My journey with paroxetine: 8 years of use, fast-tapering, severe PAWS, starting to improve.

[alex01]

Hello dear members of this community. I describe my journey with the drug paroxetine, withdrawal syndrome, drugs and supplements I've tried so far, and what appears to be the beginning of recovery. I'm from Brazil and therefore I'm not a native english speaker, but I tried to do a good job with a little help from google translate.

 

1) Paroxetine (Paxil/Pondera) (2012-2019):

 

2012: At that time, I was quite stressed and had some nervous tics, which made me even more exhausted. I was socially ashamed of tics, it bothered me a lot, and therefore I wanted to get rid of it. I had been doing psychoanalysis for 3 continuous years, once a week, and it was absolutely useless. Since the psychological treatment was not helping, I went to see a psychiatrist. At the end of the first consultation, he told me that I have OCD, not just tics, and prescribed two medications: paroxetine 20 mg and risperidone 1 mg. Commercial names in Brazil: Pondera (Eurofarma) and Riss (Eurofarma) respectively. So, I started taking medication in 2012. 2013 was a year of professional transition for me, I was leaving a salaried job and starting as a self-employed person.

 

2014: I was studying hard for a public tender in my area, and I spent most of my time at home studying. The side effects of the meds were strong, but my OCD and tics had improved a lot, so I was happy with the drugs. The drowsiness/lethargy when waking up was very strong. I would wake up and fall asleep again soon after. As I was working little, and studying a lot at home for the exam, I didn't care much about the situation. But I was completely out of the normal circadian rhythm, shifting from day to night in succession. I was also putting on a lot of weight, gaining 25 kgs (55 pounds) in two or three years. The curious thing about the paroxetine is that it seemed to hamper my ability to analyze or perceive what was going on. My circadian rhythm was crazy and I put on a lot of weight but I didn't seem to notice clearly or I didn't blame the paroxetine. This could also be due to the fact that my psychiatrist never spoke or opened my eyes to the side effects of the drug. Even though I went there often and noticeably fatter. I was chubby in childhood and adolescence, but not in early adulthood. So I ended up blaming my natural tendency to put on weight and not the drug.

 I didn't continue to take the risperidone for a long time, only paroxetine. My psychiatrist insisted that I should take it, because according to him, an antipsychotic would potentiate the action of the antidepressant and would improve my situation. I realized that only paroxetine brought me benefits and I did not continue to take risperidone, despite his insistence. Today I see that I did very well.

 

Every couple of years or so, I would notice that the medicine lost a lot of effectiveness, my tics and ocd would come back. My psychiatrist advised me to increase the dose. So I increased the paroxetine to 30 mg and then to 40 mg. Today, after reading several articles on this site, I understand that my brain was adapting to the drug, as a form of defense. I started to feel a lot of itching all over my body, the back of my hands were red. During that same period, my sister left a kitten she had rescued at my house. I was sure I had a strong cat allergy. After I stopped taking the paroxetine, and the itching and redness stopped, I realized that the drug was to blame. But at the time, I blamed the cat. My eyes would get very dry and red too. During the eight years that I used the drug, I always thought that the side effects were natural things from me or from outside, I rarely realized that it was the drug.

 

2015: My work as a freelancer was growing, and from 2015 I was professionally satisfied. At this point, I thought I had a serious psychiatric problem and could never go without paroxetine again. I had included the drug as naturally as a harmless supplement in my routine. And I was alienated from the side effects.

 

2017: I was very unhappy with my overweight, and started a journey to lose weight. It was very difficult. Today, I see that losing weight while drugged with paroxetine is much more difficult. But I got it. With a lot of effort, I started to do physical activities little by little, which I had stopped, and with the help of a nutritionist, I lost the extra 25 kg. In 2020, I was doing very well physically. In addition, I was noticing frequent cardiac arrhythmias, which lasted for a few seconds, and then passed. During my adolescence, I had had a few similar episodes, which my cardiologist said were benign extra-systoles, probably due to stress. They had ceased, but now with paroxetine they were very frequent. Again, I wasn't completely clear that it was the drug's fault, although I suspected it, and I blamed it again on my natural condition. I only clearly realized that it was due to the drug when I stopped taking it, and the arrhythmias ceased.

 

In 2019, I couldn't sleep properly anymore, I sweated a lot during the night, nightmares, tossing and turning in bed nonstop, sleep was terrible. And paroxetine had lost effectiveness again. At this point, my psychiatrist wanted me to increase the dose to 60 mg (he said you get higher doses for OCD), put the risperidone back on, and put me on a sleeping pill. That's when I rebelled and started to want to stop using the drug. I thought, this guy is going to kill me with so many drugs. And I was certainly right if I continued this spiraling spiral of drugs and side effects. However, I still felt that I needed the drug for life due to "psychiatric problems".

