General Supporters: ask a sufferer (symptoms etc)

[Chris-duck]

@Swift i absolutely love your descriptions of brain things. I have nothing to add, I just like your knowledge

 

[zombycat]

@Swift every time you post, you blow my mind. So much fascinating stuff here!

In regards to what you called looping, I have a question. I don't repeat things, but I'll often find myself stuck in an obsolete mindset.

For example, we're out shopping and decide we want to go get a pizza afterward. We'll decide to go to restaurant A. Then a few minutes later one of us will remember that it's closed for renovations and decide to go to restaurant B instead. Not long after that, I'll suggest that we stop at place X on our way to restaurant A, and until someone reminds me that we changed destinations, I will have no memory of the decision to go to restaurant B or why.

Would you consider that a form of looping?

 

[Swift]

Hey, that happens to me too.
What I reckon probably happens to me in those moments is that my brain mis-files the information.
I have a plan to go to A, and that's the one that cements in my head.
We change plans to go to B, and for some reason, my brain doesn't update the file that we're now going to B.
I "know" where we're going, I just think I know we're going to A, because that's the file I've saved.
It tends to be about stuff that's unimportant or not triggering.
People will say "nah mate we're going to B, we had that conversation ten minutes ago/you suggested it/whatever."
The thing is, once they remind me, I'll generally be like, "oh yeah A is closed. I knew that. Duh." But I won't remember the conversation about B, even though it's likely that it happened.
And then I have real trouble updating the file to say "we're going to B", because it's saved as "we're going to A."
This drives my supporters absolutley nuts. It seems like such a simple thing to them, it's like I'm repeating stuff that we've already been over five times.
It drives me a bit nuts too, but I'm used to having to backtrack and retrace my steps in my thoughts.
It's like when you learn someone's name wrong. I *know* the lady at the desk's name is Monica. But I thought it was Karen for ages, and every time I see her my brain goes "that's Karen" and I have to correct myself.

My best guess as to why this happens is my brain needs to devote so much of it's energy to it's surroundings that stuff like that becomes unimportant.
My brain manages to get File A saved, but when the plan changes to File B, it's like I shut the document without saving it, in a similar fashion to an inattentive secretary.

How do supporters want us to deal with this when it happens?
I imagine it feels like we're not listening, and that we don't care what you're saying, or we're being rather obtuse.

Also, as a point of interest:
I had a fairly physically triggering appointment on Thursday, and neurofeedback on Friday.
We rigged up the electrodes, and my body rhythms and my back brain were going absolutely nuts. It looked like the EEG of someone on a treadmill, with less muscle activation, but still.
My hippocampus was all over the shop, too. The waves are supposed to be 'smooth', not spiky, and to kind of undulate in a regular pattern, between 8-12 hz. Mine were jumping around like squirrels on crack.
My front brain was in the 'low' bracket of what it should have been, meaning it wasn't functioning quickly or well. You're supposed to do 10-12 Hz, I was doing 6, effectively meaning the logical, thinking part of my brain was functioning at about half-capacity. I was up to 7-8 by the end of the session. I'm usually about 9 on a good day.

That was really interesting to me.
If you'd have asked me how long a physically triggering thing would affect my brain like that, I would have said a couple of hours, tops. I settled myself down fairly well after the appointment which took about an hour before I got in the car, and drove 1/2 an hour home, with no impact on my driving skills.
I wasn't particularly calm on Friday, but I just thought I was overtired and in pain, which always makes me more symptomatic.

I was telling my T about the appt, which I couldn't do without crying, even though it wasn't that bad at the time, and then we rigged up the EEG and holy smokes, Batman, was it off.

I find it really interesting to see what the brain does. It's also kind of... reassuring, I guess, that my brain is acting up, and it's observable and not just coming out of nowhere.

 

[zombycat]

We change plans to go to B, and for some reason, my brain doesn't update the file that we're now going to B.

This. Exactly. You described it to a T. I'm lucky in that my main supporter understands psychology and PTSD really well, so it's just something we laugh about. It bugs me a lot more than it does him. He just pats me on the head and calls me 'special'. There are plenty of things that I pat him on the head and call him 'special' for too, so it's a running joke between us, not a derogatory thing. I think it started as him trying to help me see the humor in it rather than getting frustrated.

I find it really interesting to see what the brain does. It's also kind of... reassuring, I guess, that my brain is acting up, and it's observable and not just coming out of nowhere.

I agree, that is fascinating. I'm sorry you had a rough few days, but I can understand how seeing scientific evidence of the shenanigans your brain gets up to would be comforting. We all know it's not just in our heads. Well, it IS, but you get my meaning... But yeah, seeing it right there in front of you must have felt pretty validating.

