CPTSD vs PTSD?

[Bunny]

Over the last 15 years, I've had dozens of labels slapped on me but no single psychiatrist seems to agree with any other.  The majority of psychologists and other mental health professionals all agree I have bipolar 2 (severe depressive episodes triggered by hormones, generally pregnancy, that last months or several years when nothing is changed but that get better within weeks of finding a new medication that works,  with many years with no depression in between, and averaging about one hypomanic episode a year ago since starting medications), and PTSD.  Oh and I also have been formally diagnosed with Aspergers Syndrome and ADHD.

However, as I said, general psychiatrists seem to find me too hard and give me a different label each time.  My current psychiatrist who I've been seeing nearly three years now has said I have MDD (possibly bipolar 2 but won't diagnose me with it until she sees me hypomanic which is never going to happen as I only see her every few months when not depressed and my hypomanic episodes only last 1-2 weeks), and CPTSD.  I have repeatedly asked her why she thinks I have CPTSD and all I get is vague answers and her changing the topic (which is quite annoying since it's several hundred dollars out of pocket per visit to see her which is something I really can't afford when I have chronic physical health problems that are costly and I can't work).  She alludes to "emotion regulation issues", but when I ask what that means, she just alludes to my three major depressive episodes (over the last 20 years) as meeting the criteria for the emotional regulation problems of CPTSD which we all know if that were the case, then EVERY person who has ever been through a trauma and has had more than one major depressive episodes would also be labelled as having CPTSD and that's obviously not the case.

I mean, I don't dispute I have regular PTSD.  I am plagued by nightmares and flashbacks of some things that happened around 13 years ago.  I can't sleep at night because I'm too scared of the nightmares, certainly places, people doing certain behaviours, certain activities etc cause flashbacks.  There are some places I'm too scared to go.  I quit my dream job two years ago because of witnessing an incident at work where someone did to a client something that was done to me 13 years ago.  And I live with the shame of quitting instead of speaking up for the poor woman who I witnessed be abused.  I hate myself for dissociating when it was happening, watching every single tiny detail but not being able to get help, not even being able to move, but at the same time, not being able to look away either.  And I hate myself for not speaking up after and running away and quitting instead - and then when I was finally able to speak about what happened to anyone, still being too scared to report what I witnessed because I know it wouldn't help the woman as no one would believe me (especially as she didn't report it) and secondly it was my word against a dozen other highly respected people, and it would look like I was just making the complaint in response to not getting my job back when I finally had the courage to re-apply for it (it's one with openings every 6 months).

There is no doubt I have PTSD with dissociation.  But I really don't think I have CPTSD.  I've never been formally tested for it (all the SIDES, SIDES SR and other testing that can be done).  My only "emotional dysregulation" problems are having had three episodes of depression, all hormone related, two of them pregnancy, and the occasional hypomanic episode - and I come from a family of people with bipolar.  There are several of the 6 criteria (or 7, depending on whose criteria you use), for CPTSD I don't meet.  Basically, the only criteria I meet are the ones that overlap with regular PTSD with dissociation (I should add, I only dissociated during my two postnatal depression episodes, never at any other time and my guess is that is related to the fact that the postpartum period is a trigger for my PTSD symptoms as my oldest child's birth was the initial cause of my PTSD - we both nearly died due to severe medical negligence - and it was the trigger for a cascade of events that led to the even more damaging couple of events that caused the severe PTSD).

My psychiatrist has admitted she's not a trauma expert, but I know professionally the majority of psychiatrists who work in this town (it's not very big, and please don't ask me how I know them as I'm not comfortable putting that much detail on the internet) and the view of every psychiatrist I know here is that if you have PTSD as an adult and ever been abused as a child, then you have CPTSD (and sadly the majority of them believe CPTSD and BPD are the same thing - they are completely utterly clueless).