 

More side effects: In addition to putting on a lot of weight, heart arrhythmias, severe itching throughout the body, very dry and irritated eyes, restless sleep and lethargy, I also had severe sexual dysfunction (very difficult to reach orgasm and erectile dysfunction), very dry stools (scratchy, caused bleeding and left me injured), frequent headaches, visual hallucinations (I saw figures), tremors (I felt vibrations as if they were small earthquakes, but there are no earthquakes in my city), postural hypotension, ringing in the ears, and many others. All ceased after stopping paroxetine (with the exception of sexual dysfunction, which improved a lot, but I don't know if completely).

 

2) Fast-tapering (unfortunately) (jan-march 2020):

 

The pandemic arrived and my financial income plummeted. I put all my expenses in a spreadsheet and analyzed where I could cut. Paroxetine was expensive. So, in addition to wanting to stop using the drug, which had lost its effectiveness and had many side effects, I also had financial motivation. In january, I told my psychiatrist that I wanted to stop. I was on 40 mg. He advised me to reduce the dose to 30 mg for 30 days, then 20 mg for another 30 days, then 10 mg, then stop. So I went from 40 mg to 0 mg in three months. I had brain zaps and nausea with each reduction, but they weren't extreme symptoms and resolved after two weeks. I reached 0 mg in march/2020 without serious effects from the fast withdrawal. During the next three months I got really well, I was sleeping better, got better from all the side effects. Little did I know what was to come.

 

3) Severe withdrawal syndrome (start mid 2020):

 

IRRITATION/EXTREME SENSITIVITY: Approximately two to three months after stopping the drug I began to become increasingly irritable. I got irritated and lost control over things that didn't unbalance me before, not even before starting paroxetine. The relationship with my family became more difficult, things that my family members did and said, unimportant things that were not a problem for me before, started to irritate me extremely. Mainly noises. Within months, I was fighting everything and everyone. I was severing relationships and not talking to the people I love most in my life. I was very irritable and felt a lot of ANGER, uncontrollable, it wouldn't go away. I was reacting out of control and emotionally hurting my family members, and then I was feeling overwhelming guilt. This cycle repeated itself for a year, until I decided to isolate myself because I couldn't hurt the ones I love like that anymore. I was isolating myself from friendships too, as many things irritated me uncontrollably and I didn't want to fight with people for no good reason. I was therefore almost completely socially isolated.

My extreme sensitivity and irritation began to cause me problems in my work with my clients. I got irritated by things that never caused me such anger. LThank G'd I didn't have very big losses at work. I think many customers understood the situation as a psychological side effect of the pandemic, and they didn't break up with me.

 

PHYSICAL WEAKNESS: At the same time, I started to get physically weak. By 2019, I had become very physically active, doing physical activities 5 or 6 times a week and being in excellent shape. After stopping the paroxetine, I had no strength anymore! I would go to the gym to lift weights, but my muscles wouldn't respond anymore. I thought it was a nutritional issue, and went back to see my nutritionist. Between 2021 and 2022, I went to two different nutritionists 8 times, tried to adjust the diet several times. There was improvement, yes, but the improvement in strength was not maintained. I could lift weights wonderfully for a week or two, even harder than I had while on paroxetine, but then I lost power completely, the muscles were unresponsive. The pattern repeated itself, I managed to lift weights for a few times, then I couldn't do it anymore, I had to stop for weeks. I currently realize that it must be a pattern of windows and waves. The windows were short and fine, but the waves awful and endless.

 

INSOMNIA: About a year and a half after stopping paroxetine, I developed insomnia. I was tired at 00 AM and slept, but I always woke up at 03 AM and couldn't sleep anymore! And awake at dawn I only thought about bad things, I cried often due to the feelings. If I had to work the next day at 08 AM, I wouldn't have slept more than 2 or 3 hours.

 

By this time, therefore, I was unable to do physical exercises, I had isolated myself from the most important people in my life, my work was beginning to be hindered by my frequent irritability, and I couldn't sleep more than two or three hours, which is desperate. I was extremely sad and was in this situation for two years already. I no longer understood the meaning of life like that. Horrible thoughts crossed my mind. I didn't actively thoght about suicide, but I didn't see the point in being alive like that.

 

Other symptoms: Tiredness throughout the day (my energy levels are much lower), difficulty with speech (both with pronunciation and agility), anhedonia, severe acne on the cheek (it has improved a lot these days), blurred vision (looks like floaters), among others.

