Temporal Lobe Epilepsy (kinda long)

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cerealkiller
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 9/20/2006 10:06 AM (GMT -7)   
I am in the process of being tested for TLE.  My sleep deprived EEG came back with abnormal results which were, as neuro put it, "non-specific."  She has now ordered an ambulatory 72 hour EEG which I will have done in October.  My symptoms are quite varied.  I am hoping to hear from someone who already carries this firm Dx and if so, what was it like to be you before meds?   do meds help?  do you have any memory loss? do any of my symptoms sound similar? 
 
 In younger childhood, around kindergarten my symptoms were more limited to sleep disturbances: "night terrors" as the pediatrician called them, talking in my sleep, sleep walking, and grinding my teeth while I was sleeping. As I got older and into my pre-teen years the symptoms seem to expand to include other sensory symptoms (or maybe as a young child I couldn’t adequately describe them).

Psychic-As an adult, the bulk of my "spells", for lack of better word, will just feel like I have entered some kind of mystical state.  I don't lose my sense of who I am etc... but it feels like as if I having some kind of re-connection to and strange familiar past time/space. Like I am re-experiencing an old familiar memory of some kind; and yet this kind of spell can occur in a place I have never been before. This feels different from classic deja-vu.    It is actually a pleasant experience because when it happens I want to just stay in that moment forever.  Although I have episodes of classaic déjà vu (where everything I say or do seems like I have said it exactly the same way before) but this feels very different. It feels like I am seeing the universe much more clearly for the first time, as if I am approaching some kind of enlightened state where I will soon "know" everything, figure everything out; figure out the mystery of life itself, It feels like a powerfully joyful feeling, like I don’t want it to ever end. There is a time/space quality as if I am experiencing the world and somehow gone back in time to a period "before time" as in a priori, primordial, or primeval state.   It has a very spiritual feeling, like I am connecting with something much bigger than myself.   It feels like I’ve reached such a spiritual epiphany. The sensation is a pleasant one that lasts between 1 and 4 minutes or so in length.

Olefactory- sometimes I will smell something that no one else around me does. Usually it has been an ammonia-type smell, chlorine bleach, gasoline, dead mouse, and dirty smelly feet.  It only lasts under a minute and then it is gone.

Auditory-Although I have never processed any unusual sounds or noises, my hearing has always been super-sensitive. Loud noises or high-pitched noises actually hurt my ears.  I have tinitis (ringing in the ears) pretty frequently.

Gustatory: there is no specific taste that comes over me, it just appears as a yucky, foul/bad taste in my mouth, even though I have already brushed my teeth for the day etc.. it happens as briefly as the smells I listed above, and doesn’t coincide with ingesting/eating anything. Sometimes foods will not taste right to me, they will taste off. I put the food aside and when I later return to it, it will taste perfectly fine.

Visual- I sometimes I feel as if I am standing from the vantage point of being twelve feel tall, almost as if my body has elongated somehow, it lasts under a minute just as the above symptoms do. Much less frequently I have felt when looking at my hands or feet; parts of my body that may be in my view, appear smaller. Again it is very short in duration like the other symptoms, a few seconds or so. I have had a lot of both flashes and floaters since young adulthood.  Sometimes I see things just as I am waking up but when I am fully awake they are gone.  I also have vivid and detailed dreams and nightmares which I can always recall after I wake up.

Tactile-in localized portion of my skin like my thigh, sometimes my skin feels like there are crawly type feelings under it, almost as if something is moving underneath. At other times a localized part of my skin (like a part of my arm or leg) feels hyper sensitive, even a soft sheet can feel scratchy in that one area of my skin. Touch in general is hypersensitive, if I don’t know someone is about to touch me, say they come from behind me, I get pretty startled..

GI-I have had periods of rapid onset of nausea throughout my day for many years, that has nothing to do with eating. I have not vomited just felt very nauseated. This lasts a few minutes and then goes away. I used to think that maybe my blood sugar was low, and that eating a snack would make it disappear, but eating something has never alleviated the nausea; it just goes away on it’s own.  I also get this funny feeling in my stomach that feels like yeast bubbling.

