glad I found this place

[mourningdove]

Hi. I'm not sure what to write here, so I'll just say thank you for creating and holding this space.

I figured out that I have CPTSD about a year ago, after many years of being misdiagnosed, but just found this site recently. I've had to take it slow reading, because sometimes I've been overwhelmed by how much I identify with people's posts. I'm really grateful for all the good information here. Got myself Pete Walker's book for Christmas and I just finished Part 1.

Think I'll leave it at that for now, as I'm feeling a bit like this about posting for the first time---> 

Thanks for reading!

[keepfighting]

Hello, mourningdove,

nice to meet you on this forum! 

I'm glad you found the courage to post here. 

Walker's book is a great resource and at the heart of many discussions here.

What have you been misdiagnosed with? I've been diagnosed with PTSD and mild depression in 2001 and in 2012 with CPTSD. Sounds like nothing but the "C" actually made a huge difference and things started falling into place that I couldn't make sense of before (...e.g. that the 'mild depression' is an integral part of my CPTSD and should not have simply been ignored all those years...).

I hope to get to know you better and hope you'll find support and understanding here.

Kudos to you, kf

[Kizzie]

Hi Mourningdove and welcome to OOTS      

Most of us know all too well how hard that first post can be to make but you did it and the sky is not falling. I honestly felt like it would the first time I posted at our sister site OOTF   . 

Figuring out about CPTSD really can be overwhelming so that's great that you are taking it slow and looking out for yourself (love that smiley - I've definitely felt that way on more than one occasion). Too often we don't know how to do that very well  so you'll read quite a bit about self-care in the various forums.

If you haven't already done so, please have a read through the Member Guidelines and when you're ready post again here or whichever forum(s) seems most relevant.

So glad you found your way here to us! 

[mourningdove]

Hey, thank you both for the warm welcomes. 

keepfighting,

Yes, the "C" was also crucial for me to understand what is really going on with me. About 16 years ago, I got the diagnoses of panic disorder and major depression, and was told that they were caused by chemical imbalances that I would have to take psych meds for life to correct. In therapy situations, I tried to talk about my past, as I intuitively knew it was important, but nobody ever wanted to hear it. Nevertheless, I even had one therapist fire me because I hadn't made enough "progress."

So I gave up on therapy for a long time, but continued taking the meds, which made me increasingly ill over the years. The whole time, part of me knew that I had been traumatized, not only in childhood generally, but I also had several experiences as a teen that might have been traumatizing in the "simple" PTSD sense for anyone. But the meds also made me really spacey, and I couldn't connect with my feelings at all despite the fact that they were controlling me.

So fast forward to now (skipping the acute med withdrawal period, because it is too triggering to talk about at the moment), I am completely off meds, which was my goal, but I've been suffering from protracted withdrawal syndrome for three years. During this time, I've made a major effort to find a "good enough" therapist, which I think I have at last. I had to go through three others, each of whom was pretty awful in their own way. But early in this process, it was at least acknowledged that I have PTSD, so it helped to have that recognized.

I don't remember where I first came across the term, CPTSD, but I searched it on the web and found the same article by Christine Courtois that is linked to on OOTS. I read it and everything fell into place for me, in terms of understanding my situation. I took it to my T, and she agreed with me that it fits. We hadn't really been hung up on diagnoses much, but in this case it actually helped me to have it, since I'd never felt that the official ones fit my experience - and more importantly, it gave an explanation of how I got to be this way and suggested how I might heal. Now that I've found OOTS and Pete Walker and I feel like I'm taking it to the next level.

Sorry, I realize that's a long-winded answer! It's actually the very short version. 

Kizzie,

Thanks. It helped me to read that you understand my first-posting anxiety. As soon as I hit "post" I found myself in EF land. My inner critic was going wild.    I've really only just begun to understand that what I'm caught in most of the time is EF. It feels strange in a really good way to know that there is an explanation for the way I feel. I'm still getting used to the idea that there are actual people out there who have similar experiences.

