☼ Petunia: recovering from 13 years of antidepressant use

[Petunia]

The beginning of this month was my 5 year anniversary of being drug free, and I've been meaning to update, but I haven't known what to write. This year so far has been much of the same very slow progression towards increasing recovery.

 

For anyone reading this update who isn't familiar with my whole thread, my brief history is that I didn't taper properly. I'm in what is poorly termed as protracted withdrawal from a much too fast taper after 13 years of SSRI use, followed by 2 - 3 years of various other drug trials and failed reinstatement attempts. The proper functioning of my brain and nervous system collapsed completely, leaving me with only the basics for survival, and that's what I've been recovering from.

 

Most of my original horrendous symptoms have gone completely, although in waves they can sometimes return as very mild versions of what they once were. I'm still getting regular waves, but now they tend to last for days rather than weeks or months. In between the waves, there have been no windows since those amazing 3 - 4 months in the middle of 2016. But I have a slowly rising baseline of milder symptoms which are not out of the 'normal' range of what I used to feel sometimes before I ever started taking these kinds of drugs.

 

My average baseline day is like a bad day pre-drugs, disturbing dreams, waking up with hangover type feelings, anxiety and mild dread, badly needing coffee, which I can no longer tolerate, gloomy thoughts, not wanting to get out of bed, all this lasts anywhere from 2 - 5 hours. As the day progresses, I usually start to feel better, and often, by evening I'm feeling great, apart from being tired. Fatigue is something which is always with me now, even when my mood is good and I'm free from physical symptoms. I rarely have the energy to put my better feelings to much use, but its ok, I would rather be feeling happy, content, relaxed, and tired, than what I went through during the early years of this. I have confidence that as I continue to recover, my energy levels will improve. One obvious improvement is that I'm now motivated to do more things, I'm starting to feel enthusiastic about various projects and activities which interest me, two years ago I was scared that I would never want to do anything ever again, everything seemed completely meaningless. But my passion for life is coming back, when my energy levels catch up, I think I will be ok.

 

Some of my continuing symptoms include fluctuating cognitive issues - memory, word recall, multi-tasking, problem solving, executive function. Cycles of sinus issues, jaw and teeth problems, I'm still very vulnerable to increases in stress. Blurred vision. Light sensitivity. I'm actually still very sensitive to everything and get easily overwhelmed/irritated when there is too much stimulation around me. I still have constant tinnitus in the middle of my head, but I used to have a secondary tone in my right ear too, but that only comes occasionally now, usually when I'm having a bad day...and of course, fatigue and limited energy. Slight DP/DR persists, especially when I leave the house, it can still get fairly bad sometimes in grocery stores and visually stimulating places. Its not so bad during quiet times when there are fewer people around.

 

As far as the actual symptoms go, I would estimate that I'm about 75% recovered. But a lot of my problems now come from all the secondary effects of having gone through the trauma of having to endure extreme symptoms for such a long time, mostly alone, with very little help, understanding or support. I have PTSD from this and even when I'm feeling fine, I don't like leaving the house. I'm scared to do much of anything now, for several reasons. The low level DP/DR I have now reminds me of when it was extreme and it makes me want to run back to the safety of my home. Knowing how sensitive I am to stress, makes me avoid doing things which I might actually enjoy, its like I don't want to risk setting myself back by exposing myself to possible things which could 'go wrong' out there in the world.  I used to enjoy a certain amount of stress in my life, problems were challenges, when things went wrong or when bad things happened, at worst they were inconveniences to be dealt with, not life threatening circumstances, which is what they feel like now. Life itself now seems risky, I've lost my adventurous spirit, maybe it will come back with more time. I've been negatively conditioned by all the times I've tried to exercise or do anything too physical, many times I've had extreme reactions and caused waves after just a few minutes of activity, its been frightening, several times I've thought I was about to die.

 

My daughter bought her own home and moved out in December, she now lives closer to her work, so I've been completely alone now for 5 months. Life has been a bit more predictable and peaceful, which has probably helped reduce stress, but I get lonely and miss her company. I've been wanting to get a dog ever since we moved here in 2012, but haven't had the confidence that I will be consistently well enough to take care of a pet. Its been hard enough just keeping myself alive, but I think I'm just about ready to take on the responsibility again. I've had dogs, cats, fish, and small animals as pets my whole life. I can't remember a time longer than a few months where I have been without a pet of some kind, so this has been a very difficult few years. I've needed all my energy and strength just to keep myself alive. I'm still not sure though, I would hate to go into a bad wave and not be able to care properly for an animal that depended on me.... but I guess I'll do it eventually, my confidence is slowly returning.

 

I'm forever changed by going through this, I've lost too much, to ever return to being the person I was before. But I'm starting to appreciate some of these changes and losses. The person I used to be made bad relationship decisions and was impulsive. That person didn't tolerate uncomfortable feelings very well and was always looking for quick fixes. I used to be a people pleaser at the expense of my own needs. I've been forced to consider my own needs in order to survive, its like I've been re-born and have had to re-parent myself in a new and healthy way, giving myself the consideration I never got as a child. I've learned a lot about myself and the truth about my life, while spending the best part of 5 years alone, in my room waiting to recover from what has felt like a life threatening illness.

 

I could probably find a few more silver linings in this big dark cloud if I looked deeper, but I'm getting tired.

 

At my worst point, I was suicidal. I'm glad I survived. I still don't have much of a life, but there is a lot of optimism and hope now. There's a permanent light at the end of the tunnel so I'm no longer getting lost as the slow crawl towards recovery continues.

 

I stopped juicing and went back to daily green smoothies, I can tolerate them now.

