Discussion Of Ptsd Diagnosis Discussion

[Chava]

If we saw that "PTSD is something caused by the mind's response to a "Criteria A" event, how DO we know those things are the only things that can cause it? Yeah, we can choose to define it that way, but is that sensible. Seems like we need to agree on what PTSD "is" and then deal with what might inspire it. Mind you, I'm not arguing for "the dog ate my homework and now I have PTSD". I seriously doubt anyone comes up with the symptoms from something minor.

So I'm still here, f*cking bored on a sick day. Yeah, this sort of thinking... I was hospitalized once or twice before I was even assaulted (the first time). So after a suicide attempt, not long after the first assault, "PTSD" was thrown at me, I was creeped out by the therapist, and just felt I had too-f*cking-much-of-it and went back to drinking. No therapy, none of it. I was just further confused... because I was already f*cked up with nobody telling me how I got that way, then adding what to me felt like a big label I did not want. All they could figure out was that I was really depressed and hell bent on destroying myself. I went through a bunch of standard anti-depressants which did nothing for me. This was before Judith Hermann and any generalized ideas of complex trauma. Yet nobody was calling me borderline. I was probably borderline-borderline...incredibly self-destructive but unwilling to engage with therapists or give anyone any information.

Looking back, the early hospitalizations and a raging, sometimes violent mother (her own trauma history) probably figured into the "complex part" (that's how my current therapist views it, especially the early medical trauma and maltreatment by my mom. There are other pieces with unclear info or memory, so I leave that out. But had there been a more complex trauma-informed view at that time, I wonder what the response might have been. I nearly drank myself to death, then went through a series of whack-a-mole approaches, which in a way was necessary because my various symptoms and addictions were pretty serious. I could only "recover" to a place of chronic semi-starvation and eventually found my current therapist. Her intake of my symptoms and history (hospitalizations, etc) led her to taking a complex trauma approach, before I even told her what happened. I honestly gave no credit to much of it because it's just how it always was and I was unconscious for half the assaults (and the idea I got myself into those situations). She was really gentle with approaching it. But my medical and psychiatric history horrendous (more suicide attempts than I could remember). She has extensive trauma training. I sought her out, on some level, knowing this was important but didn't know how to even approach it.

So for a long time I had diagnosable anorexia and major depression, and then the pencil-paper-PhD "PTSD" that was good for a few days before I got the f*ck out of that clinic (sure I was immature too and had no grasp on dealing with my shit, at all). I never got direct treatment for PTSD because I ended up needing so much hospitalization and rehab. Having a label of PTSD didn't actually do anything for me. The professionals wanted to frame it as "the" incident and assume talking that thing through would fix me (I instinctively understood better, that it was about something more/deeper and couldn't be simplified to this incident, so didn't trust them, added to the fact I trusted nobody). Then years later... the therapist who had her own lengthy intake process, very thorough, and without having to ask directly right off the bat what all the bad shit was that happened, suggested a trying a trauma approach. She read my symptoms. And probably just the way I sat in her office. We do need diagnostic criteria, so not saying we don't. But this is how my experience has been very different. I most value the professionals who really understand trauma, regardless of the DMS. I also am wary of attempts to label where it is murky. In that way, I appreciate that I wasn't diagnosed as borderline based on my wide range of self-destructive behaviors. There is more to the diagnosis. But nobody tried to fit me to it because I didn't fit clearly anywhere else at the time (I did clearly fit complex trauma, but nobody had yet defined it).

If people come to this forum saying they have PTSD because their dog ate their homework (boyfriend dumped them, etc), they have an incompetent therapist, they are lying, or they are trying to self diagnosis. Fixing the DSM will not likely change any of that, so people just have to be graceful around the suffering and understanding of others and, as @KwanYingirl noted, encourage them to seek out direction from a trauma-specialized and trained professional.

@EveHarrington I wouldn't know for sure, but believe my therapist has gone through her own trauma therapy. Happens to the therapists and experts too. But really, there is a lot of science to compile. Like, having a baby doesn't mean I would know how to deliver one or deal with complications. So, while I appreciate analogies like that (having direct experience), we ourselves still don't have all the answers. In my next life, however, I will carry my CPTSD background and get my degree in neuroscience. :);) And then we'll still be drowning in a see of relative subjectivity.

