Temporal lobe epilepsy question - Epilepsy Action

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Temporal lobe epilepsy question

Hey folks,

I have a question for those struggling with temporal lobe epilepsy to get some advice. I suffer bad with panic attacks, and do have health anxiety. Last month, though, I was panicking all day over health related anxiety and had this odd thing happen where random flashes of dreams popped in my head. I had derealization at the time, and felt so exhausted from panicking. I wasn’t sleeping a lot.

I saw a neurologist the next day, who ordered an EEG and MRI. The dream flashes happened mid EEG and she said it came back clear and they weren’t seizures. MRI was good, too.

My therapist said it would be good for me to talk to people with epilepsy to get reassurance or advice on your own experiences with EEGs. The doc is great, but I have a hard time trusting them. Would auras show up on an EEG?

I didn’t lose consciousness and others told me my experiences could have been just panic or my brain being exhausted. Thanks so much and I hope you’re all well.

17 Replies

I have temporal lobe epilepsy so I know how it can play games with your emotions and mind, my auras are pure feelings of fear and once the seizure is over and everything I’m always surprised at how real it felt and it’s almost a little funny that I’m capable of those kinds of feelings. Anyways what occurred to me when I was reading your post is PNES. I think they get a bad stigma but they are as real as epileptic seizures and not something someone can fake. The only reason why I’m thinking this is because I believe auras should be seen on an eeg. So if it didn’t show up than maybe it could be you have PNES or epilepsy and PNES ( a small amount of people have both) I’ve heard it described as a software problem ( nervous system) versus a hardware problem ( which would be measured on an eeg). Also it sounds like you’re being proactive with your health! I know it’s hard, I get those feelings sometimes of being overwhelmed. Just remember there are so many who are dealing with the same thing and you’re not alone.

in reply to Chingona

Thanks so much for this :) I honestly don’t know if it was PNES but I guess anything was possible. The doc witnessed it and didn’t seem alarmed.. it’s definitely odd. I have a follow up next week so I’ll raise your points. Thanks so much!!

I’ve got Temporal lobe Epilepsy and I’ve had panic attacks, so I can fully appreciate how frightening it is for you. It narrows your life with the fear of taking another panic attack, I know. I too was put infront of my Neurologist by my GP.

To my astonishment my Neurologist said they were nothing related to my Epilepsy, but recommended I got a blood test for my Thyroid one now and another in two months time to get an average means, plus the Thyroid blood test had to include an antibody blood test each time with it. Plus a full blood count each time.

I’d go to your GP and insist to get this tested. Panic attacks and Thyroid problems are very common. Have a read up about it.

Oh and once I got tested and was found to have low Thyroid I got the medication and within a week- no more panic attacks! Bingo!

I truly hope that’s maybe a solution or something like that, to solve these panic attacks for you. You have my complete sympathy. Just be more be the patient that persists and says come on, this isn’t right- test me!

in reply to pampam

So interesting that you mention this. I’m your experience, the aura would have shown up in an EEG if it occurred at the time, right?

My thyroid was actually a little low! The TSH was, anyway. Everything else was normal and my doc and neurologist said it wasn’t low enough to cause concern. Hmmmm.. I’ll ask again during my follow up :)

pampam profile image
pampam in reply to

I’m not a Doctor and I’m only speaking from similar experience to yourself. If you’re Thyroid Level was a little and you have been getting panic attacks when you’ve really never had them before, then the GP should consider this, by arranging for you to get a Thyroid test in 3 months time again to then be able to get an average from both results. This average will give them a clearer picture of how your Thyroid is working.

I had to go through 4yrs plus of Tonic Clonic seizures out of the blue and not until the Neurologist saw me and pushed the GP surgery to test me.

I’m glad the rest of your blood results were fine-that’s really a great healthy sign actually. So well done there.

It’s either you go back to your Neurologist and say please can I have another test in 3months time or you keep an eye on your Thyroid yourself by asking either the GP and/or the Neurologist every year to test you. Just keep an eye on it yourself, that way.

