Erell: struggling with paroxetine

[Dutch]

Hello Erell

 

Like the others, and even if you're going through hell, I really think that you’re healing. Look at Stevie Lewis, her story is very similar.  She quits 3.56 mg. of Paxil cold turkey.

 

These were the consequences for the next four years (see https://busnes.senedd.cymru/documents/s77369/Profiadau%20Personol%20Saesneg%20yn%20unig.pdf):

Frequent episodes of uncontrollable muscular jerking (daily in the first year)

Frequent uncontrollable weeping
Daily waves of terror/Extreme anxiety
Daily nausea and diarrhoea

Intense pressure in head as if skull being crushed
Tinnitus
Hyper-sensitivity to light, sound and touch
Insomnia (around an hour’s sleep a night for the first 18 months) Electric shocks in the head, especially at night

Agitation (probably mild akathisia – inner restlessness, a common side effect of psychiatric medication)
Palpitations
Extreme weight loss (22 pounds in first 10 months)

Persistent aching muscles and joints, muscle weakness, muscle spasms

Constant feeling of impending doom
Phobic style reactions to foods/liquids/chemicals/smells/supplements/medication

 

After four years the nightmare began to fade and it took her another year before she felt COMPLETELY normal again (see https://www.dailymail.co.uk/health/article-6228645/Now-doctors-wake-dangers-patients-hooked-depression-pills.html).

 

Her tips for those who are going through WD (see https://rxisk.org/side-effexor-withdrawal/)

 

"– get all the chemicals out of your system slowly and steadily.

– accept you are going to be ill for an indeterminate amount of time. I had to live with and through the terror, the phobias, the extreme jerking to get to the other side of it, there was no alternative.

– believe your nervous system (and whatever other bodily systems have been compromised) will heal once it is left to its own devices, and most if not all mystery and/or unpleasant symptoms will go

This means avoiding “taking” anything – most pleas for help usually are framed around “what can I take today to make me feel better” and the answer has to be – nothing.

That’s your body. As for your mind, you have to learn to befriend the fear that you might never get better, as anyone with chronic illness does. This is a long game, which no-one wants to hear."

 

You will get better Erell! Please keep going, you will do it to the other side!

[Margaret1]

Erell,

I, too and coming off of paroxetine. I read in a book that the company that manufactures this drug disregards the withdrawal process. You are going through and will go through tough times off paroxetine. It makes me feel like I am dying. But the thing is, I am returning to life.

Thanks, Be WELL,

Aimee

 

[Vasherr]

I also wanted to chime in and tell You that You are one of the strongest people I have seen, You are an inspiration to many and deserve happiness, which You will surely get in time.

 

Wishing You a lifelong window!

V.

[getofflex]

Erell, I read through your last three posts.  Just know that I'm on your side, and I truly and passionately wish there was something I could do to lessen your pain.  For whatever it's worth, I think about you and pray for you every day.  I'm very glad your parents are supporting you at this time, at least physically.  I'm glad you will speak to Baylissa again.  She has a very soothing and comforting quality about her, and if nothing else just the emotional support may help a lot.  Please don't give up!  We are all here for you. 

[Krisseyb]

@Erell

I’m so sorry you’re having a rough time! My heart goes out to you, because I have had many similar symptoms over the last couple years on my journey to healing. 
One thing that has helped me tremendously is EMDR therapy. Have you heard about it? 

[Erell]

Thank you for your support, I appreciate it, although I don't know what to answer. 

I don't know what to bring to this community in this state.
And I come less, because am afraid that that people will think: oh yes, there really is something wrong with her, what she describes is wrong, or she should be better at this stage.

 

And I don't want to fall into the "I'm the worst case" speech, because that thought wouldn't help me, plus it might not be true, and there's no point in thinking that, no medal to be won. 

 

But sometimes even success stories provoke this thought, when I read about people who may have experienced similar symptoms, and then I realise that these same people were able to go to work, drive, go to the grocery stores. Or when I read that these people had these awful thoughts/impulses and physiological terror but not for 2,5 years, or not constantly.
Far be it from me to minimise their difficulties, I know only too well how terrible this process can be and I have no doubt that they had to summon all their strength to be able to do it. But I feel so far from those abilities, and so far from those possibilities when I see how much worse I have become, and how the intensity is high and pervades everything.