But for those therapists and clinicians well trained and experienced in working with trauma, the DSM is good enough. The fact is that the childhood symptoms or complex symptoms work within that framework. It just takes a decent clinician to understand that the aspects of re-experiencing, avoidance, and hypervigilance can look quite different across "sub-types" or age of trauma. But the general dysregulation of the nervous system is all right there...different degrees and presentations. But that's for a serious clinician to work out, using the diagnostic criteria as a sort of framework. It will never work like a blood test.

 

[Chava]

I know earlier (wherever) I noted that PTSD and complexPTSD should just stay separate, and here noted they could fit under PTSD. Either way. But a trained trauma therapist could distinguish the "complex" part and particulars under "PTSD". What seems unnecessarily confusing would be including the range of symptoms described by Judith Herman under one PTSD diagnosis without breaking it into sub-parts. So that's all.

Besides, beyond issues around identity and dissociation, most other symptoms we could come up with are really just expressions of the existing criteria. Addiction? Avoidance, numbness. Somatization, if we could even prove it (very difficult)? Could either be re-experiencing or a form of hyervigilance. All these symptoms express the current symptom criteria. CPTSD expands that basic set, so PTSD incorporating CPTSD would need to expand the basic set of symptoms. But the nitty-gritty presentations barely matter, though might only be noted as examples, as is common.

Alright, maybe i'll just stay with this one thread, provided I won't be banned from it. Not saying I'm not an asshole sometimes. If I feel like inconsistencies are directed at me, I get a little bitchy. Probably shit about my mom busting a chair over my back because I talked back (I mean, because her grandpa raped her). You know... hyper-sensitive to taking on more than what is really my own stuff. My part? Hyper-sensitive, a little mouthy without directly attacking, and a good habit hiding or running away before I kiss any ass.

 

[KwanYingirl]

Well, well, well a calm respectful exchange of ideas. Still not sure that this is a safe place for me. I don't have strong feelings about Criteria A, probably because I fit perfectly in it. No gray zones with me and my trauma history. One thing about me that you might find interesting is that I had a massive exposure to darkroom chemicals in the 90's. I was left with only 30% of my lung volume, and a chemical brain injury. I am sensitized to all aldehydes, the most well known is formaldehyde and it is in frigging everything. My Neurologist is the worlds leading expert in chemical brain injury and he developed a series of tests that measure the functions of the limbic system, which is the part of the brain that volatile organic compounds effect.

My brain deficits are pervasive every part of my limbic system is damaged. When I am exposed to fumes, my reaction is exactly like PTSD reactions. Since I have a history of child sexual abuse, violent father, strangled and left for dead at age 22, ran off to London to escape the fear I had from being strangled, I was drugged and abducted on my 24th birthday. It is plain to see that I meet Criterea A for PTSD.

During the lawsuit I brought against the hospital that overexposed me to darkroom chemicals, the hospital claimed my illness was PTSD and Dr. Kilburn claimed my illness was Chemical brain injury. Dr. Kilburns science was far beyond the neuropsychologist who diagnosed me with PTSD. I settled out of court because I was so sick and suicidal, my doctors forbade me to go to trial. I ended up with a measly settlement.

Now imagine living with this dual condition. My nervous system ramps up. I have to figure out if it is chemical or psychological. My therapist can tell the difference. There are subtle differences in my word recall and short term memory.
What do you think the DSM should do with chemical brain injury? It's in discussion in order to get hospitals to stop poisoning their employees.


I think the criteria should stay trauma focused. The chemical damage can be kept at bay by avoidance of known triggers. Or should sufferers of chemical brain injury be included in the criteria.
Both conditions were inflicted by self serving men=trauma.

 

[Chava]

Now imagine living with this dual condition. My nervous system ramps up. I have to figure out if it is chemical or psychological.