Edited May 14, 2018 by Petunia

[Shep]

1 hour ago, Petunia said:

As far as the actual symptoms go, I would estimate that I'm about 75% recovered. But a lot of my problems now come from all the secondary effects of having gone through the trauma of having to endure extreme symptoms for such a long time, mostly alone, with very little help, understanding or support.

 

Petunia,  your entire post is such a thoughtful and insightful update. Thank you for sharing.

 

I'm almost 3 years off many, many drugs and I also didn't taper properly, so I look to survivors such as yourself for information on this type of journey. The crash landing is brutal and I completely relate to the "secondary effects", the collateral damage, the obstacle course during the slow and painful re-build years of protracted. . . . 

 

1 hour ago, Petunia said:

I've been wanting to get a dog ever since we moved here in 2012, but haven't had the confidence that I will be consistently well enough to take care of a pet. Its been hard enough just keeping myself alive, but I think I'm just about ready to take on the responsibility again.

 

I hope you are able to bring in a dog or a cat, if that's an option, as the responsibilities are less. Just wanting to do this speaks volumes of how far you've come. 

 

1 hour ago, Petunia said:

I'm forever changed by going through this, I've lost too much, to ever return to being the person I was before. But I'm starting to appreciate some of these changes and losses. The person I used to be made bad relationship decisions and was impulsive. That person didn't tolerate uncomfortable feelings very well and was always looking for quick fixes. I used to be a people pleaser at the expense of my own needs. I've been forced to consider my own needs in order to survive, its like I've been re-born and have had to re-parent myself in a new and healthy way, giving myself the consideration I never got as a child. I've learned a lot about myself and the truth about my life, while spending the best part of 5 years alone, in my room waiting to recover from what has felt like a life threatening illness.

 

There's a definite "before and after" aspect to an experience this brutal and isolating. It changes your worldview, like an awakening. Awakenings come at the cost of having to empty out everything about yourself and then replacing it with all of the strength and resiliency you built up to survive this nightmare.

 

I get these empty spaces of transition in my own recovery where I'm in-between the emptying out and the filling up. Who I was is gone, shattered completely by this experience, but who I'm becoming hasn't quite emerged. Your concept of re-parenting sounds like a brilliant way to build a baseline, a foundation, to grow up, so to speak, and come into your own. I see you coming out of this a warrior, Petunia. Thanks for sharing your journey with us. 

Edited May 14, 2018 by Shep
fixed typo

[Petunia]

Thank you for your comments Shep. For a long time, I've thought that one of the positives to come from this is that its been a catalyst for an awakening, several of them really. My world view has completely changed. I've had to grow up and accept realities I might never have been able to face. I've lost my old identity, and now have the opportunity to to create a new, more authentic one, and I've stopped looking outside of myself for ways to escape from discomfort.

 

It sounds like we are both at that in-between stage between the old and the new. I sometimes imagine myself to be like the mythical phoenix, being burned down to ashes by this experience so that something new can rise from the detestation. None of these heroic images makes it any easier though, still got to go through it. 🙂

 

I used to be more of a cat person in my 20's, their temperament is a better match for mine I think, but I've always been a bit allergic, more so at certain times and I think that now, with my increased sensitivity and sinus issues, it would probably be worse. I like the idea of having a dog that needs to be taken for walks and outings, it will encourage me to get back out into the world. I used to love walking with dogs that I've had, it adds more meaning to the walk, I enjoy watching a dog's natural excitement and interaction with the environment, they are so full of present moment life. I think it will help keep me grounded.

[Altostrata]

So good to hear from you, Petu.

 

It took me a long while to get back into the world, too. I'm still working on it. It just dawned on me recently that I could travel more, for example.

 

All of these long hours on the computer have taken their toll, however. I need to change my sedentary, housebound habits.

[FarmGirlWorks]

7 hours ago, Petunia said:

I like the idea of having a dog that needs to be taken for walks and outings, it will encourage me to get back out into the world. I used to love walking with dogs that I've had, it adds more meaning to the walk, I enjoy watching a dog's natural excitement and interaction with the environment, they are so full of present moment life. I think it will help keep me grounded.

Having a dog has been good for me during this experience. She forces me to take walks and interact with neighbors when I can; at other times, I've crossed the street to avoid interaction. I've been fortunate in that a friend (one of the very few that stuck around since this started) takes her a couple times a week to give her more vigorous exercise that I cannot do for her. Plus she has been a blessed, animate presence in this time of isolation. I hope it works out for you -- it sounds like a dog would be lucky to have a human like you in their life.

 

And your update was amazing. Thank you for the authenticity and clear eyes about this experience.

[Pepita]

Hi Petunia, 

I am both happy for the good changes and somehow I can really feel your pain about those not so positive changes that come along with being in WD for such a long time. Your write so vividly, I can truly imagine/feel your situation. 

As for the dog: GO FOR IT! My dog has been soooooo good for me during WD and as FarmgirlWorks pointed out: They do encourage you to get back out into the world :) Even on days where you feel miserable - you will go for a short walk with your dog. They are forgiving and can be really lazy actually, you don´t have to run around with them every day for 2 hours! (maybe don´t get a small Terrier or a Hunting Dog;)) My dog is perfectly happy to watch soap operas with me all day. The only thing that I might consider, based on my own experience, is to get an older dog. I got mine when my WD started as a puppy and that did throw me into a horrible long lasting wave because I had to get up 2-3 times at night, and they are basically like babies. But in general I´d say: GO FOR IT:))) 
Wishing you all the best and continue to heal! 
Pepita

[Rabe]

Just wanted to say thank you for all those hours, Altostrata...I can't imagine...your advice and help is so appreciated and needed..I'm sorry it has taken a toll.  Take care of you too.  Bless you!  

