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Seeking Help with Blackouts

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Seeking Help with Blackouts

Postby Tadcken » Fri Aug 23, 2019 5:01 am

Hello everyone,

My name is Allison and I’m seeking advice and guidance for my partner. She is 26 years old, a PhD student, and she has been dealing with some difficulties with something we are calling blackouts. We are writing this post together as an attempt for us to reach out to find what good next steps would be since they are causing her a lot of distress.

The blackouts started a year and a half ago and occur irregularly, averaging 2-3 times a month, and we are still trying to identify their cause. She doesn’t use drugs, and hasn’t drank alcohol since this began. They happen at various times of the day. Sometimes they seem to be triggered by a stressful interaction with another person, but other times they come out of nowhere. During the blackouts she continues to do normal things: she eats, talks with people, and on one occasion she even wrote herself a reminder and apparently drove to pick up dinner. Despite that, she does not act like herself during the blackouts. She varies in how she acts: sometimes quiet, sometimes talkative. In general however, she tends to say things that she would not otherwise. Sometimes they are harsh or out of character. On a few occasions she has even been hostile.

These actions alone are distressing for her but following the blackout she has no memory of what happened. Anything she said, wrote, or did is completely lost to her as though she has amnesia for that period of time. These have all been isolated incidents and she has thankfully been able to function normally outside of these blackouts.They seem to occur outside her school and work times and to mainly occur when she is interacting with people she is intimate or close with.

She has been to her general practitioner doctor, a neurologist, and a neurosurgeon, and had an MRI and EEG, all of which confirmed there is no neurological cause for the blackouts and they suggested it might have to do with stress. She has also confirmed with her gynecologist there are no hormonal issues. She is on a waiting list for a psychiatrist but the timeframe for it is uncertain. To make matters worse, she had a very unhelpful experience with the therapist she’s been seeing for the past year. Her therapist said she was “stumped” and at a loss on how to proceed. She was really hoping that therapy would provide guidance and hope for her with these difficulties. She also recently visited a local general mental health support group which was full of kind people, but it wasn’t very helpful for her particular problem.

We are hoping for a few things here. Firstly, it would be nice to hear from others who experience something similar to blackouts. My partner is feeling very alone with what she’s dealing with and the lack of assistance from medical professionals has made things very daunting. Secondly, suggestions on next steps or good resources would be very appreciated. At this point, we are in a bit of waiting game for the psychiatrist and it would be good to have more immediate steps.

Any help, insight, guidance, or advice is much appreciated. Thank you very much from both of us.
Last edited by Johnny-Jack on Fri Aug 23, 2019 9:33 pm, edited 1 time in total.
Reason: moved this topic from Dissociative Amnesia (no change to text)
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Re: Seeking Help with Blackouts

Postby Amythyst » Fri Aug 23, 2019 5:05 pm

Hey Allison,

That really sucks about her therapist being clueless. Is your partner still seeing that therapist?

So you must have some suspicions about dissociation cos you posted in a forum for dissociative amnesia.

I dunno much about dissociative amnesia on its own, but we get it through our DID. We know what its like to like, suddenly discover you've missed some minutes, or hours, or days even, and have no clue whats going on or what we did and stuff. We know it can be scary and all.

What's worked for us, but its been like, a gradual thing, it takes time, is we started journalling. Writing stuff down helps with memory, but also gives you something to refer back to. We use a pen & notebook but some people use apps or just like a doc file on the computer or whatever.

And we work on internal communication, so we get better at like directly sharing memories and knowledge and stuff between us all. And we work on being coconsious, so we're not completely blacked out when someone else is here. I dunno if those suggestions help or whatever but if it is a dissociation thing then maybe?

While you're waiting to see the psychiatrist you could suggest your partner maybe tries a screening test for dissociation. That might help to narrow things down, or rule things out. There's two that can be done online here:
https://support.pods-online.org.uk/efor ... ol-1-des/4
https://support.pods-online.org.uk/efor ... 2-sdq-20/6

Those don't like do a diagnosis or whatever but they can help give some ideas, if dissociation is what's actually going on.

You might also wanna post in the DID forum cos it's way more active and you'll get more responses and stuff there. Or see if your partner wants to sign up herself. The folks there are really friendly and supportive.

Good luck.

