Seems A Lot Like Catatonia

[amelia_i]

I'm seeing a psychiatrist, and will be looking for a more appropriate one in the very near future.

 

[joeylittle]

@amelia_i, here's a link to a thread where @shimmerz and I have a pretty good back and forth about catatonia.
Oxygen And The Freeze Response
It has a pretty decent summary of the way catatonia is currently defined, in the DSM-5, if you are looking for a way to talk about it slightly more specifically - which, to be honest, usually helps doctors. Shouldn't, but seems to.

From the link:

[some experiences now] would probably be referring to the diagnosis of a Catatonia Specifier. Catatonia specifiers are seen with mood disorders, the bi-polar spectrum, and the schizophrenia spectrum. Basically, it's one of those symptoms that crosses through many other diagnoses, but it is a strong enough feature to get its own label.

In order to have "Catatonia Associated With Another Mental Disorder" (catatonia specifier), you need to meet three of twelve criteria. They are:
Stupor, catalepsy, waxy flexibility, mutism, negativism, posturing, mannerism, stereotypy, agitation without external stimuli, grimacing, echolalia, and echopraxia...The other two types of catatonia diagnosis are catatonic disorder due to another medical condition (anything non mental health), and unspecified catatonia (meaning they don't know).

An example of my point would be this: A person in (medical) shock will usually demonstrate stupor. They are also probably not speaking, but that doesn't mean they are displaying mutism. They may be non-responsive, but it's because they are occupied with the situation that caused the shock, not because they are displaying negativism.

I've jumped on my little soapbox in a few other threads involving catatonia, just because I figure, hey, knowledge is power - and there is a common mis-perception that stupor = catatonia. That's all. There could be someone out there freaking out because they think they were catatonic, when actually they were just extremely dissociated, say. And not many people connect agitation with catatonia, but when it shows up in a manic phase of bi-polar 1, (maybe along with grimacing, echolalia, and posturing), that's what's happening.

It is super-hard to diagnose. I think that the DSM-5 took a huge step in the right direction with the restructuring of schizophrenia, schizoaffective, and catatonia.

 

[shimmerz]

But how many doctors want to hear she ran a test on herself and found out she has catatonia, you know?

I am suggesting that the doctors be more aware of catatonia Chava. I am not attempting to be a pain in the butt here, but this is serious stuff and I fought for years to have it diagnosed properly. T-doc knew I had it, psychiatrists refused to even entertain the idea. It was dangerous!

As amelia states is her situation, i needed someone with me at all times. For 7 years. I had a drop attack behind a girlfriends car as she was dropping me off (because I couldn't drive anymore), and had she not checked to make sure i came around the car she would have run me over and I could do nothing about it.

And yes, as I stated in a previous post here, it was finally diagnosed when I had my 2nd drop attack in the doctors office. After.3.years. Even then psychiatrists refused to acknowledge the condition. I have 100 horror stories of how I was treated by medical professionals due to this condition. And I was perfectly aware of each one of them because you do not lose consciousness. Trauma, on top of trauma on top of trauma.

 

[Chava]

So I'd be looking for a good trauma therapist, and meanwhile looking for someone who has worked with catatonia in order to rule that in or out. ???

You just don't want to feel like you get black-listed from your local medical system. I was really afraid of my pain stuff starting to make me look too mental. I was really lucky my doctor pulled through for me. But it's is so fricking messy. So maybe the test you suggest, and also researching doctors who have experience here (but like I said, meanwhile, get a good trauma therapist....this is all still connected to trauma activation, the way initially described, right?)

 

[amelia_i]

I had a good trauma therapist in Chicago, but haven't located one here. I will try and find one here.

@joeylittle, reading it now. Right off the bat, based on what I've read of each;

Stupor

Yes, although I don't respond to stimuli, it seems. It fits better with...

catalepsy

yes

waxy flexibility

yes

mutism

yes

negativism

yes

posturing

no

mannerism

no

stereotypy

no

agitation without external stimuli

no

grimacing

yes

echolalia

no

echopraxia

no

@Chava

.this is all still connected to trauma activation, the way initially described, right?

I can only assume it's related, 'cause it didn't start until the recent traumas. But what of the way that it sometimes hits within a fraction of a second? I wasn't thinking anything, I was eating a piece of bacon, or walking, or having a conversation.

My boyfriend said he is going to share his observations in a bit, he is the one who sees all of this firsthand. Not that I expect it will be much different than the symptoms I've described.

