Rachelina: in crisis and afraid I'll never get off Paxil

[nz11]

Rachelina sorry you are in this terrible place.

I hope the K doesnt in fact worsen the situation. You dont want to swap addictions while at the finish line.

[PatriciaVP]

If you're needing less Klonopin than last time, then that does seem to be an improvement! Sometimes concentrating on the silver lining, no matter how faint can make all the difference. Hang in there. You're doing so well!

[Rachelina]

I want to give a little of my history here because I'm starting to think maybe this isn't primarily Paxil withdrawal, but just me. So here goes.

 

I first had a breakdown of this magnitude in 2000, before ever taking any psychiatric drugs. I had been depressed for months over a failed relationship that brought up all kinds of emotional pain, but one day I suddenly descended into this abyss of nightmarish depression, derealization and panic that were totally different from the depression that came before. Every minute was torture. That was when I took Paxil for the first time. It helped amazingly well. I got off it after two years with minimal withdrawal. Then took it again after a similar situational breakdown in 2007, at which time I started struggling with agoraphobia. This time it didn't help so well and I tapered by 5 mg per month (interestingly, this is what was recommended by the withdrawal guide at Paxil Progress at that time - they hadn't updated it in years and I only looked at the guide, not the actual forum). Went into the same abyss and after two months off, I reinstated at 10 mg. Started getting support from PP and began a 10% taper. In 2009 I crashed at 4 mg (same unbearable, nightmarish depression) and updosed to 10 mg. Did a slower taper. Made the difficult decision to have a baby while tapering because at my age I knew I wasn't going to get off Paxil before it was too late. Was on around 3 mg when I gave birth in 2011, then had the same horrible crash, which I think was a mix of PPD and withdrawal. Updosed to 5 mg and it helped immensely. Started an even slower taper from 5 mg in 2012, and while I have had plenty of difficulty, made worse by a stressful family situation, I've been doing better and better as I got lower. Until this crash, 2015 had been my best year yet since this all started - I'd made a lot of progress with my agoraphobia, done tons of personal and spiritual growth and had so much I was happy and excited about. Then suddenly, out of nowhere, this. 

 

Not sure why I'm posting all this....I'm just reflecting on my history and noticing that I have always needed a full dose of Paxil to pull me out of this level of suffering. And thinking that maybe this is just part of who I am, and that the crashes in 2009, 2011 and now might not have been primarily Paxil withdrawal, but my own variety of depression that I am subject to whenever not on a full dose of Paxil. And even if it was/is mainly withdrawal, maybe I still am going to need a full dose to get me out of this. It's been almost two weeks since my first updose and one week since my second. I was really hoping I'd be getting some relief by now, but the nightmare just seems to be getting worse. Maybe it will take another few weeks to kick in, but given the level of anguish I am in, I don't know if I can take that gamble. I just need this to end so that I can function and be a mother to my boy.  Any thoughts?

[LoveandLight]

Hope you find some answers. Hugs xx

[Rachelina]

Thank you LoveandLight.

 

To put it another way, my fear is that unlike the majority of people here who went on antidepressants for something relatively minor and never should have taken them, I have legitimate episodes of severe depression that do require medication. That I was doing so well on the miniscule doses of Paxil I've been on for the past few years doesn't mean anything, because this depression hits me in episodes, and as long as I'm not on full dose I'm subject to those episodes at any time. I don't want to believe this. It goes against everything I've come to believe about medication and about myself and about the nature of so-called mental illness. But right now I can't help fearing it's true. 

[LoveandLight]

I have the same fears, Rachelina..I really empathise..as one one hand we have believed the medical knowledge for years..'need these drugs for life', 'chemical imbalances in the brain' etc..and now we find that this isn't true. But whether it's true or not, we just want to feel better!

 

Hopefully you will start to feel better as you updose/stabilise but maybe you also need to find the root cause and look into ways of treating that before you reduce again?

 

It's a horrible predicament to be in. I went on at 17 and I don't know who I am or how I'm meant to be without them. I just know I want to be better and functioning!

