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wantrelief

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wantrelief

Hi Brass,

 

I am writing for some clarification.  My symptoms are not tolerable at the moment; I am barely functioning.  I was hoping by staying at this dose I would achieve some semblance of stability over time (which seems to have worked in the past) but it sounds like you are saying I won't?   I can't imagine decreasing my dose feeling the way I am.  I am seeing my doctor tomorrow and was hoping for some input before my appointment.  

 

Thanks so much for your time,

Michele

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brassmonkey

Hi Michele--  I'm sorry of things have gotten a bit confusing, it can get quite tricky having a slow speed conversation via typing.  To me it looks like you're in  tolerance and your last increase didn't help and may have made things worse.  This would mean that any further increases will just cause more of the same problems and could introduce new ones.  It's more than likely that this is the course that your doctor will suggest.  This or a change to a different drug which would cause a whole slue of other complications.

 

In my experience, from my taper and helping a lot of other people in the same situation, "the only way out is down".  It's a very scary proposition.  It will take some time for an positive results to show up, and you possibly will feel worse in the short term.  But it's the only way to allow your body to get the upper hand and start to heal.  Given the alternatives of taking more/different drugs and feeling worse, only to take more/different  drugs, or starting to taper, continue to feel bad but eventually start to feel better, heal and regain control over life, I would choose the latter.

 

Try not to alienate your doctor while talking about it.  If you have to just agree to hold steady where you are.  You will need to keep him on your side merely to supply you the drugs while you direct your own taper if nothing else.  You don't want to be forced into a CT situation because he withdraws the prescription. 

 

I'm very sorry if my explanations have been upsetting, but I'd really like to see you get better than be caught in downward spiral of more and more and different drugs.

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wantrelief

Thank you for your response, Brass and for further explaining where you are coming from.  I don't think the increase has made things worse, per se as the symptoms are the same.  I am wondering if for now I just stay where I am and hope to stabilize as this has seemed to help in the past.  I do see what you are saying and worry about the same - going up hurting more or switching hurting more.  Definitely don't want to add any medications. I am not sure what to do.  Unfortunately I feel rather stuck as for years now I have tried several times to very slowly taper only to crash and updose.  The only time I didn't updose, the symptoms just got worse instead of better.  It seems to work opposite for me as other people's experiences with tapering.  I am rambling here, just feeling pretty hopeless.  But I do appreciate your response and trying to help me.  It really is this situation that is upsetting as I have been dealing with this now for many years, more years of trying to get off these medications than "wanting" to be on them.

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bheb

I also feel rather stuck. It would be so nice if dose changes could consistently and directly correlate with relief. At least for me, I'm past being able to try out different doses (been Prozac cold turkeyed for 10 months). Are your current symptoms worse than other times when you tried tapering?

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wantrelief

Hi bheb,

 

Thanks for stopping by my thread.  My symptoms are worse now than other times when I tried tapering.  I could always tapering successfully but would ultimately "crash" at some point.  I would try to hold but only found my symptoms worsening so then out of desperation, would increase my dose.  Hence, the position I am in now.  :/  

 

How are you doing?  

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bheb

And the increases usually helped, except not currently? I know it's hard when you can't take a direct action (like tapering or updosing) to get relief. 

 

And I've been alternating between weird and bad almost every 20 minutes all today. All my current symptoms are  new and I'm obsessing a bit on how they came about/whether they are worse than what I experienced before. I can't tell if the symptoms themselves fluctuate or if my handle on them/coping fluctuates. 

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wantrelief

In the past, the increases have helped me but it has taken several months (around 4) for me to really stabilize.  Until I stabilize I don't really notice much change in my symptoms, they are just bad and sometimes worse - no window/wave pattern others talk about.  I am still hoping this increase will help me stabilize as it has only been a short time since I increased.  However, that is not a sustainable long term plan as I am concerned I have some sort of tolerance going on with this medication.  My conundrum is that I have not had luck with tapering, even slowly, so not sure what to do.  I guess my most immediate concern is stabilizing and then will consider what to do.  

 

I totally get the frustration you are feeling, particularly if your symptoms are new ones.  You also bring up a good point that it is hard to know if the symptoms are fluctuating themselves or if it is how we are reacting to the symptoms. 

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RachelSusan

Hello Wantrelief,

 

I saw one of your posts on Flowers' page and thought I would stop by to say hello to you.  I am in the middle of a wave myself so perhaps we can be good company for each other?

