May Be Your Problem", the Heather Ashton manual (which I realize is geared a bit more towards benzos), as well as Will Hall's Guide to Harm Reduction. "Medicating Normal" also has a variety of videos with informative conversations with doctors and researchers of psych drugs and the harms they cause.

 

I'm now 18 months into my third (and final) taper off of paroxetine. I wanted to join this forum to share my story and prove to others (like so many of you have done or are doing) that it IS possible to come off these drugs. It IS possible to heal. The journey is long and very difficult, but I am so thankful to have hope back into my life. I'm feeling more, the "good" and the "bad".

 

I still have a ways to go, but I'm a bit more in "the flow" these days. The withdrawal symptoms are predictable and I've been experiencing what seems like a very common pattern of "windows" and "waves." All of this reassures me that nothing has gone wrong, in fact it's all going right.

 

I'm so thankful for my wife for sticking with me through all of this as it has not been easy on her. My love for her has only grown. I've lost some friends due to the pharmaceutical rollercoaster I was on a few years back, but I managed to keep my job and I'm thankful my life didn't completely fall apart.

 

I guess I'll end this here. I am curious to know if there are any people on this forum that have been on their drug since childhood? I often worry that the long-term use of paroxetine during my most developmental years will somehow come back to haunt me years from now. But I think that's simply fear. I like to think that our bodies can heal from these drugs, given enough time and support.

 

I wish you all the best. Thank you.

 

Edited September 11, 2022 by ChessieCat
added original topic title

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  Congratulations for getting down to 7 mg of paroxetine!  It sounds as if you are coping with the tapering and withdrawal really well, and have some good on the ground support from your wife.  Your strong attitude and perseverance shine though your post, and will continue to serve you well as you complete your taper.  

 

Can you please give us specific information in your signature about your drug history for all drugs and supplements you are on and have been on, especially for the past 18-24 months?  It would be especially helpful to have the details of your drugs in a concise vertical list (no symptoms), only specific dates, include the day (as best you can say for example early March if you don't recall the day), drug names, and dosages of each medication decrease or increase.  Use this example:

 

Feb 15 2020 - June 30 2020 - 25mg citalopram, 2mg xanax

July 1 2020 - Sept 7 2020 - 50 mg citalopram, 4 mg xanax

Etcetera

 

Please read the link below for instructions.  This will allow us to give you the best guidance.  

 

How to List Drug History in Signature

 

Here is some important information about how these drugs actually work.  This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

 

Tapering is best done extremely slowly, and we generally taper by 10% of the current dose no more than once every 4 weeks, so that the reduction becomes exponentially smaller.  It is especially important to taper very slowly and cautiously as we get to the lower doses.  

 

 Why Taper by 10% of my Dosage  

 

Tips for Tapering Paroxetine/Paxil

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

Stability is really important when we are tapering off psych meds.  Please read the link about stability:

 

Keep It Simple, Slow, and Stable

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

Yes, there are many people here who have been on the drug since childhood.  The one that comes to mind is sunflower414, who was put on psych meds at age 7, and is currently doing a Paxil taper.  Here is her thread: 

 

Sunflower414: Medicated at Age 7 Now 27

 

Here are others put on drugs at a young age: 

 

ItsNearlyMedlessKateAgain

 

Kikkirimo009: Ten Plus Years Now Trying This

 

Frank85: Need Help and Advice

 

EttaLou: Looking for SupportAriel: Protracted Withdrawal and PAWSAriel: Protracted Withdrawal and PAWS

 

Ariel: Protracted Withdrawal and Paws

 

 

When we see specifics about your taper, we can help you to fine tune it, so that we can help you to cut back on some of the withdrawal symptoms.  We look forward to hearing back from you.  

 

 

Edited September 11, 2022 by getofflex

[ByeByeSSRI]

Thank you GetOffLex! I updated my signature and am excited to read through all of the links you've provided. Also, a BIG congratulations to you for becoming psych drug free! That is certainly my goal.

 

In addition to updating my signature, I wanted to mention that my goal is complete sobriety. Over this past summer, I watched my herb and alcohol intake slowly increase. I watched the shame arise in me due to this and I tried to become mindful every time I'd reach for an outside source to make me happy or relieve the emotional pain. "Did it work?" I'd ask myself. Slowly, I started to realize that no, it wasn't helping. (However, I do believe herb was very helpful for me at the very beginning of my journey. However, I'm not endorsing it and please let me know if I'm crossing a guideline with any of this writing).