 

Hugs and much empathy xxx

[AliG]

 Rachelina '

 

I also have had the same fears , as you . I also went on the medication for depression. Like you it was originally for PPD, so again ,it is hard to tell. What new mother doesn't deal with a drop in hormones , no sleep , little support  and a " crying baby".  In my case ( caesarean), I also had extreme pain /overdosing and infection as a result . Relocation and no support was a factor as well. I was in a new place , in a new marriage, with a new baby  with no friends or family and a husband who was away for weeks at a time. That is when my " drug nightmare" began. However, I'm pretty sure that I had it ( depression)  before, as well, due to my background and upbringing. I think the difference was that I always just got over those periods when I was " down", in a more natural way, without the complication of drugs. Had that continued , I would probably be fine , today . I'm sure that I would have had a few weeks here & there, of being " down", but that it would have resolved itself, particularly with some therapy, meditation, sunlight,  exercise  etc.

 

Now , however I believe I'm 'Iatrogenically " impaired with " rebound depression", from the years of being on the  drugs. I'm not sure what the answer is except to heal with non- drug, lifestyle choices that can take a bit of time to " wrap " your head around. In essence, I'm saying it will take some time. I'm not sure if this helps, but I do believe the answer is to heal without drugs. However it might take a while to achieve this. In the meantime , just keep trying to step off the best way that you can. I know drugs are not the answer, but it could take a while ,to re-establish your " new normal".

 

Ali

[Rachelina]

I'm so terrified this is not going to end. Worst possible depression, panic and derealization. It's day 15 since I updosed to .7 mg and day 10 since I updosed to 1 mg. What are the chances that such a small updose (half a milligram) is going to work? Shouldn't I be seeing some improvement by now? My thinking was that it would work, since around 1 mg is when my drops started being more than 10%. Also it's double the dose I'd been taking, a 100% increase, and percentages are what matters, right? Can anyone give me any hope? Has anyone ever had this magnitude of a crash while tapering and recovered with only a small updose? I'm getting ready to throw away the whole idea of getting off Paxil and go back to 5 mg or 10 mg. 

[brassmonkey]

Hi Rachelina--  I'm sorry to hear that you're still having a tough time of it. Please don't let the panic set in, it won't help anything and will probably make you feel worse.  Ten days is just getting started on an updose, you're going to have to give it several more weeks before you can start to tell.  Your logic is correct about why this is a good dose (1gm) to try for, but going clear back to 5 of 10mg will probably make you very sick and you shouldn't do it.  Give it the time it needs and things will settle down and you'll be fine.

[Rachelina]

Thank you Brass, that is exactly what I needed to hear. I'm going to try and ride this out but it's getting harder and harder as time goes by with no improvement. At least I do get brief windows every few days, and start to feel almost like myself, but it's always gone by the next day. Every morning I wake at 4 with intense anxiety and feelings of doom which get worse as the morning goes on.

 

Thank you also LoveandLight and AliG. Wishing you both healing.

[Altostrata]

Brief windows every few days is promising -- also frustrating. Hang in there.

[dreamspirit]

Hi Rachelina, I sent you a personal message. :-)

[AmyK]

Sending healing thoughts, Rachelina. I believe it will stabilize soon. Many hugs!

[MollyN]

darling Rachelina, is there anything I/we can help you with to support you with your difficult life situation that you allude too? I know I can't cope with anything outside of the most stable of situations, stress makes this 1000x worse. There is a great deal of collective wisdom here if you were able to find the strength to even write about it xxxxx

[Rachelina]

Oh Molly you are so sweet. Thank you for asking. It's really hard for me to write about my situation, I just don't have the courage. Well, I can tell a small part of it, not the main thing though. My husband has several children from other marriages who live with us and they can be very very difficult to live with, particularly the teenagers. They as well as my husband are super messy people and I find that much of my time is spent cleaning up after them. I really need the house to be somewhat orderly in order to feel at peace, yet in spite of my cleaning it's still chaos. And I have had a lot of resentment about this. I have a college degree, I have so many interests, I'm a feminist, I never thought I would spend my life cleaning up after other people. Yet I am unable to work outside the house because of agoraphobia and withdrawal, so I have to accept that this is what I have to do.

 

BUT, this withdrawal crash that I'm in has put an end to all of my resentment and complaints. Compared to what I am going through now, that kind of ordinary unhappiness is heaven on earth. So much love and joy were available to me and I was too bitter and stressed out to open myself to it. And maybe the meaning of this crash is to teach me about gratitude. That as long as my spirit is alive and I have a heart that can love, I have everything. I have vowed never to forget that. 

