dissociative fugue- please tell me Im not alone

[StormFront]

I've read about dissociative episodes- most of mine are a little more unusual; I completely black out. I have no recall of what I'm doing, where I am, who anyone else is. I don't recognize my own husband. I'm completely focused on getting somewhere safer than where I am. I've come out of this hundreds of miles from home if I have access to a car (yeah, I drive like this. scary thought) and miles away on foot. once did five miles on a road in just socks tore my feet to hell.
I'm mostly non verbal, or talking about needing to get away or saying its not safe here. if Im lucky I just hole up in a dark quiet spot and hide. if theres too much noise, activity, things that continue to push the startle button, I keep going until it wears me out too much or just sort of expires. I dont answer questions and I can NOT be touched. ..this resulted recently in a few really negative events that have caused more trauma. in June, being forced into an ambulance and getting transported to a hospital bc some bystanders decided they had to intervene, physically grabbed me and tried to drag me to stop and worsened the episode so badly I nearly ran into traffic trying to stop what I must have perceived as an attack. my husband tries to redirect/ground and calm me, but if it fails he just follows me, staying far enough to side or behind that I dont get spooked seeing him in peripheral vision, an stays with me to make sure Im safe. I hate myself for putting him through this. he was with me on the above incident,tried to tell them to just stay back but they refused to listen and called police and rescue. its a small town so of course people talk and that event and ore recent ones have made me feel now I cant even leave the house...but I dont feel safe here so BAM, I have another blackout. its a vicious circle.

just recently able to find a trauma focused therapist, one appt so far, see her again Tuesday. there's zero mh services around here, the wait list for public access (no insurance) is literally MONTHS and my experience with them to date has been horrendous. so I have to rely on my PCP who's a good guy but would prefer I find a psychiatrist for some of the worse aspects of this issue....he's been trying to help me locate one and coming up empty too. I had a rx for clonazapam, small dose, only to be taken as needed to head off a panic attack or hypervigilant state that progresses to these, and for the most part it was working but dr discontinued and wont tell me why. wasn't abuse, Id go through maybe fifteen every two and a half, three months. didnt even take daily.

couple weeks ago after someone called police and claimed they saw a facebook post saying I was suicidal (I hadnt been on fb in months on advice of attorney, case against stalker- he's probably the one who made the call) I was dragged from my house, thrown in an ambulance, taken to ER where their dr, an Rn and the 'community mental health' person decided I needed hospitalization bc "shes completely delusional" (basis for this was "We dont think you have ptsd, you dont have a stalker and no one is trying to hurt you you made it all up" and the fact I own firearms. they alleged I overdosed when every lab test they gave me said NO I didnt, and refused to call my PCP (a dr in their own network) to confirm what I said was true)...since then more and worse blackouts.

PCP said he wanted to start me on an atypical antipsychotic- which scared me bc Id just been accused of being delusional and locked up for three days bc "you can't accept the reality of your serious illness and we need to get those untrue thoughts out of your head" and they wanted to keep me longer til they actually *talked to him!* and found out Yeah, she does have reasons to be spooked! oops, sorry you can go home now.... he thought it might help reduce the hypervigilance and startle response enough to slow or stop the blackouts. he made sure to put in notes 'shes not psychotic- this is off label for ptsd" but it still frightens me. took for just over two weeks and had three blackouts , massive immediate weight gain, and half a dozen or so really unpleasant side effects so stopped taking it as of yesterday.

there doesnt seem to be much in the way of help for these episodes except CBT/talk therapy, but since my situation is ongoing, continued trauma from stalker and retraumatization by ppl who are supposed to be there to help but just plain refuse to believe whats going on, Im not sure they'll ever stop and it scares me. I'm open to ideas, just please not "go to inpatient until they stop". they've been going on over three years now in various severity, Im not going to go live for years in a hospital.

 

[Jade-]

Wow,that sounds pretty scary and I'm sorry you go through those episodes.

