Loss of orientation

[dpmom]

Hi,

Since I suffer from depersonalization and derealization, I am very often disoriented, I can enter a place and don't remember how to go back to the original place. I oftenn feel confused, and wonder which meds can help for disorientation. I really am a mess. I take Paxil, Klono and Zopiclone (sleep pill), but before meds, I was confused like that. It can become very scary. It's really like my mind comes to OFF and there is a lack of sense of familiarity, memory.

a psy suspect TLE, but I didn't try a real anticonvulsant. I want to try Lamictal (again; I tried it for 2 weeks and throwed up at 25 mg....) Do you think loss  of time and orientation is linked with temporal lobes?

Please help,

DPmom

[StrungOutOnLife]

It's not listed on the eight principle symptoms of temporal lobe damage. The time thing, that is. Memory isn't always so good, though.

Now that I know what you're actually talking about, I guess it is. The link still works, by the way.

[gretl]

It's really like my mind comes to OFF and there is a lack of sense of familiarity, memory.  a psy suspect TLE, but I didn't try a real anticonvulsant.

I'm assuming he/she didn't refer you to a neurologist at the time?  From what you've said, and from what I read in your online diary, it actually sounds a *lot* like TLE.  What happened to you in the store sounds like a phenomenon called jamais vu, where the familiar suddenly becomes unfamiliar.  I'm reading a book about TLE by Eve LaPlante right now, called "Seized"  and she describes something very similar happening to one of her interviewees. (Is that a word?!) 

Here's a brief article that mentions jamais vu at the end Complex partial seizures.

And this one talks specifically about the difficulties sorting out epilepsy and certain psychiatric disorders, and includes this line "Thus, the diagnosis of temporal lobe epilepsy must be given serious consideration when the patient presents with dissociative disorder." Epilepsy and Neurobehavioral Disorders

(Keep in mind that I know very little about depersonalization/derealization disorders.  But my daughter has TLE and I'm a compulsive reader, LOL!  Maybe something here will help.)

StrungOutOnLife:  the loss of time thing could definitely be seizure-related, don't you think?  There are lots of reports of complex partial seizures where a person doesn't recall the period when they were "out". I fondly recall a line in an old BrainTalk post; something like "Body in Bemiji, brain in the Bahamas".

[dpmom]

It's really like my mind comes to OFF and there is a lack of sense of familiarity, memory.

[StrungOutOnLife]

StrungOutOnLife:  the loss of time thing could definitely be seizure-related, don't you think?  There are lots of reports of complex partial seizures where a person doesn't recall the period when they were "out". I fondly recall a line in an old BrainTalk post; something like "Body in Bemiji, brain in the Bahamas".

<{POST_SNAPBACK}>

Rereading it and the first post now, yes. When I posted that, I almost forgot to say which thing it was that wasn't listed, which would've sounded like I was saying that temporal lobe damage doesn't affect memory.

When I read her post the first time, I thought she was talking about the ability to judge how much time has passed. I wasn't thinking of the kind of person who thinks they've been in the shower for only fifteen minutes till the hot water tank runs out without blacking out. I can't remember where I read that example.

Sorry about that.

[dpmom]

Hi again,

shower for only fifteen minutes till the hot water tank runs out without blacking out.

mmmm... I don't have this kind of confusion, it's more like, weird confusion, loss of orientation, and loss of awareness of time, but not at a point where I think one hour has passed and it's been 1 minute!! It's like, I kNOW I don't feel the time going, I am AWARE that something is wrong, and when I feel lost, I can fel lost in my head, only in my head.

Last time, I was in a IKEA, and I went to the bathroom. I told my boyfriend I will come back. it wasn't that far. I just went to the bathroom, and when I go out, I wasn't aware of the way that I took to come to this place. I turned around and around, and I felt so stupid. I began to feel fear AFTER. I sat down and waited a bit, then I retried. I finally found my boyfriend, who laughed at how lost I am, but I really felt lost. I took a sedative to calm me down after, because I KNOW it's not okay to loose reperes like that.

Other times, I just feel like I am not there. I feel disconnected. Not there, just, not me. Like my mind doesn't want to connect. I do talk, shop, etc. But I am simply not there, and I feel no real emotions. I don't have notion of time, really, and the more I want to connect, the more I feel lost. I can't do anything about that feeling. It's really like I live and feel drugged all the time. It's not fun. Not at all.

Thanks for reading me.

Dpmom

[gretl]

And I wonder... if I have TLE, why some places make it harder? Like stores, large places, fluo lights, new places, entrer and going out a place?

Well, with the fluorescent lights, there's the flicker factor - light strobing at just the right frequency can trigger seizures for some, which is one reason animated graphics are discouraged on this site.  And a lot of people with partial seizures have trouble with overly stimulating environments in general, both visual and auditory, like large busy stores.  You should definitely post some of these questions on the Seizure board.

It's really like I live and feel drugged all the time. It's not fun. Not at all.

I can imagine!!  I hope your neurologist pays close attention and can help you get to the bottom of this.  If you can stick it out, try not to go on any AEDs until after you've completed that evaluation, so as not to muddy the waters, so to speak.  Often an EEG will be "clean" when a TLE person isn't actively seizing, and some neurologists will stop their investigation right there.  Which is just plain wrong.  Anyhow, there's a better chance of getting an accurate EEG reading if you don't have any AEDs in your system.  You might even want to think about talking to your pdoc and the neurologist about weaning off the Klonopin temporarily (because it has anti-epileptic properties). 