Yes, really doesn't fit nicely into one box...two distinct diagnoses, but the overlap would make many things more complicated. I think that might be somewhat like somatic stuff or chronic pain along with trauma. The pain-trauma link is not uncommon, but it's still a mess because each individual needs a good medical analysis of the situation (took several doctors for me), as well as a good trauma therapist. Then, even if you have that and some information, it is still a mess...like I have a couple abnormalities on my MRI, though apparently not enough to account for my pain. There is definitely a mood trigger and most likely a protective mechanism that we can't just sort out in a few sessions.

At some point a lot of this will be informed better by endocrinology and neuroscience (baby sciences), but then these issues will really still remain complex. For me, this is largely why the body approach has been helpful...I have to learn how to decode for myself what is happening, what I can do to respond or de-escalate the pain or trigger. No one expert can tell me what is happening in my body when I'm beginning to meltdown. My therapist has helped me learn how to sort through the experience though from my own somatic awareness (still not always natural for me but has gotten easier with practice).

Little differences in the DSM won't change the research, the therapies, or the multitude of nuances such as these. I personally can't figure out how Criterion A would connect to hearing second hand (vs witnessing or experiencing)... and yet it wouldn't shock me that in some such cases there is actually a background of some other trauma. I mean not everyone tries to kill themselves after an assault. Any trauma sets us up for a lower threshhold or point of meltdown.

 

[shimmerz]

in some such cases there is actually a background of some other trauma.

This is where I get messed up. I was lied to all of my life about my pre 2 year old history. I had no idea..... and many children are painted an 'I loved you so much' picture and don't know any better than to believe it. Luckily I had a breakdown over domestic violence when I was 45 (I say luckily because they could use that as a marker for my PTSD symptoms).

However, at 15 years old I starved myself almost to death, a pattern that repeated itself until I was 40 years old. I was going catatonic and nobody knew why (catatonia is not recognized by most psychiatrists as being trauma related but psychotic behaviour (DSMIV) and since I was not psychotic, must have been lying about the catatonia), was sleeping constantly and could not work. From the age of 15! The doctors were looking for a physical component and couldn't find anything wrong with me, of course.

Trauma therapists now seem quite a bit more informed and recognize our patterns. Psychiatrists? From my experience, not so much. I would rather die than go into a hospital. They don't get me because I don't 'fit'. As far as I am concerned the DSM criteria has done nothing but thwart my quest to move forward.

I actually was under the mistaken assumption that the DSM was meant to be helpful to patients. I am not certain this is the case after my experiences. We are all different. Allopathic methods in diagnosing and healing have not worked for me. I have had to ignore most doctors and do what has felt right in my gut.

 

[Chava]

@KwanYingirl bringing up the added complexities also sort of reminds me why my brain wasn't probably fit for the more linear approaches to this discussion. I branch out and shoot from all angles, I often appear to illogically skip steps too (where I just didn't manage to communicate them well). I know this bugs the shit out of more sequential or linear thinkers. I'm surrounded by musicians so often that I forget. :) But I do see it as a big complex, globalized, system thing...body system but also a large network of input (from several fields and perspectives, but especially those of trauma experts and sufferers who communicate with them). Also, just how the diagnosis-treatment-research stuff does not happen in a wheel but more like a web.

For example, Van Der Kolk has certainly read some shit. But he's very scientific, investigative, looking for holes and patterns...not what we already know. He noted that not many sufferers after 911 even took the opportunity to receive typical CBT talk-focused therapy after their trauma. But many flocked to things like yoga. He didn't answer exactly why, nor did he scoff at it. He understood that mere talk is imperfect and many perceive as little more than re-experiencing. But he perfectly understood these sufferers were looking for ways to feel more okay in their own bodies and restore any shred of equilibrium. He, like many researchers, are informed by neuroscience as well as how sufferers are responding...in therapeutic settings and on their own. What are the patterns? And so there is a web-like interchange of ideas and theories and models and possibilities. Not linear. But webs are oddly hard to manage on the interweb!