I feel like my psychiatrist is ignoring my actual issues in favour of the ones she deems me as having because according to her, I have CPTSD so I "must" have particular issues (I'm so over a mental health system where instead of observed symptoms leading to a diagnosis, instead people are giving a diagnosis first, based on the psychiatrists "gut" - yes I have had several say they actually base their diagnosis on their gut feeling the diagnostic criteria for mental conditions - especially in regards to BPD and CPTSD, and once they have given someone a label based on the psychiatrist's "gut feeling" they then deem that the client must have particular symptoms and therefore try to treat the person for those symptoms whether the person actually has them or not).    The whole thing is silly.  When I had antenatal depression last, I was absolutely massively terrified of going through labour again because of oldest child and I nearly dying.  I was suicidal because I felt like suicide would be preferable to going through labour again.  I didn't want to die but I was scared.  So I sought help and tried everything I knew of.  Every therapy out there.  I tried EMDR (which I used to think was a really weird therapy and must be just placebo and no way it could genuinely help anyone other than those gullible enough to fall for a placebo).  And the funny thing is, it worked.  It worked amazingly.  For my PTSD symptoms anyway.  Did nothing for my depression which needed an antidepressant, which my GP and I wanted me to be on, but the medication specialist I was seeing while pregnant was against it, especially with all the medications I was on for physical health problems (he later apologised and said he should have put me on an antidepressant while pregnant).

But when I started seeing my psychiatrist a few months later before I got treatment for the perinatal depression, and my PTSD was back even worse because something that happened to my baby in hospital a few days after birth triggered my PTSD very badly (but hey, at least I not only survived labour, but I actually wasn't even bothered by all the things that went wrong medically, I was just full of happy expectations), she was all like you have CPTSD, EMDR never helps people with CPTSD, etc.   I dearly wish I could have afforded to go back to the psychologist I was doing EMDR with but having been off work the last few months of my pregnancy, my maternity leave being unpaid, and quitting my job after witnessing the event I mentioned above,  I couldn't afford EMDR.

The psych did badger me into doing DBT, because she kept going on and on and on for a year (long after my depressive episode was over, and even my PTSD symptoms like nightmares and flashbacks were nearly gone, and the only real problem I was having was being too scared to go near things that reminded me of the original trauma, including a certain type of people who remind me of the original perpetrator).  But just like the previous two times I had done DBT (both times I actually believed it would help and it didn't), it didn't do a thing.   The only people I had anything in common with were the psychologists running the group.  I was the only one there that didn't have a drug or alcohol addiction, I was the only one there who didn't have a problem with impulsiveness, I was the only one there who didn't have an anger problem, and so on.   Everyone else in the group kept talking about how hard and challenging it was, how it was teaching them so much, my only thoughts were "This is so boring and irrelevant to me and my symptoms".

The thing is, when I'm not depressed (I don't see hypomania as a problem - if it weren't for the damage to my physical health in overdoing things, it wouldn't even be an issue at all), the only really issues I have can be clumped into my asperger/ADHD problems (social anxiety, being disorganised, difficulty focusing for long periods, etc) and "regular" PTSD symptoms of nightmares, flashbacks and massive avoidance of things that remind me of the original trauma (eg quitting my dream job to run away from a single reminder). 

I feel like my psychiatrist is focused on all these CPTSD related treatments like DBT for symptoms I don't have and never have had, that do nothing for my "regular" PTSD symptoms that are an ongoing problem.  Why am I posting about this now?  Something happened 6 weeks ago that reminded me of the original trauma and I'mback to being totally unable to sleep at night because I'm too scared to sleep because of nightmares, but lying in bed awake means I'm left drowning in flashbacks.  I'm too scared to leave the house in case something reminds me of it, but at the same time, being at home is a torment because what happened 6 weeks ago, happened at home.

I've made more frequent appointments with my  psychologist (because she is actually mostly affordable), who is being very supportive.  I've booked into seeing her weekly (I hadn't seen her since before this event happened 6 weeks ago as I cut back my visits with her because I was doing well, and then not long after it happened, I went to stay with family for nearly a month as I couldn't cope with being in my home at all at first).  But I'm back to seeing her weekly now.  So far, she's only just "debriefed" me on what actually happened 6 weeks ago.  The appointment this coming week, we're going to discuss how we're going to tackle things - both the recent trigger and how to deal with the symptoms I'm having now, and also longer term to work on trying to prevent the nightmares and flashbacks from coming back, although given the severity of the trigger, I'm not actually sure there is anything that could prevent it.  I'm trying to avoid too much detail, but when someone has been a survivor of a very violent event,  I don't think there is anything that could prevent PTSD symptoms from re occurring when surviving another violent event.  But anyway, we're going to work on that.