[mammaP]

Thank you for updating Petu. It is lovely to see that you are improving, it has been heartbreaking sometimes seeing you suffer so much and being unable to do anything.  I think a pet would be really good for you, I would love a little dog but unfortunately I am not allowed pets in my new home. My last dog was a rescue, she was 14 and about to be put to sleep. She had been a puppy factory and had never been indoors, and was at the end of her breeding life, no longer profitable.  My daughter was still at home and we housetrained her, called her Lady, a litte Jack Russell terrier.  She followed us around like a little shadow. I was very unwell at the time and wouldn't have taken her if I had lived alone but we soomn bonded and she made such a difference. When my daughter moved out Lady was a blessing and kept me going. I had her for 4 years, and was 18 when I lost her .  I have very fond memories of her and I'm sure that if you had a pet it would be really good for you and any pet will be lucky to have you. 

[Addax]

Petu! Glad to read you’re navigating life an d doing well.  This road we’re on is smoother and a bit easier even with some of the scars keeping us a bit stiff. I’m confident those scares will soften and fade in time and a new, more flexible, and restful normal will become... well... our normal.

 

warm wishes to you, Petu!

[Petunia]

The support, encouragement and comments are much appreciated, thanks everyone who posted.

 

I'm still working on the puppy project, but tbh, I'm actually enjoying learning how to take care of myself properly. Its first time in my life I've ever really made myself a priority without feeling guilty about it. Even when I was younger, before marriage and family, when it looked like I was prioritizing my own needs, it was usually in service to something external, trying somehow to please someone else or get my needs met through manipulating the opinions of others. I'm figuring out how to fill my own needs, by myself. I'm learning that I'm enough, without the acceptance and approval and attention and validation of anyone.

 

I've noticed I'm dealing with stress and setbacks much better now. Even better than pre-drugs I think. I've only had minor stress and set-backs lately, but 6 months ago, these were still causing overwhelming anxiety and increasing physical symptoms, they would set my nervous system back on high alert, making me feel like it was a life threatening situation.

 

But for the past few weeks I've noticed a more normal reaction which is in proportion to the situation. I'm able to think my way back to rationality again and with everything I've learned over the last few years, I'm much more rational than I ever was before. Specifically, I used to blame myself, thinking that when things 'went wrong' it was somehow my fault and due to my inadequacy. But I've learned that my false beliefs about myself come from the messages I received about myself as a child, and they just weren't true. I might make mistakes sometimes, and there are often better ways to do things, but I'm fine and I'm free to choose to do things the way I want.

 

When other people treat me badly, its not automatically my fault, which is what I was taught. So now I'm able to see clearer, that other people may be at fault, or have a problem, its not always about me, I don't have to accept bad behavior, or anxiously try to figure out what I'm doing wrong to cause it, which is what I used to spend enormous amounts of energy doing.

 

I've had several mornings this week with virtually no feelings of dread when I woke up. This is amazing because I haven't had mornings like this since 2016. I've been getting up, getting dressed and being physically active for huge chunks of the day. I'm finding myself motivated to do things, just like I used to be. There are cycles to this motivation and activity, I'm still getting tired fairly quickly and need to rest, I'm still feeling un-motivated at times, its coming back gradually, which is perfect, because I need to build my physical strength and stamina back up slowly. Apart from a few brief windows, I've spent the best part of 5 years on my bed, I'm amazed I still have any strength left at all.

 

Something else I've noticed is when my mind is invaded by an anxious thought, or worry about some imaginary possible future event, I catch it almost instantly and stop. Unless its something I need to attend to now, I let the future take care of itself. What happens will happen, and I will deal with it then. I can hear my old childhood programming rumbling and grumbling in the background, trying to scare me into those old habits and patterns, trying to 'keep me safe', but life isn't about being as safe as possible, trying to protect myself from every possible imagined danger, what kind of a life its that? My childhood was filled with fear, instilled in me by the projections of my parents, but I had managed to overcome a lot of this by my late 20's. It all came back 100 times worse in withdrawal, every moment felt like my life was in danger, maybe it just needed time to burn itself out.

 

Prior to withdrawal, life had a constant, unconscious agenda to protect me from death, a subtle undercurrent of anxiety which informed all my choices and decisions. Everything I did seemed to be either running away from something dangerous or trying to find islands of safety where I could rest for a while. It was unconscious behavior, I was completely unaware of my true motives,  but now I can see how that used to be.

 

During withdrawal, it all became conscious, the fear came up into the light and flooded my awareness, filling almost all of my waking moments with terror and all the horrors of human existence. There was no escaping from it, because I was too sick to do anything. I couldn't block it out any longer with drugs, medications, alcohol or any of the things I used to do, because my nervous system would no longer tolerate anything. It just kept coming and I thought there would be no end to it.

 

I don't know if it was the overwhelming fear which effected my nervous system, causing it to become unstable and sensitive, or if it was the other way around, that my damaged nervous system was the cause of the fear and physical responses. But I guess it doesn't matter now, its all settled down a lot, it doesn't seem like a window, which I will crash out of, this feels like baseline improvement which should be permanent. I may have more waves, but if this is going to be my new normal, then its wonderful and much better than my experience of life pre-drugs.

 

Even when I'm tired and unmotivated, even if there is pain or some kind of physical discomfort, I'm content and peaceful, completely accepting of reality. I was rarely able to feel this kind of acceptance and contentment pre-drugs.

[Petunia]

On 5/17/2018 at 2:04 AM, mammaP said:

My last dog was a rescue, she was 14 and about to be put to sleep. She had been a puppy factory and had never been indoors, and was at the end of her breeding life, no longer profitable. 

 

I saw the picture of Lady you posted in the pet topic, she looks sweet and so happy sitting there on her cushion, she was lucky to have you take care of her for the last years of her life.

[wantrelief]

What an amazing, beautiful update, Petunia.  I am so very happy for you!!