Thyroid problems are so common in women that in France for example they test the Thyroid when all women hit age 40.

The aura during an EEG, I have no idea if it would or should show up during an EEG. In that respect I’d put your trust in the Neurologist or get yourself a second opinion- another Neurologist. It sounds as though you’re in doubt and that’s not good for your overall sense of well-being. That could make matters worse of you, So you’re allowed you know, to ask your GP for another referral to see a different Neurologist. It’s just an appointment and if you tell your GP it will put your mind at ease (which it will) then a good GP will understand.

Anxiety as a cause of your attacks, perhaps has to be considered and again your GP should be offering counselling which is excellent.

Whatever is causing this, my heart truly goes out to you and I hope you get some resolution. I do understand.

Feel free to get in touch with me with any future queries about this or other symptoms.

From also being a temporal lobe epileptic there are many different emotional states which take place. Anxiety along with panic attacks I have been through so much. My neurologist told me it was do to my seizures. In addition I was told an EEG can only reach a certain depth in the brain to where my seizure were not accessible through an EEG. It was certain though, it was seizures on my part.

Out of all I understand where you are coming from.

in reply to Brainstorm17

Interesting! My panic is definitely desperate, but I’m curious to know how you got diagnosed if it couldn’t be seen on an EEG?

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Brainstorm17 in reply to

I was diagnosed from going through symptoms of an epileptic. Such as blacking out or staring. Even if an EEG didn’t show any signs, my physical state was showing all the indications of an epileptic. Even verbally was an indication of it coming from the temporal lobe.

in reply to Brainstorm17

Ah ok, that’s super interesting. When you say your physical state showed signs, do you mean just during the seizures, or like when you were with the doctor not having seizures?

I’ve never had blacking out or staring spells; even when my dream recall thing happened, my roommate was there and said nothing weird happened except that I was panicking all day, which was frequent at that point.

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Brainstorm17 in reply to

Correct. During seizures my physical state changed, as did my speech. Official signs of epilepsy. Resulting with being diagnosed.

Auras don’t always show up on a scalp recorded EEG. If you had electrodes in the part of the brain where the aura starts then you would record it. They may have have said they weren’t seizures based on the description of the hat you were feeling

in reply to Ckj06

Funny you respond! I did my follow up and I asked her all of this - she seemed confident my symptoms weren’t from that so that makes me happy. Being in the room with her when they happened was really what made her feel like I’m not getting them. Yay!

Ckj06 profile image
Ckj06 in reply to

I know it’s not a nice thing to do but if there is any doubt in your diagnosis getting someone to video your seizures and showing that to your specialist is so very helpful. Good luck and I hope you are well

in reply to Ckj06

Thanks! They weren’t seizures after all - just panic attacks. I think I googled too much lol

Ckj06 profile image
Ckj06 in reply to

That’s good to hear. We are all guilty of consulting Dr Google at sometime or another and diagnosing ourselves with something or other, often wrongly. Good you got it investigated and I wish you well in the future x

Derealization is actually a dissociative symptom but some epilepsy meds cause it, if you are on keppra these can be signs of D.I.D. dissociative identity disorder or another dissociative illness mention it to your Dr also panic attacks go along with Dissociative disorders. keppra and pro levatiracetam can over a long period of time cause these. Have you ever felt like your personality or mind went into the back of your head and nothing or someone else was moving your body? If so that would be co-conscious switching out. This has happened to me I was on keppra then switched to levatiracetam and over time eventually it happened I never even knew I was dissociating for 20 years. But even the first time it happened I had no clue until I heard a description of how it felt.

Hope this helps best of luck.

I had an EEG years ago to see if there was a problem, but my epilepsy is genetic, it is on my dads side of the family, strangely his generation was clear of it, but it came out in me and my cousin and 1 of her kids, in my family we inherit a predisposition, you can take it on or be none the wiser

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