But the thing is, I'd like my psychiatrist to be on board as well, to stop pushing therapies I've tried and didn't work, to stop saying therapies that have worked in the past are irrelevant and not going to help (I'm 99% sure they would help, but at this stage my budget doesn't allow them anyway), and to work with me on what we can do to deal with the symptoms I do have.  And I feel as long as she's hooked on the CPTSD diagnosis, she is ignoring my actual symptoms.  I mean, I'm not ruling out that I have CPTSD, but I really don't think I do.  And it's a lot easier I think to get her to focus on my actual symptoms if CPTSD is ruled out altogether.  I mean my symptoms are my symptoms no matter what label is thrown at them, but psychiatrists are stubborn creatures and it's a lot easier to get help for  particular symptoms when you have the label they associate with those symptoms.

So in my very long winded way, what is the definitive differences between CPTSD and regular PTSD with very clear definitions, so that 1. I can know for myself whether it's CPTSD or regular PTSD (I have read so very many books on CPTSD and am yet to find a simple answer to this question) and 2. if it points towards what I'm already pretty sure of (that I have regular PTSD with dissociation at times, not CPTSD), a way to explain it to my psychiatrist who is not a trauma expert (and thankfully at least acknowledges that).  Ultimately it shouldn't matter what the label is, but it does matter because my psychiatrist is not thinking along the same lines as my psychologist and me and it's kind of interfering with the success of therapy.  And quite simply, I just want the nightmares and flashbacks to stop without me having to leave my home - I have a mortgage and can't afford to sell and get another in the current market and the ridiculous thing about where I live, mortgages are less than rents so selling is really not an option.  So I desperately need something that works for my house now being a trigger for my flashbacks and nightmares which really needs my psychiatrist and psychologist thinking the same way.

Anyway, apologies for the long post.

[Butterfly]

 First and most apologize profusely I did not get to read all of your post as I am in a rush and I'm running late but I saw the subject line and wanted to pop by with a thought. What I have heard and there is a post here somewhere regarding this, PTSD versus cPTSD is  that PTSD assumes that was a dramatic event and treatment is to get you back to normal before the Trumatic event happened. Treatment for the PTSD is different because with cPTSD there is no normal to return to and it has to be created from scratch which is why some of the traditional treatment for PTSD do not work for cPTSD. Those raised in a toxic environment have no normal to return to so it needs to be created from scratch. I'm not sure where the post is about that but I just wanted to get you started on that thought and did scan through your post but need to run for now and will hopefully be able to check back later.

[Kizzie]

HI Bunny - there's an article here that lays out the differences - http://journals.co-action.net/index.php/ejpt/article/view/25097. The research was conducted by  some leading traumatologists so it's a credible resource.  In short they suggest that CPTSD shares three symptoms with PTSD, but has an additional three which distinguish it from PTSD (see http://www.outofthestorm.website/symptoms/). 

[Bunny]

First and most apologize profusely I did not get to read all of your post as I am in a rush and I'm running late but I saw the subject line and wanted to pop by with a thought. What I have heard and there is a post here somewhere regarding this, PTSD versus cPTSD is  that PTSD assumes that was a dramatic event and treatment is to get you back to normal before the Trumatic event happened. Treatment for the PTSD is different because with cPTSD there is no normal to return to and it has to be created from scratch which is why some of the traditional treatment for PTSD do not work for cPTSD. Those raised in a toxic environment have no normal to return to so it needs to be created from scratch.

Thanks Butterfly and Kizzie.

