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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 wilcol09 on Thu, 2010-03-18 - 02:53
Hi Jenn,
I would advise you not to lock yourself inside the house-this may bore you or even depress you. Try to live a normal life but just be careful of situations that may be dangerous when you have a seizure. My officemates know about my condition and they are very supportive because they understand my seizures. Mine is right temporal lobe epilepsy based on my MRI findings.
Just make sure you take your medications regularly, get adequate sleep, and avoid too much alcohol. I drink two bottles of beer occasionally and this doesn't cause any seizures.
Regards,
willie
Hi Jenn,
I would advise you not to lock yourself inside the house-this may bore you or even depress you. Try to live a normal life but just be careful of situations that may be dangerous when you have a seizure. My officemates know about my condition and they are very supportive because they understand my seizures. Mine is right temporal lobe epilepsy based on my MRI findings.
Just make sure you take your medications regularly, get adequate sleep, and avoid too much alcohol. I drink two bottles of beer occasionally and this doesn't cause any seizures.
Regards,
willie
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by capecodmom on Tue, 2010-03-09 - 07:51
Hi wilco109, I know what you mean about being nervous about when and where you are going to be when you have a seizure. I've never had a grand mal but I have myoclonic type ones that prevent me from standing, walking, functioning period for long periods of time. I used to stay home for fear of being in a public place and having one. But then I realized that I was in danger of becoming agoraphobic/housebound, avoiding doing things, avoiding life. So, now I force myself to go and do whatever and most of the time I'm okay and sometimes I'm not but it beats hiding out inside my house, where I have them too but at least I know I'm safe there. So my advice is just keep on living normally the best that you can.
Good luck,
Jenn
Hi wilco109, I know what you mean about being nervous about when and where you are going to be when you have a seizure. I've never had a grand mal but I have myoclonic type ones that prevent me from standing, walking, functioning period for long periods of time. I used to stay home for fear of being in a public place and having one. But then I realized that I was in danger of becoming agoraphobic/housebound, avoiding doing things, avoiding life. So, now I force myself to go and do whatever and most of the time I'm okay and sometimes I'm not but it beats hiding out inside my house, where I have them too but at least I know I'm safe there. So my advice is just keep on living normally the best that you can.
Good luck,
Jenn