[Kizzie]

Hi Again MD 

Sorry to hear you had an EF      They are NOT pleasant but I agree, in an odd way it does help to know what they are. Before I knew what they were they scared me so badly. Something would trigger me and zoom I'd be in this emotional vortex and feeling like I was falling apart. But then at some point they would end and I would be able to pull the facade back into place and carry on looking (mostly) normal, but I would have this feeling of * just happened to me?   

Finding out they were EFs was such a relief "Hey, I'm having an EF, this weird thing that happens to me which I had not really been able to explain to anyone, but which makes sense now."  And I have some actual strategies for dealing with them courtesy of Pete Walker and other T's. How are you finding Walker's book by the by?  It can be a lot to digest so a lot of us read it in small chunks. 

That's great that you finally managed to find a good enough T and that she is aligned with you regarding having CPTSD. Like you, many of us spent a lot of years with a partial diagnosis or a misdiagnosis and as a result we just chugged along surviving but not really recovering. As you say, finding out you have CPTSD and then managing to find a good T really lets you take it to the next level. 

Anyway, there are indeed lots of us here who know what you're experiencing so when you're ready please post away 

[keepfighting]

Hi, md,

so sorry that you've had so many bad experiences with Ts before you found this one! Your new T sounds nice and validating and kudos to you for finding the courage to look once more for a good one after the experiences you had! You deserve a good one and I'm glad you found her at long last. 

What exactly is protracted withdrawal syndrome? Is there a chance of leaving it behind completely or is it more like a chronic disease: Here to stay, learn to live with it, enjoy the good days and hold on through the bad ones?

Best wishes, kf

[mourningdove]

Thank you, Kizzie. 

Yes, I am looking forward to trying out Walker's strategies.

It is empowering to now have an understanding of EFs. On the flip-side, though, I'm feeling very intimidated by the work I have ahead of me, because I'm realizing that I'm almost always in an EF.

I think it may be wise to read the book slowly. I was so excited to finally have such validating and detailed explanations of what I'm going through that I read through the first 2/3 very quickly and got a bit overwhelmed by it all. 


Thanks, keepfighting. 

The Wikipedia entry for protracted withdrawal syndrome (or post acute withdrawal syndrome/PAWS) is actually decent, but I copied the following from a site called Point of Return (which sells expensive supplements and which I'm not endorsing) because it is the most concise explanation that I've found:

Protracted withdrawal is also referred to as post-acute withdrawal syndrome -- a cluster of symptoms or persistent impairments that occur after a rapid withdrawal from Benzodiazepines, Sleeping Pills, Alcohol and Opiates. Some Antidepressant users also complain of Protracted Symptoms after reducing or stopping their medication too abruptly.

Protracted withdrawal symptoms may adversely affect every aspect of daily life and cause symptoms ranging from tremors, weakness, insomnia, nausea, vomiting, anxiety, depression, gastrointestinal issues, neuropathy pain, electrical 'zap' feelings in the brain, cognitive cloudiness, depersonalization, transient hallucinations or illusions, and many others. These symptoms can range from mild to severe and generally persist for 2 -12 months. A minority of people may experience symptoms for years.

Unfortunately for me, I am one of those in the minority and I'm still having symptoms 3+ years out. I think there is hope for eventually leaving it behind, but when one is in it, it's like a chronic disease because the healing happens so slowly. And there's never any way for any individual person to know exactly how long it will take for them to get better. It's been the single scariest thing that's ever happened to me, so it's often a bit hard to talk about my own experience in detail. 

I'm really glad you asked though, because I think it's important to raise awareness about PAWS, especially in populations like this that are likely to come into contact at some point with SSRIs and/or benzodiazapines (Xanax, Klonopin, Atavan, etc.). It seems to be that the risk for PAWS increases the longer one has been taking a given class of drug and the more abruptly one stops taking it.

I should probably have said earlier that I've been having severe problems lately with dissociation, so I am not always able to put words together. I just wanted to put that out there so you all don't think that I post and then disappear. 