 

I read your opening paragraph on your page one and your Zoloft story sounded like mine.  It looks like since then though you have truly struggled with a lot more.  I don't know if you will agree with this or not but your struggle reminded me of something one of my doctor's said to me regarding my attempt to get off my medication.  He said I was over a picket fence. I was puzzled at first so he explained that if I go up on dosage I run into trouble, and if I go down I run into trouble. So I then visualized myself laying on the top of a white picket fence with a person on each side pulling me in opposite directions. It didn't do a darn thing to help me but at least I felt someone understood what I was going through. These drugs are such nightmares.  I hope you get stabilized soon.

Best,

Rachel

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wantrelief

Hi Rachel,

 

I wrote back to you on your page but wanted to thank you again for your message.  It is good to have company in this, for sure.  I am a bit embarrassed about my own situation as I keep updosing and not getting any closer to the goal I have long sought out which is to be done with ADs.  I have added Klonopin into the mix too so feel like I've made a mess of things.  

 

Your doctor sounds like he has a good understanding of these medications.  I think down is the way to go if one can do it.  I just haven't been able to do so yet but you are well on your way!  

 

 

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bheb
10 hours ago, RachelSusan said:

It didn't do a darn thing to help me but at least I felt someone understood what I was going through

Hah! That's how I feel about my treatment/most things these days. (Aside from time) I can't be helped, only understood. 

 

And wantrelief, I also feel like I've made a mess of things adding in Klonopin. Don't get down on yourself though, we took it out of desperation : /.

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RachelSusan

Hi Wantrelief,

Thanks for your response as well as the post on my page.  You mentioned being embarrassed because things are not resolving for you. I have felt that way at times as well.  Sometimes I feel that nobody wants to hear about it because it has been going on so long.  I'm trying to get over that feeling, I have so much to deal with in regard to these nasty drugs that I'm thinking I shouldn't be embarrassed. I hope you don't either, not any more.

 

Let's all just keep moving forward, together.

 

xo

RS

 

 

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wantrelief

Ah, thanks so much for your posts, bheb and RS.  I am having a bad morning so will probably be reading your posts over and over today.  

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RachelSusan

Hi Wantrelief,

 

Thanks for posting on my page. It's good to hear from you.  To answer your question I am still experiencing symptoms however they are more mild.  It's been two and a half months since my last taper and I was hoping symptoms would be gone by now, but they aren't.  To further complicate things I found out that Prilosec, which I have been taking, can mess with a taper.  I found that out from Apace41, on this website.  Thank goodness for the information I get here.

 

More importantly though, how are you feeling?  Any relief from your last up-dose? I looked at your signature and saw it was September. The problem with these drugs is that for some of us relief takes months so we don't know if what we have done is helpful for our situation as not. Please let me know how you are doing when you feel like it.

 

Rs

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wantrelief

Hi RS,

 

Good to hear from you!  I am sorry to hear you are still experiencing symptoms but that is great that they have become more mild.

 

I am curious how Prilosec can interfere with tapering an AD?  It is good that you found that out!  Do you have to taper off of Prilosec?  Yes, the information on here is so valuable!  

 

Thank you for asking how I've been doing.....I am not doing very well, unfortunately.  I did just updose in September so I am not surprised not to be stabilized yet as it was not that long ago.  I am scared the updose isn't going to work if I am truly in tolerance as I don't know how I am going to taper feeling this way.  :/  My sleep has gotten worse over this last week too so that has me a bit scared.  I am worried I may have "overshot" how much I went up (well I probably should not have mucked around with the dose in the first place).  Except for sleep all of the symptoms are the same, not better or worse so maybe that is a good sign?  Sigh.  Will just have to keep hanging on and see how things progress over the next few months.

 

I am glad you have noticed an improvement, that must feel reassuring that your symptoms will eventually die down and you can resume your tapering.

 

I hope you are having a good day!

 

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wantrelief

I have been thinking about the concept of acceptance lately and then saw this posting today from Bubble on another member's thread so am copying it here to help remind me:

 

Acceptance is so hard. To just allow yourself to be where you are and not fight against it, not be mad about it, to get past feeling sad or anxious and just let it be, like it doesn't even matter because it is what it is. Acceptance is a struggle for most people. Challenging. Perhaps the most challenging thing a person can do is accept life as life is.

 

We're not taught to accept. Everything society has to offer teaches us to push and fight and never give up, blah, blah, blah, but I've spent too much of my life doing that and really, the best times when things have gone smoothly were when I just accepted things, letting go of the struggle, and allowing them to be as they were without judgment or feeling like a failure or any of the other emotional garbage that society has ingrained into me if I allow, let things be, give up the battle or fight, stop trying to change it or whatever way you want to put it.

