IS this denial ?

[vapour]

Hi. I have been wondering something...for a while.

Since I was finally diagnosed a few months ago....(my neurologist is great, and one of few who does the EEG herself and reads it etc..is there while its being done)... I keep asking pretty much the same question..

are you sure its epilepsy and not all "in my head" or "psychiatric" ?

I think partly because I dont have tonic clonic... I have simple and complex partial and some of my symptoms may look like schizophrenia (temporal lobe epilepsy)... that might be some of it... but perhaps there is denial I dont know.

I asked my Neurologist again after my last app in an email afterwards. I start getting paranoid thinking.. what if people are lying to me about having epilepsy.

So anyway she did respond.. I will copy and paste it here:

3. Do you have epilepsy and psychiatric problem such as depression or is it all psychiatric? Answer: Epilepsy and psychiatric.



Anyway, perhaps its denial, or perhaps this psychiatric problem I have is causing paranoia.. has anyone else had this problem ?

I am going to a epilepsy brain storm summit in los angeles on saturday for awareness month.. its a big gathering where you can go to workshops and stuff... will let you know how that goes.

 

[Deb]

your not alone in denial or taking your meds

Hi,
i too have denial about weather i have epilepsy. the eeg's (3 of them, 2 done at home for 3 days) said i have seizure acitvity but i did not recall having a seizure. that is until i started skimming thru some of the postings here. and what i experinced this last weekend. being functional and not remebering anything. wakiing up in the hospital and adminting that i wasn;t taking my keppra xr becuse i was in denial.
i think i am starting to maybe change my mind,


anyways, your not alone

deb

 

[epileric]

I've had seizures all my life but only recently, after 49 years I found out that I do things during a seizure that I have no recollection of. I was a teachers aid & I had a small seizure (or at least I thought it was small) when right after the teacher looked at me & nodded as if to ask if I"m OK now. When I asked her how she knew I had a seizure she described a jerking of my head that I didn't think I'd done during a sz since I was a kid.

I do remember parts of the seizure but apparently there are parts I don't. What I learned from that is that I don't know when I remember the whole thing & when I don't. Maybe having someone describe to you what you'd done after one will help.

 

[Crystal11]

I have had Epilepsy my whole life- I was not treated as if I did and I wasn't even taking medicaitons back then. I had Absence seizures and my Mom believed that I would out-grow them and medicines were not necessary. When they became Complex partial seizures then things had to be done. I started Tegretol at 13 for a few years and then my Mom was telling me that my seizures are not severe enough to take meds. Probably because I don't have Grand-mal seizures probably. So I agreed with her believing that it was mild and didn't really interfere too much- but really it did. If I knew what I know now about complex partial seizures- I could have told her other wise and been treated when I should have. Because of the lack of knowlege from me or my mother- i've had to live with seizures that interupted my day. So now that we know and have been seen by three other neurologist- I am now currently being treated. I sometimes think to myself "How odd that I've had Epilepsy my whole life, but I don't feel like it." Its when I think about the times I got hurt, times I could not function properly or times that people had to help me during a seizure is when I realize that, yes I had Epilepsy my whole life.
I now live with my twin sister and best friend who both have Epilepsy too and we take care of eachother and look out for each other without being too worried. Its hard to balance being worried about your twin or friend having seizures and trying to lead a normal, fun and productive life.
We all sometimes have times when we feel that we don't have Epilepsy until a seizure happens.
I too asked my neurologist "Are you sure these spells are not anything related to my other disabilities?" "Are you sure they are not just my brain taking a break?" She said "Your EEG shows spike and waves and seizure activity- you have Epilepsy." I felt weird hearing it from her- but I've known all along but I just wanted confirmation too. The EEGs I had were able to help solve the puzzle. Now I look back on my life and see where the troubles were. Getting in trouble in school for "staring off into space all the time" to "Crystal won't respond to her name."
Anyways- you are not a lone on this- there are probably lots of others who feel similarly.

Take care,
Crystal

 

[C0urt]

since all my test come back clean and I am not light sensitive, one of my doctors said it might be in my head. I feel like most of my depression is called by my meds, so I really dont know

This doctor also later said he didnt know. So I would keep trying if I were you. best of luck

 

[Nakamova]

It's tough because epilepsy is "all in our heads" at some level, and affects our brains and our perceptions. But while I don't always trust what doctors have to say, I would believe your doctor when she tells you that you have epilepsy. It would be unusual for a doctor to tell you that you had epilepsy if you didn't. More common is the opposite scenario -- doctors telling people that they don't have epilepsy when they do.

When I was first diagnosed with epilepsy, I really wanted it to be "pseudoseizures". It wasn't denial, it was more fear of the unknown and the uncontrollable. But now I know my epilepsy is real, and it's important that I take it seriously in terms of treatment.

 

[Bernard]

.. what if people are lying to me about having epilepsy.

Seriously though, we have several members here who also have questions about reconciling their condition with differing diagnosis for epilepsy versus other disorders. Apparently, there are cases which are difficult even for the experts to diagnose:

http://www.coping-with-epilepsy.com...ex-partial-nead-nes-pnes-including-ptsd-1680/

More food for thought:

http://www.coping-with-epilepsy.com/forums/f23/nes-vs-pnes-2439/

http://www.coping-with-epilepsy.com/forums/f23/questions-about-new-epilepsy-research-2400/

http://www.coping-with-epilepsy.com/forums/f22/blood-test-records-seizure-activity-618/