LivingPast27: 27 years of Paxil

[LivingPast27]

My journey started with Xanax for school anxiety in 1989 when I was 11 and progressed from there.  It was short term and innocent enough but that was my introduction to medications. I realized early that doctors didn’t understand the medications.  We would call the doctors and staff nuns because when they talked about the drugs they sounded like a virgin teaching sex ed.  I started on Prozac after a tricyclic overdose I probably shouldn’t have survived so I understood the need for safer drugs.  After a couple years on Prozac I started feeling and acting weird. When I read ‘The Crucible’ I compared the effects of the rye toxin to the SSRI side effects I was experiencing.   They switched me to Paxil (with a side of Haldol for the ruminating thoughts) in 1995 as a minor so I feel like lived through 329, complete with an emotional lability event and all. I spent the next 27 years on and off Paxil until I stopped in 2022 and this time the withdrawals (pacing aka) never went away. That is what brought me to this forum.

I feel like an idiot for not discovering this site sooner.  So much of what I read here is just different words for things I have written about for 30 years.  I canceled cable news and social media around 2011 and I assumed sites like this were just misinformation and no more reliable than the medical journals or drug companies.  Fortunately, I’ve become really good at taking in new information and knowing when to admit I was wrong and then change my opinion.  It’s humbling to admit I fell fell for misinformation, but along the way I also realized how much I was right about.  I think a lot of the people here have had a similar journey and I thank you for the work you have done. 

I got really good at using nutrition, exercise, sleep management, mindfulness/meditation and stress management to manage my health after I stopped the Zyprexa and Lithium almost 20 years ago.  I was never able to stop the Paxil and eventually learned how to doctor shop and circle the right numbers to get my prescription filled.  I wasn’t planning on stopping when and how I did two years ago, but bad luck happened I ended up doing a short taper without medical supervision. I was arrogant and overconfident and have paid a high price.  At this point I am skeptical if reintroduction or tapering would help but I remain open minded. After 27 years of Paxil I realize I am an extreme case and I may be looking at years of healing. I quit drinking without much effort and lost all the weight I gained from meds (80+ pounds) and have experienced the associated health benefits. I feel like things are going in the right direction despite the symptoms.  I have been fortunate to find a good open minded therapist but not as lucky finding medical doctors familiar with akathisia and withdrawals, although I hope that will soon change. I’m in a good enough place mentally, but the endless pacing and health rumination is exhausting and at times overwhelms me.

There are a few other things in my history that may be relevant and I also have a lot questions, but for now I just want to get this posted.

Edited July 21 by Emonda
Name to title

[Emonda]

Welcome @LivingPast27

That's quite a journey you've been on.

 

20 hours ago, LivingPast27 said:

I spent the next 27 years on and off Paxil until I stopped in 2022 and this time the withdrawals (pacing aka) never went away. That is what brought me to this forum.

 

20 hours ago, LivingPast27 said:

I ended up doing a short taper without medical supervision. I was arrogant and overconfident and have paid a high price.

 

A rapid taper of any AD is not advised, especially for Paxil.

 

20 hours ago, LivingPast27 said:

At this point I am skeptical if reintroduction or tapering would help but I remain open minded.

 

Reinstatement is best within the 1st  3 months. Beyond that, it's an experiment/gamble.

 

20 hours ago, LivingPast27 said:

I feel like things are going in the right direction despite the symptoms.

 

This sounds encouraging.

 

20 hours ago, LivingPast27 said:

but the endless pacing and health rumination is exhausting and at times overwhelms me.

 

I suggest you use the search funtion in the top right to look for material on these two topics. You may find something that will help.

 

As you've probably read, recovery from ADs and tapering is not linear. There are good days and not-so-good days/weeks/months. This is referred to as the Windows and waves pattern of stabilization.

 

These two links would be worth a read: Emotional Spirals

and Non-drug coping strategies

Avoid alcohol.

Once again, welcome to S.A, ans sing out with any questions.

Emonda

[LivingPast27]

Thank you.  I'm taking some time to go through older posts and it has been very cathartic to see so many others who had parallel experiences. 

 

I was fortunate read something about windows and waves when the akathisia was at it's worst at about 6-8 months into withdrawels. Knowing the wave would pass is how I got through the worst of it. It may be 5 minutes, 5 hours, or 5 days, but eventually the wave would pass.  I know it's silly, but my hemorrhoids went away when I stopped the Paxil (and quit drinking), so I would make myself laugh by thinking 'at least I don't have hemorrhoids'.      

 

The akathisa felt like the rock bottom the included all the previous rock bottoms.  It felt like the physical or physiolology of fear.  Like the fear reflex that had been numbed for so many years was suddenly overcompensating.  There are no words for that feeling and that is one of the hardest parts.  The are time I want to rename it Pandora, because that is more true to my experience.  It is the fear of all fears, everything you could dread concentrated into one all encompassing box.  It feels like akathisia is a glimpse into Pandora's Box.  What I saw was dark and it changed my perspective.  It left me with an urge to help others and a possible understanding of how this forum came to be.  