[direstraits]

happy to read of your progress,Petunia...you're doing great.

we're getting there,slowly but surely.

the best to you,ds

xx

[Fightingawar]

@Petunia I read a lot of your story, and I cried because you are such a beautiful soul, an amazing strong woman. You inspire me to fight when I feel like there is no fight left. I’m only 3 months in to this and I’m already so tired and scared I don’t want to die but sometimes I feel like I am I don’t see the light yet and I imagine I have awhile before I do. I just want to thank you for not giving up and for being here today to share your story to so many of us who are where you were 5 years ago. Did you have loss of appetite and lose a lot of weight? I have lost 45 pounds in 3 months and I’m trying not to freak out but I don’t know how to make myself eat because then I’ll throw up. Any advice on this?

[Dan998]

This is a wonderful update, Petunia.

 

It seems to me that the withdrawal process sets up a whole load of new fears, obsessions and phobias that need to be unraveled once we untangle our minds from the drugs. The way you are describing coming to terms with your anxiety shows that you are progressing into full recovery.

 

[elbee]

Hi Petunia, thanks for the update on your continued growth. I too am finding that the most important shift for me has been learning ways to take care of myself psychologically/emotionally/physically/spiritually/etc. Confronting that critical voice in my head with newfound gentleness and love for the most vulnerable aspects of myself is making huge  differences for me to. It's so awesome to hear you are finding these new ways to live as part of your overall healing process!

[bromor]

I’ve not kept up the way I should with all the posts but was so very happy to read this!! 😊🌷

[Petunia]

On 6/1/2018 at 6:55 AM, Fightingawar said:

@Petunia I read a lot of your story, and I cried because you are such a beautiful soul, an amazing strong woman. You inspire me to fight when I feel like there is no fight left. I’m only 3 months in to this and I’m already so tired and scared I don’t want to die but sometimes I feel like I am I don’t see the light yet and I imagine I have awhile before I do. I just want to thank you for not giving up and for being here today to share your story to so many of us who are where you were 5 years ago. Did you have loss of appetite and lose a lot of weight? I have lost 45 pounds in 3 months and I’m trying not to freak out but I don’t know how to make myself eat because then I’ll throw up. Any advice on this?

 

I'm sorry you are going through this too, I replied to your questions on your intro thread. You will get through this. Just because I've taken so long to recover, it doesn't mean you will.

[Carmie]

Hi @Petunia,

 

Just read your last post, it was very inspiring. 

 

I’m glad you’re learning to take of yourself and not feel guilty about it. It’s an ongoing process though, isn’t it?

 

Being taught it’s our fault when people treat us badly really is a misconception. I’m so glad you came to this realisation. It hurts when people hurt us, and when we’ve gone through a lot in our lives we may feel like it’s always our fault.

 

Theses meds and the withdrawals from them can make us feel bad about ourselves too as we feel like we’re on another planet a lot of the time. 

 

I was actually reading a few quotes today on this subject, I thought I’d share them with you: 

 

* Note to self: even when it seems personal, rarely do people do things because of you, they do things because of them. You know this is true. You may not be able to control all the things people say and do to you, but you can decide not to be reduced by them.

 

* You can’t control how people receive your energy. Whatever someone interprets, or projects onto you, is at least partially an issue or problem that they themselves are dealing with. Just keep doing your thing with as much love and integrity as possible.

 

* There is a huge amount of freedom when you detach from other people’s beliefs and behaviours. The way people treat you is their problem, the way you react is yours. 

 

* Remember, inner peace begins the moment you take a deep breath and choose not to allow another person or event to control your thoughts. You are not what happened to you. You are what you choose to become in this moment. Let go, breathe, and begin again. 

 

* Calmness is a superpower. The ability to not take things personally keeps your mind clear and your heart at peace. 

 

Take care Petunia💚💚💚

 

[Junglechicken]

On ‎5‎/‎14‎/‎2018 at 9:47 AM, Petunia said:

The beginning of this month was my 5 year anniversary of being drug free, and I've been meaning to update, but I haven't known what to write. This year so far has been much of the same very slow progression towards increasing recovery.

 

For anyone reading this update who isn't familiar with my whole thread, my brief history is that I didn't taper properly. I'm in what is poorly termed as protracted withdrawal from a much too fast taper after 13 years of SSRI use, followed by 2 - 3 years of various other drug trials and failed reinstatement attempts. The proper functioning of my brain and nervous system collapsed completely, leaving me with only the basics for survival, and that's what I've been recovering from.

 

Most of my original horrendous symptoms have gone completely, although in waves they can sometimes return as very mild versions of what they once were. I'm still getting regular waves, but now they tend to last for days rather than weeks or months. In between the waves, there have been no windows since those amazing 3 - 4 months in the middle of 2016. But I have a slowly rising baseline of milder symptoms which are not out of the 'normal' range of what I used to feel sometimes before I ever started taking these kinds of drugs.

 

My average baseline day is like a bad day pre-drugs, disturbing dreams, waking up with hangover type feelings, anxiety and mild dread, badly needing coffee, which I can no longer tolerate, gloomy thoughts, not wanting to get out of bed, all this lasts anywhere from 2 - 5 hours. As the day progresses, I usually start to feel better, and often, by evening I'm feeling great, apart from being tired. Fatigue is something which is always with me now, even when my mood is good and I'm free from physical symptoms. I rarely have the energy to put my better feelings to much use, but its ok, I would rather be feeling happy, content, relaxed, and tired, than what I went through during the early years of this. I have confidence that as I continue to recover, my energy levels will improve. One obvious improvement is that I'm now motivated to do more things, I'm starting to feel enthusiastic about various projects and activities which interest me, two years ago I was scared that I would never want to do anything ever again, everything seemed completely meaningless. But my passion for life is coming back, when my energy levels catch up, I think I will be ok.