 

And I am terrified to type this because I'm so scared that maybe it's not true after all, but I think I see the light at the end of the tunnel. I think the updose might be starting to kick in, because I have felt almost like myself for the longest time so far during this crash. Able to feel excitement, interest and love. Not feeling the constant terror and doom. I feel like I was drowning and have just gotten my head above water for the first time. Still very far from land, but able to breathe and able to swim. But I'm still afraid that I'll be drowning again in the morning. 

 

Another thing I should mention is that I've been taking Klonopin every day for close to three weeks and am afraid I've become dependent. I posted about this in detail in the benzo forum; if anyone has guidance about how to stop short-term benzo use I would love it if you could look at my thread and tell me what you think.

[JanCarol]

Hey Rachelina, I'm concerned about your Klonopin too.

 

It looks like you are fully dependent and should not updose K - I'll look at your thread in benzo to see if I can say anything wiser.

 

Please hold your Paxil at 1 mg indefinitely. 

 

Many of us have the feeling that we were "born broken."  Some of it is from childhood trauma (mine is unspecified, as most of it was before I was a year old), life situations, some of us are more sensitive.  You could even take it to the level that the human nervous system is not designed for the chaotic, frightening, demanding and intensive world that humans have built.  (Isn't it just like humans: to build more than we can handle!).  Then there is the mysterious genetic component - too complex to call it a "depression gene" or a "bipolar gene" or even a "schizophrenic gene" - it's more like a predisposition that gets awakened in a certain environment.  We know about the environment, but do not know about the predisposition.  Yes, there's ample madness in my genetic family - but there's madness in my adopted family (who raised me) too!  

 

I do know this:  there's no such thing as a "chemical imbalance" causing depression.  Maybe flooding your receptors with serotonin, trimming neurons etc. helps people - but really, they are a sort of numbing agent.  Maybe you need to be numbed to deal with your life - and it's up to you to choose "how numb."  

 

When you look at depression consider this:

 

Also consider:  are you better off now than when you were on a full dose?  Maybe just staying at 1 mg of Paxil for another decade or two is the answer!  Doctors (and pharmaceutical companies) don't consider how strong these drugs are - and prescribe doses that our nervous systems were never designed to handle.  Maybe if you can stay at 1mg and forget about tapering - you will find your are better, stronger, and just supported enough to begin to thrive.  Maybe it will be 2 mg.  It's your choice!  Just because so many have the goal to "go all the way," doesn't necessarily mean that is the right choice for you.  

 

I'm a big fan of Will Hall, and he doesn't advocate always going all the way off.  Instead, think of it as taking charge of your choices, and choosing to stay where you balance the risk / benefit equation of Paxil for you:  

 

But you won't know until you stop.  Stop bouncing the dose up and then down and then up and up again.  Your taper was linear - 2 then 2 then 2 - dropping my mg instead of percentage.  This makes a straight line of reduction.  I believe it is this straight line (and increasing percentage of last dose) which has made it so much more difficult for you.

 

The SA method is incrementally smaller doses, as it is only a percentage of the last dose in reduction. This makes a more gentle curve, which is sneakier - it "tricks" the nervous system and brain into thinking it's "not enough to worry about."

 

If I were you I would hold at 1 mg.  If, after the New Year (silly season and all), you are still suffering, maybe, gradually, increase - a small dose (.1 or .2) a month apart - until you find a dose you can hold at.  Then, once you've found it - hold there for a year, and try and get yourself to a healthier place in other departments of your life.  I have stopped my taper indefinitely.  I may look at it again next year and see if I want to reduce again, or maybe I'll be on low dose for the rest of my life.  At least I've taken the reins in hand, and don't need to be on this stuff at toxic doses.

 

Sometimes tapering can be all consuming.  You know the feeling?  You are in a public place and you are struggling, and if someone - a friend or stranger - asks, "what's wrong?" - there's nothing you can say.  You're thinking about tapering, and all the complex feelings and symptoms that accompany that.  The planning, the self-questioning, the whole tapering package.  And there's no way someone who doesn't know about tapering will understand.