 

4) Trying to come back from the rock bottom:

 

2022: Incredibly, it took two years for me to link my poor psychological and physical condition to discontinuing paroxetine. I believe that the main fault for this is erroneous information on the part of psychiatrists. I was never mentioned that discontinuing the drug could cause such effects years later. They only mention the immediate acute effects (first few weeks after stopping use). However, I was still thinking that my psychiatric issues had returned. And I had the low serotonin theory in mind. At that point I already knew all the side effects of paroxetine, but because I was in a terrible situation, I thought I needed to be medicated again. But I no longer wanted conventional psychiatric antidepressant drugs. Since I thought my problem was a lack of serotonin, I began a search for drug alternatives to antidepressants. I went to herbal medicine. What I found the most evidence for was St John's Wort. I read scientific studies that showed robust evidence comparable to antidepressants, but with fewer side effects. So I started it.

 

St John's Wort: In the first few doses I already felt an improvement in my mood and I could better control my irritation/anger. Sleep has improved a lot! However, it did not help the physical weakness. No sexual sode effects. I thought I had found an excellent solution, it didn't help with everything, but it helped with a lot of things and had no severe side effects so far. Until, after two weeks of use, a serious side effect appeared - extreme photosensitivity. I would look into a streetlight at night, and it felt like I was looking at the sun. I looked at a halogen lamp in my office, and I was blind for 30 seconds. I started searching on google, and I found articles reporting that the long-term use of hypericin and hyperforin (active principles) could cause damage to the lens and retina of the eyes. I was so frustrated I would have to stop using the herb. I couldn't risk such a serious side effect. I used it for a total of 70 days at a dose of 300 mg/day, which is a low dose according to scientific studies. But I couldn't go on the way I was and went looking for alternatives.

 

Cognitive behavioral therapy: I had tried psychotherapy three times in my life. Once in adolescence (psychoanalysis) at the age of 12, it did not help me at all. A second time in my early 20s (psychoanalysis again) as I mentioned at the beginning of this text (for 3 years) and it didn't help at all. A third time while on paroxetine (psychotherapy) it didn't help me at all again. But I went to try a fourth time. My focus was on trying to control my irritability/anger. I did it for two months (8 sessions) and it didn't help at all. CBT is a more direct approach than psychoanalysis and I was short of money to spend long periods paying with no results. So I finished my fourth attempt with psychologists without any positive result. Next attempt would be mindfullness.

 

Mindfullness: I took a 3-month face-to-face mindfulness course, one session a week, and tried to practice daily for twenty minutes. After three months, my extreme irritability and consequent family fights remained the same. Without noticing any improvements, the practice of mindfulness became an unpleasant part of my routine, and I gave up. With no other alternatives, I agreed to return to antidepressants.

 

Lexapro (escitalopram): I went back to my psychiatrist and told him everything I was feeling. He didn't mention anything about antidepressants withdrawal syndrome, instead he prescribed me lexapro, saying it would have fewer side effects than paroxetine. He advised me to start with 5 mg, after a few days to increase to 10 mg and after a month to increase to 20 mg. Back then I still trusted him, now I realize he's worse than a drug dealer. I started with 5 mg and didn't increase. I used it for 60 days. Results- 50% improvement in irritability and temper tantrums, 30/40% improvement in sleep, no improvement in physical weakness. In fact it had fewer side effects than paroxetine. However, after two months and even maintaining 5 mg, I felt very tired and prostrated throughout the day, jeopardizing my work routine even more. Currently, I understand that my brain is sensitized by the sudden withdrawal of paroxetine, and even the low dose of escitalopram was unbearable for me. I went to another psychiatrist, who prescribed luvox.

 

Luvox (fluvoxamine)- I used it for 50 days. Results- 40/50% improvement in irritability, no improvement in sleep, no improvement in physical weakness. After almost two months, I was feeling prostrated, not wanting to do anything. There were also some sexual side effects. Because of the few benefits and considerable side effects, I stopped using it.

 

5-htp- My nutritionist, with whom I worked to try to reverse the total lack of strength during physical exercises, recommended 5 htp. I bought 100 mg capsules from Now and started with one capsule daily. I would say it was one of the strongest substances I've used. On the third day of use, I woke up delirious in the middle of the night, I had never felt that before. The feeling during the days was very pleasant. However, after 15 days of use, I started to get very tired, and the pleasurable effect was gone. Results- There was a 50% improvement in sleep and irritation. No improvement in physical weakness, actually worsening. Due to the extreme fatigue it caused me, I had to stop. At that moment, I understood that I was not low on serotonin. I finally understood that the theory of neurotransmitter imbalance as a cause of psychiatric illness was false!