 

Some of my continuing symptoms include fluctuating cognitive issues - memory, word recall, multi-tasking, problem solving, executive function. Cycles of sinus issues, jaw and teeth problems, I'm still very vulnerable to increases in stress. Blurred vision. Light sensitivity. I'm actually still very sensitive to everything and get easily overwhelmed/irritated when there is too much stimulation around me. I still have constant tinnitus in the middle of my head, but I used to have a secondary tone in my right ear too, but that only comes occasionally now, usually when I'm having a bad day...and of course, fatigue and limited energy. Slight DP/DR persists, especially when I leave the house, it can still get fairly bad sometimes in grocery stores and visually stimulating places. Its not so bad during quiet times when there are fewer people around.

 

As far as the actual symptoms go, I would estimate that I'm about 75% recovered. But a lot of my problems now come from all the secondary effects of having gone through the trauma of having to endure extreme symptoms for such a long time, mostly alone, with very little help, understanding or support. I have PTSD from this and even when I'm feeling fine, I don't like leaving the house. I'm scared to do much of anything now, for several reasons. The low level DP/DR I have now reminds me of when it was extreme and it makes me want to run back to the safety of my home. Knowing how sensitive I am to stress, makes me avoid doing things which I might actually enjoy, its like I don't want to risk setting myself back by exposing myself to possible things which could 'go wrong' out there in the world.  I used to enjoy a certain amount of stress in my life, problems were challenges, when things went wrong or when bad things happened, at worst they were inconveniences to be dealt with, not life threatening circumstances, which is what they feel like now. Life itself now seems risky, I've lost my adventurous spirit, maybe it will come back with more time. I've been negatively conditioned by all the times I've tried to exercise or do anything too physical, many times I've had extreme reactions and caused waves after just a few minutes of activity, its been frightening, several times I've thought I was about to die.

 

My daughter bought her own home and moved out in December, she now lives closer to her work, so I've been completely alone now for 5 months. Life has been a bit more predictable and peaceful, which has probably helped reduce stress, but I get lonely and miss her company. I've been wanting to get a dog ever since we moved here in 2012, but haven't had the confidence that I will be consistently well enough to take care of a pet. Its been hard enough just keeping myself alive, but I think I'm just about ready to take on the responsibility again. I've had dogs, cats, fish, and small animals as pets my whole life. I can't remember a time longer than a few months where I have been without a pet of some kind, so this has been a very difficult few years. I've needed all my energy and strength just to keep myself alive. I'm still not sure though, I would hate to go into a bad wave and not be able to care properly for an animal that depended on me.... but I guess I'll do it eventually, my confidence is slowly returning.

 

I'm forever changed by going through this, I've lost too much, to ever return to being the person I was before. But I'm starting to appreciate some of these changes and losses. The person I used to be made bad relationship decisions and was impulsive. That person didn't tolerate uncomfortable feelings very well and was always looking for quick fixes. I used to be a people pleaser at the expense of my own needs. I've been forced to consider my own needs in order to survive, its like I've been re-born and have had to re-parent myself in a new and healthy way, giving myself the consideration I never got as a child. I've learned a lot about myself and the truth about my life, while spending the best part of 5 years alone, in my room waiting to recover from what has felt like a life threatening illness.

 

I could probably find a few more silver linings in this big dark cloud if I looked deeper, but I'm getting tired.

 

At my worst point, I was suicidal. I'm glad I survived. I still don't have much of a life, but there is a lot of optimism and hope now. There's a permanent light at the end of the tunnel so I'm no longer getting lost as the slow crawl towards recovery continues.

 

I stopped juicing and went back to daily green smoothies, I can tolerate them now.

 

I can so relate to everything you have said Petu, but couldn't find the words to capture my experiences like you do so beautifully.

 

Re-inventing who we are? yes, I'm in that position.  I'm not even a carbon copy of who I was before, more like having been in a weird time machine of chaos, and then thrown back out into the world again but with less ability to cope.

 

Not having the confidence to have a dog because you don't feel like you have what it takes to look after one, is exactly how I feel.

 

Well, we're still here aren't we?

 

 

[bhasski]

On 5/14/2018 at 2:17 PM, Petunia said:

The beginning of this month was my 5 year anniversary of being drug free, and I've been meaning to update, but I haven't known what to write. This year so far has been much of the same very slow progression towards increasing recovery.

 

For anyone reading this update who isn't familiar with my whole thread, my brief history is that I didn't taper properly. I'm in what is poorly termed as protracted withdrawal from a much too fast taper after 13 years of SSRI use, followed by 2 - 3 years of various other drug trials and failed reinstatement attempts. The proper functioning of my brain and nervous system collapsed completely, leaving me with only the basics for survival, and that's what I've been recovering from.

 

Most of my original horrendous symptoms have gone completely, although in waves they can sometimes return as very mild versions of what they once were. I'm still getting regular waves, but now they tend to last for days rather than weeks or months. In between the waves, there have been no windows since those amazing 3 - 4 months in the middle of 2016. But I have a slowly rising baseline of milder symptoms which are not out of the 'normal' range of what I used to feel sometimes before I ever started taking these kinds of drugs.

 

My average baseline day is like a bad day pre-drugs, disturbing dreams, waking up with hangover type feelings, anxiety and mild dread, badly needing coffee, which I can no longer tolerate, gloomy thoughts, not wanting to get out of bed, all this lasts anywhere from 2 - 5 hours. As the day progresses, I usually start to feel better, and often, by evening I'm feeling great, apart from being tired. Fatigue is something which is always with me now, even when my mood is good and I'm free from physical symptoms. I rarely have the energy to put my better feelings to much use, but its ok, I would rather be feeling happy, content, relaxed, and tired, than what I went through during the early years of this. I have confidence that as I continue to recover, my energy levels will improve. One obvious improvement is that I'm now motivated to do more things, I'm starting to feel enthusiastic about various projects and activities which interest me, two years ago I was scared that I would never want to do anything ever again, everything seemed completely meaningless. But my passion for life is coming back, when my energy levels catch up, I think I will be ok.