 

I'm interested in exploring this subject more in future posts.  I found information from MISSD to be very helpful and usefull to share with family.

 

        

[LivingPast27]

June Setback

When I have an episode I do something akin to a postmortem as I’m coming out of it.  I look back and find out if there is anything to learn from the experience to make things easier in the future.  Over time I think doing this has made episodes shorter, less frequent, and less severe.  Sometimes it is really mundane things like getting back on the right hygiene routine that help.  Then there are other times it is something completely of my control like it was this time. 

The trigger this time was emotional.  It was an appointment gone bad.  Pharma Stooge #3 thought I saw something on social media and contracted a functional disorder. They knew almost nothing about psych drugs or akathisia and were unwilling to listen to a patients experience. I know they don’t understand the patient’s perspective, but gaslighting someone with akathisia seems almost homicidal considering all the warnings.  When the doctors talk about the drugs it is like they are living in a separate reality.  They have their reality with clinical studies and academic articles while we have our own reality of living with the true effects of the drugs.  I think it creates cognitive dissonance and is the cause of moral injury and doctor burnout.  That’s why reading about others with similar experiences helps so much.  Knowing others have had similar experiences ends the dissociation and merges the realities for me.

The depression started immediately after the appointment and the next three days consisted of a bedroom soaked in tears.  I’d made a lot of progress in the Spring so I had a long way to fall.  I have a history of June crashes following that Spring energy and I saw this one coming.  It was definitely a three step backwards month but I was prepared and took action to prevent it from being five steps.  Sometimes I think depression is a sign the body needs to heal so I treat it a lot like I would anything else that needs to heal.  Physical and mental hygiene help keep the injury clean. Nutrition gives the body the tools it needs to make the necessary repairs.  Time can be the hardest part.  Healing is slow and being impatient can just make the injury worse.  This episode lasted about a month.  At the beginning I joked that if I took Paxil the episode would last another 4-6 weeks and then resolve.  I’m not surprised the depression lifted in that time frame, it’s one those patterns that just seems like a natural course. 

I’m improving again and already got back two of the steps I lost.  I’m back to exercising and crossing things off my procrastination list.  There is something cathartic about crossing things off a procrastination list. The ones that sit on that list a long time often have the best rush when you finally cross them off.  I made another appointment with a doctor who may have different training and crossed that off the list.  I’m bringing info from MISSD to explain the akathisia.  I even ordered a copy of Maudsley and plan to bring it to the appointment.  It was a setback, but I'm back to being on the right path.

[Emonda]

You've written some great words above and have an excellent attitude.

 

Time and patience are part of the healing process.

 

2 hours ago, LivingPast27 said:

I even ordered a copy of Maudsley and plan to bring it to the appointment.

 

This is an excellent resource. I took my copy to an appointment and received a blank look...that's ok, it may have made the doctor pause/reconsider after I left.

 

2 hours ago, LivingPast27 said:

It was a setback, but I'm back to being on the right path.

 

We look forward to following your journey.

[Sebas]

On 7/21/2024 at 12:20 PM, LivingPast27 said:

After 27 years of Paxil I realize I am an extreme case and I may be looking at years of healing.

 

Well actually, think you already discovered, you're quite a regular case. Most people quit paxil after 15-25 years, in most cases it eventually looses efficacy. But indeed you may be looking at months to years of healing. Like it would have taken had you tapered in the 'royal way' which you were not aware of.

 

Please adjust your signature for more detailed info about paxil taper and exact month. Also add any other sources you take like supplements. Please keep updates short and to the point. 

 

On 7/21/2024 at 12:20 PM, LivingPast27 said:

I quit drinking without much effort

 

You may also quit caffein and chocolate for the forseeable future. They are well known, as.well as other sources, for disturbing withdrawal process. When CNS has become volatile, the cleaner the better.

 

On 7/21/2024 at 12:20 PM, LivingPast27 said:

but not as lucky finding medical doctors familiar with akathisia and withdrawals,

 

With the advice given on this website we can live without. To be honest most people get dramatic advice from doctors - regarding the subject - often making things worse then they already were. Like adding new drugs to cover up symptoms, which often is a bad strategy. Take control for yourself.

 

Bye Sebas

 

 

[LivingPast27]

3 hours ago, Sebas said:

Please adjust your signature for more detailed info about paxil taper and exact month.

Thanks, that's something I was going to update with more info today.  Some of the meds were either so brief or so long ago that I have a lot of uncertanties on when and what I was taking. I'm going to try to focus on the drugs and dates that I think were connected to past withdrawals.  I had immediate problems when I switched to Paxil CR when it was first inftroduced and that suddenly seems more relevant now.  I also had a shot for nausea during a period of withdrawals in 2007 and that stands out as something important.