 

I'm in a "psych med sobriety" support group and a lot of the members are also AA folks. I listened to their stories and about a month ago, quit herb cold turkey and am considering dropping alcohol all together. I've noticed huge improvements since making these changes.

 

You mentioned my support system and my attitude and I credit these two things (along with exercise/diet changes) as some of the most effective things for me. I spent a long time angry about being put on paroxetine so young, angry that I took the pills for as long as I did, angry that I kept it "secret" from so many people in my life, etc etc etc.

 

While I think it's important to grieve and process what happened in our past, I also slowly realized that this type of thinking was keeping me stuck. I kept asking "Why is this happening TO me?" and started asking, "Why is this happening FOR me?" 

 

I think human beings have an enormous capacity for inner-strength but that strength must be cultivated, usually through some type of struggle. My support group has helped me reframe withdrawal as a "wonderful opportunity to cultivate my inner-strength." WOW, that's powerful stuff.

 

Withdrawal also gives us the opportunity to establish healthy eating habits, sleeping habits, and better thinking habits. I also now start my mornings one of two ways: some quiet time (preferably outside) for meditation/journaling/gratitude practice. OR a hardy workout. If I do one of these two routines every morning, my day's becoming much more meaningful. The tough days are tough, but they are only temporary.

 

We are all stronger than we may realize. 

[getofflex]

Honestly, you are already a giant step ahead of most people who come on this forum.  You have already learned some great non drug coping skills, and I think you will be just fine!  

 

How is is going for you since you dropped your paroxetine dose to 9 mg on August 2?  Are you having symptoms, and if so, what are they, and how bad are they?  

 

We suggest listening to your body, and doing your reductions this way, instead of just going by the calendar.  If we listen, our bodies will tell us when it is time to reduce.  We suggest waiting until you feel stable for at least a couple of weeks before doing another reduction: 

 

Stability

 

Please stay in touch.  There is a lot of good support on here, so feel free to check out some of the other intros.  

[ByeByeSSRI]

Thanks for your support @getofflex! I actually dropped down to 8mg on 8/20/22 and then 7mg on 9/8/22. My withdrawal symptoms have been fairly manageable (I credit my recent 6 month tapering pause as well as all the practices I'm doing). I plan on stay at 7mg until late October before reassessing. I have to travel for work in October and would like to avoid acute withdrawal, if possible.

 

Overall, I'm experiencing some insomnia, some digestive/IBS symptoms (some of this may be due to quitting herb cold turkey a little over 3 weeks ago), and some brain zaps (usually only in the morning).

 

It all feels manageable, especially since the windows/waves of each drop follow a very similar pattern for me. The first week I feel fine, the second week is more difficult, the third week I start to feel "back to normal" again. These days, I honestly don't think about my physical symptoms that much. However, I realize the brain zaps are usually a sign to stay where I'm at and let my body/CNS "catch up." The start of my taper was the worst- I experienced a litany of horrible side effects, derealization, rage, some hallucinations, and an absolutely overwhelming feeling of dread. These days, withdrawal feels more like a slow dance than a fight.

 

Emotionally and spiritually, I feel better than I have in months. And I feel more connected to myself, others and the world around me than I have in many years. I usually end up tearing up or crying once a day these days and I used to NEVER cry. I'm not crying because I'm sad or scared though. Instead, I'm overwhelmed with gratitude and the understanding I seem to be gaining. I used to be so confused and SO angry. But I feel the anger is turning into compassion and humility.

 

Exercise has also been hugely helpful, as has walks with my dog twice a day. I also enjoy journaling, playing music, and drawing/painting. These activities have really helped me slow down and appreciate the slower speed in which I need to take life these days. I'm still busy with a full-time job, but again, it feels manageable.

 

My support group often talks about withdrawal in terms of the metamorphosis a caterpillar experiences in its cocoon. The caterpillar is completely liquified inside the cocoon before it can finally emerge. I think that's a lovely reframe of psych med withdrawal. I certainly feel that this process has pulverized the old version of me so that a newer, wiser, and more caring version can emerge.

