success Toulouse: 5 years after 14 years of Paxil - success story

[Toulouse]

MOD NOTE : Toulouse's Introduction Topic is here

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Hello all.  I wanted to come here to give my success story.   If you go through my first thread called My Paxil Withdrawal Journey, you can see for yourself the misery and pain that I went through, particularly the first 2 years of getting off of Paxil.  I had so many symptoms,  ones I've never had before.   The main issues I had coming off were anxiety and insomnia.  I've had dizziness, tinnitus, heart palpitations, intolerance to alcohol, and a new allergy which almost killed me.  I used to feel like my brain was 'slipping' out of my skull.  It was a strange feeling. and scary too. Numbness in my fingers, hands, legs. Twitching muscles, twitching hands( I thought I had ALS).  I thought I was dying.  To make things worse I saw a holistic doc who said I had mold illness and put me on these crazy pills and skyrocketed my anxiety and paranoia about mold (it's everywhere btw), it turned out to be false, and I tried to sue the guy, but I wouldn't have made enough to make the lawyer fees worth it.  After that, I slowly focused on my own recovery again, trying to be as healthy as I could.  I had many windows and waves.  Slowly, the windows became bigger and longer.  I slowly started feeling like I had a handle on it.  Then I'd have a few months of very rough anxiety and panic and insomnia and nearly got back on something.  I almost did.  But I decided to try to be patient and gave it a few more weeks.  I'm glad I did, otherwise, I might have gotten back on another SSRI and still be on it now.   But notably, things that helped me were mindfulness meditation and talk therapy.  That really helped calm my brain.   Now I don't meditate anymore since I don't have anxiety, except for when it's appropriate maybe. I started working out again after that 3 year mark.  I started just walking, then I joined the gym and started lifting weights.  The old guys were stronger than me, I had grown so weak.  But gradually I started getting stronger again, and lifting heavier, doing treadmill work, etc.  And eating pretty healthy for the most part (though I still like my cookies and snacks).     I'd say after year 3 I was 80-90% recovered.  I mean, feeling like my pre-Paxil days.  I say today I am 99% recovered.  I think there are some residual things, like I still get some ringing in my ears sometimes.  I still have an intolerance to alcohol, and the new allergies (but admit, those body changes will likely never go away at this point).  but I'm okay with that.   Now I cycle almost every day, I go for long rides.  I never think of my anxiety, or the pain I went through anymore.  It's a distant memory for me and I'm so glad to be here today and able to share my story.      Thank you to the moderators for running this site.  It was the most helpful tool in my journey out of this nightmare.  I wish everyone here the same success I've had, or better, as my journey was pretty brutal for a while there.  Peace and love to you all.   

Toulouse 

Edited September 5, 2020 by Erell
Add link to Introduction topic

[Erell]

Congratulations! Thanks so much for coming back and letting us know you're doing so well.

I wish you a very sweet and sunny life  

[Longroadhome]

@Toulouse

 

well done and congratulations!!!  

always great to hear of another Paxil survivor 

Go out and enjoy the rest of your life drug free and never again plagued with wd symptoms . What a great feeling that must be  ! 
you should be very proud 😊

 

[Cocopuffz17]

Great work!!! Glad to hear you are doing well! Thanks for sharing your story!! All the best in your future !!

[Leo1983]

Hi great news!

Well done!

 

Can i ask you fast tapered?

 

Did you suffer most days for the first 3 years? Then did things improve?

 

How are you now around people and crowds?

 

Again well done 😃

[ChessieCat]

1 hour ago, Leo1983 said:

 

Can i ask you fast tapered?

 

Did you suffer most days for the first 3 years? Then did things improve?

 

 

Toulouse's drug signature answers these questions:

 

Been on Paxil 14 years. 40mg for the bulk of those.

20mg in 2014

10mg March of 2015 - then tapered to 5mg

Then to 2.5 to 1.5 - to 1mg, from Mar-August.

As of August 23 2015, I am flying without a net.  Paxil free!