 

4 hours ago, Sebas said:

You may also quit caffein and chocolate for the forseeable future.

I've do that a few times every year and reset my tolerance.  It makes some symptoms worse and some symptoms better.  Sometimes I think my caffeine response (other responses as well) might be connected to were I am in my mood (window/wave) cycles.  I've found unfiltered black coffee to be beneficial for my mood and other symptoms.  I eliminated the sugar from my coffee, tea, and chocalate and found that to be very helpful.  

[LivingPast27]

Ruining my recovery in 2014

 

When I started back on Paxil in 2014 I had gone a 2-3 years without Paxil or major withdrawal symptoms and I had also quit drinking for an extended period.  It was because the healthcare law changed and I suddenly had access that I started back on.  I was mildly depressed and felt I needed a boost so I made used of my newfound access to healthcare and sought treatment for depression.  I get hypomanic naturally, but not manic and don’t think I ever needed AP’s. I think they were using those drugs to treat SSRI side effects, not my original condition.  I wasn’t going anywhere near the bipolar meds like Zyprexa again so I abandoned my medical history and said I had social anxiety and a depressive disorder.  I knew my prescription history would get me profiled so hid it.  I was surprised at how easy it was to get Paxil from my primary care doctor.  That’s something that has changed a lot in my lifetime.  I learned how to fill out the PHQ and get the prescription I needed. My doctors usually weren’t accepting my insurance by the time I needed I refill so for five years I bounced around to a lot of random doctors getting my refills.  Some of them hesitated, but they hesitated because of the risk of stopping, not continuing, and ultimately I got my prescription.  That’s how I started back on Paxil after successfully getting off for 2-3 years.  I thought getting back on Paxil was the responsible thing to do, I didn’t want to be labeled as ‘off my medication’ I wanted to be compliant.  So I shot myself in the foot and started back on Paxil in 2014.  I did good initially, but the drinking started almost immediately.

 

That Paxil alcohol connection is something I’m interested in exploring more.  I quit Paxil the way I did because it was the only way I knew to quit drinking. I’ll follow up with an explanation later.

[LivingPast27]

Paxil and drinking have always gone hand in hand for me and the overlap makes a lot of the terminology a little blurry.   I wasn’t a problem drinker before Paxil.  I enjoyed it but I had a different drug of choice.  That changed as soon as I started Paxil in 1995.  Within a few months I learned something that probably saved my life.  I could suddenly consume large quantities of alcohol and needed to avoid hard liquor. I have a lot of anger about the date.  In 1995 teenage patients were learning of this effect in group therapy and seeking medication changes because of it.

Since I started on Paxil in 1995 the vast majority of my depressive episodes can be attributed to either binge drinking’s effect on my body or an emotional reaction to something I did while binge drinking. The appeal was that the Paxil left me in a state that might be called low level hypomania and the alcohol pushed it into something akin to full mania.  I get a feeling that I call a dopamine fountain.  It’s feels a little like an extreme version of a runners high. It is an exaggeration of the same high I get naturally from some healthy activities. That feeling is what I became addicted to.  It felt like on demand high and when I avoided crashes is was a lifestyle that could be very productive. 

The most obvious effect was increased alcohol tolerance.  That makes it easy to glorify my experiences, but you know where I’m headed so I won’t do that here.  That frat boy mentality towards alcohol is dangerous and nothing to glorify or be proud of. I think what matters here isn’t the consumption, but what happens afterwards, the hangover.

From 2014 to 2022 I went through a cycle of binge drinking followed by hangovers that I am concerned may have done some damage.  I had a lifestyle that allowed me to be high functioning at certain times and take a break to heal at others. The hangovers gradually become worse, even when less frequent.  It wasn’t the depression that made me want to quit drinking, it was weird things I experienced during them.  I had no cravings while hungover and not just for nicotine and caffeine, but for the Paxil as well.  I got a craving when I was an hour late on my Paxil and that was gone when I was hungover. 

I started getting movement problems while hungover and it brought back memories of medications like Zyprexa and Haldol that I pretended I never took.  It scared me and I lived in denial for a long time.  In hindsight I wonder if it was mini withdrawals.  I had a long gap without those kind of symptoms, but it I had a movement reaction as a teen and it was on that same ‘circuit.’  It would improve when I avoided alcohol but as long as I was on the Paxil I knew I couldn’t do that.  The alcohol was causing other damage and starting to show up in labs.  I tried to quit both Paxil and alcohol in September of 2021 cold turkey.  It didn’t work and the akathisia had me back on both by the end of the year.  I was switching providers so I got a prescription to last until my summer appointment with a new provider. I had some bad luck and never got another refill.  I stopped the Paxil without a meaningful taper in July of 2022. 

It has been two years and although I’ve seen steady improvement I still have constant symptoms.  What I read is humbling and I wonder about the drinking playing a role in my current state.