I've read so many things about the overlap of three symptoms and three distinguishing symptoms, plus all the stuff that calls it DESNOS rather than CPTSD.  I've seen lists of 7 versus 6 symptoms used to describe it.  But despite having worked in mental health myself, I still haven't found a simple answer.  I mean most psychiatrists I have worked with have the attitude that CPTSD is the same as BPD which is an extremely ignorant view (don't even get me started on how ignorant most psychiatrists are in so many ways!).  But the issue I have is so many psychiatrists and others working in mental health jump straight to the conclusion of someone who has the three PTSD symptoms but not the additional three CPTSD symtpoms must automatically have CPTSD if they were abused as a child.

I was abused as a child, but no PTSD symptoms at all (complex or "simple") until my daughter and I nearly died during labour with her.  (actually that's not 100% correct - I suffered mild PTSD after a car accident two years earlier and nearly 20 years later I still can't get in a car with a male driver on rainy days in my home town at exam time  when a certain type of treee is in bloom.  but other than that horrible specific situation of male driver, wet weather, jacarandas in bloom everywhere and exam time, I'm over that accident), other than very mild symptoms after that car accident, I never had any PTSD symptoms until my daughter and I nearly died. 

The situation was compounded by the fact it was due to very serious medical malpractice, and the hospital did everything they could to cover it up including hiding the serious damage I was left with internally after the statute of limitations to sue had run out -(telling me for four years my severe abdo pain was "normal") and even then, refusing to hand over my medical records until 12 years later, when the hospital who delivered my next child threatened all sorts of legal action etc.  And it's why my second round of perinatal depression was more precisely perinatal PTSD because of the battle to try and get my medical records, which through only a miracle of timing (my youngest being born prematurely, not on time) that her and my life weren't put in serious risk - instead it was only moderate risk.

But after my older daughter was born, dealing with severe PTSD, being terrified she was going to die in her sleep meant I couldn't sleep at all because I was constantly checking to make sure she was still breathing, if I passed out from exhaustion, I'd wake up panicking that she was dead.  I was left feeling like I'd gone to hospital for surgery and been handed a baby and that her "real" parents were going to ask for her back one day, that every knock at the door was going to be the police or child protection asking for her to be returned to these "real" parents.  And then when I finally sought help when she was 6 months old, unfortunately being a youngish mother (early 20s), because of the combination of the hospital wanting to cover their own asses and not admit that I had serious PTSD from the medical negligence, and due to my age, they tried to convince everyone that it was a pre existing mental condition I had, that there was no "normal" for me to return to.  And as everyone here probably knows, whether it's CPTSD or BPD or any other condition from childhood, sadly people with these diagnoses are treated very poorly by the mental health professional.  And they don't deserve it!  Two of my closest female friends have BPD, my exhusband has BPD, my sister has CPTSD due to abuse by a teacher as a child - my friends and my sister are good people, and my ex is a creep but that's due to his additional NPD/ASPD symptoms not his BPD.

It makes me really angry to see the sickening abuse of people with CPTSD or BPD in the mental health system.  And due to the deliberate misdiagnosis to protect themselves from being sued, my "simple" PTSD from the birth trauma was dismissed as a pre existing long term condition (despite not having any symptoms before my daughter's birth), and the abuse that I got after I was misdiagnosed jjust added to the severe PTSD I was already suffering.

But that is an issue that has come up with my psychiatrist now.  She throws the CPTSD label at me (says I definitely don't have BPD because I don't have any of the abandonment or other BPD-only symptoms) based purely on the fact that I have PTSD and was abused as a child.  I've been open with her - yes my parents were physically abusive (and emotionally and verbally abusive), but I had happy secure relationships with all of my grandparents who I spent a lot of time with as a kid, as well as a teacher who has been like a mother to me for 30 years.  Other than my aspergers (which I proudly say makes me weird compared to most people), and I do suffer from bipolar (but with very distinct clear cut episodes with years between episodes), I was just a regular person with no PTSD symptoms at all before I had my oldest child.  And I was actually 99% symptom free for quite a number of years until I had my second child which brought back the PTSD symptoms while I was pregnant because I wanted her out of me because I was so scared she was going to die inside of me.