 

Get to a point on your taper where you can live.  Then hold there, and live.  

[Rachelina]

Thank you for that amazing post JanCarol. You have given me a lot to think about and I'll respond more when I have time. I will certainly take your advice to hold at 1 mg for a good long time. Feeling (relatively) OK today though still very far from stable, and feeling like I'm going to make it through this without increasing Paxil any further. 

[MollyN]

Any lightness is such a blessing and I'm so glad you are getting some let up today xxxx

 

Thank you so much for being brave to share a little - and although you mentioned you no longer find the step children issue so challenging, I did want to validate entirely just how utterly difficult it can be for some stepmoms!! Actually cleaning up/cooking and putting up with attitude as well as sharing your home with people who you may not choose to is really stressful and difficult!

 

I have two teen step kids, who I lived with until they were 15 & 16,. At that stage we moved house and they decided it wasn't 'convenient' to move with us as a family (20kms away) and now instead we are financially crushed by child support. It's a lose lose situation, actually for them it's a win, but for their father it's lose lose.

 

So glad there is a glimpse of an open window for you xxxxxx

[Rachelina]

Thank you for the validation, Molly. Maybe one day we can chat about the challenges of being a stepparent. The funny thing is, in spite of my vow, during my brief windows I find myself getting irritated with them again!! So I guess changing my attitude is not all that easy after all.

 

But all that is once again the very least of my worries because I'm back in it again. Last night was the worst it's been yet. I haven't slept past 3 am in weeks but last night was the worst sleep I've had so far. Woke at 11, took two Benadryl, slept on and off until 3 and then no more. I can't believe that just three days ago I really really thought I was beginning to come out of this. I've been bouncing around on my Klonopin in an effort to take the minimum, but have decided to settle at .5 mg daily and deal with tapering that once I get stable. Please God let me get stable. I'm so scared this is going to damage my relationship with my son, which is the most important thing in the world to me. Already I was not able to be emotionally present for his birthday or Thanksgiving and now I'm afraid I'll still be like this at Christmas,unable to share in his joy. I've been reading stories that scare me, people in a similar situation who were unable to stabilize for months or in some cases not at all. Thinking about Songbird and how she had to go up to 20 mg to get relief from her crash, and worrying my small updose is not going to be enough. Please someone give me a little encouragement?? This site has been my lifeline, the support has helped so much and even reading other people's threads and the wise responses they get is Invaluable to me, thank you all so much.

[brassmonkey]

Hi Rachelina--  I'm so sorry that you're getting hit by a wave, they are so disheartening after having a nice window.  That window is a positive sign that things are getting better.  Hang on to it and it will help get you through this wave.  Please don't get uspet by reading other peoples stories, those are their experiences not yours.  From your signature it's only been two weeks since your updose, it's going to take a while longer for it to kick in.  Don't fight for it, but rather let it happen, same for the wave, let it roll over you and move on. 

 

((((((((((((((((((HUGS))))))))))))))))))

[MollyN]

You are going to be gorgeously well in the future - you just are!! This is not your future xxxxxxx

[AprilShowers]

It's really tough Rachelina, I know. All I can suggest is keep on persevering and don't try to 'solve' or overthink your problem, just accept it and do what you can to sooth it in the now. Hang in there and let yourself stabilise without pressure to be a certain way for a future day. That's what I'm telling myself right now too.  

[ladybug]

Rachelina you are getting better! The fact that you are able to sleep at all is a good thing. I've been going through a particularly bad wave this month, and there have been a few nights where I get an hour or less of sleep and still have to go to work and appear normal. If I get 4-5 hours I consider that good enough. It's brutal but so far I have been able to manage, and you are much stronger than I am so I know you can too. Your sleep will improve once your system settles down.

 

I see you have mentioned Songbird's experience a few times and I've been thinking about it as I'm quite familiar with her story. As far as I can remember she crashed going from 5mg to 4.5mg. She updosed to 10mg and then to 20mg and stabilized. However, I remember quite well her saying that she thinks she could have stabilized at 10mg if she had given it longer, but for her at that time it wasn't an option because she was under pressure to get back to work as soon as possible. That's the only reason she went all the way back up to 20mg. So she thinks she could have stabilized with an updose to 10mg, which is roughly twice the dose at which she crashed at. You have already updosed to twice the dose you were taking. You see where I'm going here?