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Re: Seeking Help with Blackouts

Postby Sticky » Fri Aug 23, 2019 8:39 pm

Amythyst wrote:Hey Allison,

That really sucks about her therapist being clueless. Is your partner still seeing that therapist?

So you must have some suspicions about dissociation cos you posted in a forum for dissociative amnesia.

I dunno much about dissociative amnesia on its own, but we get it through our DID. We know what its like to like, suddenly discover you've missed some minutes, or hours, or days even, and have no clue whats going on or what we did and stuff. We know it can be scary and all.

What's worked for us, but its been like, a gradual thing, it takes time, is we started journalling. Writing stuff down helps with memory, but also gives you something to refer back to. We use a pen & notebook but some people use apps or just like a doc file on the computer or whatever.

And we work on internal communication, so we get better at like directly sharing memories and knowledge and stuff between us all. And we work on being coconsious, so we're not completely blacked out when someone else is here. I dunno if those suggestions help or whatever but if it is a dissociation thing then maybe?

While you're waiting to see the psychiatrist you could suggest your partner maybe tries a screening test for dissociation. That might help to narrow things down, or rule things out. There's two that can be done online here:
https://support.pods-online.org.uk/efor ... ol-1-des/4
https://support.pods-online.org.uk/efor ... 2-sdq-20/6

Those don't like do a diagnosis or whatever but they can help give some ideas, if dissociation is what's actually going on.

You might also wanna post in the DID forum cos it's way more active and you'll get more responses and stuff there. Or see if your partner wants to sign up herself. The folks there are really friendly and supportive.

Good luck.

Viola


Hello! I am the aforementioned partner of Allison, and you can call me Sticky. I wanted to thank you very much for your reply. It makes things feel less crazy knowing there are really people who've experienced something like this too. In a way it still feels unreal, and the lack of success with medical professionals hasn't helped that much.

The journaling is a good idea. I started keeping a log to record all the information about the blackouts we can, but day-to-day journaling sounds like it will be helpful too.

We've gone ahead and reached out on the DID forum as well. Thank you for the suggestion. We posted here because I used to have occasional events involving some form of dissociation, essentially "shutting down" on my bed or someplace and losing time for an hour or two. That felt very different from what's happening now though, since before this new problem started I simply wouldn't move and would just wake up in the same place. Now I wake up and there's food in the fridge I don't remember buying, or I wake up having already showered and I discover I sent a mean message to my partner.

As for the therapist, I haven't scheduled another appointment with her since then and I'm not certain I will with that therapist.

Again thank you so much for your time and input,

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Re: Seeking Help with Blackouts

Postby Amythyst » Fri Aug 23, 2019 10:31 pm

Sticky wrote:We posted here because I used to have occasional events involving some form of dissociation, essentially "shutting down" on my bed or someplace and losing time for an hour or two. That felt very different from what's happening now though, since before this new problem started I simply wouldn't move and would just wake up in the same place. Now I wake up and there's food in the fridge I don't remember buying, or I wake up having already showered and I discover I sent a mean message to my partner.

Hey Sticky,

If it helps you feel better, none of this is too unusual I think. We didn't used to get the 'waking up' sensation, our blackouts were so subtle we almost never knew we were having them before. People would tell us we 'spaced out' a lot and thought we were 'wierd' but we didn't really know what was going on.

Our previous host was really oblivious to everything, kinda combination of the others covering their tracks, and her just like not wanting to know so she blocked stuff out & forgot it.

Its only since we became aware of our DID and aware of each other that we started like actually catching these things. Journalling helped with that but was a bit wierd at first too - like go to write something down and find it was already written out yesterday, by someone else, lol.


Sticky wrote:As for the therapist, I haven't scheduled another appointment with her since then and I'm not certain I will with that therapist.

Yeah understood. If you're looking for a new T, best to find one with experience working with trauma and DID patients etc. Our first one didn't know what she was doing and we wasted like 9 months with her. Now we're seeing one who has some experience with this stuff and its a lot better.

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Re: Seeking Help with Blackouts

Postby Sticky » Fri Aug 23, 2019 10:53 pm

Amythyst wrote:If it helps you feel better, none of this is too unusual I think. We didn't used to get the 'waking up' sensation, our blackouts were so subtle we almost never knew we were having them before. People would tell us we 'spaced out' a lot and thought we were 'wierd' but we didn't really know what was going on.