This is one of the hardest and scariest phase I've been through since I started this process.
Beyond words. October was hard, November was hard, December is hard.

 
Every minute I am overwhelmed by terror and by the feeling that I am losing control, I am constantly assaulted by images and thoughts of horror and above all the cold sensation of imminence or the feeling that it is happening or about to happen, that I am about to do something terrible and there is nothing I can do to stop it. The intense physiological feeling of impending doom is unbearable and I need to escape my body and mind, but I can't.
Being with people is incredibly hard as my mind is torturing me. I have other symptoms, but nothing as intense as this.

 

I know people say you shouldn't compare yourself. I know we say you shouldn't feed the fear. But the feeling of imminent danger is so intense that I feel like I have to be on guard to prevent the worst, feel like I have to be afraid to make sure I stay in control. The feeling that my vigilance, the fear, allows me to ward off the fate, to avoid the danger. 

 

I cling to the hope that it will stop. It's incredibly hard to feel like you're in the scariest wave after so long. Where does it end? How much worse can it get?

 

I can't believe I wrote that I was starting to see progress in the spring of 2022. I can't believe that it was easier to live with the physiological fear and these thoughts. The intensity was probably lessened. What a delight!

 

I need someone to keep telling me that no, I'm not going to lose control of my body, that nothing is going to happen, that there is no danger, but no one can do that, and no one has to bear that responsibility.

So I reread your words already written and I repeat these sentences to myself. Thank you for these words. ❤️

 

I thought I would come here only to thank you, and finally I wrote.

It makes me feel that I am still connected to something, that I can still be part of a community, can still be with people, even if it's on a screen.

 

I hope to come back soon to provide a positive update ☀️

 

 

 

[mstimc]

My dear Erell

 

Nobody here thinks you are weak or should be doing more to recover.  You are doing the best you can.  The same negative thinking that is giving you thoughts of impending doom are also making you judge yourself much too harshly.  We all recover in our own time.  You will recover and all of this will be a bad memory.  We are all here for you and support you. 

[brassmonkey]

Today is the winter solstice. For many it marks the beginning of a new period in their life. It is a time for letting go of negative energies and trauma of the past and opening oneself to the possibilities that are ahead.

 

One ritual that can be done today or in the next few days is to gather, express and release the dark thoughts that can oppress a person. This is done by actively thinking about those thoughts, not experiencing them, but rather observing them, what they are, how they make you feel, and what they mean to you. Next is to write them down, this can be a fill description or just bullet points. The important thing is to get them down. Once they are on paper then banish them from your mind. Take the paper outside to a safe place. Keep it folded so you can't read it. Concentrate on the paper for a moment and then light it on fire. As if burns let the relief flow over your body as you sent the negativity off into the universe. When the flames have stopped grind the ashes into the dirt with our foot and verbally acknowledge that the thoughts are released and will not trouble you anymore. In the next few days, if the thoughts try to come back, tell them "I have let you go, you have no power over me, you are not welcome here". Again, let the thoughts disperse into the universe.

 

It sounds very "new age", but I have used it myself many times and have seen if be very successful with many people I know.

[Sebas]

Dear Erell,

 

"This is one of the hardest and scariest phase I've been through since I started this process.
Beyond words. October was hard, November was hard, December is hard."

 

Just for some support; This goes for me too. I've been struggling since 11/2019 but august, september, oktober and november, were really tough. Felt like a junky, cold, labile, sick to the stomache, laying down, sudden weightloss, food intolerances etc. 

 

@Phoenixmamahas also been in a really bad wave with these intrusive thoughts. As soon as the window came 

her mindset radically changed for the better. Isn't that right Phoenix?

 

It's actually our thoughts, fears and mindset, driven by circumstances, that sometimes make things even worse. Unconsciously. We must try to steer them in the right direction. 

 

We are all here to help eachother and we will. Don't compare yourself with others, your way to intelligent, characteristic and unique. And no 2 situations are the same.