You said you completely black out during them but you have many details of what you are experiencing when they happen.Are you aware of what's going on and just unable to stop/control yourself?

 

[StormFront]

unaware of anything at all. what I know I know from my husband relaying what happened if he was there.

theres plenty of ones I dont know anything except where I 'woke up', or a vague idea of how long Ive been out based on last thing I recall and when I regain orientation. had one a week ago, took a four plus mile walk after midnight to the beach. crossed a highway to get there. came around sitting on the sand behind a dune fence. my husband was sleeping and didnt know I was gone. didnt have a phone, purse, anything. crappy shoes on so it wasnt a comfortable walk home but that was my only option.two years ago on a vacation I left the hotel room, security found me sitting on the floor shaking and rocking in a service access doorway near the meeting rooms- stayed nearby until it stopped, kept people away. called my husband for me to get me back to him. said his kid has bad panic attacks so he thought thats what might be happening

these do scare me, mostly bc Im worried I could inadvertently hurt someone, either by driving badly or getting aggressive if touched. husband says I'm not trying to hurt myself or anyone else, that I avoid noises and movement, like if walking along a road I pull away from passing cars or change direction if theres too much activity in front of me.

we go over these and try to figure out what we can do to understand them better and hopefully avoid them. having hours of lost time is frightening.

 

[Sideways]

Going with the idea that this is dissociative episodes (because I’m not a mental health expert, and it could be something else entirely):
It isn’t necessarily dissociative fugue. It could be dissociated parts (like DID) or other forms of dissociation. This part here:

I'm mostly non verbal, or talking about needing to get away or saying its not safe here.

Suggests it could be a traumatised part of you.

Are you able to recognise anything that might be specific triggers for these episodes? Or things that start to change for you before you black out completely? Dreams can be a difficult one if you’re getting triggered while asleep.

Definitely talk to your trauma T about this, and perhaps prioritise a workable safety plan for you and your partner to (a) minimise the number of episodes; and (b) nail down the most effective grounding strategies to use if they do recur.

Practice your grounding techniques as often as possible while you get this figured out, because like any skill, you want to be pro at it before you whip it out in an emergency.

Be gentle with yourself in the meantime. Do plenty of the stuff that helps you bring your overall stress levels down.

Fwiw? I’m about to go back on my atypical antipsychotic, and one of the reasons is it helps me stop my dissociative episodes. There’s lots of different ones to try, and slow release versions can help reduce the side effects.

While you sort out what’s going on with your T, perhaps you could have a safe place that your partner keeps the car keys, especially at night. There’s always the potential that you’re dissociating and have other health issues going on (sleep disorders come to mind).

 

[Cypress]

I am not sure what a dissociative fugue is but I have had episodes in my life where I became frightened, dissociated into a part and took off for a couple of hours. This even happened a few times when my children were small and I took them with me. Very scary stuff! It doesn't happen anymore mostly because I have learned to listen inside and now know when I am starting to get triggered and can usually ground or get to a safe place before I completely lose it.

FWIW Your dr probably stopped the clonazapam because benzos (and alcohol) increase dissociation.

I agree with everything @Sideways said - safety first. You say you are worried that you will hurt someone. I am more worried someone will hurt you when you are dissociated into such a vulnerable state.

 

[Dire Parsnip]

Walking and travelling can be very soothing. Maybe you could try walking somewhere safe on purpose (with comfy shoes) preemptively?
I know I used to walk. I didn't black out like you or go nearly as far but I would be aware but zoned out and just walk and it helped. It was good.

 

[blackemerald1]

I'm really sorry you are experiencing this.

You mention side effects and that you stopped the medication. I've been on atypical antipsychotic meds for extreme distress & ptsd symptoms etc so it's reasonably common for psydoc's to prescribe this for various reasons. Even antiepileptic meds are used.

There's definitely no shame or room for anyone to make presumptions about what your illness may be by the use of these or any medications.