 

To most, it might seem like quitting. But it actually has its roots in buddhism, and buddha was pretty damn wise. He understood the nature of suffering and realized the hell we put ourselves through it pretty fierce. Acceptance ends that hell, but letting go of trying to change things we want desperately to change is quite the challenge. It feels like giving up. I'm writing this because I'm in a place where I have to accept something I don't want to accept.

 

I'm floating in uncertainty and who among us likes that? But if I do not accept this and allow life to be as it is and run its course as it will, then I will suffer far more emotionally and add more stress which will hinder my recovery.

 

I'm sharing this because from many of the posts I've read here, it seems we all struggle with acceptance.

 

So I thought maybe a thread dedicated to it, to sharing what we are struggling with accepting and helping each other with that like they do in those 12 step groups (which are quite helpful to a fair amount of people who frequent them) would be something useful and helpful to all of us.

 

A kind of haven we can go to when we are struggling and get support that can help us accept where we are. A sanctuary for the rough times. Someplace that feels safe and nurturing and comforting.

 

Maybe it will help some of us. It's worth a try, right?

 

So for today, I'm working on accepting that I have these tremors that are a sign I have not recovered and it's all so open ended because of that. The when or will I recover is especially scary. But I have to accept that I don't know. I have to accept that life is what it is and I will just have to let the days go by and not give it attention because that will make it worse for me. It is what it is and I have no power over it. Sad as that makes me, that is how it is right now. So I have to accept it or fight it. I choose not to fight. I hope others will join me in sharing here and helping each other through those rough spots where acceptance offers the best path through them.

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bheb
19 hours ago, wantrelief said:

am curious how Prilosec can interfere with tapering an AD

My doctor told me prilosec can interfere with metabolism of SSRI's. She attributed one of my acute akathisia episodes to being on prilosec. Not sure though.

 

I'm also having a lot of trouble with acceptance. When my worst symptoms let up a little bit I have a hard time resuming any kind of life simply because I can't stand the fact that I still feel "off" and unwell.

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wantrelief

Hi bheb - Thanks for stopping by. That is interesting about prilosec interfering with the metabolism of SSRIs and that your doctor thought this was why you experienced akathisia - do you remember her reasoning behind this?  Like too much of the SSRI was building up or something like that?

 

Yes, I totally understand what you mean about not engaging in life because of feeling so unlike yourself.  I too struggle with this.  I am working on accepting the fact that my life is different at the moment rather than wanting it to be "normal", that I am not able to be the way I was for now - so therefore it is ok if I cannot engage in life the way I was before.  I am also trying to use it as a way not to freak out too much about what is going on.  All easier said than done though! 

 

How have you been feeling, bheb?  You mention that some of your worst symptoms let up - I hope that means you are feeling a bit better.

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bheb

I can't remember but it was either that it gave me too little or too much of the SSRI. So either a withdrawal or adverse reaction.

 

I've been really up and down. I got a break from the terror a couple days ago but it has since come back. 

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wantrelief

Oh no - so sorry to hear the terror is back.  It must have been so good to get a respite from it but disheartening to have it come back.  However, I think it is a good sign is that it did go away for a couple of days so it will go away again!

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bheb

Yes I hope it's a good sign. This month has seen a lot of change in my symptoms, good and bad. It's confusing and hard to rationalize but I hope some kind of change is good. Have you started to notice anything positive since your updose?

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wantrelief

I think it is a good sign!  I haven't noticed any changes yet but that is usually the way it goes with me....it takes a long time for anything to change.  My sleep has worsened some nights which I hope is not a bad sign.  I have a long road ahead of me but hopefully will stabilize and go from there.  I am hoping you see more positive changes as the week unfolds!

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bhasski
On 10/15/2017 at 9:22 PM, wantrelief said:

Hi bheb - Thanks for stopping by. That is interesting about prilosec interfering with the metabolism of SSRIs and that your doctor thought this was why you experienced akathisia - do you remember her reasoning behind this?  Like too much of the SSRI was building up or something like that?

 

Yes, I totally understand what you mean about not engaging in life because of feeling so unlike yourself.  I too struggle with this.  I am working on accepting the fact that my life is different at the moment rather than wanting it to be "normal", that I am not able to be the way I was for now - so therefore it is ok if I cannot engage in life the way I was before.  I am also trying to use it as a way not to freak out too much about what is going on.  All easier said than done though! 