Having talked to a lot of other women who suffer birth trauma related PTSD (and especially those whose trauma involved medical negligence, life put in serious danger for them or their child, and then had their PTSD afterwards mocked by the so called "professionals) my symptoms have only ever been just normal for someone who has been through the birth trauma that I went through.  Sadly extremely very normal (and considering I'm an out and proud weird person, me being "normal" is unusual).

But my psychiatrist seems to have this obsession about me having CPTSD because I was abused as a child, I somehow must have had symptoms before the birth of my older child.  Which is nonsense!   Fair enough she has only seen me for just under three years now - but that's the point! Before I was pregnant with my youngest child, I'd been fine for years.  If it was CPTSD, there wouldn't have been those years of having a "normal" (ie symptom free) life.  (I should add there is a huge gap between when my children were born).

Butterfly I think what you said describes exactly the problem I'm having with my psych.  Because she's jumped to the conclusion wrongly that I have CPTSD, she is pushing me to do all these therapies to create a normal from scratch - when I already had a normal I wanted to return to.  (I mean, I do have issues that I wanted to work on that are very separate from the PTSD such as my aspergers means I have social phobia and mild OCD, so there are parts of my pre-existing "normal" that I do want to improve on).

I can't change psychiatrists (I live in a relatively small town where several psychiatrists have left recently and no one has been taking new patients privately for years, and the public system is so overrun that pretty much unless you're in hospital, or jail, or suffer from severe uncontrolled psychoses, you can't see a psychiatrist through the public system other than for a once year medication review).  And the thing is, I want help with the symptoms I am having  (I have a second PTSD trigger - my older child's father suffered male PND after our daughter was born and he became violent, tried to kill me a few times and I ended up throwing him out for beating our toddler one day).  The combination of my younger child's birth and my ex starting to stalk and threaten me last year (after quite a number of years of no contact at all) and a third trigger related to those two things that I don't want to talk about, has seen the return of the nightmares and flashbacks over the last year.

But my psych keeps referring me to all these therapies for CPTSD, many of which I've done before that were waste of time, but she kept insisting they work for regular PTSD symptoms as well, and even though I'm a pessimist overall when it comes to anything medical related (including psychological therapies), I also am open minded enough to give anything a go - I'll even give therapies a few goes in case it didn't work the first time because the therapist was doing it wrong or wasn't the right "fit" for me.  And the funny thing is, as I think I already said, I used to think EMDR (for "simple" PTSD) was a lot of rubbish and could only work on weak minded people who fall for the placebo effect.  I was stunned when I tried it and it had such a good effect.  I honestly don't think I'd have got through labour if I hadn't done EMDR when I was pregnant - not just survived labour, but I was happy and excited (between contractions anyway lol!).  Between contractions I was telling jokes, and once they finally got the epidural in (after an hour and literally more than a dozen attempts by three different doctors - something I didn't panic about either which was a miracle!), I couldn't stop smiling with excitement at finally getting to meet my baby after 8 months of wanting her out.

I mean, surely the evidence for my psych would be that the therapies for simple PTSD have helped even when I was incredibly negative about them (I seriously had to bullied into doing EMDR because I thought it was such a waste of time), and therapies for CPTSD which I went into with an open mind and the therapists were great, highly intelligent, educated and caring, (I still see my former DBT therapist for one-on-one non-DBT therapy), did nothing at all (except make me feel so different from everyone else in the group for the group therapies).

Since I can't change psychiatrists, and I don't want to stop seeing any psychiatrist altogether (as I do need medication management to keep the bipolar away - it does come back every 5 years or so even on meds and needs  a change of medications then, and I also would like to have one more child and I know pregnancy is a serious risk factor for both depression and PTSD for me), I feel like I need for my psychiatrist to focus on the symptoms I have and the therapies to treat those symptoms, rather than getting caught up with therapies to treat labels she has put on me.

Which means making her see that there is a pre-trauma normal for me to go back to!  But how do I do that?

[Kizzie]

Just a quick post as I have to dash but the fact that you did have significant caring people in your childhood would mean you likely did escape developing CPTSD.  You did have them to counterbalance everything your parents doled out which can build resiliency and a buffer.  I think there's  quite a bit of research on significant others and resiliency so maybe do a search.