"Waking up" might not have been the best way for me to describe it. Probably most of the blackouts I don't actually know about until a day or two later when I'm told/asked about something weird I said. But there are some times where if the last thing I remember was being on a Skype/Discord call with my partner, but the next thing I realize is I'm in another room entirely and it's an hour later, it feels scary and noticeable.

Thank you for the advice with therapy as well. Glad to hear things are going smoother for you. The next time I look I'll try to find someone who works with trauma/dissociation. The time with my most recent one ended up feeling like a waste and a failure unfortunately, but hearing that gives me some more hope. Is it alright if I ask how you went about searching for one?

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Re: Seeking Help with Blackouts

Postby Amythyst » Fri Aug 23, 2019 11:42 pm

Sticky wrote:"Waking up" might not have been the best way for me to describe it. Probably most of the blackouts I don't actually know about until a day or two later when I'm told/asked about something weird I said. But there are some times where if the last thing I remember was being on a Skype/Discord call with my partner, but the next thing I realize is I'm in another room entirely and it's an hour later, it feels scary and noticeable.

Yeah no worries. Most of our lost time is subtle, no noticable start or end, but sometimes we do get the 'waking up' sensation. And yeah it can be totally freaky at first. Like we've had it like suddenly waking up in the car, or out walking somewhere, and like wait where the ###$ am I and what am I doing here?! More often we've woken up in the bath for some reason lol. Like just sitting there in a bubble bath and thinking huh, ok... lol. :lol:

Sticky wrote:Is it alright if I ask how you went about searching for one?

So first place we looked was through the ISSTD, they have a 'find a therapist' thing on their website that you can use to search for Ts who've had their training. ISSTD's website also has lots of other resources and stuff too btw. Here's their find a therapist thing:
https://isstd.connectedcommunity.org/ne ... ofessional

We found a handful through them that were kinda in the area but they were all completely booked. So we asked the ones who couldn't see us if they knew anyone else around, and got a few more leads that way. And we just did like basic websearches for therapists with training for DID or trauma. That found us a couple more hits, we did like a little free consultation with a couple, and picked the one we liked best. It was a process tho, took like 6 weeks or so I think? We probably contacted like a half dozen before finally picking one.

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Re: Seeking Help with Blackouts

Postby Una+ » Sat Aug 24, 2019 1:00 am

Hello Sticky! Hm. So in the past you had been having absence seizures, and now you are losing time. Sounds like DID. If so, that's good! Properly treated, DID has an excellent prognosis.

You are not alone. Lots of high functioning, high achieving professionals have DID. And please note that while you lose time someone else is taking care of business for you. That is much better than absence seizures and a really good sign of a cooperative system of other parts looking out for you.

Okay, so they communicate content that you did not authorize and you would not have communicated if you had been there. Is that so bad? They may know things you do not. And they have their own points of view.

I have no history of absence seizures but before therapy I did sometimes lose time and while I was gone some quite unfortunate stuff happened. No more, I am happy to say!
Dx DID older woman married w kids. 0 Una, host + 3, 1, 5. 1 animal. 2 older man. 3 teen girl. 4 girl behind amnesia wall. 5 girl in love. Our thread.
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Re: Seeking Help with Blackouts

Postby Sticky » Sat Aug 24, 2019 6:41 pm

Amythyst wrote:So first place we looked was through the ISSTD, they have a 'find a therapist' thing on their website that you can use to search for Ts who've had their training. ISSTD's website also has lots of other resources and stuff too btw. Here's their find a therapist thing:
https://isstd.connectedcommunity.org/ne ... ofessional


This looks like it could be a useful resource! Thank you very much for sharing. It is a process trying to find someone and I've had some issues with different therapists in the past, but I know there are some out there who can be helpful.

Una+ wrote:You are not alone. Lots of high functioning, high achieving professionals have DID. And please note that while you lose time someone else is taking care of business for you. That is much better than absence seizures and a really good sign of a cooperative system of other parts looking out for you.


Howdy, Una! I greatly appreciate your kind words. The truth is I've had a lot of fear of the possibility of DID. I have done a lot of paranoid reading about different issues, seizures, depersonalization disorder, so on, and that bout of research included DID and its symptoms. I see it is a very real thing people deal with and it's just a coping mechanism, but I still don't exactly understand it and I still feel the kneejerk reaction that it couldn't possibly apply to me. I don't hear voices or anything, and I don't really grasp concepts like "internal communication" or what that would look like. I'm sure it would be very difficult to describe though.