[Happy2Heal]

6 hours ago, ByeByeSSRI said:

I think human beings have an enormous capacity for inner-strength but that strength must be cultivated, usually through some type of struggle. My support group has helped me reframe withdrawal as a "wonderful opportunity to cultivate my inner-strength." WOW, that's powerful stuff.

 

I'd like to meet your support group! and more to the point, wish I'd met them (and/or you) many years ago. *wry smile* 

 

That's a great perspective to have. 

I'm glad you joined and have decided to share your journey.

I think it will be helpful to a lot of people here.

 

I "follow" very few threads on this forum these days, as I am now 5 yrs off all meds but having been on lots of meds for most of my adult life, over 4 decades, there's a lot that I never learned while I was medicated. Had a very traumatic childhood so most of that was spent just trying to survive.

Now, well into my 60's, I am finally learning how to LIVE

 

Your story has already helped me, I want to be here to support you if you need it, but also for any pearls of wisdom you may share

 

 

thanks for being here

Edited September 12, 2022 by Happy2Heal

[getofflex]

1 hour ago, ByeByeSSRI said:

I actually dropped down to 8mg on 8/20/22 and then 7mg on 9/8/22.

Please update your signature with this information.  We staff need to see your tapering history in a concise format with each your posts, thanks.  

 

Dropping from 8 mg to 7 mg is a little too big of a reduction, it is a 12.5% drop.  You may get away with it this time, but please take your time before reducing again, and make sure you are stable first.  It is important to do an exponential taper, meaning that each reduction is a bit smaller, and based on a 10% reduction of the current dose.  The formula is:  current dose X 0.9 = new dose.  For example, 

8 x 0.9 = 7.2 mg

7.2 x 0.9 = 6.5 mg 

6.5 mg x 0.9 = 5.9 mg .... and so forth.  

 

As we get to the lower and lower doses, SSRI drugs tend to have a disproportionately larger effect on our brains.  See this link to understand why.  Pay special attention to the chart.  

 

SERT Transporter Occupancy Studies - Reason for Exponential Taper

1 hour ago, ByeByeSSRI said:

quitting herb cold turkey a little over 3 weeks ago

What is herb?  Is this marijuana?  I assume it is a mind altering substance.  

 

1 hour ago, ByeByeSSRI said:

I realize the brain zaps are usually a sign to stay where I'm at and let my body/CNS "catch up." The start of my taper was the worst- I experienced a litany of horrible side effects, derealization, rage, some hallucinations, and an absolutely overwhelming feeling of dread.

This tells me you are reducing either too fast, or by too big of drops.  Please slow down, and do smaller reductions and give more time between reductions.  These things have a way of catching up with us, and you don't want to crash your nervous system, as it causes significant suffering, and can take many months to years to recover from.  I'm especially concerned with the brain zaps and hallucinations, which indicate a pretty destabilized nervous system.  

 

You may even consider micro tapering.  Paroxetine is a notoriously difficult drug to get off of. 

 

Brass Monkey Slide Method of Micro-Tapering

 

1 hour ago, ByeByeSSRI said:

Emotionally and spiritually, I feel better than I have in months. And I feel more connected to myself, others and the world around me than I have in many years. I usually end up tearing up or crying once a day these days and I used to NEVER cry. I'm not crying because I'm sad or scared though. Instead, I'm overwhelmed with gratitude and the understanding I seem to be gaining. I used to be so confused and SO angry. But I feel the anger is turning into compassion and humility.

This is wonderful.  It shows that the drugs are losing their grip on you, and you are getting yourself back!  And, it is OK to cry because we are sad or scared, too.  😉

 

 

 

 

Edited September 12, 2022 by getofflex

[Mdawg]

https://www.survivingantidepressants.org/topic/27020-for-people-who-were-drugged-as-children/

hello, here is a link to a topic for people who started on this stuff during childhood.  Feel free to participate! 

[ByeByeSSRI]

Thank you @Mdawg! I'll check it out... At the start of my taper, I experienced a lot of what I called, "emotional flashbacks." I felt as though parts of my psyche were "stuck" at 10 years old, the time when I started paroxetine. Doing inner child work and being really gentle with myself is helping me "go back" so that I can "move forward."

