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DP/DR and temporal lobe epilepsy

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#1 kathrynlove33



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Posted 28 August 2015 - 09:22 PM

I was diagnosed with epilepsy in highschool. I haven't had a seizure in nearly 8 years, but if you look up temporal love epilepsy you will find that DP/DR including jamais vu are very common for people suffering this type of epilepsy. I'm wondering if anyone else here has, or had ever had epileptic type seizures? I'm also curious if it's possible to still be having epileptic symptoms like dp/dr and the feelong of jamais vu while not having seizures, or not having seizures for many yeafs. Also I have been taking an anti-epileptic drug called keppra, one of the side effects of this drug is depersonalization!!! Any information, or stories similar to mine help. Thank you guys so much.

#2 kathrynlove33



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Posted 28 August 2015 - 09:24 PM

I apologize in advanced for the typos.

#3 Abraxas


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Posted 10 January 2017 - 12:08 PM

Hi. Well actually I had a neurologist say that my DP/DR and possible my psychosis were all caused by an underlying temporal lobe epilepsy (EEG showed epileptiform activity).

However, I took valproate for one year and noticed no improvement on symptoms. I also tried Carbamazepine, Phenytoin, and Gabapentin, no luck, so I gave up on the 'hope' that this was something neurological not psychiatric.


However, I am now beginning to investigate this again, I will see this neurologist and ask for a more definitive test.


I dont have DPD anymore by the way, but i struggle with malaise, anxiety, and psychotic-like thought patterns


I do get some free-floating depersonalisation and very mild DR, particularly visually. But nothing compared to when I was diagnosed with DPD

#4 forestx5


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Posted 10 January 2017 - 01:44 PM

No doubt in my mind that dp/dr is pathology in the temporal lobe. My EEGs show "significant pathology" in my temporal lobe.  The 1st time I smoked cannabis I experienced an abdominal aura followed by 3 minutes of seizures at 5 second intervals.  That's about 36 seizures if my math is correct.  The cannabis triggered the seizures, then probably mediated them somehow so that I was mostly conscious so I could experience them fully.

It was horrific.  Half of my head was cold and numb, as if a line had been drawn down the center.  I had a tingling mass that moved to the rear of my head and began tensing like a clock spring being wound.  Every 5 seconds it became so tight it exploded in an electrical shock that convulsed my mind and my vision tunneled so that things became very small and far away.  I went into post ictal psychosis and did not sleep for 2 weeks.  I had dp/dr and was agoraphobic.  I began to experience frequent ocular migraines and frequent panic attacks (or temporal lobe seizures, not sure which).   Lots of floaters appeared in my vision.  I had fierce anxiety.  I read a medical journal that explained my experience was a worst case scenario.  My post ictal psychosis segued into an affective disorder of major depression.  I survived 4 episodes in my lifetime. Severe insomnia and anxiety. (I once went 52 days without real sleep}. Each episode was an epic struggle for survival which could take 2 years to complete.  I would lose 30 lbs per episode.  I never got a diagnosis or treatment for 20 years.  When I did seek mental health help, it was a waste of time and money.  I finally sorted my life experience out by researching on the internet.  This was 20 years after I first sought mental health help. When I solved the mystery of my trauma at 17, I contacted an eptileptologist and she agreed to do an MRI with epilepsy protocol and an EEG.  I am not actively epileptic but my EEG was abnormal.  This meant I went back to the psychiatric side of the psych/neurology divide.  Today I take Escitalopram as my only psych med. I no longer have panic attacks.  The ocular migraines are infrequent.  I hope to never have another depressive episode.  I had ECT in 2014 and it was a game changer for me.  I am retired and am the happiest I have been in my adult life.  It was rough, and I never thought it could have a happy ending. Never.

#5 tfiio


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Posted 10 January 2017 - 02:03 PM

I just want to note that while this is the case for some, it is not the only possible cause. newchie don't you start freaking out about having epilepsy, you've already checked.


edit: not to dismiss the usefulness of the information! just a disclaimer for those with health anxiety who may see this and go "oh no I have epilepsy!" when they have already checked for that. it is a thing that can cause these symptoms. it is not the thing. the thing is different from person to person.

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