 

I started watching videos on YT on the subject, Dr. Peter Breggin, Robert Whitaker, people facing the problem and I found the Surviving Antidepressants website. I've been reading several articles on SA, including the "basic survival kit- omega 3 and magnesium", as well as the process of reinstatement of the drug that caused PAWS.

 

Paroxetine reinstatement- I reintroduced according to SA guidelines. I diluted a crushed 5 mg tablet in 100 ml of distilled water, stored it in an amber jar in the refrigerator. For 40 days, I took 10 ml of the liquid (0.5 mg of paroxetine). Results- Improvement in sleep 50%, improvement in irritability 30/40%, no improvement in physical weakness. The well-known side effects of paroxetine returned, to a lesser extent of course, as the dose was so small, yet still significantly bothersome. My hope was that it would reverse PAWS, but it didn't. I stopped using.

 

Omega 3- I've been using it for years. I never stopped using it, so I can't assess whether it has a positive effect or not. I was using a brand that had a daily dose of 1400mg (850EPA + 550DHA). I read that DHA is better for the brain, so I recently switched to Now's 1500mg/day (1000DHA + 500EPA).

 

MAGNESIUM L-Threonate- I finally seem to have found a worthwhile supplement. I've been using it for 60 days, one capsule 1 hour before bed (370 mg, 32 mg of elemental magnesium). Improvement in insomnia so far- 40%. Sleep is still restless and I wake up at 3 AM, but I manage to go back to sleep without much delay. Interestingly, I need to get out of my room and go to sleep on the couch in the living room. But without the magnesium, I would wake up and not be able to sleep, anywhere in my house. Improvement in irritability- 40%. There is no improvement in physical weakness. Only side effect so far is a slightly looser bowel, but totally bearable. An important interaction I've already noticed: I can't drink alcohol while using magnesium, my irritability gets much worse the next day. So I cut out the alcohol.

 

Currently, February 2023, 3 years after the onset of severe paroxetine withdrawal syndrome, after many trials and errors, with G'd's help, my family's understanding, and information contained on the SA website, I managed to at least get out of the rock bottom. Of my three main symptoms, magnesium has helped with two (insomnia and irritability). Despite this, my sleep is still quite agitated and with awakenings at around 3 or 4 AM. My physical weakness remains the same, I can't run or lift weights, which were my hobbies and my way of de-stressing and I've needed a good dose of resignation with that for now. I have mood swings and fluctuations in energy levels throughout the day. Due to tiredness throughout the day, I have been less dedicated to work, which has had a negative impact on my income. Anhedonia is present. I think I've had something like a 30% improvement overall so far. It seems that the worst phase of severe withdrawal is over and I have hope that my body will continue to recover.

 

Opinions and suggestions are welcome. Thanks !

 

[Onmyway]

Welcome to SA, @alex01

what a journey. Your doctor kept you on a drug to which you were clearly allergic for years (the itchiness!). I am glad that you found your way to us. Can you pls give us a bit more detail on the dates of the trials of the various drugs esp. the last few years? 

We would count your timeline of recovery from the time you took the last psychoactive drug. A 30% improvement in overall symptoms sounds amazing for that time. You probably kept setting yourself back by drinking alcohol which many people do not consider as a potentially sensitizing agent. Glad you are off of it and I'd advise to stay off for at least a few more years. Caffeine, herbs, some antibiotics, some vitamins and supplements (B and D) also impact the level of activation/anger and overall recovery from withdrawal. 

 

In your multivitamin, can you check that you are not taking massive amounts of the Bs and D vitamin? Many of our members find them activating. 

 

For the sleep problem look at this thread. There are a few things that can help you avoid waking up at 3 am. The tips are all throughout the thread so it pays to read a few pages in to get to the good ones such as - blackout curtains etc. 

The goal now is to keep things stable and wait for the strong symptoms to slowly subside in the windows and waves fashion. 

 

I am glad you found your way here
OMW

[alex01]

Many thanks for the reply, @Onmyway

Answering your questions and observations:

 

- Paroxetine: 2012 - March/2020

- Drugs free (two whole years): April/2020 - June 02, 2022 (severe hellish withdrawal).

- St John's Wort 300mg/daily: June 06, 2022- August 09, 2022

- Luvox 25-50mg: August 08, 2022 - September 27, 2022

- Lexapro 2.5-5mg: October 01, 2022 - December 06, 2022

- 5-htp 25-100mg/daily: December 03, 2022 - December 16, 2022

- Paroxetine reinstatement 0.5mg/daily: December 28, 2022 - February 08, 2023. Despite such a small dose, I decided to do a quick taper before stopping. One week on 0.25mg + one week on 0.125mg (end Feb 22, 2023).