@shimmerz , your story makes so much sense to me. It's also frustrating to go for years and decades not knowing what is wrong (and worse to be missed on diagnosis...although better than the wrong diagnosis too). Your early trauma and how that would have set up your basic nervous system and ability to feel safe is pretty major. I was so self-destructive and it seemed almost arbitrary. My mom was f*cking crazy, but my siblings weren't beating themselves with tools and cutting themselves. I think I was never sure I was okay to begin with. They maybe had a little bit of fundamental inner organization that helped them tolerate being in our house. I cracked. Often I still don't believe it matters, even as I connect to body memories, but it does help to have a therapist who could read beyond the DSM current version of trauma and understand and validate and normalize this. I don't think I really felt much hope for myself until she was able to help me connect and reframe this. It's a long process, but I'm learning the basic regulation and feeling safe and contained within myself.

 

[Seasounds]

@Chava, I like your mind/you so very much. Your contributions are well thought out. Your support has helped me. Since I find inspiration in your presence, I hope you choose to stay.

@KwanYingirl, Your insight and humor, are a joy to me. And your support has been valuable to my health. I hope you stay, too.

Diagnosis:
Not even knowing where the last thread got heated, I will pick up on the concept of diagnosis. It is so important to know that diagnosis aren't the end all and be all. I look forward to the day when a diagnosis is know as an approximating being point, upon which, through dialogue between the Provider and the patient, a flexible (due to growth and transformation) and individual work-in-progress understating can be constructed to satisfy the outside world, while the Provider and patient stand together, in a dance-like relationship, stepping together towards increase freedom and health-defined in relationship to to patient. A co-created term, no more, no less.

Thinking anyone knows: The professionals and/or ourselves do our best to know what we know; we may think we know how to, respectively, diagnosis or describe any kind of PTSD. It is judgmental and naive to think anyone is wrong or right. It is understandable, as we are human, that we may feel the need to defend our position. And how wonderful to have a discussion where we get to stand with our knowledge and experience, since many of us couldn't, before. Maybe that is why it is a sensitive issue here?

And for the purpose of expanding conversations, we start somewhere.
My psychiatrist and I had two, count them two therapeutic impasses-that lasted 4 months due to disagreements that arose when he naively tried to impose one of VanDerKolk's opinions. VanDerKolk is progressive, his is perspective doesn't totally work with my (inside) perspective.

To show how short sided our minds can be, I would think that some of the readers on this forum have had my experience. I have had conditions which no one could diagnosis, since it defied current scientific 'labels'. Because I treated it as real, and tended to it; over time the condition did resolve by my own efforts.

Discussing what and how C PTSD is, and what PTSD is, broadens my mind. This is one of my favorite aspects of being on this forum.

 

[scout86]

I don't think they'll have a real great way to diagnosis this until they can do it with a brain scan. But I do kind of think that's coming.

I had kind of a funny route to an official diagnosis. I friend told me years ago that he thought I had PTSD. Back when it was first becoming "a thing". I thought, "OK, I get it, that's what I tend to swing at people who sneak up on me." I figured that was noted and handled. (He made a game out of sneaking up on me, trying to "desensitize me" with sort of mixed results. LOL)

There was a lot of stuff that happened during the intervening years that I now realize might be considered "being symptomatic", but I've always been pretty functional, in my own, not always real functional way. A few years ago, I found myself sending a ridiculous amount of my spare time, contemplating suicide. (mine) I decided (no idea why) to try talking to someone about it instead of any of the other not very functional ways I'd dealt with stuff in my past. I've never been big on talking about stuff. My T will tell you I'm still not. In the first session, he asked about a trauma history. I thought briefly, and said, "No, not really anything all that bad." So he started asking more specific questions. I mentioned (in response to a question) that I'd been molested as a little kid but it "wasn't like he threatened to kill me or anything." He asked about car accidents. "Well, yeah, there was that time I totaled my truck. Funny story!" And I told him the story. And laughed about it. And had him laughing too.....kind of. And I told him about the time the 1000# bale of hay flipped backwards off the loader and bounced off the tractor seat where I'd been sitting. (I ducked). Also a funny story. And the 2 times I got dragged by horses. "I mean, it was only half way around the arena. Everyone made a HUGE fuss. I suppose it was scarier to watch that it was to do it. I knew I was ok, it just took awhile to get my foot out of the stirrup. LOL"

I'm not sure at what point he figured out we weren't talking about the car crash. To me, none of that stuff that's pretty clearly "You could have been killed" stuff is a big deal. I now realize that other people think it is. I still don't get it. And I now realize that might be a little off. The being molested thing? I still can't, or won't talk about the details of that. What I remember of it. I thought THAT was what we were talking about. Turns out there was more stuff back beyond that. From the sound of it, my earliest childhood was a milder version of @Chava 's and my mother was probably the origin of a lot of things. Took me well over a year to realize that. Weird!