 

Wishing you: mindset, perseverance (as in: topsports), silver linings, the self-esteem.you deserve. 🎅

 

With these pointers and the ones in threads above this horrific wave will eventually pass. 

 

Au revoir,

 

Sebas

 

 

[getofflex]

Erell, I just want to reassure you.  This WD is horrible for many of us.  It is probably the hardest thing most of us will go through.  I want to reassure you that you have endured these bad thoughts for months now, and you have not actually carried them out.  You have not lost control of your body yet, so I see no reason why you would lose control of it now, or in the future.  Please hold on to that thought, when the fear and horror get really bad.  Try to take this just one moment at a time.  When things got really bad for me in the past, that is what I did.  What helped me, was to do simple physical tasks to distract myself, and take my mind off the negative thoughts.  I, too, was plagued with dark, awful thoughts.   Keep telling yourself over and over "this too shall pass", "this too shall pass", because it will.  I continue to send loving thoughts and prayers your way.  

[wantrelief]

Dearest @Erell:  I am really sorry you continue to suffer so much.  I feel terrible that this wave continues to beat down on you and am in awe of your strength, courage and perseverance; I know these qualities will pay off, you will come through this.  You are in my thoughts and heart. 💖

[Erell]

Thank you for the support, the ideas and the words.
I really like the idea and the symbolism of the solstice and renewal. The longest night is over, the light will gradually return.
I am still in this "acute style" never ending wave with high intensity physical and mental symptoms that plague me 24/7. 

But I read a sentence yesterday that stuck in my head:

 

“If fear of yourself was your gateway to psychiatry, faith in yourself is the only way out.”

I don't know yet how to cultivate this faith in myself, but this is the path I want to learn to discover.

I'm not sure how to reconnect with my intuition, my gut, or how to learn to have faith in myself while living with constant physiological adrenaline, dissociation and those thoughts/impulses, but I can feel the truth in this sentence.
So I'm going to learn to nurture this faith in myself.

Thank you 🙏

[Rosetta]

Hi, Erell,

💜💕💛💙 I’m thinking of you.  I hope you are getting some relief at times.  
All my love, Rosetta

[Sleepan]

Dear @Erell .  I feel a kinship to you. I had similar moody experience in the same months than you in the last year, first good last Spring, then all bad in Fall.  Life is always about continued change.  I'm hopeful for you and for me.  I'll pray a rosary for you tonight.  Sleepan.

 

 

[Altostrata]

6 hours ago, Erell said:

I agree: I don't see how it could be useful once the mess is done.

However, having decided last October to do a very long hold, I have a question: my prescriber seems to have discovered his "new toy" with these tests recently and insists on the importance of doing this test to every patients (not covered by insurance in my country!).

Switching to another molecule that a possible test would recommend is out of question for me, but he did scare me about a possible cumulative effect if I do a long hold: I shared with him that I had found a psychotherapist to work with from January on my fear of intrusive thoughts, and his answer was: “That's great, but if you are a poor metabolizer and if it's a side effect, it will keep on increasing anyway”.
(Just when I share that I need help, he finds nothing better to do than to reinforce my fear, great!)

Anyway, as I don't trust doctors anymore, I've done some research the last few days, but don't really understand what I read and what is exaclty our contemporary knowledge on this subject.
What about these tests in case of a long hold? Does this test mean that if a person is a slow metabolizer, the level of the drug in the blood just keeps increasing?

 

 

Hello, @Erell I responded to your post in the genetic testing topic.

 

Which symptoms does your prescriber think are an adverse effect of the drugs you're taking, and of which drug?

 

If you're a poor metabolizer, the plasma blood level of a drug is maintained longer, and the drug tarries in your liver longer. Theoretically, a reduction in the drug would relieve adverse effects arising from this -- you would feel better if the drug were reduced.

 

This has not been the case when you reduced Prozac or diazepam. You have been taking both at the same dosages since June 2021. Have you experienced a buildup of symptoms?

 

I do not believe your prescriber has any idea what's happening, and is grasping at straws for a solution.