 

Some of my continuing symptoms include fluctuating cognitive issues - memory, word recall, multi-tasking, problem solving, executive function. Cycles of sinus issues, jaw and teeth problems, I'm still very vulnerable to increases in stress. Blurred vision. Light sensitivity. I'm actually still very sensitive to everything and get easily overwhelmed/irritated when there is too much stimulation around me. I still have constant tinnitus in the middle of my head, but I used to have a secondary tone in my right ear too, but that only comes occasionally now, usually when I'm having a bad day...and of course, fatigue and limited energy. Slight DP/DR persists, especially when I leave the house, it can still get fairly bad sometimes in grocery stores and visually stimulating places. Its not so bad during quiet times when there are fewer people around.

 

As far as the actual symptoms go, I would estimate that I'm about 75% recovered. But a lot of my problems now come from all the secondary effects of having gone through the trauma of having to endure extreme symptoms for such a long time, mostly alone, with very little help, understanding or support. I have PTSD from this and even when I'm feeling fine, I don't like leaving the house. I'm scared to do much of anything now, for several reasons. The low level DP/DR I have now reminds me of when it was extreme and it makes me want to run back to the safety of my home. Knowing how sensitive I am to stress, makes me avoid doing things which I might actually enjoy, its like I don't want to risk setting myself back by exposing myself to possible things which could 'go wrong' out there in the world.  I used to enjoy a certain amount of stress in my life, problems were challenges, when things went wrong or when bad things happened, at worst they were inconveniences to be dealt with, not life threatening circumstances, which is what they feel like now. Life itself now seems risky, I've lost my adventurous spirit, maybe it will come back with more time. I've been negatively conditioned by all the times I've tried to exercise or do anything too physical, many times I've had extreme reactions and caused waves after just a few minutes of activity, its been frightening, several times I've thought I was about to die.

 

My daughter bought her own home and moved out in December, she now lives closer to her work, so I've been completely alone now for 5 months. Life has been a bit more predictable and peaceful, which has probably helped reduce stress, but I get lonely and miss her company. I've been wanting to get a dog ever since we moved here in 2012, but haven't had the confidence that I will be consistently well enough to take care of a pet. Its been hard enough just keeping myself alive, but I think I'm just about ready to take on the responsibility again. I've had dogs, cats, fish, and small animals as pets my whole life. I can't remember a time longer than a few months where I have been without a pet of some kind, so this has been a very difficult few years. I've needed all my energy and strength just to keep myself alive. I'm still not sure though, I would hate to go into a bad wave and not be able to care properly for an animal that depended on me.... but I guess I'll do it eventually, my confidence is slowly returning.

 

I'm forever changed by going through this, I've lost too much, to ever return to being the person I was before. But I'm starting to appreciate some of these changes and losses. The person I used to be made bad relationship decisions and was impulsive. That person didn't tolerate uncomfortable feelings very well and was always looking for quick fixes. I used to be a people pleaser at the expense of my own needs. I've been forced to consider my own needs in order to survive, its like I've been re-born and have had to re-parent myself in a new and healthy way, giving myself the consideration I never got as a child. I've learned a lot about myself and the truth about my life, while spending the best part of 5 years alone, in my room waiting to recover from what has felt like a life threatening illness.

 

I could probably find a few more silver linings in this big dark cloud if I looked deeper, but I'm getting tired.

 

At my worst point, I was suicidal. I'm glad I survived. I still don't have much of a life, but there is a lot of optimism and hope now. There's a permanent light at the end of the tunnel so I'm no longer getting lost as the slow crawl towards recovery continues.

 

I stopped juicing and went back to daily green smoothies, I can tolerate them now.

 

 

Its like you were describing me. 

 

Well, there is no daughter here..  I am not even married ...

 

I thought to quote full as a easy task.

 

I feel I am 40% of baseline.

I dunno how the state of mind you told matches mine completely. All PTSD from this wdl... 5-6 hrs of morning..  dp/dr when going out and increased with more people around..

Cognitive issues like word recall, talking, memory..  

 

Everything I am facing.

 

Hope you get better soon and me too.

[elbee]

On 5/14/2018 at 4:47 AM, Petunia said:

waking up with hangover type feelings, anxiety and mild dread, badly needing coffee, which I can no longer tolerate, gloomy thoughts, not wanting to get out of bed, all this lasts anywhere from 2 - 5 hours. As the day progresses, I usually start to feel better, and often, by evening I'm feeling great, apart from being tired.

 

Hey Petunia, I experience this too, and I'm curious to see if you have thoughts/ideas about why this is so? I have ideas of my own why it is that mornings / waking (if I don't completely sleep through them) are so difficult for me, and then by evening I can feel so good. The difference for me literally feels like "night and day" and I'm curious to get your take on this.

[Petunia]

On 6/8/2018 at 2:28 PM, Carmie said:

 

* Note to self: even when it seems personal, rarely do people do things because of you, they do things because of them. You know this is true. You may not be able to control all the things people say and do to you, but you can decide not to be reduced by them.

 

 

thanks Carmie, this has been a huge insight and turning point for me recently, I've known it on a cognitive level for a long time, but just recently I've been able to grasp it emotionally, so that what other people do and say doesn't harm me, not in the way it has my whole life. Actually, we can't really control anything other people say and do, even though we might spend a lot of time trying to.

 

22 hours ago, Junglechicken said:

 

Not having the confidence to have a dog because you don't feel like you have what it takes to look after one, is exactly how I feel.