 

I think you have done a slow and sensible taper so there really should be no need to updose much more than you already have. The fact that you are seeing some windows is a very good sign! Stabilizing is very much one step forward, two steps back but don't let that scare you into doing a huge updose that you probably don't need. You are doing great. Please take the pressure off yourself, by expecting to be better by a certain time. If you had cancer and were going through chemo would you say "Well I better not be tired or throwing up on Christmas day because my son needs me." I feel like we already get so little validation from others that this is a real illness, that we tend to believe this is "all in our minds" so we fail to even give ourselves the validation that we need. You are sick, and you are doing all you can to get better. Even if you are not where you'd like to be for Christmas that is just ONE Christmas out of so many that you will get to enjoy with your little one. You are going to make it. Every day you get through brings you closer to stabilization.

[AussieGirl]

Hi Rachelina

 

Its Aussie Girl. I remember you ffrom  long ago at PP.  I'm back and your thread could have been written by me ! I can identify with so much of it. 

 

I got off at 3.5 mgs a few years back but crashed badly some 8 months later.

 

I reinstated at 10mgs and held there a whole year before re tapering.

 

Im currently back down to 3.5 mgs and will go all the way to zero this time.

 

Like you I am struggling big time since getting back under 5 mgs and at times despair over "what is what "and will I ever be finally paxil free.

 

I just want to say you are NOT alone and I can relate.

 

Hugs xx

[Rachelina]

Thank you so much Brass, Molly, AprilShowers, Ladybug and Aussie Girl! Every word of support helps so much. You are right Ladybug, thank you for talking some sense into me And oh Molly, not just well but gorgeously well! Thanks for that, it reminded me of this September when I had days where I felt absolutely gorgeously well. I can't believe how fast it disappeared. But that aliveness must still be in me somewhere, I know I can get it back. Yesterday turned out to be a bit better after a nightmarish start. The unpredictability of these ups and downs is brutal. But I guess that there are any "ups" at all is a good sign.

[JanCarol]

That's the spirit!

[Rachelina]

I'm panicking again. Three weeks since updose and things only seem to be getting worse. Living each day in pure terror, bleakness, unbearable dp/dr. Klonopin is barely taking the edge off. I do get windows but they are so few and far between and more like just a respite from hell, rather than being able to feel anything positive. I need a plan, I can't go on for weeks and weeks more of this. In the past I always turned the corner after a month tops and that is approaching soon. My family is getting impatient as I become even less functional, soon the pressure will be on to add more drugs or greatly increase Paxil. And if there were a chance of it helping, I would take it. It doesn't seem possible for things to get worse. Sorry to be so negative, I just really needed to vent my fears and grief. Grief that my bond with my son is being destroyed, that I will never share joy with him again, never go to the ocean or woods with him again (my favorite things to do). Any advice welcome. I know I'm getting carried away by that second fear and all the catastrophic thoughts, but I don't know how to stop. I feel like I've never been in such a dark place; in fact I know I have but it has never lasted this long and that is what is terrifying me: that I may never come out of this.

[Petunia]

Hi Rachelina,

How are you feeling today? Are you keeping notes and rating your symptoms? By doing this, you can get a clear picture of how things are going. Its difficult to accurately remember feeling better when we are in a wave, which you seem to be at the moment.

 

Its going to take a while for you to stabilize back on 1mg. Each change made over the last few weeks has added some destabilization and each day back on 1mg is one day closer to being stable again, but as you know, it happens in a windows and waves kind of pattern. It may take a month, or two months or three, steps forward and then some backwards, but always inching slightly closer to that stable state.

 

You have been writing about possibly updosing much higher, but there's no guarantee that will work any faster either, stabilization on any dose takes time. If I were you I would stick with the 1mg a while longer, then when you do stabilize, you will have less to taper from, or if you decide to stay there, you will be on a much safer dose.