WD symptoms since tapering mid- 2015:

Short temper, hostile. Brain zaps. Bruxism. Wild vivid dreams  Hives Food intolerance Lump in throat, . Joint pain. Knees, elbows.  Pain in feet. Numbness in hands. Shaking, like I'm cold. Trembling. Tremors, muscle twitches all over. Facial tics. Eye, lips. Head.  Floaters in my eyes. Severe Insomnia (between months 4-5)  then returned from March-October 2016. I'm sleeping better now. Dreams have returned to normal (month 7) High levels of anxiety when around large crowds or in large rooms. Intestinal spasms, heartburn.  Dizzy spells.  Panic/Anxiety Attacks suddenly developed months 8 out.  4 years out, 98% feeling back to normal.  (October 9 2019)

[Cigale]

Thank you @Toulouse for sharing your journey! You are an inspiration! 

[Hanna72]

Congratulations @Toulouse

Loved reading your success story 

You are a true survivor, I am so happy for you.

All the best to you.

 

[arbor]

Thank you, Toulouse--It is so kind of you to share your success.  It sounds like you did a lot, too, to make it happen.

With much appreciation,

Arbor

 

[Toulouse]

On 9/6/2020 at 2:16 AM, Leo1983 said:

Hi great news!

Well done!

 

Can i ask you fast tapered?

 

Did you suffer most days for the first 3 years? Then did things improve?

 

How are you now around people and crowds?

 

Again well done 😃

I think it was over 3 months or so (I have to go back. it was way too fast.).   I'd say the first 2 years were the toughest.  With improvements starting gradually in the middle of year two, but still lots of things, symptoms.  Sleep, muscle twitches,  anxiety.  But by year three I was doing substantially better.  Years four and five, I've all but put the Paxil behind me.  I don't think about it anymore, or the suffering I endured.   By year 2.5, 3, I was better around crowds, able to go to concerts, etc.  Now,  (Pre pandemic) I was going to very large rock concerts.   One thing I can't do is drink alcohol anymore.  I don't know if it's related or not, but around year 2, I found that if I drank a glass of wine (or two beers) I would wake up with a thumping heart, a bit fast, enough to wake me and worry me.  Still happens.  I don't drink often, sometimes one beer.  But more than that, my body can't seem to handle.  Prior to tapering off of Paxil, I could drink whatever.  My digestive system is just more sensitive. (I picked up a rice allergy, which is the thing that almost killed me and I didn't know until 2 years later what actually caused my anaphylactic shock).  I think finding out what caused it, helped alleviate a lot of uncertainty and anxiety in itself (I had 2 dumb allergists, who didn't do a full allergy work up / skin prick, only blood test, which is like 30% accurate and in my case plain wrong).  I have lost faith in holistic doctors from my experience, They made me worse after I made some improvements. Mainly the quack who told me I had a mold illness after doing some obscure tests and putting me on a bunch of weird medications and caused my paranoia and fear of mold to exacerbate my anxiety when it was starting to improve.   I'll never forgive that guy (I can't sue, it wouldn't be enough money to cover the attorney).  So meditation, exercise, eating healthy and time is what I think helped me the most.  

 

I will add that around year 2 I was getting frustrated with the anxiety and depression, the impulsive, bad thoughts I was having.  I almost went back on some sort of SSRI.  I was desperate.  In my case I decided to try to deal with the suffering a bit more.  It may  be controversial, but I found that one tablet of Benadryl helped me during that period if I was having a particularly bad night (sleep or anxiety).  I did this maybe a handful of times, not daily.  This seemed to alleviate a couple tough times for me towards the tail end of my suffering.  Soon after that, I didn't need any sort of help with a pill.  I felt ashamed for doing it, but it is the compromise I made to myself to not get on another SSRI.  I would do whatever it took.   I understand others suffering, they may need to get back on something and try to get off that after stabilizing, I almost did it myself.  But I had come so far, I didn't want to go back, so it made sense to me.  I also found that taking a Claritin in the morning every day for a couple months MAY have helped somewhat.  However, I was having allergy problems, so I wasn't too concerned about taking Claritin (which is much more subtle a pill than Benadryl which will knock you out).   These are little things that may have contributed to my healing, and maybe a coincidence.   

Edited September 7, 2020 by Toulouse
Adding more details.

[brassmonkey]

Congratulations Toulouse.  It's wonderful to hear that you are able to put it all behind you and move on. That's the true sign of healing.

[Armorall]

Thank you for posting, Toulouse! Your story is inspirational and wonderful to hear!