 

Dosages of vitamins B and D in my multivitamin (currently using Now Daily Vits):

Vitamin D 10 mcg (50% daily value as stated on the package insert)

Vitamin B1 1.5mg (125% DV)

Vitamin B2 1.7mg (131% DV)

Vitamin B3 20 mg (125% DV)

Vitamin B6 2 mg (118% DV)

Vitamin B12 6 mcg (250% DV)

Vitamin B5 10 mg (200% DV)

I wasn't taking multivitamins until 3 months ago. So I can assess the impact on PAWS. The impact was not negative, maybe a little positive, but nothing that seems to be helping significantly. 

 

I am considering overall improvement of 30% with the help of magnesium for sleep and irritability. If I wasn't using the supplement, it would certainly be a smaller percentage.

 

Curious fact about alcohol is that it only has a negative effect on my irritability while using it concomitantly with magnesium. Before starting magnesium, I didn't feel any problems. It seems that alcohol eliminates the positive effect of magnesium for a few days ...

 

About caffeine: While using paroxetine (2012-2019), I increased the dose of caffeine I took throughout the day, due to the lethargy that paroxetine caused. A few months after stopping paroxetine (2020), I experienced very strong caffeine side effects. In fact, the first substance to which I credited the hell I was going through was caffeine (I hadn't realized yet that it was severe withdrawal from paroxetine). I reduced the consumption of caffeine, until I stopped completely. However, after a few days on zero caffeine, I started to feel even less energetic, couldn't remember things, very fatigued. I reintroduced a low dose of caffeine in the morning only, and felt better. This was repeated about 3 or 4 times, I tried to withdraw the caffeine completely, I felt very fatigued after a few days and reintroduced it. So, today I'm on a small daily dose of caffeine, I can't be completely without it.

 

A doubt about physical activity and muscle strength - Over the years of using paroxetine, I suspected that my muscle strength had diminished, most notably when lifting weights at the gym. I thought it was my natural problem and I didn't blame the drug. Anyway, I moved on and managed to maintain my physical exercises very well and steadily, even though I didn't think I had the same strength as before. I exercised (running, bodybuilding) 5 to 6 times a week. After stopping paroxetine and going on PAWS, the following happened. In the first few months, I completely lost strength and energy. I couldn't walk 300 meters from my workplace to the subway, I lay on the office floor trying to gather the strength to get home. I was eating little, because I couldn't handle a lot of food, I had lost a lot of muscle mass. When I tried to lift weights at the gym, it was a disaster, I had no strength, that effort was out of the question for my body. I thought it was just a nutritional issue, so I went to my nutritionist. He adjusted my diet, I made a huge effort to eat more food, and the pattern changed. My muscle strength greatly improved and I could lift weights better than when I was on paroxetine, but only during a few strength training sessions. After a few workouts, I completely lost strength! The muscle no longer responds. And I stay like that until I have to stop training for weeks, I lose all the muscle mass gains progress. And then again, when I come back, the pattern repeats itself, I have a lot of strength for 1 or 2 workouts, then I lose all the strength, I barely have the energy to walk home, and I only get strength again after I stop training for weeks or more than a month. I went back to the nutritionist 8 times in the last three years, as I described in the initial report, to try to improve and increase the diet, but the pattern repeated itself, until he told me that he no longer knew the reason for what was happening. And I'm like this until today, with three years of PAWS. I've been struggling with this a lot and I've been trying all kinds of solutions, but nothing changes this pattern. It's hard to resign myself to the fact that I won't be able to do for the next few years (I don't know how many?) the exercises that I've always liked, were my hobby, increased my self-esteem and improved my health. After all, the pattern I described are windows and waves?

 

I will read the articles on insomnia and return with questions and observations.

 

Thanks !

[Onmyway]

@alex01

withdrawal basically means that your nervous system is a bit disregulated right now often in not very predictable ways. It can cause a bunch of neurological symptoms. Weakness is one of them. If you think about it, it makes sense - your muscles need to be enervated by signals from the brain to be able to do their job. If something is not quite right there, they may not get the right signal etc. 

 

I would say in WD listen to your body. (Intense) Exercise can exacerbate symptoms in some people so we recommend more gentle things like walking. 

 

The good thing about WD is that over time symptoms change so you may find yourself better able to tolerate exercise in a few months. 

30% improvement is great. Here is hoping for much more quickly. 
OMW