So, technically, I meet the trauma criteria, because there really have been a couple "near death experiences". But I was totally unphased by those, so it doesn't seem like it counts. Also, most of those happened AFTER the first person said "Umm, you might be just a tick off, could be you have PTSD." The stuff with my mom? I'm pretty sure she never literally tried to kill me. I don't remember that she did. Scared me plenty. There was never any kind of bond formed at all, but that's a different diagnosis, right? Near as I can tell, my PTSD started in infancy. That's why I think it's the PERCEPTION of the situation that matters more than the literal reality of it. And if that's true, I can imagine some people getting PTSD from situations that don't literally meet the current Criteria A. If you have someone who really and truly has enough symptoms, but they don't meet criteria A, what have you got?

The thing about the DSM is, it IS just a best guess, right now. We well may find out down the road that some of it is off. I'm sure it's not horribly far off, but I'm not willing to take it as gospel either.

Actually, some of this points out why we need "experts". You may have to have PTSD to know what that's like, but I also think you might have to be "normal" to know what "normal" is. I mean, I actually have had to have my T point several things out to me that probably should have been obvious. "No Scout, most people DON'T panic when they get a phone call from their mother." I feel like I have only a vague idea what "normal" is and I really appreciate having him around to help me sort it out. On my own? I'm pretty oblivious to how differently I see a lot of things from "most people".

 

[Chava]

@Saetva thank you! I like the way you describe the provider-patient relationship. That's not common, unfortunately and most are rush-rush (and meds)! I am lucky to have an MD who knows I have a trauma background, without needing me to share those details. She is really patient with all of my questions, thorough explaining options and that she will admit she does not know what may or may not help. She treated me through recovering from my eating disorder and made several referrals for my chronic pain. As of yet, that still defies clear diagnosis, but she treats me for that anyway. She appreciates that I find some help with somatic psychotherapy even though she does not understand it well herself. She sees that I'm taking care of myself. She'll prescribe muscle relaxants, more PT, and is willing to just accept that complex pain is complex and we can't even pinpoint that on imaging or any amount of testing right now. There's an injury of sorts deep within the nervous system wiring.

 

[Sideways]

@scout86 - yup! If I had a brain tumour, I'd be okay with thebidea that the surgeon treating me had never had one themself. So I'm okay with the idea that my T has never had c-ptsd. He's still good at his job. That's what counts.

 

[Chava]

I don't think they'll have a real great way to diagnosis this until they can do it with a brain scan. But I do kind of think that's coming.

Well, they have scans. But our brains light up in different ways. One that I found remarkable was when Van der Kolk wrote about a couple that had been in a car crash together. In response to triggers following the crash, the husbands brain light up in several areas, indicative of a fight/flight response. The wife's brain, in response to the same stimuli, went nearly dim. Shut down. She dissociated. The connection Van der Kolk made was that the wife had childhood trauma and had learned to dissociate very early, so that was her body's default emergency response. Will we ever be able to do scanning for diagnosis? Well, even if it didn't cost a few thousand dollars, I'm not sure why we'd need it. If people meet the criteria, I see the scans as more useful to the research of what is happening and what helps the traumatized brains. For obscure cases, like trauma symptoms with seizures, scanning would make pretty good sense.