Now I'm curious what mine would look like...

 

[OrangeJulius]

@Swift oh my gosh! Thanks for this! This explains so much for understanding my boyfriend.

How do supporters want us to deal with this when it happens?

I get that he has a horrible memory with stuff like that. So I remind and remind and remind. And usually he needs the reminders. And sometimes he doesn't and he seems to get frustrated with my reminders.... but there is no method to what he remembers and forgets so what else am I supposed to do? Sometimes my 4th reminder is like he's hearing something for the first time so I go along with it. Sorry...venting a little...but to answer your question....dont get offended with reminders. Its not meant to be nagging or anything....just trying to help!

 

[zombycat]

@Orange Julius Oh Lord, I am so familiar with this. I hate when I get snippy at my supporters over reminders because it's not them I'm irritated with, it's myself. I feel like I shouldn't have to be reminded. My brain should just freaking work like everyone else's. In the moment, it seems like a complete no-brainer that I'll remember such a simple things, but then later it gone.

It's understandable that you would be frustrated because there really is no method to it that I have been able to discern. One minute I'm fine, and then next I'm standing in the shower staring blankly at the shampoo bottle with no memory of whether I've washed my hair once, five times or not at all. It's freaking scary sometimes.

If you haven't already, I recommend having a frank discussion with him about it. For example, I prefer text or email reminders instead of being interrupted from what I'm doing. I'm sure he's aware that he needs the reminders sometimes, even if he doesn't want to admit it. You can ask him if there's a certain way he'd rather you approach it, but beyond that, I really hope he's working to get a lid on unleashing his frustration in your direction.

 

[OrangeJulius]

@zombycat Thanks for your thoughts! I usually go with text reminders....then I don't have to see his reaction. And he doesn't get directly frustrated or ever say anything... it just seems/feels that way. Because I am sure he is having some sort of internal thing and not taking it out on me.....but regardless my reminder leads to some sort of discomfort which is never fun to be the cause of.

And that's the thing.... i recognize that he recognizes its ridiculous to be upset.... but hes still upset and im still upset I made him upset.... but the dog still needs to be picked up or whatever it is. Its just one of those things......

 

[Never_falter2]

Thanks for the explanation @Swift. What a fascinating job you had. Do you still work in this job?
@OrangeJulius and @zombycat: My Vet has a lot of list. Memos at his mobile phone which also give a sound at a certain time (how do you say in English by the way?), one at his white board at home, I think he has one at work. Takes written lists with him, puts notes with important stuff at the fridge. I am not sure if he is forgetful but if he is he manages to over compensate with the lists.

 

[Swift]

because it's not them I'm irritated with, it's myself.

This times about 1 million.

mobile phone which also give a sound at a certain time (how do you say in English by the way?),

Alarms? Reminder alarms?

And nah, I don't still work there. It was an interesting job, though. As a non-sciency type, I learnt a lot.
Because the equipment and people's brains are so sensitive, I wouldn't trust my skills now in that field. People deserve the best diagnosis.

(As an aside, my brain makes a fairly good 'control' trauma brain. My trauma started at around 12, and I have C-PTSD. So it wasn't so early that my brain developed differently from like, 2 or 3. But it was while my brain was still developing, so the effects are fairly visible. In addition I have no organic illnesses, things like immune system stuff, cancer, head injuries etc all show up on EEG. As do learning disabilities, intellectual disabilities, things like dyslexia, dyspraxia, ADHD, the like. I used to get a lot of kids/teens through my lab who'd been sent to rule out epilepsy as a cause for their behavioural difficulties. They almost always had clinically 'normal' EEGs, meaning they lacked the features of epilepsy or anything organic, but they looked different to a normal EEG. It's hard to study trauma patients because of ethics. The typical brain calms down after a person gets used to the situation, but the PTSD brain doesn't, meaning a lot of the samples are scientifically invalid, because you can't conclusively prove it's the PTSD causing changes rather than the person's emotional state at the time of the test. There are some great MRIs of the structural changes, though, and those are scientifically valid because you can't change your brain structure in a couple of hours. If I prick myself with a needle for half an hour, my EEG is going to look different than if I was sitting comfortably.)

 

[Swift]

Just thought I'd drop by and see if supporters had any more questions.

 

[Freida]

LOL - they will pop back in on and off -- I still get questions about my thinking thread and its been up around for months

 

[Never_falter2]

Like @Freida says.... and we also like when you visit our threads and add your insight.