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Discussion Starter · #1 ·
Hello all

One of the things about DP/DR that has worried me for years, is what do I say if I become so overwhelmed by DP that I can no longer function in public. I am not thinking so much about acting out in a wierd or crazy manner but more like I just freeze up as i am frightened to walk because I feel so unreal, confused, and disoriented.

A few weeks ago shortly after I had begun extending the time between my Xanax doasges I found myself stuck in heavy traffic at a particularly bad intersection. There is an incredibly long wait till the light turns green. I was stuck as the first car in the left turn lane. I was surrounded by cars in all directions and i started having the feeling of fusing with them and loosing my bodily boundaries. I began having perceptual distortions and felt mounting panic. I seriously felt that I might have to abandon the car and make a run for it. On either side were large shopping malls. So in a certain sense I had nowhere to run.

Sometimes waiting in line surrounded by people in a department store I have felt that if my DP got any worse I would pass out or collapse onto the floor. My DP/DR can get that bad. Fortunately such extremes are rare, in fact haven't ever really happened at all but the fear of getting so "out of it" is disabling and terrifying in its own right.

If things actually got that bad and I did collapse or become unable to talk coherently because i was in such a panic state what could I possibly say to make anyone understand my behavior?

I could tell the truth and say I was having a panic attack brought on by "depersonalization" and "derealization" yet I fear that many people might make a "moral" judgement and assume I was simply suffering from anxiety and that I could control my mental state if i really wanted too. I feel they would tend to minimize my disorientation, fear and confusion. And make critical insensitive evaluations of me as a person.

So I think I have come up with an answer to this dilemma. I will simply say that I have temporal lobe epilepsy and am having an attack. I have no real reason to think I actually have "TLE" but then again some of the symptoms are indeed very similar to what I experience.

Here are some of the symptoms I found online.

o Patients may report distortions of shape, size, and distance of objects.

o Things may appear shrunken (micropsia) or larger (macropsia) than usual.

o Tilting of structures has been reported. Vertigo has been described with seizures in the posterior superior temporal gyrus.

* Psychic phenomena

o Patients may have a feeling of d?j? vu or jamais vu, a sense of familiarity or unfamiliarity, respectively.

o Patients may experience depersonalization (ie, feeling of detachment from oneself) or derealization (ie, surroundings appear unreal).

o Fear or anxiety usually is associated with seizures arising from the amygdala.

o Patients may describe a sense of dissociation or autoscopy, in which they report seeing their own body from outside.

In general I have found that many people are more sympathetic to, and understanding of, physical disorders than psychological ones and physical disorders are seldom drawn in to the "moral domain" like psychological ones often are.

Anyway if I ever do get to the point where I find myself completely "frozen" and unable to function in a public setting, Temporal lobe epilepsy will be my explanation. Having some simple explanation to give makes the fear and worry of a treaded "public crack up" less compelling, at least for me.


Discussion Starter · #2 ·
I was reader today in church (no comments please). Palm Sunday.........probably 350 people in the place. Aside from the feeling of complete and utter hyprocrisy I have when reading from scripture, every time I do this I'm convinced I will "lose it" in front of the group.
Which is probably the main reason I do it. For the challenge.

Anyway, and as usual, I watched myself doing what I was doing. All sorts of cermony involved of course, very important to know when to do what. And as I was actualy speaking (and as usual), part of me was convinced I wouldn't be able to do it. That I would screw up somehow, get stuck on the word "Phillipians" or something like that. And I would suddenly run screaming down the main aisle and out of the building. Hundreds of people, including my family, would see me break down..............

The reason I bring this up is the excuse you mention. I use it anyway to explain my sometimes odd behaviour at if I suddenly need to leave or something when the DP gets to me a little too much.
I just tell people I have a seizure disorder, brought on by the head injury in the car accident that actually precipitated the DP. And - I may not even be too far off. My main doc still thinks seizures are involved for me somehow.
And it is an excuse that people are much more able to, if not sympathize with - at least not be afraid of.

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sc really liked your response! I still feel sometimes that we're stuck in the aura of a TLE episode!

I wish I could find an article that Andy had on the old forum from "Fits, Faints, and Funny Turns" -- it had a great article about a woman who was misdiagnosed with a number of psychiatric disorders who actually had a rather complicated seizure disorder that mimicked what some had misdiagnosed as hysteria, schizophrenia, etc.

Anyway, there is a problem w/neurologists and ER doctors and family practitioners sometimes. Someone who is suspected of having a psychiatric disorder can have TLE (complex partial seizures/temporal lobe epilepsy) and some individuals thought to be having a seizure disorder can have any number of psychiatric conditions. So they are more and more aware that there is a crossover, and they certainly won't judge you.

If you plug "fits faints and funny turns" into Google you'll see the dilemma. There's a lot of crossover between psychiatric symptoms and seizure like symptoms which doesn't surprise me at all.

If this ever happened, I would say, "Call the paramedics, I had a seizure", or if you literally can't speak much.... which used to happen to me....... just say "Help me", anything.

In the past, I have had MUCH more fear than this, but in my upcoming move, increased interaction with people this little fear is growing in the back of my mind. But I am SO much better in terms of dealing with this than I was in my 20s and 30s!!!!

There is always stigma around, and there shouldn't be, as I consider what we have a legitimate medical condition. I wear a Medic Alert bracelet that has my meds listed on it and literally says, "has DP/DR fears certain anesthesia, etc." I recommend anyone on meds, or with a psychiatric illness have a MedicAlert ID on. Or diabetes or any illness where you can't speak for yourself. The paramedics and police DO look for these bracelets and necklaces and cards.

The thing is, I have been in at least one situation where I was living in a garage apartment behind my landlady's house. She knew I was sort of a mess, but didn't understand or really care. I helped take care of her daughter, was a trusted "member of the family" in a way .... too long a story, but I kept my psychiatric problems to myself.

Well one day, I had an episode of DP/DR SO bad -- woke up from too much sleeping -- that I felt I should go to a hospital, and what would they do for me? I didn't think it would help at all, this was it, time for complete Nursing Care -- too late to even take my own life! I could barely call my psychiatrist -- couldn't "see/feel" the phone. When I did he said to come in, but I could NOT drive my car -- wasn't even going to try to get near it, couldn't find the keys, etc. My landlady was home at the time... this was early in the a.m.

I managed to call her and beg her to drive me to my psychiatrist's office. I couldn't get dressed properly, couldn't shower as I could NOT feel myself at all, my hair was greasy, I looked like "death warmend over".

Well, she had no judgement at all. I think the fear of judgement -- we have to toss that, or do what you say "I have TLE" or exactly was sc does.

Use whatever explanation you feel is necessary. It's amazing how people can be very helpful. If you faint or don't faint, or say you fainted, someone will call 9-1-1, probably too many people will call. Someone would assume you HAD anything from a seizure to a heart attack. Say you're having a heart attack, it doesn't matter at all. Yes, say you have epilepsy! Then try to tell the paramedics what's happening. They don't care.

I agree it is the fear of the fear of the fear of having such a bad episode tha makes this even worse. And I have had such epsiodes. Left full grocery carts in grocery stores and rushed out, gotten up and said I'm going to vomit (at work), ANYTHING. "I have a terrible migraine" is good.

Over the years, I have found I don't give a shit what people think, LOL, because I believe this is an illness, and to Hell with anyone who doesn't understand. In an ER -- someone will at least take care of you and get you some help. If you're in that bad shape, someone will call 9-1-1.

I really like sc's story.

We are human beings with a legitimate, disabling problem. I am out of the closet and don't care! Seriously.

Hang in there.
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