 

How have you been feeling, bheb?  You mention that some of your worst symptoms let up - I hope that means you are feeling a bit better.

Very well done and great work for not to panic. 

I am also trying doing same as accepting me as the new me...  coz I dont know how long it will take for me to be old self again.

 

Again well said - " easier said than done".

 

Sorry for hijacking in - just going through the thread and found it well commenting.

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wantrelief

Thanks for your post, bhasski.  So true what you said about not knowing how long it will take us to be our old selves - I guess in that way we do have to accept this as our new selves as we can.  But, indeed, easier said than done!

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Flowers

Hi wantrelief

 

Thanks for visiting my thread and wishing me well.  Your wishes did the trick as my back is much better which means I have been able to get out with my visitors. 

 

I feel so much better being out of the house  - I hardly had any symptoms at all today.

 

How are you doing?

 

Love from Flowers xxx

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wantrelief

Oh my goodness, that is great news Flowers!!  So happy for you!  

 

Thank you for asking how I am doing - nothing new to report.  

 

Have a wonderful time with your friends!

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Flowers

Hi!

 

Thought I'd pay you a visit here.

 

So sorry you haven't seen any improvements yet.  Patience will pay off in the end I am sure! It is so hard though sometimes.

 

Thinking of you and hoping for better days.

 

Love from Flowers xxx

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wantrelief

Thanks so much for your message, Flowers....I appreciate your thoughts and your taking the time to comment on my thread.  I sure hope you are right and patience will pay off in the end.  In reality it hasn't been very long since I updosed - it just feels like an eternity!  I am thinking about you too and hope you continue to see improvements!

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Flowers

Thank you!

 

Hugs

 

xxx

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Flowers

Thanks for your support over on my thread WR.

 

Things are not so great so I am really looking forward to a window again!!

 

How are things with you?

 

Love from Flowers xxx

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wantrelief

You will get there, Flowers....no doubt!  Things don't change much for me day-to-day, it is like one long wave.  I have to hold to hope that my usual pattern of being stuck like this will lift after a few months.....it is just the waiting that is hard.  

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Flowers

If you have come out the other side of a wave before and you know the pattern I am sure you will again.

 

It always takes me a long time to stabilise too. Some people are so lucky when they get immediate results from any changes.

 

 

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wantrelief

I sure hope you are right, Flowers - I am finding it incredibly difficult right now.  I used to get more immediate results many years ago from changes but that doesn't seem to happen anymore.  I worry I may have worn my poor brain out from all of the changes I've gone through over the years trying to get off of an AD but then updosing several times now.  This is all quite scary. Thank you for your supportive words - it definitely helps!

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Flowers

I can only speak from my own experiences but it took me 5 -6 months to see any significant changes when I updosed after being taken off Citalopram too quickly 3 years ago. A lot has happened since then but I am still finding it difficult to stabilise quickly.

 

I don't know if it is how we metabolise the drugs that makes us all different. Are you able to function on a day to day basis?

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wantrelief

Thank you for your message, Flowers.  I remember that it took you awhile to stabilize as well when we first "met" three years ago as we were in the same boat...your story brings me some hope that I will get out of this.  To answer your question, I am not functioning very well....I am not working currently and have to really push myself to do things.  I try to force myself out at least once a day to do something, even if it is just a gentle walk around the block, but I could easily just stay on the couch all day.  I am not sleeping well, food is unappealing, intrusive thoughts, anxiety, etc. I don't feel like myself at all.  I too usually take several months to stabilize so it is still early really to expect too much but, of course, when one is feeling so poorly it is difficult not to be concerned about being stuck in this place.  I am working not to let those fearful thoughts get me down but it is a constant battle. Additionally complicating matters is there is a concern that I might be in tolerance to Citalopram now so I am not sure stability can be reached if someone is in tolerance but all I can do is wait it out and hope that this will pass.  Thank you again for writing me, even when you are in the middle of your own wave - I really appreciate it!  

 

 

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Flowers

So sorry you are having such horrible symptoms.  I have been  wondering if I am in tolerance to Citalopram too  - I have taken it for so long. 

 

Like you say  we just have to wait and see. Hopefully we will get some improvements soon.

 

Well done by the way for trying to get out - that is what I find helps me the most. If I can get out each day I feel I have achieved something now matter how small! I didn't manage it today but will try again tomorrow.

 

Take care and speak soon.

 

Love from Flowers xxx

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bheb

Hi wantrelief. I just said the phrase of your username out loud in desperation, and thought of you, the user. How's it been going the past week or so?

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