Outside of the blackouts happening, everything seems normal to me. Whatever the case, what's happening hasn't interfered with my work, which is a huge relief since that's my biggest fear right now. It makes sense if my blackout issues are related to stress about relationships since historically most of my stress/anxiety has revolved around close relationships. I know this is what I need to find a reliable mental health professional for since I can't arrive at any definite answers without that.

Una+ wrote:Okay, so they communicate content that you did not authorize and you would not have communicated if you had been there. Is that so bad? They may know things you do not. And they have their own points of view.


Whatever's happening in my case, the sense that I was not in control of myself is very frightening. Especially so in some cases where I've blacked out and emotionally hurt or offended people I care about, since that is not something I want to do.
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Re: Seeking Help with Blackouts

Postby Floralie » Sat Aug 24, 2019 9:25 pm

Sticky wrote:I see it is a very real thing people deal with and it's just a coping mechanism, but I still don't exactly understand it and I still feel the kneejerk reaction that it couldn't possibly apply to me. I don't hear voices or anything, and I don't really grasp concepts like "internal communication" or what that would look like. I'm sure it would be very difficult to describe though.


The definition of DID is that it's a dissociative disorder caused by childhood trauma, involving the existence of two or more distinct personality states separated by amnesia (memory loss) with their own enduring pattern of perceiving, relating to and thinking about the environment and self.

Based on what you and your partner have told, this do apply to you very well. Hearing voices and other symptoms you read about can be there, but they don't need to in order for it to be DID. Also hearing voices is usually a symptom misunderstood. In DID it usually sounds exactly the same, like hearing your own thoughts does. For example, now that you're reading this, you "hear" the words you read inside your mind, with your own voice. You don't ACTUALLY hear anything, because your ears are not involved and you know it, but it's still called hearing, because if it's not hearing, how come it have your voice? That is what all people have, except the ones that have been born deaf. So, everyone hears voices inside their minds, usually it's just not called hearing voices, because people can tell the difference between what's in their heads and what has something to do with ears, and only things that come thru ears are called voices, except in DID they can be called voices even when we know they are just in our head. Voices in DID don't have anything to do with our ears, and usually we do know it. The difference between hearing voices (thoughts) like all people do, and how people with DID do, is the content and/or the "placement" of them. In DID voices may have different voice than yours. Or they are like your thoughts, but you don't agree with them. Or you hear comments about things you do at the moment, but it doesn't have anything to do with what you were thinking of/feeling about it. You can have fights with the "wrong opinions" inside your mind or about whether to do something or not. That all is inner communication, or one example of how it can be like. People who have those inner conversations with what they think is themself, have been like that since their childhood, and don't know it's not what all people have. You may have it too, but just didn't know, until now, that's called hearing voices and inner communication between alters. Or you DON'T have it. Not all people with DID do.

My experience about symptoms is, that most of them were what I though was normal or just trait of my personality, before I learned they all are called symptoms. If DID is what you have, you have had it since at least from 9 years old. Your normal may not be the actual normal. We just don't know what happens inside other people's minds, so we can not compare. You don't recognize DID language yet, but when you learn what all means, it can explain a lot about things you didn't pay attention to, because they were your normal.

In DID system, all alters, including you, usually have their own jobs to do. You are an alter whose job is to be the host, the main front. Host is the one who takes care of outside life mostly, they are the one whose job is to carry on with life like nothing happened, although severe trauma happened in reality. It's part of host's job to be unaware of trauma, or if you are aware of it, you are not the one who holds emotions connected to it. Hosts are many times also unaware of having DID, although other alters in the system may work together as a team already. That is not always the case, but it's possible. Biggest symptom hosts deal with is denial, about trauma or the severity of it, and about DID. They have million reasons why it's not DID. Then they can realize it is actually, and then again, they deny it and think they just made it all up. That's never ending cycle, and part of what's normal for people with DID.

So the feeling it has nothing to do with you is more than normal, because that is kind of what you were created to be, unaware. Also DID is a big diagnose. It feels life changing, like nothing is what you thought it was, and it takes time to accept it. But there's nothing to be scared of, because you have had it since childhood, and you're doing just fine.

There is other kind of inner communication as well. Like feeling emotions that don't feel yours. They happen in your mind and in that sense they do feel yours, but yet not. Because you can be on one mood, and the feeling you have with it, doesn't fit to your mood at all.