 

[joeylittle]

Sorry, another thing:

It's easy to forget that catatonia is not its own disorder. It is a symptom - a very large, very scary symptom. Motor disregulation taken to a very high level. Ruling it in or out properly really requires a multi-phased differential diagnosis.

 

[shimmerz]

So frustrating.

"When catatonia persists for at least 24 hours, in the setting of clear functional impairment, then treatment with benzodiazepines and/or ECT should commence. If catatonia is left unrecognized and untreated it becomes chronic, and patients may die from complications of malnutrition, immobility, and/or dangerous behavior.

The DSM-IV does recognize that catatonia is frequently associated with medical illnesses and carries a significant morbidity and mortality. In fact, all physicians should screen for malignant catatonia in medically and psychiatrically compromised patients."

And in the meanwhile, while doctors f*ck around arguing and fighting with you about what you do and do not have, what you can and what you can't have, while you are freezing in inappropriate and dangerous places, if Ativan works, do your best to keep a store of them and use them.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922358/

Best of luck amelia. Keep safe. Do whatever you need to do in order to advocate for yourself.

 

[amelia_i]

@shimmerz, thanks. I'll be seeking better treatment, effective immediately. I'm sorry if this thread has contributed to your frustration. I appreciate your, and everyone else's input.

 

[Chava]

I can only assume it's related, 'cause it didn't start until the recent traumas. But what of the way that it sometimes hits within a fraction of a second? I wasn't thinking anything, I was eating a piece of bacon, or walking, or having a conversation.

Sounds like how panic can be triggered...there is a trigger, but it's very hard to identify. Meanwhile the body is already hyper-reacting and we don't know why.

I identify to most of the symptoms on your list. I don't find myself impaired in my work though (the role is very good for me) and not to the extent you describe (mine are more like I'm dead, or my body is full of lead and I'm submerged in shallow water...if I move or even breathe too deep...I will die...it's a very early body memory for me).

Most docs won't diagnose what they haven't treated. If they are assholes they will tell you that you don't have it without offering a referral. Good doctors will refer you to someone who might know better. Keep a list of your symptoms and how they impact your daily living (that's important) and keep asking for referrals when needed.

But likely something in the trauma tipping this stuff off. The nervous system is weird and amazing.

@shimmerz in your catatonia, did you experience waxy flexibility and hypertonic states together/. That might be where it doesn't fit with levels of freeze states (the tonic immobility being very tense and rigid, but the flaccid immobility being extremely mute and jelly numb)

 

[shimmerz]

Not your fault amelia. Not your fault at all. If you are freezing suddenly, which it sounds like you are, I would prefer to share what I know. Doesn't mean my experience is the same as yours, but it sounds close enough.

Negativism, btw, if you are freezing, would be a Yes in your case, not a No. Because if you are taken into hospital and asked to do something you won't be able to. That can be called Negativism, or defiance or lots of bad things that hospital staff don't like one.little.bit. Be careful.

Anyways, it isn't you, it is all the DSM stuff that is frustrating me. I lived this. For a long time. The DSM stated in the last iteration that catatonia couldn't exist outside of schizophrenia, now apparently it can. They are just now toying with the idea that they might still be wrong about how they classify, diagnose, etc. 3 years ago we would have had a discussion on a posting like this that you couldn't possibly have it without schizophrenia. Now, well, that is different. In the meanwhile, someone's life is messed up.

Sorry, going to kick some walls and smoke again.

 

[Chava]

There still aren't DSM diagnosis for my stuff (developmental trauma and CPTSD) but I'm getting kick-ass treatment. Don't need the DSM. I need the right trauma therapist.

 

[joeylittle]

@amelia_i - one thing that you might consider (if you have good insurance) is getting a referral for a full neurological workup.

A couple of things masquerade as catatonia, and they are problematic in their own right. The two that you could easily qualify for (and therefore need to be ruled out) are akinetic mutism and non-convulsive epilepsy. I am not a doctor, repeat, not a doctor. I do have a wee bit of brain damage and some experience in the whole catatonia thing. What needs to be ruled out, really, are lesions - and that's some kind of neuroimaging. I don't know much about diagnosing non-convulsive epilepsy, except that generally with suspected epilepsy someone hooks you up to an EEG sometime.

So, as opposed to immediately taking the psych route, you might want to go ahead and go the other medical disorders route. They don't use the DSM to diagnose catatonia, specifically - they take it into account, but there's a different slate of criteria. It seems like you aren't sure what triggers these, which is why I'm bringing up non-mental-health possibilities.