[flookadelic]

Hello Mourningdove

After over 30 years (and a misdiagnosis of personality disorder) I got a diagnosis of PTSD about 18 months ago. Sent me off the not too steady just about coping rails a bit. *Somehow* came through that, but it was only when I came across the C that everything fell into place; reading through this forum and understanding the experiences of others was also a massive step forward for me as well in understanding exactly what I have.

I can hardly believe I spent so long thinking that my trauma was just a part of silly old me...and not a condition that could be treated, although the journey be long and often hard, thank God there is a journey to speak of. Because without it life would be a lot harder and a lot less meaningful. May as well have a hard and meaningful time than a hard and meaningless one. Having said that it isn't all as hard as we fear, there are better times too. Having the diagnosis and the precision of knowing its CPTSD sets ones compass, and that is such a powerful thing. We can be resolute in our direction although gentle in our application. For me it's a balance, too much confrontation with the box of abusive frogs leaves me exhausted and confused. Not enough work on them leaves me just treading water. The Chinese have an ancient maxim, be gently penetrating. Don't stop pushing, but beware of overdoing it or under doing it. Gentle means gentle and penetrating means progress. But that's just me, others will have their own ways and means and that's fantastic.

I haven't been here that long but have found this place to be an extraordinary, non judgemental, supportive, warm and helpful community of people who really *understand* as we have all, and are still living it. We have had the trauma and are living with the trauma but helping each other, the best we can, to grow beyond it. I have learned that there is a life beyond diagnosis and it isn't always a bed of roses, but it is such a better life than before.

[C.]

Welcome Mourning Dove,

I have to say that it makes me so angry when people are misdiagnosed, essentially harmed, but the very people who've taken an oath to help.  I worked in and around the mental health/social work field for 20+ years and I was careful not to hurt people with my knowledge, words or perceived "power."  To take the time to listen and facilitate people getting the help they needed.  There's no excuse. So I am sorry about your experience.  I was unintentionally re-traumitized by my therapist, in full EF after our sessions, just before I switched.  Grrrr. 

Then I remember that we are on the cutting edge here, that the research it out and the momentum is building in places like this forum.  CPTSD is real and it's treatable.  I'm glad that you found a "good enough" therapist and Walker's book.

I look forward to learning together.

C.

[mourningdove]

Thank you for the warm welcomes, flookadelic and C.   

I feel terrible that I didn't reply earlier. I'm not sure what happened to me. I was so optimistic and then just fell off a cliff, emotionally, and haven't been able to post because of dissociation. If I had anticipated that, I might not have joined so soon. I say that because I usually have (like people have discussed on a different thread) a fear that something is wrong if I don't get replies from people within a certain time frame, and the last thing I want to do is trigger that in others. So I apologize for having dropped off the map. I've been following along reading as best I can.

[C.]

Hello mourning dove.  One of the great things about this forum is the level of acceptance and respect.  It's common for us to feel guilty and be self-critical.  I don't know if you'll believe me yet, I hope that you do!   but you've done nothing wrong here.  It's ok.  I post simply to welcome you without expectations about a response.  If what I've posted provides some level of support that is enough.

We provide group support, but we are individuals with our own needs for pacing.  I completely understand if you need to take time to read and process.  I am happy to hear that this forum helps you.

It helps me too, and sometimes I feel triggered as well.  I hope that you continue to feel accepted and that the trust and support here grows for you.  It has for me.

Blessings for your day today

[Kizzie]

Glad you came back MourningDove     This site is bound to be triggering so don't feel you're alone in that reaction.  The good news is that here you can talk about it and work through it just as you've done.  Yay you! 

[mourningdove]

Thanks again, C. and Kizzie.

I feel a bit better thanks to what you wrote.

[Kizzie]

  and 

[keepfighting]

So glad you came back, mourningdove! 

And thank you for sharing what PAWS is all about. It sounds dreadful and I admire the way you stay positive about your future. The uncertainty that surrounds it must be disturbing. 

Kind greetings!