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Temporal Lobe Epilepsy: what does it feel like?
Sat, 06/06/2009 - 13:00Hi 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 Cint444 on Tue, 2010-11-30 - 20:44
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by angelacarwile on Wed, 2010-12-01 - 09:19
Hi Cint444,
You should definitely see a Neurologist. I know how you feel - I was the same way. I was diagnosed with TLE in 2007 right before my 30th birthday. Like you, I thought I was having dizzy spells, anxiety, even tunnel vision. I also get sudden rushes of impending doom. This went on for years before my actual diagnosis.
I lived alone so no one actually saw anything out of the ordinary until the complex partials took over. What I thought was happening in my head was completely different than what was witnessed by others. You may be experiencing this too. I also had the cold blood rushing up and down my arms and legs, my vision would blurr then progress into tunnel-like vision and all of a sudden it would zap - like when the television loses power and zaps on and off. In my mind, there was no lapse of time, but in reality I would be out - as if the lights were on but no one was home. These things happened while I was driving - Horrible and I had no idea. I had guardian angel's watching over me. My symptoms started to get so severe that at times I would be at work and wonder why I was there and how I got there. I had severe memory loss to the point I had to start writing everything down; then look back and wonder why I wrote it and what it was about. I missed important meetings, etc.
I guess what I'm trying to say is, in the beginning things seemed minor (in my mind) but they progressed to the point where I not only put my own life in danger, but the life of others as well. Like you, I didn't want to go to the Dr. 1) I felt I had no time - the Navy couldn't possibly run without me. 2) I was embarrassed and thought I might be going crazy. Believe me honey, you're not alone :) It's a tough process to get thru, but well worth it in the end. Don't worry about what others may think - you're what's most important. Take care of yourself first.
Please read my story on my profile; it may give you a little insight into what's going on with you. Easier said than done, but try not to worry too much. You have support and a wealth of knowledge right here on this website. If you have any questions, please feel free to email me. I'm hard to reach on the weekends, but during the week, I'm here along with MANY others.
Take care of yourself! God bless you sweetie! I promise things will get better :)
Angela Sanders
Hi Cint444,
You should definitely see a Neurologist. I know how you feel - I was the same way. I was diagnosed with TLE in 2007 right before my 30th birthday. Like you, I thought I was having dizzy spells, anxiety, even tunnel vision. I also get sudden rushes of impending doom. This went on for years before my actual diagnosis.
I lived alone so no one actually saw anything out of the ordinary until the complex partials took over. What I thought was happening in my head was completely different than what was witnessed by others. You may be experiencing this too. I also had the cold blood rushing up and down my arms and legs, my vision would blurr then progress into tunnel-like vision and all of a sudden it would zap - like when the television loses power and zaps on and off. In my mind, there was no lapse of time, but in reality I would be out - as if the lights were on but no one was home. These things happened while I was driving - Horrible and I had no idea. I had guardian angel's watching over me. My symptoms started to get so severe that at times I would be at work and wonder why I was there and how I got there. I had severe memory loss to the point I had to start writing everything down; then look back and wonder why I wrote it and what it was about. I missed important meetings, etc.
I guess what I'm trying to say is, in the beginning things seemed minor (in my mind) but they progressed to the point where I not only put my own life in danger, but the life of others as well. Like you, I didn't want to go to the Dr. 1) I felt I had no time - the Navy couldn't possibly run without me. 2) I was embarrassed and thought I might be going crazy. Believe me honey, you're not alone :) It's a tough process to get thru, but well worth it in the end. Don't worry about what others may think - you're what's most important. Take care of yourself first.
Please read my story on my profile; it may give you a little insight into what's going on with you. Easier said than done, but try not to worry too much. You have support and a wealth of knowledge right here on this website. If you have any questions, please feel free to email me. I'm hard to reach on the weekends, but during the week, I'm here along with MANY others.
Take care of yourself! God bless you sweetie! I promise things will get better :)
Angela Sanders
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by mmepps on Mon, 2010-09-27 - 20:52
Rokchik, I too am very scared of meds because of reactions I have. Now, at 29 and diagnosed, I realize that some of those strange side effects are probably due to interactions with epilepsy that had been undiagnosed. I have been on Lamicatal for a month now (on the progressive increased dosage - 25 mg for 2 weeks, 50 mg for 2 weeks) and I start the 100mg dosage tomorrow and have a 1-month follow up appointment. So far I am still having the 30-second long, panic feeling seizures about once per week, but am hoping the increased dosage will get rid of those and I can stick with that. I have not had any side effects from the medication - no weight gain, no mood swings (obviously still getting used to the diagnosis, but none from the meds), no headaches, etc. Additionally, I used to have an issue with acid reflux and upset stomach - I no longer have that and can eat foods as spicy as I like. So it must have been related somehow since they went away after taking the Lamictal but not for years with acid reflux meds that I finally just gave up on. My situation was that I have had "30 second long panic attacks" for 6 years now. Anti-anxiety meds didn't help and I would even have them if I worked out and didn't do a cool down session or if I stop abruptly. Just before Memorial Day this year, I passed out at work, had tremendous head trauma and a grad mal. I had an EEG, EKG, CT Scan, spinal tap and MRI - all came back normal. I was fortunate to have a great GP who fought for me and wouldn't let them put me on any meds until they proved it was epileptic in nature. I did have a second grand mal 7 weeks later, and then was pushed up in priority for a 72-hour mobile EEG. While wearing it, I had a "panic" feeling and pressed the event button and it did come back as epileptic - I saw the print out myself. It was then that I went on the Lamictal. It has a very low incidence of birth defects (4% chance of cleft pallet where other women w/o the med have a 3% chance) and is not associated with any major ones. I certainly understand your hesitancy, but have to say for me, it has been good to think that I am regaining control. Right now I can't drive yet, but am hoping to get cleared tomorrow. I do still have ups and downs and get cabin fever and get mad that I have to depend on others at times to get things done, but I'm working through that. It is kind of like a grief process. But I'm making an effort to get back to life as usual, making myself do things I wasn't scared to do before. I think the security of being on meds is helping with that. Good luck, and feel free to email me if you want.