 

Well, we're still here aren't we?

 

 

 

Yes JC, we're still here, at one point I wasn't sure, but for quite a while I"ve been stubbornly determined that I'm going to get through this no matter what....and you know what, I've decided I'm going to go ahead and get a dog. I'm still not 100% certain its the right decision, but I feel capable and confident about 80% of the time now, so I figure that other 20% of the time I can fake it. I've been buying doggy supplies and equipment, getting myself set up and have been looking for puppies. I've become a bit addicted to a youtube channel called That Pug Pablo, which has captured the process of getting a puppy and its first year of life.

 

11 hours ago, elbee said:

 

Hey Petunia, I experience this too, and I'm curious to see if you have thoughts/ideas about why this is so? I have ideas of my own why it is that mornings / waking (if I don't completely sleep through them) are so difficult for me, and then by evening I can feel so good. The difference for me literally feels like "night and day" and I'm curious to get your take on this.

 

Hey elbee, I think its the cortisol. Not that its too high, but that in withdrawal (sensitive nervous system), we become sensitized to everything, including our own natural chemical fluctuations and increases. Have you seen this topic:

Waking with panic or anxiety - managing cortisol spikes - Symptoms ...

 

14 hours ago, bhasski said:

 

 

Its like you were describing me. 

 

...I feel I am 40% of baseline.

I dunno how the state of mind you told matches mine completely. All PTSD from this wdl... 5-6 hrs of morning..  dp/dr when going out and increased with more people around..

Cognitive issues like word recall, talking, memory..  

 

Everything I am facing.

 

Hope you get better soon and me too.

 

Hi bahasski, I'm sorry you're having to deal with all this too. I'm not surprised your symptoms match mine, I've been on this site long enough to read the same kinds of symptoms over and over. People describe them differently, and have different reactions and ways of coping, but coming off these drugs seems to cause a huge amount of similar symptoms for everyone who has problems.

 

We will all get better eventually, thanks for your comment.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

Small update, seeing as I'm here. 

 

I had a smallish wave for a few days last week. Bad sleep and disturbing dreams, morning dread came back, low mood and negative thinking. I was confused, as I usually am in a wave, I lose my perspective and ability to think rationally. But it didn't last long. 

 

I've made a huge change in the way I'm living now. For 6 years, since we moved into this house, I've basically been living in my bedroom and just coming out into the rest of the house when I've needed to. We moved while I was in withdrawal, and so I basically let my daughter and her boyfriend have the majority of the house to themselves and I stayed in my room because I needed to protect myself from.... basically everything. It became a habit, which became comfortable. But now I've spread out into the rest of the house and I'm finally being able to appreciate the renovations from 6 years ago. Its taken 6 years, but I figured out how to hook my laptop up to the TV and get some background music in the house. I've finally got a normalish routine after moving 6 years ago. I'm really starting to feel normal again, its like a miracle, for such a long time I wasn't sure I would ever feel normal again, but I am and its a better kind of normal than I had pre-drugs. Withdrawal seems to have 'burned' away some of my emotional and cognitive dysfunction. Its difficult to describe, but I seem to be becoming a better, more complete and whole version of who I used to be. 

 

I'm getting up in the morning and staying up, going out, coming home and not needing to fall back onto my bed to recover for hours. My stamina is coming back, but its not like how it was in those few extended windows I had in 2015 and 2016, where I was sort of manic, this is calm, normal, routine daily activity, I'm not feeling driven and impulsive, I seem to have come back to center at last.

 

I was able to browse around some stores yesterday and enjoy it, DPDR was at about 5%... its almost gone 

[apace41]

4 hours ago, Petunia said:

I'm getting up in the morning and staying up, going out, coming home and not needing to fall back onto my bed to recover for hours. My stamina is coming back, but its not like how it was in those few extended windows I had in 2015 and 2016, where I was sort of manic, this is calm, normal, routine daily activity, I'm not feeling driven and impulsive, I seem to have come back to center at last.

 

I was able to browse around some stores yesterday and enjoy it, DPDR was at about 5%... its almost gone 

 

This is all so wonderful, Petu.  You have been at this a long time and it is really starting to pay off.  I think things will only accelerate from here. The best is yet to come!

 

Best,

 

Andy

[wantrelief]

6 hours ago, Petunia said:

Its difficult to describe, but I seem to be becoming a better, more complete and whole version of who I used to be. 

Wow - this is wonderful to hear Petunia!!

[elbee]

13 hours ago, Petunia said:

On 6/8/2018 at 4:08 PM, elbee said:

 

Hey Petunia, I experience this too, and I'm curious to see if you have thoughts/ideas about why this is so? I have ideas of my own why it is that mornings / waking (if I don't completely sleep through them) are so difficult for me, and then by evening I can feel so good. The difference for me literally feels like "night and day" and I'm curious to get your take on this.

 

Hey elbee, I think its the cortisol. Not that its too high, but that in withdrawal (sensitive nervous system), we become sensitized to everything, including our own natural chemical fluctuations and increases. Have you seen this topic:

Waking with panic or anxiety - managing cortisol spikes - Symptoms ...

 

Thanks for your reply, Petunia. I guess I was wondering if you have ideas about WHY your cortisol might be spiking in the a.m. / upon waking (i.e., why the "fight or flight" response is activated at these times)? Thanks for directing me to the topic on the subject, I'll pursue my inquiry there

[Petunia]

I had my first little wave after turning the corner. Of course I didn't realize it was just a wave and thought I had come back to a horrible baseline after having a window close. I actually felt so bad I took myself back to bed and stayed there for about 36 hours, resigning myself to going back to a non-functional life.

 

But it didn't last long, I'm still almost recovered, but apparently I'm still going to be having the occasional shortish wave here and there.