 

 

[Erell]

20 hours ago, Altostrata said:

If you're a poor metabolizer, the plasma blood level of a drug is maintained longer, and the drug tarries in your liver longer.

Thank you for this clear explanation: it makes a lot more sense than what I understood from my doctor's speech, which implied that the drug concentration would keep increasing and increasing if the person was a slow metabolizer.

 

20 hours ago, Altostrata said:

Which symptoms does your prescriber think are an adverse effect of the drugs you're taking, and of which drug?

He doesn't "believe" in withdrawal for more than 6 weeks and conceptualises things in terms of possible side effects (in my case, hormonal chaos despite normal test results and intense "ocd-like" symptoms + constant adrenaline since the switch).

But, as you said, reduction in drugs should reduce the level of side effects, which I thought was the case in the spring of 2022 when I was making small drops and starting to see improvements, but having fallen back into an "acute-like" wave since August/September 2022 with an explosion in the intensity of my symptoms, with no signs of improvement or respite at the moment, it would seem that this is not the case in my situation.

 

21 hours ago, Altostrata said:

I do not believe your prescriber has any idea what's happening, and is grasping at straws for a solution.

I agree with you, and honestly, I mostly use him only to get the prescriptions I need.
However, his speech about genetic testing and the possibility of my condition getting worse while holding if I were a slow metabolizer worried me because I find it hard to understand the articles I read on this subject and so I find it hard to understand what is relevant or not in what he says, so thank you very much for agreeing to answer.

I would like to take this opportunity to wish you and anyone else who passes by a peaceful new year in 2023.

[Altostrata]

Best wishes for the new year to you, dear @Erell

[sunnysideup69]

Dear Erell, it's been a few months since I dropped in here. I want to wish you a happy and very peaceful, healing 2023.

Lots of love xxx

[Carmie]

Hi Erell, 

 

Just wanted to let you know I’m thinking of you and sending hugs🤗

[SeekingMeaning]

On 1/1/2023 at 5:31 PM, Erell said:

I would like to take this opportunity to wish you and anyone else who passes by a peaceful new year in 2023.

 

I stopped by after a long gap away from the forum but you were someone who I often thought of in my absence, to wonder how things were going for you.  I wish you all the best for 2023 also.

[wantrelief]

Dearest Erell:  I wanted to let you know that you are very much in my thoughts.  I hope you are doing okay and have gotten some reprieve. You are a special person and I hate that you have been going through such a difficult time.  

 

Much love to you,

WR 💖

[Heath]

Hello Erell !
Hope you are having a good day! 
sending prayers and good vibes your way! 

[Greatful]

@Erell  Sending you love and encouragement♥️

[Rosetta]

Hi, Erell.  I’m very sorry for what you have been experiencing.  How’s goes it?

[getofflex]

Hello, Erell.  I'm thinking about you.  How are you doing?  

[Oaktree1]

Hi @Erell

 

I haven't felt up to posting much over the past few months but I have been following the extreme symptoms you have been experiencing.  I really hope that you are hanging in there and that spring has brought a bit of a let up for you in your symptoms.  As Getofflex wrote earlier 'this too shall pass' even though it might take a long time to pass.  I don't know where you are in France - for myself I find nature good to calm myself down a bit - just looking at something - a hill or tree or if you are near water - just to look at that.  That paroxetine you were on is the worst really and you were on it a fairly long time -  I was on it myself in my 20's -  thank goodness you are off it now and bridging on the Prozac.  It may take a bit longer to get over the worst of the symptoms.  Please know that I am thinking of you and wishing that you get a bit of relief and peace soon.

 

Oaktree1 

[Rosetta]

I’m thinking of you, Erell. - Rosetta

[Erell]

Hello,

Thank you for your thoughts, I apologise for not updating since December. I don't really know what to reply.

I'll soon be 3years since my prozac bridge, and these last 7 months have been the hardest with worse and new symptoms. If someone had told me that the third year would be the hardest for me in withdrawal.

I haven't touched anything since last October, because despite making only very small drops of prozac, it didn't seem to help . And after 5months of holding, it is not getting better either.