Given the nature and severity of these episodes and the likelihood there is the potential for you to do massive harm to any number of people, particularly whilst driving but also whilst you are a pedestrian too... I'd go back to your psydoc and start trialing other meds as @Sideways suggested. There are alternatives.

Please try and remember that it may take you a while to tolerate a medication. Tolerating something and experiencing serious side-effects always have to be balanced with whatever it is the medications are being used to assist with.

Maybe you could stay on them until you can get appropriate treatment and strategies in place to prevent these fuges from happening whatever the cause.

 

[StormFront]

thank you all for the input.

I did decide to stay on the quetiapine until an appt which is set for this wednesday. missing just a few doses had me feeling like my head was exploding. so waiting it out til we decode o stop adjust or continue. stil dont feel like its helping tho most of the side effects have improved.

i still feel really wrong taking an antipsychotic. theres a thread about narcan/naltrexone treatment for dissociation and that may be an option.

 

[Sideways]

missing just a few doses had me feeling like my head was exploding.

Yeah, it’ll do that pretty reliably. Not one that you can go cold turkey. But you can be weened off usually quite quickly, because the doses for things like ptsd and dissociation are a whole lot lower than they are for psychosis:)

 

[Deanna]

thank you all for the input.

I did decide to stay on the quetiapine until an appt which is set for this wednesday. missing just a few doses had me feeling like my head was exploding. so waiting it out til we decode o stop adjust or continue. stil dont feel like its helping tho most of the side effects have improved.

i still feel really wrong taking an antipsychotic. theres a thread about narcan/naltrexone treatment for dissociation and that may be an option.

I don't know about Narcan, but it takes awhile (3-4 weeks) to get into your system. Think you might be pulling the plug, a little too early? About the psychotic you were prescribed?

I take a psychotic and it really helps me. I don't think there is anything to worry about.

 

[Friday]

i still feel really wrong taking an antipsychotic

Does it help to know that what a psych med is named/labeled is more about politics than function?

IE if a drug company spends 3billion in R&D developing a new drug that tests as an amaaaaaazing antidepressant, a middling antianxiety, and a so-so antipsychotic... but they’ve already got the patent on a best selling antidepressant and have good market share on a handful of antianxiety meds... they won’t label it as either what it’s amazing or decent at doing, but where they can make the most money off of it?

Why not get it labeled for multiple uses? Because that’s another billion or so in FDA approval hoops to jump through, and unless it’s Viagra (which was originally labeled as a heart med) it’s just not worth it for them. Because doctors talk to each other, (and understand drug company politics) and start prescribing “off label” almost immediately.

There’s a non-stimulant ADHD med that’s being rx’d off-label to anorexics like crazy in my neck of the woods (because it stops hyperawareness of one’s body in both people with and without ADHD) that I strongly suspect either already is -or soon shall be- rx’d to people with hypervigilance (PTSD, GAD, etc.). It’s the same function, toning down the extreme awareness of _________. It’s an extremely useful tool for several disorders. But it’s labeled as an ADHD drug. Doesn’t mean everyone who takes it has ADHD. Just like an antipsychotic doesn’t mean you’re psychotic.

With psych meds? Ignore what it’s “for” and pay attention to what it does.

 

[StormFront]

I stayed on it. this week makes 6 weeks. and its still not helping.
really bad anxiety today, ended up jumping off couch over something that spooked me earlier (my daughter went to shed for halloween decorations, ran back inside screaming and trying to shut the door, I thought someone was after her. she was reacting to a spider on the porch) and think I pulled some of the internal stitches from surgery two weeks ago jumping up to try to help her.
in serious pain right now and think its the only thing keeping me from bolting. no 'rescue meds' around either bc dr dx the clonazapam for those so I made a drink. yeah I know I shouldnt be drinking taking the other stuff daily but its what I have available trying to take the edge off. still jumping out of my skin.