Perceptual (Alteration of Time) this is a weird feeling and hard to describe but it feels as if someone has just hit the fast forward button or pause button on time. Time, as its unfolding feels either like it’s going slightly faster than it should, or like it’s just a tad too slow, almost like everything around me is going on at a sligthly slower pace. The best way to describe it is when you are dealing with a VCR, you can adjust the tracking on the film and there are gradations where you can slow the film down just a bit. These sensations like the others are either momentary up to only a few minutes long.

(Feeling of Detachment from my body- almost Outer Body Experience)  I have had a few episodes througout my life, like I was floating a bit away from myself maybe only a foot or two. Almost hovering next to my body. The internist as a teen, told me it was depersonalization and asked me if I was under alot of stress.  The sensation is like watching yourself performing functions almost as if you are not connected to yourself somehow. Often as a young child I would feel confused and approach my father, mother or teacher and tell them, "I’m not sure if I am awake or asleep." This happened frequently but I have learned how to tolerate these sensations. Now as an adult it has seem to either decrease, or I just got better at ignoring it; I’m not sure which.

(Angry + vioent thoughts/ feelings) Sometimes I will feel absolutely rageful and I am not certain why. It has nothing to do with circumstances going on and is void of any emotional type thoughts preceding the episode.  Lasts typically a few minutes and I am always cognizant at the time that I shouldn’t be feeling so angry and am puzzled, as to why I am.  

All replies would be appreciated!!

 

Post edited due to rule #1

Post Edited By Moderator (HALO) : 9/29/2006 11:27:19 PM (GMT-6)


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/27/2006 2:20 PM (GMT -7)   
Let us know how the 72 hour ambulatory goes. It sounds as though you have a very complex list of symptoms. It will be interesting to here what your neuro has to say. We will be waiting to hear back from you. Good luck!
Shaun
No one left behind!
1*
RLTW


cerealkiller
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 9/27/2006 4:52 PM (GMT -7)   
thanks for your reply. The 72 hr. EEG is scheduled for October 13th, I will be happy to share my results. If this test result is negative, I'll have to entertain the fact that I am either floridly psychotic or an unwitting prophet-LOL

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 9/30/2006 7:04 PM (GMT -7)   
How did you hear about HW?  I just realized I hadn't welcomed you.  I'm glad you found us. There are a bunch of very supportive and helpful people here.  Let me know how things go for you in the forum.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


cerealkiller
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 10/1/2006 7:01 AM (GMT -7)   
Thank you for your reply, it is the only one I have received. I found HW while googling TLE, hoping for some personal stories of folks who have it. So far, people with TLE don't seem to post much about their life before and after the Dx. I would so much like to meet a person with a firm Dx. to compare notes with while I wait through testing. I guess it is only natural to want to rule in/out this Dx for myself, while waiting for results etc...To answer your last question about my experience of the forum. Thusfar, with you being the exception, it hasn't been helpful. Perhaps my post was too verbose.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 10/1/2006 10:23 PM (GMT -7)   

cerealkiller,

I have experienced EVERYTHING that you have desribed over my 27 years of diagnosed epilepsy. These are all side effects from the long term use of meds.

I have posted my experiences on this forum over the past two years. If you get a chance, please read my past posts and compare notes: Career Change, De-ja-vu, auras. strange smells, dilantin side effects, effects of hot weather, long term use of meds, paranoia, DRIVING WITH EP (my favorite), memory loss, short term memory, Epilepsy and Ulcerative Colitis, EP and Bipolar syndrome-is there a connection?, eye sight, Outerbody experiences, and there are probably several others that I can't remember as well as some of my replies to other posts.

Randy


cerealkiller
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 10/2/2006 1:15 PM (GMT -7)   
thanks RanMan! I will definitely check out your old posts. all of 'em. I have read many many OP posts already. I find that eading other posts has been helpful.
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