In January, I considered taking paroxetine again in the hope of regaining some semblance of life (which sounds weird knowing that paroxetine has robbed me of so much), but after 3 years I know the risks are very high, so I didn't.

I would have hoped to be part of the healing stories, but by deteriorating as time passes since stopping paroxetine, my story is just absurd, so I try to stop hoping and I learn to resign myself and to expect nothing more from life, it's easier and hurt less.

I made a promise to my family, so I just wait for my days to pass.

That's why I haven't replied sooner, I don’t find something in myself to give and I don't feel optimistic anymore.
But I always think of the members of this community with great tenderness and wish you very sweet days ❤️

Edited April 4, 2023 by Erell

[mstimc]

My dear Erell

I, too, was on the verge of giving up hope and resigning myself to mere existence.  I would have done anything to just be able to feel...nothing.  No anxiety, no joy, no fear, no excitement.  Just nothing. But I realized part of the healing process, no matter how long it takes or how awful it is, is to slowly regain all our feelings, good and bad. Withdrawal and anxiety make it seem like it will never end, but over time the intensity fades away.  it took me about three years to recover as well, so just know in your heart you can recover too. 

 

And be kind to yourself.  During WD, we do often judge ourselves because we're not recovering "fast enough".  We're not in a race, and healing will come. Positive thoughts from across the Atlantic!

[Greatful]

@Erell  My heart goes out to you....I think of you often and hurt along side of you....I can so relate to this

That's why I haven't replied sooner, I don’t find something in myself to give and I don't feel optimistic anymore.  

This is a very very trying experience. You are a beacon of strength to me.  I also suffer with the worst thoughts/fears/phobias....I tell myself that I am not alone in this regard.  Erell is clomping along in this terror as well and making it to her pillow every night.  One day this will pass, it has to.....

Please know that I am right there with you♥️

[wantrelief]

@Erell:  Oh I am so saddened to read your words and that you continue to suffer so. I think of you often and you are very much in my thoughts and heart. I have really missed your beautiful presence here.

 

I can understand how you feel after struggling for so long with such intense symptoms, that you no longer feel optimistic or have hope that your situation can change. You must be completely exhausted.

 

I am not going to lie - I too struggle quite a lot with having hope and optimism for myself. But deep deep down I do believe change is inevitable, that healing will come no matter what one's story may be or how difficult the struggle. All that to say that I am holding onto hope that this will change for you even if you can't feel that at the moment.

 

I am sending you lots of love,

WR 

[Catina7]

Sending you a tight hug and healing thoughts.  Remember, if we think we can...we are right.  If we think we can't...we are right.  Keep fighting with everything you have.  How do you not know that better and brighter days are ahead?  ❤️

[Oaktree1]

Dear Erell,

 

I haven't corresponded with you very much but I know from following your posts that you are a very beautiful person.  

My heart sank as I read your post to know of the suffering that you are enduring.  I am sad to hear that you feel so hopeless and defeated.  I don't believe in God but I like the phrase 'blessed are the poor in spirit for they will be comforted'.  In purely human terms, there is an outpouring here of concern for you because of the help that you have given to others.  Please take heart from the other posts here advising of similar long trajectories to health.  It may seem indeed that things seems to be worse three years into a Prozac bridge - but you were so long on Paroxetine - please hang in there.  Look at the sheer outpouring of affection and I go so far as to say love for you here from people who are routing for you.  There is such good sense on the replies.  I really hope that things turn around for you soon and that you get a bit of respite.  

 

Oaktree

[Sottana]

Erell, I’ve followed your story for a while and I relate to your situation more than just about anyone on this site. I don’t have the energy or will to give a long response, but no you aren’t alone. Not at all

[Greatful]

@Erell Thinking of you and sending you courage and strength....🌞   I am so relieved to see that you are still visiting the site and making it to your pillow every night. You may not have the strength to correspond and that's okay,  just remember you are in many peoples hearts 🌞

Edited April 22, 2023 by Greatful

[getofflex]

Erell you are in my thoughts and prayers every single day.  I know you are going through a very long wave at the time, and I truly wish I could do something to make it better.  Please believe me when I say someday this will come to an end.  Just keep hanging on.