[Naczoz]

Did u have any sexuall side effects like pssd?

[Toulouse]

1 hour ago, Naczoz said:

Did u have any sexuall side effects like pssd?

No, I have not had any effects of that nature.   Mine were mostly neurological (anxiety, dizziness, numbness, tingling, muscle twitching, etc).

 

 

[Toulouse]

23 hours ago, brassmonkey said:

Congratulations Toulouse.  It's wonderful to hear that you are able to put it all behind you and move on. That's the true sign of healing.

Thank you Brassmonkey, reading your posts over the last few years have also helped me along my way.  I wish you and everyone else here a very speedy and complete recovery.

 

 

[Ashyy7552]

Thanks for sharing your story it is comforting to me as I’m in the first year of withdrawal and suffered a lot so I tried a new drug and had even worse reaction then tried original and couldn’t tolderate it so now I’m back to square one and worse off :( I hope I can recover enough to be able to work as this pain and torment plus worry of paying bills/er visit bills is soo overwhelming. 

[waves12]

Thank you for your story and so happy for you that you are doing great now. 

I am 4 years off Ad's and suffer with brutal anxiety everyday and it's got a lot worse over the last 2 years. I feel beaten down with it now. Was your anxiety destroying your life to this degree? I am almost housebound with it now and feeling defeated with very little quality of life. Feel so sad for the loss of who I was,  I came off the meds 4 years ago cold turkey and never been the same since. Perhaps I need to work harder at lifestyle and I would if anxiety wasn't so crippling. I have read your story and see you had anxiety but wondered how bad it was and if you can offer any help surrounding anxiety? Thank you. 

Waves. 

[Toulouse]

1 hour ago, waves12 said:

Thank you for your story and so happy for you that you are doing great now. 

I am 4 years off Ad's and suffer with brutal anxiety everyday and it's got a lot worse over the last 2 years. I feel beaten down with it now. Was your anxiety destroying your life to this degree? I am almost housebound with it now and feeling defeated with very little quality of life. Feel so sad for the loss of who I was,  I came off the meds 4 years ago cold turkey and never been the same since. Perhaps I need to work harder at lifestyle and I would if anxiety wasn't so crippling. I have read your story and see you had anxiety but wondered how bad it was and if you can offer any help surrounding anxiety? Thank you. 

Waves. 

 

The anxiety was pretty bad.  I was afraid to leave the house, or go for walks, or drive.  But I forced myself to, a form of 'exposure therapy.'  A couple walks with my wife I had to turn around, I would feel dizzy, and then feel like I would faint or die.  I think that helped me, not staying shut in and feeding the anxiety.

Meditation was key in calming my mind. It took 3 months 2x daily 20 mins each of mindfulness meditation along with weekly therapy.   I was so bad the first visit, the therapist was afraid of me.  I was shaking, and a wreck.  She had me do a body scan and that calmed me down there.  She really helped save my life I feel.   I highly recommend meditation and therapy for the anxiety.   Calming the brain.  Then doing things that you find peaceful and joyful,  listening to light music,  aromatic smells, cooking, and practicing mindfulness while you do those things.  Then I did light workouts.  Never anything that would overexcite my body or mind though. So no heavy weights, no fast paced, rock type music.  Try not to overstimulate yourself.   I found that happened easily.  I went to an amusement park and between talking to friends, the lights, the loud music, the crowds, the rides overhead, it was too much for me and I thought I was going to pass out. I left to go home. This was during year 3, when I thought I had made some strides.  I'm sorry you're still suffering this way, I went through a lot of that too.  It did eventually lift over time.  I just tried to remember to take each day at a time and not get too down on myself if I was having a setback.  

[waves12]

Thank you for your speedy response. My thoughts have become so negative now and need help with them. I take on board the mediation too, I will do it for few days then give up and then leave it few weeks then start again so I am going to make a strict commitment to do twice a day for 20 mins. I do try and walk but it's more of a 'hit and run' instead of being present and I notice I am doing this alot instead of being present, very hard to be present with racing mind. 

I sadly don't have a husband or partner to support me and many friends stepped away as they feel helpless and I am not good company.

Would you mind me asking what kind of style of therapist did you have and was it for specific past problems or trauma? You don't need to answer this if too personal but it would help me if you can answer a little bit of it. 