[Ella]

Often an EEG will be "clean" when a TLE person isn't actively seizing, and some neurologists will stop their investigation right there.  Which is just plain wrong.

Out of curiosity, what should a person do if their EEG is "clean" but they have all the symptoms of TLE?  Press for another EEG?  A different neuro test?  I had my EEG earlier today and just could not fall asleep, though I went in on only a few hours of sleep and no stims in my system and was yawning and drowsy.  The room was sandwiched between two busy hallways and had a bathroom on the one side...too much noise and I'm very sensitive to stimuli.

Last time, I was in a IKEA, and I went to the bathroom. I told my boyfriend I will come back. it wasn't that far. I just went to the bathroom, and when I go out, I wasn't aware of the way that I took to come to this place. I turned around and around, and I felt so stupid.

If I don't have another person to follow, I have to map things out as I go along and then reverse the directions in my head.  I'll walk out of ladies' room at a restaurant and pause, reviewing my mental map: Okay, make a left, now straight, table should be on the right-hand side.  And that's not always a guarantee I won't make a wrong turn because it always looks unfamiliar, even if I've been there a dozen times before.

And, Dpmom, what you've said about feeling "drugged" all the time sums up my daily existence.  It sounds like we're dealing with the same problem. 

[dpmom]

Ella,

we are in the same boat. Which EEG can determine tle????

I see a neurologist tuesday. I hope he will take me seriously. It's been 2 years that I struggle, and I am seriously tired. And physically too.

I want to regain sense of orientation, and my depression to go away. I would like to feel THERE, just there, for a while. It's SO hard.

Dpmom

[gretl]

Out of curiosity, what should a person do if their EEG is "clean" but they have all the symptoms of TLE?  Press for another EEG?  A different neuro test?  I had my EEG earlier today and just could not fall asleep, though I went in on only a few hours of sleep and no stims in my system and was yawning and drowsy.  The room was sandwiched between two busy hallways and had a bathroom on the one side...too much noise and I'm very sensitive to stimuli.

Oh bummer!  How frustrating.  Hopefully you have a neuro who understands the limitations of such a reading, and if it's clean, will order another one.  There *are* more intense types of EEG (which I know nothing about, but have heard Jerod et. al. discussing, nasal leads and other nasties  ) that are sometimes used to really determine TLE.  Or they might admit you to the hospital and run a longer video EEG.  But even if you've been seizing regularly, sometimes the VEEG won't catch anything because you're in a different environment and nothing really triggers it.  Also, some neuros will take your symptom descriptions seriously enough to medicate based on that alone.

[dpmom]

Hi.....

I saw a neurologist today. He was fine. i talked a lot. About dp/dr, memory problems, loss of orientation. He made me some little tests. And He says it's very UNCOMMMON to have TLE and CONSTANT dreamy feelings. Usually it's episodic. Bummer.

Anyways, I stille have tests to do. Another EEG and MRI. The EEG is friday and sleep-deprived. I don't know how I will sleep in a dark hospital. MyGod. If I don't sleep, will they be angry at me? I asked if I can have TLE and the tests be negative. He says that after a couple of negative tests, it's probably that I don't have epilepsy. As for meds, he didn't wanted me to take AED unless I am epileptic. Maybe he will prescribe it, we will talk about this later.....

So my MRI is in 3 months.... (in Canada it's long) and EEG friday July 29!!!

Think of me.... it I don't have TLE, why I do feel dreamy and stoned all the time, disoriented, not myself??? Argh.

Thanks for reading.

Dpmom.

[number_6]

I take Paxil, Klono and Zopiclone (sleep pill),

<{POST_SNAPBACK}>

Oh, and Klonopin - that's a "real" anticonvulsant as well.

[gretl]

Hello!  I was hoping you'd post back after your appointment. 

I don't know how I will sleep in a dark hospital. MyGod. If I don't sleep, will they be angry at me?

They frickin' better not be mad at you!  It's a common problem, especially with people who already deal with sleep issues.  Just do your best.  Stay up all night the night before, bring your favorite blankie and pillow, don't stress about it!!  A lot of good info can be caught during a sleepy-awake-dozy state too. 

I asked if I can have TLE and the tests be negative. He says that after a couple of negative tests, it's probably that I don't have epilepsy.

Well, that sounds as if he's at least open to the idea of doing another one if this one comes out clean.  One thing at a time!

As for meds, he didn't wanted me to take AED unless I am epileptic. Maybe he will prescribe it, we will talk about this later.....

Or your pdoc can prescribe it, and you'll get to see if it helps the dreamy states. 

We'll be thinking of you on Friday!  Sending sleepy vibes... 

---

6, that's really interesting about the Klonopin.  Dpmom, does it help you at all in those situations?

[dpmom]

Hiya

Well, it seems that my neurologist wrote to my psychiatrist saying that it's probably not TLE because I have dreamy feelings ALL the time and usually it's not all the time. He thinks it's more depersonalization/anxiety. But he will do the tests. Damned. I want so much to have a real explanation! Now I feel like they will not take me seriously. All docs except one thibks it's anxiety or depersonalization disorder. But how to explain the constant dreamy state, and disorientation, sudden feeling of waking up, forgetting what I just done (foggy memory), feeling not there, disconnecte, not myself, half there, not me but hell-I don't know who I am anymore?

Argh...

I will stay up all night. If soeone wants to chat

Dpmom

[Spike]

Oh, and Klonopin - that's a "real" anticonvulsant as well.