Is it Temporal Lobe Epilepsy?

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fluffance

fluffance

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Hi all,
this is my first ever post on this site.
Im wondering if you think this is Temporal Lobe Epilepsy.
Over a monthe ago I started having what I call "Spells". It's starts with, what I can only call 'Deja Vu' very weird, like Ive dreamt the situation Im currently in. Then I feel this strange sensation like a wave of pressure go over my body and especially my face. I often feel nauseated after. This would occur atleast once a day.
Then 3 weeks ago I had 3 seizures within 30 hrs. These also started with deja vu, but alot more intense. I thought I had just fainted, but my partner said my eyes were wide open and I was jerking. (very scary). I have had spells nearly everyday since.
I originally thought I was having panick/anxiety attacks. (thought I was going mad)
Ive seen a consulting physician and he was 99% sure I had Temporal Lobe Epilepsy. Im booked in for an EEG and MRI next week. The only thing is, I may not get into see my neurologist for 3 months (I live in the country) I dont think I can wait that long without an answer!!!!!!

Whats your opinion??
Thanks for taking the time to listen/read
 
Hi Fluffance, it sounds like epilepsy to me. I think your having complex partial seizures, I've had them myself. I'm having at least one simple partial a day (I think thats what it is) at the moment and I cant see my neuro till June so i'm seriously considering going back to the ER and pushing for more help. I know how you feel, it's so frustrating isn't it! I think you should speak to your GP and find out what they can do for you. I cant see my GP till wed and i'm not sure i'll last that long, i'm exhausted!
 
Thanks heaps for the reply. I went to the emergency room after the 3 unconscious seizures within 30 hrs and they sent me home with 2 aspirin!!!!! That was their answer. The headaches Im getting are so annoying and going to work is a chore. I'm not allowed to drive so Ive got family driving me everywhere. (I miss my independence)
Its been comforting surfing around this forum, reading everyones stories, knowing Im not alone. Its hard when friends dont understand what your going through (or dont believe ) Hope to get some answers and meds soon
 
Hi fluffance, welcome!

I agree with Wobblez, your symptoms do sound like partials. Unfortunately they can be hard to diagnose with tests (they don't always show up on EEGs), so it's good to keep a seizure journal so you can show the neurologist what's going on, and how often. And make sure you ask the consulting physician to provide a report you can give to the neurologist too.

There's info at the start of this thread about complex partials that you might find helpful: http://www.coping-with-epilepsy.com/forums/f27/complex-partial-seizures-epilepsy-4857/

I hope you can get some help soon. in the meantime do you best to stay generally healthy and stress-free. Make sure you are getting enough sleep, and drinking and eating properly. Stay away from stimulants, and stress-ful situations.

Best,
Nakamova
 
Thanks for the link and friendly support :)
I have downloaded an app for my phone to record seizures, menstrual cycle etc so thats handy. Cut back to 1 coffee, sometimes 2 per day. I dont drink cola or energy drinks. I do have a beer or wine every few days though.
Im trying to be well rested. But I haven't slept well in years. I was diagnosed with fibromyalgia 10 years ago. So I wake up anywhere between 5 and 20 times a night. My dog often comes to the side of my bed just after I wake, Im now starting to wonder if I have had a seizure in my sleep and he knows. When I had my first black out, I was in the shower and he let himself in and looked at me. (something he has NEVER done before)
Then I had one. Is it true that sometimes dogs can sense your seizures??
 
fluffance said:
When I had my first black out, I was in the shower and he let himself in and looked at me. (something he has NEVER done before)
Then I had one. Is it true that sometimes dogs can sense your seizures??
Click to expand...

Hi Fluffance

Before I was diagnosed, I was sleeping poorly, and several times woke with one of my dogs standing on my chest, breathing right in my face (possibly licking me). Some nights she was on and off my bed all night; I now realise it was probably because I was seizuring.

She also refused to walk on a lead once, after my diagnosis, when I was feeling pre-ictal. She normally loves the lead! When I'm pre-ictal, she looks at me with her ears pinned back and eyes wide open. She has also barked at me a couple of times.

I still have nocturnal seizures, although they've settled down a lot, and she still sleeps on my bed. If she's restless during the night, it's a fair bet I've had a bad night.

I now call her my seizure alert dog, although she's untrained, so can't wear a jacket or go in shopping centres etc.
 
Thanks Chel. Thats so interesting with dogs I think. He usually licks me too or I can feel him breathing on my face. On the odd occassion he wants to get up for a cuddle or I find him at the foot of my bed.
 