I feel cheated of a life currently. I have a son with two little grandsons and of use to them like this and I am missing out so much. Never imagined life could be this punishing in my 50's now. 

Thank you so much again and would so grateful to you for the last questions. 

Waves 

[Toulouse]

1 hour ago, waves12 said:

Thank you for your speedy response. My thoughts have become so negative now and need help with them. I take on board the mediation too, I will do it for few days then give up and then leave it few weeks then start again so I am going to make a strict commitment to do twice a day for 20 mins. I do try and walk but it's more of a 'hit and run' instead of being present and I notice I am doing this alot instead of being present, very hard to be present with racing mind. 

I sadly don't have a husband or partner to support me and many friends stepped away as they feel helpless and I am not good company.

Would you mind me asking what kind of style of therapist did you have and was it for specific past problems or trauma? You don't need to answer this if too personal but it would help me if you can answer a little bit of it. 

I feel cheated of a life currently. I have a son with two little grandsons and of use to them like this and I am missing out so much. Never imagined life could be this punishing in my 50's now. 

Thank you so much again and would so grateful to you for the last questions. 

Waves 

mine was a therapist who taught 'mindfulness' meditation and considered a 'life coach,' but in reality, the same as a therapist who handles all sorts of issues, but primary expertise should be in the depression / anxiety arena.   When your mind starts to race, you go back to your breath.   That helped me, but its not like flipping a switch.  But at least it was a tool for me to use.

 

[Kimboslice]

Hi Toulouse,

 

congratulations on recovery.  I hope like you my anxiety is easing at least a little. 19-20 months off and Like you did I’m starting to get pissed off with the feeling of being debilitated, the perpetual ups and downs, anxiety and constant hungover feeling. Despite this, I should acknowledge I have improved a little over the last 5 months or so which is positive. I’m just becoming so impatient with how healinghappens with such little fluidity. Anyway I wanted to ask if you also experienced withdrawal induced stupidity (Such as: cognitive impairment, problems with word recall and articulation), It is by far the symptom I hate most. It’s as though the circuit in the brain has a breakage, it losses power, cuts off and meaning it can’t complete the job it set out to do. If you did experience anything similar, do you think it was interlinked with the type of anxiety you suffered and Hdid It improve as you recovered? 
 

Thanks.

[Toulouse]

8 hours ago, Kimboslice said:

Hi Toulouse,

 

congratulations on recovery.  I hope like you my anxiety is easing at least a little. 19-20 months off and Like you did I’m starting to get pissed off with the feeling of being debilitated, the perpetual ups and downs, anxiety and constant hungover feeling. Despite this, I should acknowledge I have improved a little over the last 5 months or so which is positive. I’m just becoming so impatient with how healinghappens with such little fluidity. Anyway I wanted to ask if you also experienced withdrawal induced stupidity (Such as: cognitive impairment, problems with word recall and articulation), It is by far the symptom I hate most. It’s as though the circuit in the brain has a breakage, it losses power, cuts off and meaning it can’t complete the job it set out to do. If you did experience anything similar, do you think it was interlinked with the type of anxiety you suffered and Hdid It improve as you recovered? 
 

Thanks.

It's good that you are seeing some gradual progress.  It was slow for me but the good days were becoming more frequent until they became the norm eventually.  I did have cognitive impairment:  losing my sense of direction while driving was particularly scary, I thought I was getting dementia.  Forgetting names, not remembering faces, or the right word.  That came in waves and went away, however, I find when I am overstressed, I will have some memory issues that might last a couple days.  Just last week that happened to me,  trouble recalling names.  I believe that's actually an anxiety issue because when I do get anxiety this might happen, particularly if I'm not getting sleep because of it.   Last week I've had some anxiety rear its head, but it's expected because of high stress at the job, and stress at home with my kids' e-learning and troubles they are having.   But at least the anxiety has a cause, whereas in WD, the anxiety was just omnipresent.   

