Seems A Lot Like Catatonia

[Chava]

The oxygenation level is a thing that I worry about. My breathing gets really strange, I draw in a really fast, short breath, then breathe out very slowly, over the course of like... 10-15 seconds. The inhale to exhale ratio is probably 1:20. Maybe not in terms of oxygen in/c02 out, but certainly based on time.

If you have the awareness to notice your breathing like this, you are not likely in any kind of physical danger. Good to have someone close. Cold water could help too, even if you can only sip. I find sounds and sound vibrations on my body help...I can't move but can "access" that somehow internally and it helps shift the freeze so I can slowly pull out. I keep tuning forks with me.

 

[Chava]

my interest in the name of whatever this is extends only as far as wanting to know what it is so that I can get some help.

Not sure, but I'd chalk it up to a complex trauma symptom, a freeze response (vs like a separate diagnosis)....treat the complex trauma and you treat this frozen place. Does that seem like it would fit with your experience?

 

[amelia_i]

No way I could drink water, would go straight into my lungs. Thanks for the tips!

I posted my traumatic experiences earlier on in this thread; there have been a lot of them, some very severe. Childhood experiences, adult experiences. The trauma must be, as they say, complex.

 

[Chava]

Yes, I saw some of your intro. To me it sounds like a trauma symptom, so more healing for you to find a trauma specialist who understand complex trauma. So you don't probably need to treat this as a separate thing. If you relate to "flaccid immobility", it is not a diagnosis within itself. But it is a pretty serious nervous system response to trauma.

If you find a new therapist, tell them about the physical parts of your symptoms, like you describe here...how you can't move, what triggers you might notice, how your breathing changes. Don't give them ideas for labels...let them do that if they care. But work with the trauma. If they really understand early or multiple trauma they won't invalidate your symptoms.

This is sort of an interesting little bit that helps me understand myself:
http://www.elizabethbader.com/elizabethbadersblog/trauma-101-and-ptsd/

 

[amelia_i]

I don't know about the word flaccid. Everything freezes stiff. My boyfriend peeled my hand off of my mouse, and it remained in the mouse-clicking position the entire time. Is that the same thing being described?

I'll try and steer clear of using medical terminology, since, you know. Most people aren't intelligent enough to read a book, have a conversation, or otherwise learn. I wish such docs would dislodge their heads from their asses and default to the assumption that the patient is simply trying to describe their symptoms the best way they know how, not step on their feet.

 

[Chava]

In that link there is a short bit on tonic immobility, the very tense freeze, which is supposedly what we have before a floppy-faint-like flaccid freeze. The tonic and hyper-tense freeze supposedly results from both branches of the nervous system being activated (so the common example being hitting the gas pedal and the break at the same time). The flaccid freeze is where people could move your droopy body parts, so I'm a little confused....are you tense but your boyfriend could move your arm? Do you feel numb or highly activated?

I agree with you on doctors. Some can be quite arrogant and also impatient. I just know many don't love feelings of working with someone who has already self-diagnosed because it signals they might not still be open to learning other interpretations (whether through gathering more information informally through therapy, or though appropriate kinds of testing). First just get a relationship with someone who understands the whole trauma spectrum and describe the symptoms in real physical terms, how you and your body are effected...that's more telling than a label anyway. My doctor knows me well, so I can go in and ask about some disorder I am suspicious about and we can talk about it or have the right tests arranged. But mostly I'm just describing what I'm personally experiencing.

Sounds like you met with one arrogant doctor. They really aren't all like that. But I wouldn't be convinced this is catatonia. And more helpful anyway to describe your experience, like you have here. That gives the doctor/therapist more information to work with.

 

[amelia_i]

Yup, she is. I'll avoid the word next time I try and describe my symptoms, don't want anyone thinking I'm diagnosing myself. :|

 

[Chava]

don't want anyone thinking I'm diagnosing myself. :|

I've been to nearly ten doctors just in the last year....even if they are nice and generally not arrogant, they really want to feel like their job is to take make the diagnosis. We are empowered in that we can explain our experience and they have to take account for all of that. If you self-diagnose, it's too easy for them to say "no, that's not it." If you go in wanting to know why/what of it from them, they need to help you find the answer. Not sure if that make sense...just sort of how it's felt for me. I've met some difficult doctors and some really great ones and have learned how to advocate better for myself, which has been very hard.

 

[shimmerz]

But I wouldn't be convinced this is catatonia.

Nor would I, but there is a ridiculously easy way to find out...through the Ativan challenge. That would rule it out. Hospitalizations, day to day life can be very dangerous with such a sudden and profound freeze response. My issue is that whatever it is needs to be addressed, not passed off. If Ativan works, great. If not, then address the issue.

Following is some information which describe how catatonia and tonic immobility may be linked.

http://www.ncbi.nlm.nih.gov/pubmed/15482070

 

[amelia_i]

What Shimmerz said. I just want to know what I can do. And yes, it's very dangerous that it approaches so quickly at times. Driving? Out of the question. My partner is with me 95% of any given day. I'm a lucky lady for being with someone so patient and loving!

 

[Chava]

Nor would I, but there is a ridiculously easy way to find out...through the Ativan challenge.

But how many doctors want to hear she ran a test on herself and found out she has catatonia, you know? It's partly about feeling our experience, articulating it to others, and winning them over to help us get the support we need...whatever the diagnosis. I got a pure assload of good referrals and tests in the past year because I have a good relationship with my doctor. But that took a little time and a sort of her-hearing-me and a little bit of me-hearing-her. So, I'm more coming from the practical side...how does she get the support she needs? I'd say find a trauma therapist who knows the whole spectrum of trauma responses. And a good GP.

Have you had any luck getting catatonia diagnosed @shimmerz ?

 

[Chava]

I just want to know what I can do

Are you in therapy or searching for a new therapist?