Same symptons

Fluff my 22 yr old started having seizures about 16 months ago and the Nuerologist ordered test MRI, EEG etc. and after talking with him he was diagnosed with Temperol Lobe Seizures. Like you he was also having whathe thought was anxiety/panic attacks, deja vu episodes and these are all types of seizures associated with Temperol Lobe Seizures. The tough part has been trying to find the correct medication for him. I saw his grand mal seizure for the first time today, his brother has always been with him before. Thankfully it hasnt taken us as long to get into the doctor here. I wish you luck
 
Thanks Jacobs mum. When I was telling my mum about the deja vu feelings she said "Dont tell the doctor that, she'll think your crazy and lock you up" So I didnt at first, just told her the sickly pressure thing and headaches. But after falling unconcious 3 times, I thought I better tell her everything. Thankfully she didnt think I was crazy hahaha
Im trying to determine, the ones when Im unconcious, are called??
Only 1 has been witnessed. My partner said all colour went from my face and only my head was jerking. They start with a simple partial (deja vu etc.)
I had another one this morning, but he didnt see it, only came out to me as he heard me crying. Man I felt so sick after. Wanted to vommit and sleep, big headache.
The Neuro was faxed my referral last Tuesday, I called them and they said "We'll call you with appointment date"
Oh Jacobs mum, I feel so awful for you having to witness he's seizure, that must have been awful for you. I cant imagine witnessing it.
I know I feel yuk and the rest of it after mine, but I feel really sorry for my partner having to watch and feeling useless.
I'm glad your son is getting help and hope he finds the right meds soon :)
 
Fluff
One of the things Jacob does before we go to the doctors is write questions as he thinks of them for weeks prior to the appointment because of his short term memory issues associated with the epilepsy. Also I go to all his appointments because he won't remember what the doctor says not to mention he has no clue how he behaves during some of the seizures.
I asked him if he felt anything during the mild seizures and he said its like he is standing outside of his body and can see whats going on but has no way of controling it. The gran mals he has no recollection of except for the after effects on his body. What really gets us is how long it takes for him to come back around and once we get him talking and ask him his name he always gives us one that isnt his.
One of the meds they put him on sent him into rages, which at the time we had no idea it was the meds and I mentioned to the doctor how he was having the rages and the doctor said it was from the meds so another good reason to have someone with you at the appointment.
Please let us know how it goes for you
 
Thanks Jacobs mom, excellent advice. Ive been writing a diary of when they occur, but maybe should be more descrpitive of them. I'm also going to take my mum to all appointments. At least one of us will hear everything the Dr has to say. Also, she may think to ask things I dont think of or relay info about me. Great advice, thanks for the support, I'll let you know how I go. :)
 
After being told earlier in the week, I'd have to wait 4 months for my first Neurologist appoinment, I recieved a call yesterday saying I have an appoinment at "The First Seizure Clinic" in Melbourne. (Part of the Epilepsy Research Centre) The aim of the Clinic is to see patients who may have had an epileptic seizure for the first time or for whom a diagnosis of epilepsy is suspected. An urgent referral pathway has been established to avoid the usual delays in assessment and counselling for people in this situation where there is often a significant impact on their psychological and social health.

So Im happy about this, because I dont think I would have kept my sanity waiting 4 months!!!!
 
Yaaaaaaay! This is so GREAT, Fluffance. I'm happy you are getting in sooner. Months away was far, far too long.
 
That's wonderful! I wish that kind of urgent referral pathway was the norm.
 
I know, I feel so lucky!! I should buy a lottery ticket Haha. Im on the right path and the journey begins :)
 
Well the answer is yes, it is Temporal Lobe Epilepsy. Had my visit to the "First Seizure Clinic" in Melbourne today. (Part of the Epilepsy Research Centre)
After going through all my tests results, the info I had given them and the call they made to my partner to get as much info out of him as they could, they made the diagnosis. I have been put on Keppra.

I cant applaud the team at this clinic enough. :clap: The team of neurologists and counsellers were AMAZING. They validated everything I said, were not dismissive at all. They were very explanative and gentle and caring. I feel really positive about everything. ........ time will tell, but for now Im relieved that the ball is rolling and have an expert team helping me.
I think I might also take part in their research. They've given me some forms to read and think about, but Im more than happy to help.

I feel lucky that it's only been 2 months since I had my first seizure and already on the right track. One of my staff has "E" and it took 6 years for her to get a diagnosis. And I saw a girl on Youtube with TLE, and it took 12 years for her!!!!!!!!
 
That's such great news fluffance! It's nice to hear when things go right. I hope the Keppra goes right for you too.
 
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