[Kimboslice]

On 9/23/2020 at 11:03 PM, Toulouse said:

It's good that you are seeing some gradual progress.  It was slow for me but the good days were becoming more frequent until they became the norm eventually.  I did have cognitive impairment:  losing my sense of direction while driving was particularly scary, I thought I was getting dementia.  Forgetting names, not remembering faces, or the right word.  That came in waves and went away, however, I find when I am overstressed, I will have some memory issues that might last a couple days.  Just last week that happened to me,  trouble recalling names.  I believe that's actually an anxiety issue because when I do get anxiety this might happen, particularly if I'm not getting sleep because of it.   Last week I've had some anxiety rear its head, but it's expected because of high stress at the job, and stress at home with my kids' e-learning and troubles they are having.   But at least the anxiety has a cause, whereas in WD, the anxiety was just omnipresent.   

 

Yeah for sure. it’s better than not having any improvements at all so I shouldn’t grumble. It could be so much worse. Sometimes it’s so difficult to keep prospective in the bad moments and remember your moving forward rather than stagnating. The evidence of improvement actually tends to be more obvious than you think if you just make a little conscious effort to look out for it.
 

Over the last couple of days I’ve been out to the pub with the family and even enjoyed a cheeky pint with minimal repercussion, when 3 months or so ago the social aspect of doing this would have been an unbearable. So it has to be thumbs up I suppose. 

 

I know how you feel having driving difficulties. I for one have always regarded myself as a good driver but after WD’s affects on my cognitive abilities I felt like a liability on the road going from from being a natural behind the wheel to a seriously twitchy, robotic like driver almost overnight. It seriously sucks because I LOVE driving. It’s always been a form of therapy for me in many ways. But hey ho what you gonna do. I’ll have to stay with more conventional forms of therapy for the moment. 

 

Word recall (difficulty finding the right word) frustrates me the most. Being expressive / descriptive in conversation, something that has alway been a natural ability of mine Maybe not in an intellectually, but definitely emotionally / socially, has become a chore. It has to be the part of  withdrawal I consider the most infuriating. Dealing / coming to terms with the loss of little things you identify with as self is such a difficult thing to ingest, kinda like “who the hell am I right now”. 

 

Any who, it’s great news you’ve moved on and symptoms like these are problems of the past. I really appreciate you taking the time to answer my questions. It really is comforting.  

 

Just quickly.. gonna ask one more  question if I can. You mentioned your working a stressful job currently. Did you work throughout your withdrawal or have you been able to take on more now your better?

[Toulouse]

I did work throughout, but it was much harder and I needed to reduce my work load by at least half. That lasted a good 5 months or so, then slowly I was able to handle more workload.   

[Sleepless]

Your story gives me hope that I will heal.  Thank you for posting it.

[freeaway]

I loved your story! Thank you for your inspiring success story! It is making my journey much more hopeful.

I think having hope in times like this is the best medicine or cure for our healing.

I truly wish the best and great health rest of your life without your medication. 🙂

 

 

 

[PsychologicalSafe15]

@Toulouse how long did it take for your vivid dreams to disappeare?

[Toulouse]

Hey everyone, just updating, it's been EIGHT YEARS off Paxil now. I have been doing great and have been really stable since year three or so.  I still get anxiety from time to time but it's very manageable and usually if I drink too strong or too much coffee.   I do get slight dizzy spells when the anxiety ramps up, but they're like short bursts, almost like the brain zaps we all know.   I also wanted to report that I had a very tough year with work, just working a lot more than usual, stress deadlines.   I was getting muscle twitches all over my body, particularly my dominant but also legs, arms, intestinal. That lasted a few months and abated after my schedule eased up.  So I think that's the sort of residual WD effects that I'll probably just have to live with when I'm over stressed.   

 

I think the damage is evident, that it is from the Paxil usage.  So now my nervous system is hyper-sensitive.  There's nothing that can really be done to fix that sort of thing, maybe even MORE time, but at 8 years, I'd say this is as healed as I'll get, or close to it.  However, I haven't meditated in a long time (years).  I am thinking of taking that back up, actually tomorrow, as I have pulled out my yoga mat and have it set out.   

 

But honestly, I'm doing great mostly and living a normal life, but there are small reminders here and there of the trauma the drug has caused me.  But overall, I would say I'm happy and consider this a very good outcome, considering how worried I was in years 1 and 2 that I'd ever be the same again.  So, keep trucking.

[arbor]

Thank you @Toulousefor coming back and giving us an update.  It is truly a kindness.

Sending you peace and well-being,

Arbor