 

Have a look through this topic to find some ideas to help you manage as you are stabilizing:  Non-drug techniques to cope with emotional symptoms

[Rachelina]

Thank you, Petunia. After my last post I had two decent days in a row and hoping for a third today. I do keep a detailed chart where I track physical and mental symptoms as well as things like stress, sugar intake, Paxil drops, day of my cycle, and self-care (yoga, meditation, journaling etc). I have been doing this since August in an effort to pinpoint causes of things like headaches and low energy. And it has come in handy during this crash. In my worst times I can look back and see that I had a decent day just a few days ago. But it's also scary, because now when I feel like I may be beginning to stabilize, I can look back and see that just three days ago I wrote "worst day yet." I just counted, and in the past month I've written "worst day yet" or "worst possible state" eleven times. I guess if I can go a week without writing something like that, I'll know I'm making progress.

 

Thank you for the reminder that stabilization will take time. I do plan and expect to hold at 1 mg until stable, however long it takes.

 

Something I think has helped me immensely over the past few days has been rereading Claire Weekes. At PP everyone swore by her but I haven't heard her mentioned here. I knew that catastrophic thoughts and adding second fear was making everything so much worse, but I didn't know how to stop. Reading her is helping me stop. She's like a wise old auntie who reassures me that I'm going to be OK, and I believe her. I've taken to carrying her book in my pocket and rereading passages I've highlighted. Definitely should be required reading for anyone going through a crash.

[ChessieCat]

Just googled and found this on youtube. Peace from Nervous Suffering

CC

[apace41]

But it's also scary, because now when I feel like I may be beginning to stabilize, I can look back and see that just three days ago I wrote "worst day yet." I just counted, and in the past month I've written "worst day yet" or "worst possible state" eleven times. I guess if I can go a week without writing something like that, I'll know I'm making progress.

 

Rachelina,

 

Just a suggestion.  If you can use more objective terms in your journal rather than "worst" or other comparative terms, it would be helpful.  The problem with comparative terms is that we tend to exaggerate the present and look back to the past with the benefit of knowing that "whatever it was it went away or got better."  So, it is frequently the case for many that the current trevails are always the "worst."  In addition, if you've had a window the letdown of going back into a wave can further increase the sense that it is "worse."

 

I don't think you need to go a full week to feel like you are making progress.  The fact that you've had several good days in a row is fantastic and should be a source of encouragement.

 

Best,

 

Andy

[ChessieCat]

Just googled and found this on youtube. Peace from Nervous Suffering

CC

 

Hi Rachelina,

 

I listened to this video from Claire Weekes and I can understand why you are surprised that she doesn't get mentioned here.

 

BTW This video is a lot more than just Nervous Suffering.  Don't let the title put you off.

 

CC

[Rachelina]

Yes, she is amazing isn't she! You do have to get past a lot of old-fashioned language about "nervous illness" but to me that only adds to her wise old auntie appeal. She wrote her book in 1969 and it is still in print for a reason: it works. And it actually applies beautifully to withdrawal. She talks in great detail about how our nervous systems can get sensitized by stress or by some life problem, which then leaves us vulnerable to spiraling anxiety, panic and depression. In our case it was withdrawal that sensitized our nervous systems, but the result is the same and the treatment is the same. It won't make withdrawal go away but it will allow you to ride it out in as much peace as possible. Sometimes I think about 90% of my symptoms are "second fear".....if I can stop adding that second fear, the withdrawal becomes much more bearable. 

[apace41]

This is true of a lot of symptomatic issues as well.  For example, in the case of dp/dr sufferers, I've found that Shaun O'Connor's book on the subject is a very helpful tool.  It is important to distinguish between the trigger -- withdrawal -- and the result (anxiety, depression, dp/dr, etc.).  You may not be able to stop the trigger but there are various useful coping mechanisms and Claire Weeks' works are certainly one of them.

Thanks for sharing.

 

Andy

[Rachelina]

Andy, I will look into that book. Thanks for mentioning it. Dp/dr is a huge one for me. It's my most terrifying symptom by far. But the ironic thing is that dp/dr is actually how I experience fear. Some people get a racing heart or feel faint, I get dp/dr. Then my fear skyrockets and so does the dp/dr. It's a vicious cycle. I'm actually stuck in it right now and trying to remind myself, this is simply fear, it will fade away with time if I don't add more fear to it.

[Rachelina]

Andy, I just checked Amazon for that book and nothing came up. Can you tell me how to find it?