I'm thinking we'll more likely be able to afford neurofeedback in the not-so-super-far future as a way to read what's happening and how we are responding, and what lessens arousal or dissociation. That is already being used in therapeutic settings but the research is just in infancy. Biofeedback has become fairly standard. So neurofeedback for trauma? Not a stretch really. Somatic therapy works with the regulation stuff, but neurofeedback actually produces the results of what is happening in different parts of the brain, as far as activation (amygdala highly activated but frontal cortex offline? Trauma response). Okay, getting too nerdy over in my head. :wacky:

So, technically, I meet the trauma criteria, because there really have been a couple "near death experiences". But I was totally unphased by those, so it doesn't seem like it counts.

Molestation stands alone. Near death doesn't matter at all with that. For anyone that is ultimate violation. For a kid that is massive violation of their own body, a violation of human trust at an age when they need to feel like adults protect them and ideally the world is safe, but it is also set up for freeze/dissociation. It can really gut the "self." My mom was like an empty, angry, soulless woman. I empathize for her now. But it's like she disappeared from her own body as a kid and nothing was left in the space but rage. It works out differently for different individuals. But she had self-hatred which she masked very well and a lot of outward-directed rage (from my memories, now looking back, I also believe she was pretty dissociative in those times).

But yes, your body would also signal mega emergency systems in being dragged by a horse. Trapped, chance of major injury or death. Stomping. Who knows. Holy shit, scary. But I know I blew off a lot of my early stuff too...we do "adapt" in a way, like weave it into ourselves somehow and carry on, without necessarily knowing for a long time how it has changed us on a deeper level.

Near as I can tell, my PTSD started in infancy. That's why I think it's the PERCEPTION of the situation that matters more than the literal reality of it. And if that's true, I can imagine some people getting PTSD from situations that don't literally meet the current Criteria A.

That's probably right. I don't know if I'd even call it perception...though maybe that is the right word. It's all registered automatically. But I can be alone for days and love it. A baby left alone for days, maybe only fed once, because mom is strung out? The body puts them right into survival mode. Life threat. You also can't fight back against abusers as little kids. We know this on a deep level so we go right into freeze responses. Partly because we are just small, and on the other hand we have to maintain an attachment to the caregiver for food, basic survival. So if they have to hit us when angry, we take it (I'm not okay-ing any of this, of course, this is just how it registers in powerless mind of a child0.

Van Der Kolk and a team of leading researchers proposed DTD (Developmental Trauma Disorder) and in was not included in DSM-V. But now I'm thinking PTSD/CPTSD for adults makes sense and something like DTD for childhood trauma. Even within childhood there is such a massive variation of symptoms, but as Van Der Kolk and others have said, it is quite different from adult traumas. I have both child-adult trauma but as I've chipped away at things in therapy it is most likely my first year that was the worst. I didn't even tell my therapist about the accident of my birth (too quirky...if I explain here i'm paranoid someone out there will find me :bored:). And it was like a major lightbulb for her. I felt, :meh:, not sure if this matters (birth thing), and then I was left alone in a special unit a few years later in another city for complications. She had been seeing a lot of this crazy early trauma shit in my posture and ways I behaved in therapy. I'm so grateful for her. On a deep level, it really never felt okay for me to be alive and I've never trusted humans for real problems. Ventilators? Maybe. But humans f*ck up. Not sure, there is no conscious connection, but I believe I have a problem with "re-experiencing" the ER. I get myself into real trouble, not even meaning to, but don't ask for any help. I end up in ER and feel safe. The nurses are usually helpful but it's more about knowing the machines will keep me alive or at least let me know I'm still alive. Try cranking that shit out of the DSM criteria. :O_o::laugh::cautious:

 

[Chava]

So I'm okay with the idea that my T has never had c-ptsd. He's still good at his job. That's what counts.

The idea is that they are really basing trauma study and trauma-informed treatment on what they know of survivors. They aren't reading books so much as writing them right now, as the understanding continues to grow. If you see a regular therapist, or like a counselor who did some EMDR training but not really any extensive trauma training, sure they could miss a lot, and even create problems. But trauma-specialized therapist are taking cues from their patients and from the experts, which have compiled basic profiles of hundreds and thousands of sufferers. They've already done this. If they added something about indirect experience to the DSM I guess I'd just like to see the research, but I assume they combed through a shitload of studies and profiles. That they change a few diagnostic criteria affects my reality not at all.