 

That's so kind of you to say @Happy2Heal. Our "psych med sobriety" zoom support group is free to join and available to anyone who wants to discuss healing/emergence. It's an eclectic group of individuals that have helped me immensely. Some folks are years off of meds, others (like myself) are still tapering, and some newer members have yet to start tapering. The group is small and only about a year old. We don't focus too much on symptom-talk, more so, we come together to try to cultivate strength and hope. A man named Kenneth Price hosts them on Sundays at 9am PST and Wednesdays at 5pm PST. Here's the link to the zoom/website: https://psychiatricsobriety.com/zoom-meetings Hope to see you there sometime! (I usually join on Sundays and my name is Chris)

 

Thank you @getofflexfor your concerns as well as the information you provided. I do think you're right that I've been tapering a bit too quickly. Throughout this process, I feel I have to continually re-learn the lesson of patience. I plan on resting at 7mg (I updated my sig btw) for another 4 weeks before I resume tapering at 10%. Reading about SERT is interesting and how much of our SERT is affected by even a small dose of SSRI. Also, I should've clarified that the hallucinations I experienced were short-lived and over a year ago (albeit, quite frightening).

 

I'm happy to report that my brain zaps have reduced a lot and my insomnia was a bit better this week. I actually feel quite good most days, even on the days I'm struggling with some symptoms. Overall, I'm just feeling gratitude and humility in a way that's hard to explain. I've also stayed busy with work, exercise, and surrounding myself with loving/caring people. I'm so thankful to have survived the last few years. 

 

 

I mentioned "herb" and yes, I mean cannabis. Sorry, I thought for some reason we weren't supposed to say cannabis (still learning the rules here). I did post about my personal experience with cannabis over on a separate thread if you're interested:  

 

 

And the crying is wonderful btw! I'm FEELING more than I have since I was a child. 🤗

[methuselah]

Thanks for providing the link to the zoom meeting @ByeByeSSRI, I very well may see you there tomorrow.  I’ve been thinking about doing something like this but didn’t know one existed, or how to find it I suppose.  

[Happy2Heal]

4 hours ago, ByeByeSSRI said:

That's so kind of you to say @Happy2Heal. Our "psych med sobriety" zoom support group is free to join and available to anyone who wants to discuss healing/emergence. It's an eclectic group of individuals that have helped me immensely. Some folks are years off of meds, others (like myself) are still tapering, and some newer members have yet to start tapering. The group is small and only about a year old. We don't focus too much on symptom-talk, more so, we come together to try to cultivate strength and hope. A man named Kenneth Price hosts them on Sundays at 9am PST and Wednesdays at 5pm PST. Here's the link to the zoom/website: https://psychiatricsobriety.com/zoom-meetings Hope to see you there sometime! (I usually join on Sundays and my name is Chris)

 

 

Wow!! thanks so much @ByeByeSSRI

I actually thought you meant your group of friends and relatives, that sort of supportive group, not a true group that joins via zoom this way.

 

and here I was a bit envious of you having this great support and it turns out it is available to anyone free, awesome!

thanks for the link, I will def join when I can.

❤️

 

[ByeByeSSRI]

Hope to see you there @methuselah!

 

@Happy2HealI'm lucky to have both support from my wife/friends/family as well as this awesome group. We all need as much support as we can get! 🤗

 

[manymoretodays]

On 9/17/2022 at 3:54 PM, ByeByeSSRI said:

Our "psych med sobriety" zoom support group is free to join and available to anyone who wants to discuss healing/emergence. It's an eclectic group of individuals that have helped me immensely. Some folks are years off of meds, others (like myself) are still tapering, and some newer members have yet to start tapering. The group is small and only about a year old. We don't focus too much on symptom-talk, more so, we come together to try to cultivate strength and hope. A man named Kenneth Price hosts them on Sundays at 9am PST and Wednesdays at 5pm PST. Here's the link to the zoom/website: https://psychiatricsobriety.com/zoom-meetings Hope to see you there sometime! (I usually join on Sundays and my name is Chris)

 

This sounds awesome.  Thanks ByeByeSSRI.  I'm going to go ahead and add this now to this topic:  https://www.survivingantidepressants.org/topic/6631-peer-support-group-meetup-zoom-skype/page/3/#comments

 

[ByeByeSSRI]

A brief year-end update: I'm now down to 4.5mg of paroxetine and I'm excited to eventually be completely off sometime in 2023. Each reduction in dose comes with a number of difficult/emotional days, but eventually these feelings pass. I try to accept it all. Lately, my anxiety has really risen but I try not to let it take over. Instead, I imagine my feelings or frightening thoughts like items floating in a river. I'm on the river bank, simply watching these thoughts go by. I don't hold on to any of them too tightly, just acknowledge them and let them pass.

