Epilepsy & anxiety/OCD disorders

[Howll]

So, bit of background. I'm 25, had my first ever seizure out of the blue at the age of 15. Had two more between the ages of 15-19, then nothing for almost 6 years until August 2015 where I had another grand mal tonic clonic. Needless to say, the latest one was a big shock. They had always put down my seizures to a mix of anxiety from an existing disorder and hormones from growing up.

Since the last seizure, my anxiety levels have obviously risen tremendously. A lot of my anxiety is health related anyway, and I do think I've got OCD as I obsess over every little feeling and almost look for things wrong with me. Anyway I saw an epilepsy specialist at the beginning of December. A week before I went out drinking, got wasted and stupidly smoked weed for the first time in years. I had a bad trip, massive panic attack and since then have been suffering derealization, a cloudyness, and really bad anxiety.

The way my seizures go is usually a quick snippet of random deja vu (last time i was at a dog show, a black pug came running up to me and I thought I had saw it before). However, with the recent build up of constant anxiety, I keep getting this almost constant feeling of deja vu. It's nothing like what I experience when I have a seizure, it comes with no other symptoms. It's like I'll be walking into work and I'll think "I've done this before, maybe this is a warning". It sounds ridiculous, because I feel like I'm constantly vigilant and trying to look for symptoms of a seizure, and my anxious/OCD mind is looking for it. Does anyone relate?

I really don't think I'm constantly having loads of seizures because it's not anywhere near the strong, scary deja vu I've experienced before a seizure. It's just like a constant familiarity, and I'm thinking it's more to do with my mind trying to make sure the world is real because of the derealization. I dunno, it's just so frustrating and is making me anxious.

 

[Elaine H]

When we are first diagnosed with Temporal Lobe Epilepsy, after experiencing what you just described, and what I have thousands of time experienced since 1986, I think it's almost a relief to know that we aren't going nuts, and that there is a name for it. Coming on CWE was great, and talking to others with similar experiences. I used to see a guy in a flat cap, standing in a 1930's cobbled street, pulling his collar up against the wind, and peering at me over his collar,wow, that was like a trip, in face before me epilepsy was diagnosed, I was thought to be psychic, I'd always get a taste in my mouth, and a really uneasy feeling, I thankfully don't get them very often now, I have what I call Flashes, I get them at the start of the week I am going into a bad cluster of Atonic seizures, and a flash is like,a brief insight of a dream, experience, a memory of someone, I get the taste sometimes, it's bizzare, my heart can sometimes race a bit, I also sometimes talk myself out of it to calm me down as they are frightening.
If you do have Temporal Lobe Epilepsy, your short term memory will suffer, and your long term will be fine.The part of the brain that deals with our dreams, along with the consolidation of our memories is the Hippocampus, I have had my right Hippocampus removed, so as you can imagine, my memory is pretty dire. One interesting thing, we are gifted with the ability to memorize with great ease, sequences of numbers, and I have a brain full of tel numbers, car reg plates going back years!
We all struggle with concentration and I have to have complete silence to read, we also have problems retaining information, but then that's hardly surprising eh?
It's not all bad Howll, please don't hesitate to contact me if you need to know about something, I'm certainly not an expert, but after studying with Leeds Met University, I achieved my NVQ in Epilepsy Care & Management, and I give lots of public talks, I'm passionate about raising awareness of this disease, which is what it is, don't let anyone tell you it's a mental illness, the mind is mental, our brains deal with the rest, nerves, electrical activity, etc.
I hope you'll enjoy CWE, it is brilliant, and a lot of my friends have joined, and it is so good to get different country's perspectives on epilepsy.I'm off out for a Christmas bash tonight, although I am on my own for the first time since 2012, no problem really, I'm trying to see if I can do some voluntary work, if not, I've a house full of alcohol, friends and neighbours nearby.
I really would like to hear back from you? I wish I had information at hand when I was diagnosed in 1986. Have a good evening, and hope to chat soon, take care.
Best Wishes Elaine x

 

[Howll]

Hi Elaine,

Thanks for your reply!

It's comforting to know there are people around that are going through the same. Because it came as such a shock to me the last time, I had honestly thought I was free from the E. I just don't feel like I have a good enough understanding of the condition, the epileptologist I saw basically just asked my partner to recount what happened and diagnosed me. He prescribed Lamotrigine and a week of Clobazam. However because of my anxiety, I've not taken them. So far, I've had such a long time between seizures, and also such a long warning before going into a tonic-clonic I thought I'd rather take my chances.

At the moment, I feel like I'm living in Groundhog Day. I keep on questioning to myself "have I done this before" or "I remember this" but, it's not like the Deja Vu I get when I have a seizure, that Deja Vu is so strong and my vision goes. I was worried I was in that Aura Continua and now that's playing on my mind. But I think I'm just overthinking it, looking for something that isn't there. I'm functioning, thinking perfectly fine. I can work, and do my day to day stuff, I'm sure it's just psychosomatic and I need to wise up, haha!

I hope you have a great party, Elaine! No such festivities for me just yet, one last day in work tomorrow until 11 blissful days off. Thanks again for your reply, I'll make sure I pester you if I need to, hehe.