 

I'm quite busy these days, catching up with cleaning, organizing, crafting and getting ready for a new puppy. My body hurts somewhere most of the time, after 6 years, spent mostly in bed, its complaining a lot about being forced back into action. But I'm building my physical strength back up slowly and its so nice to be able to do things again... and to get pleasure and satisfaction out of it. All the good emotions which I thought would never come back have, and I really appreciate them. My energy levels are still fairly low, but I can do so much more in a day now than what I could previously. I was starting to think I had developed CFS and would be plagued with fatigue the rest of my life, but apparently not. With recovery from withdrawal has come the return of energy.

 

I still have some residual physical issues, which are frustrating. I don't know if they are related to withdrawal or just normal aging. But we will see.

 

Its cold here now, especially in the mornings, but my body is regulating its temperature much better now. Everything in my body is working better than it was a few years ago. I don't think I would have believed this recovery process if I hadn't have gone through it myself.

[direstraits]

sounds wonderful, @Petunia !

we've been dealing with this for a long time but I think we're finally getting near the end of it (I hope!)

I had arough night and woke feeling horrible, but a few hours later feeling not TOO bad, I seem to recover faster from the waves than before.

 

it takes so d*mn  long but we're getting there! I'm 4 years off.

wishing you all the best.

 

hope you enjoy your puppy!

 

hugs,ds

xx

[Barbarannamated]

Wonderful to read, Petunia!  🐾

[Petunia]

Quick update to document my current wave. Its been about 9 days, but unlike previous waves, there has been no return of the intense fear, anxiety, agoraphobia, DP/DR or akathisia. Its been more physical in nature, combined with fatigue, cognitive issues and low mood, which is probably because I'm unable to enjoy life, which I was becoming accustomed to. Bad dreams have returned and I often wake up feeling quite disturbed. But its not the intense physical sensations I used to wake up with, this is purely an emotional reaction to the dreams.

 

I don't think I was overdoing things this time, which is what I've done previously when I've felt better. Maybe my body is telling me it needs more rest again. I don't know, I guess I'm not done yet after all. But the worst symptoms haven't returned this time, so I'm not completely miserable, more like frustrated, impatient and annoyed.

 

Unlike previous waves, my faith in recovery hasn't disappeared, so I expect I will be back on the almost recovered path again soon.

 

⛅ 

[bubbles]

Sorry to hear that you're in a wave but happy to hear that it sounds milder and that you are feeling optimistic. Hope it passes soon.

[Peachy]

@Petunia,

Hello! I am in the process of tapering my long-term Lexapro (ssri) use.I have been tapering for 2.5 yrs and experiencing WD the entire process.  It's hard to find others that have been on them as long as me (around 15 yrs). 

I'm just wondering how high was your dose? I'm in a fear state that bc I was on such a high dose for so long, that I will forever have tardive dysphoria. I do have ups and downs with the depression. 

I would love to hear your thoughts since you have been at this for awhile?!

I'm basically not always super depressed, but haven't managed to feel good either, just managing to get by, if this makes sense?

Thanks for any advice!

XX

[Petunia]

@Peachy, I replied to your questions on your intro thread.

 

Thanks bubbles for your comments and concern, as I expected, it was a short wave and led to another leap in recovery. This last month I've felt a lot better and my creativity has kind of exploded. I've always been the creative type, but I'm finding I'm able to express it easier and more reliably now. But more importantly, I'm enjoying the process more than I ever have in my life. There's a kind of connection and flow which I seem able to tap into now, whenever I want to. I used to struggle and feel blocked a lot of the time, but now, not so much.

 

I've also decided that I'm ready for the responsibility of taking care of a pet again. It's been the longest pet free period of my life, as I've been recovering, 11 years almost. I pick up my new puppy on Friday. I'm not looking forward to the long drive, I still haven't ventured too far from home, this will be the furthest distance I've traveled in over 10 years, but I'm up for it and in a small way I'm looking forward to the challenge.... I'll post some pictures if I can figure out how to do it with this new site software.

 

I still have some physical stuff going on, but its very manageable and some of it is related to being immobile and non-functional for a long time, rather than being directly related to drug damage. 

 

It's the middle of winter here, but I'm loving it. Its so nice to have my good feelings back, I can sit and listen to the rain and feel good about being inside in the warm, rather than being engulfed in fear and dread day after day. I'm enjoying music again, and flowers. At one point, I had no hope, believing I would never feel good again, that life would remain empty and meaningless. But it came back. Once the fear dropped away, it was all still there, waiting for me.

 

I still don't know who I am, or how to relate to anything, but its ok, something or someone is here living this life, functioning quite well, and able to enjoy it all in a new and free way I've never known before. I don't have my old patterns to fall back on, but I seem able to figure things out new now. Still have some cognitive issues, which can feel frustrating when I'm trying to do something and my brain wont cooperate the way it used to, but its ok.  In spite of my brain being different from the way it used to be, things seem to work out better than what they used to.

 

Another thing I'm grateful for is that I'm no longer unconsciously reactive to my emotions. I have some real control over my choices and behavior now. Having to endure the extreme emotions of withdrawal has taught me how to manage normal emotions so they don't control me. Of course, they can still feel unpleasant, but I've learned how to sit with them and self soothe.

 

I have a box of puppy treats to unpack now, can't remember what I ordered.... see, those cognitive issues kicking in, but it will be a nice surprise

[wantrelief]

It is really great to read another wonderful update from you, Petunia.  Everything you describe sounds so good.  I am really happy for you!

[Gridley]

Petunia, thank you for the very encouraging update.  It was very uplifting for me.  And congratulations on the puppy!

[jonnypeters1234567]

Hi Petunia, im happy you are recovering. Do you still have the vibrating tinnitus?