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Temporal Lobe Epilepsy: what does it feel like?

Sat, 06/06/2009 - 13:00
Topic: Diagnostic Dilemmas and Testing

Hi Everyone!

This is my first time on this site and I am glad to have found you all!  I was "diagnosed" with Temporal Lobe Epilepsy 18mths ago following years of strange symptoms, 3 abnormal EEG's and an MRI which showed a leision in the Lt T Lobe.  I was supposed to take Lamictal but so far am too scared to.  I have different symptoms including, fear, shivering, dizziness, visual disturbances, etc.

My neurologist now thinks because my symptoms have changed i.e. shivering and some twitching of limbs occasionally, and a weird feeling that my stomach is rising into my throat and choking me ( at night) that I should have a Video EEG to clarify things.  I really don't want to take Meds until they are SURE that the diagnosis is correct because I react badly to meds. 

I would be really grateful if anyone could shed any light on what TLE is like for them and also if you have had the Video EEG what it's like.

Thanks!

 

Comments

Re: Temporal Lobe Epilepsy: what does it feel like?

Submitted by capecodmom on Sat, 2009-06-06 - 15:27

Hi, my name is Jen and I just got home from Long Term Monitoring in-patient.  EEG/Video monitoring.  They were trying to capture and record one of my "events" to confirm the diagnosis of TLE.  I don't know if this will help you as I have been told that my seizures, while thought to be TLE are rather atypical.  I get waves of electricity that shoots through my body and stops me in my tracks.  When this happens I have trouble walking, (legs have a mind of their own), I get blurry to double vision, and trouble with my speech, (slurring, thick speech).  My EEG showed abnormal electrical discharges on the left side of my brain, this was seen even when I was not having an "event".  A lot more discharges were seen immediately following my seizure.  As luck would have it, mine anyways, they outfitted me with a battery pack to get me out of bed so that a seizure could be induced and I did have one but the battery failed so they ended up missing the actual event but did get me hooked up to the monitors back in my room immediately and then saw the electrical activity.

 I would reccommend to anyone the LTM on an inpatient basis.  It helped with my diagnosis.  I have been started on Lyrica last night.  I have my fingers crossed.  It sure beats sitting in room after room at different doctors offices trying to explain to them what happens to me during a seizure. 

 I hope this helped.  I would be interested to hear from other people who have gone through this type of monitoring.  I was in the hospital six days in Boston.

Hi, my name is Jen and I just got home from Long Term Monitoring in-patient.  EEG/Video monitoring.  They were trying to capture and record one of my "events" to confirm the diagnosis of TLE.  I don't know if this will help you as I have been told that my seizures, while thought to be TLE are rather atypical.  I get waves of electricity that shoots through my body and stops me in my tracks.  When this happens I have trouble walking, (legs have a mind of their own), I get blurry to double vision, and trouble with my speech, (slurring, thick speech).  My EEG showed abnormal electrical discharges on the left side of my brain, this was seen even when I was not having an "event".  A lot more discharges were seen immediately following my seizure.  As luck would have it, mine anyways, they outfitted me with a battery pack to get me out of bed so that a seizure could be induced and I did have one but the battery failed so they ended up missing the actual event but did get me hooked up to the monitors back in my room immediately and then saw the electrical activity.

 I would reccommend to anyone the LTM on an inpatient basis.  It helped with my diagnosis.  I have been started on Lyrica last night.  I have my fingers crossed.  It sure beats sitting in room after room at different doctors offices trying to explain to them what happens to me during a seizure. 

 I hope this helped.  I would be interested to hear from other people who have gone through this type of monitoring.  I was in the hospital six days in Boston.

Re: Temporal Lobe Epilepsy: what does it feel like?

Submitted by rokchik1 on Sat, 2009-06-06 - 16:23

Hi Jen!

Thank you so much for your reply! It means a lot to me.  It seems like people can have lots of different types of episodes but be labelled with the same condition!  It is so confusing.  I will be inpatient for 5 days I am told but unlike you I am in London!

I hope the meds help you, lots of luck

 

Hi Jen!

Thank you so much for your reply! It means a lot to me.  It seems like people can have lots of different types of episodes but be labelled with the same condition!  It is so confusing.  I will be inpatient for 5 days I am told but unlike you I am in London!

I hope the meds help you, lots of luck

 

Re: Temporal Lobe Epilepsy: what does it feel like?