 

I wish everyone healing and progress in 2023!

[j1290]

Hi @ByeByeSSRI!  Is your zoom meeting still an ongoing thing?   It sounds really cool!

[Thorin]

3 hours ago, j1290 said:

Hi @ByeByeSSRI!  Is your zoom meeting still an ongoing thing?   It sounds really cool!

Just saw this myself

[ByeByeSSRI]

Yes it is! https://psychiatricsobriety.com/zoom-meetings

 

We meet every Sunday at 9am. The zoom calls are recorded for their YT channel but after 10am the recording stops so people can share more personal details if need be. Because it's recorded, some people don't turn on their video or share their whole names. 

 

Here's last week's meeting: https://youtu.be/aj4xISa9J_g

 

I've gotten a lot out of the group. Really great folks. It's small and very accepting. We focus on the more spiritual side of withdrawal, and borrow a lot from the 12 steps. But it's not a religious group nor does anyone push any dogma. Mainly, it's been a great place for me to go and talk with others struggling with the deeper issues of psych med withdrawal: Who am I? What am I truly afraid of? Why did I reach for pills in the first place? Etc.

 

The motto of the group is this: "you have not been damaged. Because who you truly are, can never be damaged."

 

I'm traveling this Sunday and can't join but when I'm on, you'll see me as Chris H.

 

[possum]

I'd been wishing for an AA-like support group and this sounds amazing. I'll be there. So happy to have seen your post!

[ByeByeSSRI]

Glad to hear it, possum! I've never been to an AA meeting but the host of the group, Kenneth Price has and seems to have brought a lot of AA's teaching/theories and applied them to psych med tapering. After all, is there really THAT much difference between alcohol/street drugs/psych meds on a spiritual level? They all seem to be coping mechanisms that try to separate us from the pain and fear we all seem to be running from.

[littlebird]

On 4/7/2023 at 5:46 AM, ByeByeSSRI said:

Yes it is! https://psychiatricsobriety.com/zoom-meetings

 

We meet every Sunday at 9am. The zoom calls are recorded for their YT channel but after 10am the recording stops so people can share more personal details if need be. Because it's recorded, some people don't turn on their video or share their whole names. 

 

 

Oh that's dope! 9am PST might not be that doable for my (reforming) night owl self, but I love this. I think Inner Compass also does zoom calls, but I haven't checked those out.

[ByeByeSSRI]

Update: I'm down to 3.6mg of paroxetine and am also 2 months sober from smoking cannabis. I was never a heavy smoker but I was a consistent one: I'd smoke at night to fall asleep. And for a while, I felt that cannabis helped my paxil withdrawal symptoms.

 

However, somewhere along the way, cannabis seemed to help less and less. Perhaps I was building a tolerance or perhaps the paxil withdrawal got more intense as I dropped to lower doses. Either way it was time to hang up the pipe.

 

Quitting cannabis has been a journey unto itself! I held my paxil dose while quitting cannabis because I knew my body and brain would need time to adjust. I've quit cannabis before for brief periods and the withdrawals are kinda similar to SSRI withdrawal, but far less intense. I've never quit cannabis for this long (2+ months) and I'm surprised to find myself having zero cravings or any desires to go back.

 

My anxiety is up higher than normal and panic attacks have become much more frequent than before. But that's ok, I trust this will even out with time. The other symptom that's causing a lot of disruption is insomnia. Is it from the cannabis withdrawal or the SSRI withdrawal? Yes... Haha. Who knows. I have no problem falling asleep but often wake at 2am and can't fall back asleep. But I'm trying all of the things: yoga, eating healthy, avoiding alcohol/caffeine, cool air temperature, sound machine, etc. I experimented with melatonin... No thank you! Had some crazy anxiety and intense confusion. I'll just ride this out and hope that in another month or two, the insomnia is far less frequent. I know it's an issue with my mind and how I handle stress. I've had a lot of ruminating thoughts and fears so meditation and breathing exercises have been helpful.

 

Just trying to tell myself it's all ok. Because it is. Even when it sucks. It's all ok. 👍