Hearing voices or feeling emotions leaking to you are not bad things. If you don't have them, it doesn't mean you don't have DID, it just means you have more work to do to create inner communication, when other people may have had it naturally since forever, and all they need to learn is how to use it properly.

Sticky wrote:Whatever's happening in my case, the sense that I was not in control of myself is very frightening. Especially so in some cases where I've blacked out and emotionally hurt or offended people I care about, since that is not something I want to do.


At first it is scary, but it's something to get used to. All alters serve a purpose. You're the public face for the system, the one who takes care of outside work etc. That is what you are good at. Because of the nature of your job in the system, and the fact it can make you unaware of lot of things, like about trauma and dangers around you, there are other alters who are good at things you're totally clueless about. You do need them, just like they need you to go to work for them. Protectors/defenders are usually not the most nice and easy people to be around, but they have abilities you lack. They can keep you safe, because they don't care about are they liked or not, but are you safe.

They all are also their own persons, with their own gender, age and sexual orientation, opinions and views. The partner of your choice may not be anywhere close to what they want. They are not in relationship with Allison just because you are, they decide their boundaries, because otherwise it would be abusive to them. They may not like people around you, including your friends etc. They may not have anything in common with them.

Your life is not just yours with DID, it belongs to all of you. You share it. How much outside life others want and need is different for every system, but it's not something you get to choose. They don't either, non of you are the way you are because you chose to. It requires plenty of work to make everyone happy in the life you share. It is not how you are used to thinking your life now, but it's not scary after you know who they are, how they think and what they want and why. You all exist for one reason only, to survive. Without them, you wouldn't have survived, so you owe them big time. Bad choice of words is not a big price for that.

They may feel strangers to you now, but in reality all traits they have, are traits of the person you were supposed to be, when trauma stopped you from developing one singular identity and personality. That is why some traits that do belong to whole you, are now in another alter, just like your traits are now in you instead of one of them. They are not random strangers who came to existence out of plain air. You share same brains, there's nothing in them that isn't part of true you. Trauma you went thru just had bigger impact to some of them, so that you didn't need to deal with it like they do.

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Floralie F main front
Sami M 16 (15-26) defender
Lucas M 16 (19) self care
Little Leon M 4
Ferro M 14/24
Rami M 25 inner protector/caretaker manager
Anastasia F 26 inner caretaker, female sexuality
Jules M 11 main trauma holder with DID
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Re: Seeking Help with Blackouts

Postby Amythyst » Sat Aug 24, 2019 9:47 pm

Hi Sticky,

Like Floralie wrote, for us 'hearing voices' is not like hearing outside voices. It's mostly like, thought-words that come across. Like when you're thinking to yourself, only there's other thoughts that come in. You might even think they're yours except they sometimes disagree with you and stuff.

Like, our previous host (who was like totally in complete denial) once wrote on her blog saying she did not hear voices, but then she went on to describe basically an argument she had in her head. She didn't know she had alters and stuff. She just knew there were these thoughts and she didn't agree with them and couldn't control them. But cos it wasn't like actual voices in her ears or whatever, just thoughts, she said she didn't hear voices.

Other kinds of communication are more like, urges or whatever? Like say you're at the store and there's a wierd urge to buy something you don't normally want or whatever. Or maybe you're flipping channels on the tv and see something you don't like or normally wouldn't watch but feel a strange desire to stop and watch it. This sort of thing could be like, influence or whatever bleeding through from other parts.

Like for us, we'd get urges to buy toys, or watch little kids shows, and previous host would either ignore it, or she'd give in but then feel like guilty or embarassed or whatever. But it wasn't really her of course, it was our littles.

Ooh another important thing, is every system is different, every brain is different. So like, what works for us or how things work for us, can be different for you, different for everyone. So don't get too hung up on stuff trying to compare things. Like there's some parallels and some stuff's similar, but if you don't relate to something don't let it get to you too much. Speaking frrom experience lol, we're still learning this one ourselves. ;)

So yeah, like Floralie said there's lotsa terms and lingo and stuff, and it sounds really complicated and confusing and stuff at first. But you get the hang of it eventually and you start figuring this stuff out.

And maybe lotsa life stuff suddenly starts making sense, and maybe you start giving in to more of the little urges and stuff cos it makes them happy and that makes everyone feel better. :)

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