Submitted by ElectraMom on Mon, 2011-09-05 - 01:48
Wow, some of your posts sound similiar to me incuding yours rokchik1 along with some other weird events/sensations I experience. Lately I have been under stress from work covering a few positions for holidays and pissed at not getting all my own work completed. And being a mom running around with my kids activities and all is exhausting. I was starting to feel like I just couldn't keep up and was overexerting myself without realizing it. I wasn't taking a break regularly because I wanted to get MY workload done and was getting tired. The computer screen was starting to get blurry and my eyes were sticking for a few seconds. I just wanted to relax but didn't have time at home or at work. I started feeling overwhelmed a bit getting pressure in my head like if I was standing on my head too long and had a few electric shocks in my head now and then. Another sensation that seemed strange to me was an electricity feeling in my head for a second or so which I thought could maybe be a blood clot or something. Then another day while under this period of stress I had another aura but different from the migraine auras I usually have. I was at the printer a work and one of my managers came to give me some work and I starting getting this weird pressure in my head for a few seconds and I couldn't talk or write information down and I started to panic wondering what the heck is going on...but tried not to panic and stopped working thinking maybe it's just another type of aura...I managed to say I am having a migraine and have to go sit down. I thought this is it, I am losing my mind or something is going on in my brain, lol. Then once again, on another day at work I was walking from one of the offices (I am a Clerk) and I had another weird aura where I knew I was at work but I couldn't recall the place I was at and was looking straight ahead like my eyes were stuck and was wondering around but didn't know what to do with myself. Geez, it was so strange. But it only lasted for a while (not sure how long). I started to feel once again that something IS going on in my brain and I needed to take a break and go to the doctor. Later that night when I went to bed my husband said I woke in the night and was tossing and turning and he was trying to talk to me but I wasn't answering him. He was thinking a seizure that night while sleeping but my husband wasn't sure if I was just having a dream or what or something was medically happening to me. He said I was snoring funny, drooling, and flipping around. I woke up with my tongue swollen so much I couldn't even talk, my tongue was so big and sore because I had bit both sides. I went to the doctor feeling soooo sleepy and kinda sick in the stomach and he thought I had Shingles because my tongue had white stuff on the bite marks. So I stayed off work for 2 weeks until I felt better. After being at work for a few weeks I had another Grand Mal seizure in my sleep. Initially I woke up in the morning at 7:00am feeling weak in the legs, really sleepy with nausea so I called in sick and laid down to get a few more z's and had a seizure which I did not know about until I woke up in hospital the next day. My husband knew then that I indeed had a seizure in my sleep before. I could not remember this event but he saw the whole thing and the fit. After this event, I could remember past events but not recent current events, thinking oh crap my memory is bad. It took a week before I got my memory fully back and felt normal again but my memory is still not perfect. I wonder if peri-menopause is kicking in? I am 42. Anyway, I had 2 EEG's which confirmed seizures, but I don't understand how the dr can tell you had a seizure after the fact, and the CT scan was normal. I recently had an MRI which was ordered by the neurologist and I am waiting to see the neurologist again in a week and get the results of the MRI. Since I am having seizures and auras they started me on Lamotrigne 25, 75, 100 a few weeks ago. I get a headache after each increased dose and don't know if it is really doing any good but making me spacey and tired although I haven't had a headache, blurry vision, but still now and then feel pressure. My husband is making me take it because he is frightened it will happen again. I already take blood pressure pills and really hate taking pills because they all make me tired and I like to be on go. I feel stupid and forgetful now. I always had migraines once a month because of the hormones kicking in and I usually have visual auras and can't handle strobe lights or anything that makes me dizzy like rides and stuff. Certain foods make me hot and give me headaches so I avoid them as well. With regards to visual auras from migraines, I can only describe those as like seeing a heat wave coming from a plane which last for about 20 minutes and then I get a slight headache. The last time I had a surge of electricity in my head that scared me and the doctor said it was anxiety but I think he was full of baloney because I had the electric surge and couldn't talk to him and it frightened me. Although the event was at a different hospital (than when I had the Grand Mal Seizure where I had a great team of specialists because I was admitted to hospital because I never woke up) This other hospital also gave a wrong diagnosis when I slipped on a piece of ice a few years back and collapsed my lung and they said I had pleurisy but ended up calling me back to admit me in hospital to get a chest tube put into my lung so it wouldn't put pressure on my heart. Another time, a few years after that event, I slipped on a patch of ice while driving and went off the road and totalled my Vue and must of hit my head because I had lot of lumps the size of eggs on my head and I also must of been in shock because I couldn't speak to the Ambulance driver. But that same day 17 vehicles went off the road in the same area because only part of the highway was frozen. I don't know if these events have anything to do with these seizures now or maybe hormones or maybe just stress. Who knows? Anyway, I am sorry to have such a long story but that is my history. Right now I don't know what is on the go with me so I am irritated and feel like I can't handle anything anymore and maybe have a low threshold for stress or maybe I have something else wrong with my brain...have no idea as I am still in the testing phase although they are saying possible epilepsy but are testing to see what part of the brain I guess. Oh! And I don't have my license now and that really upsets me because I hate depending on people. I will be having a good talk to my neurologist with a list of questions to ask to see if I definately have Epilepsy. Thanks for listening! Can't really talk to everyone about this unless they walk in my shoes because they will think I am nuts so I am glad your all here to listen to my story!

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