Epilepsy Foundation

Information

Temporal Lobe Epilepsy

Hi this is a group for people who's main damage is in their temporal lobe. I want to be able to learn more from you and maybe help you cope with the effects of this injury. After 14 years Im still learning how this injury affects my life, as Im sure you are.

 

Members: 91
Latest Activity: Sep 23

Discussion Forum

Ramachandran And His View on Temporal Lobe Epilepsy

Started by Michelle Bailey. Last reply by Maria Davila May 13. 3 Replies

This is a youtube video from Ramachandran, and his studies on temporal lobe epilepsy. I've found this video to be one of the most helpful and inspiring videos discussing temporal lobe epilepsy I have…Continue

Most effective meds for temporal lobe epilepsy

Started by JezaLynn. Last reply by Danielle Lynn Isaacs May 6. 20 Replies

Hello all,I just wanted to ask for your opinions on the best meds for temporal lobe epilepsy... I know everyone is different, but I have been trying different meds and different doses and I am…Continue

Medical marijuana

Started by Krys Mar 13. 0 Replies

My 6 yr old son has pretty predictable partial/ complex seizures (temporal issues both lobes) usually every 90 days. Since he gets them about 4 to 5x a year, I am still worried about taking daily…Continue

who is on lyrica?

Started by Sophia Meek. Last reply by Sophia Meek Mar 4. 6 Replies

Hi, My dr. wants me to try Lyrica.  anyone else on it that can help me with how they feel on it and the side effects from it.  I read the side effect pamphlet but I think it is better to get…Continue

Comment Wall

Comment

You need to be a member of Temporal Lobe Epilepsy to add comments!

Comment by Melissa Bryan on January 23, 2014 at 12:44pm

20 states have legalized medical cannabis.  But this is in an oil form.  We need to educate ourselves so we can educate the public; a public that is already very uneducated about E anyway.  So they don't think people with epilepsy are going to be going around smoking pot. 

Comment by BETH on January 9, 2014 at 1:08pm

Leslie,New York has approved it! as of yesterday..It was on the news.....No one understands yet why seizures change day to day for any of us...The headline story is from the mother who is using pot instead of chemo on her child who is now cancer free..Dr's are fighting her in court for custody to continue chemo even though the marijuana has worked for over 16 months...Its probably the drug companies who pay for their summer homes....It was on CNN last night...She is refusing to give up her child who is now 100 percent cancer free....Like I said, I'll do anything to stop seizures..I agree with your husband..His Dr.s may even allow him to come into NJ to obtain his pot if they are on the list of Physicians approved to give it...Luckily for me, mine was one of the first....He was even a little apprehensive at first I believe, but now, I have no problem going forward about it to others at all....I'd love to meet with the big shots at the drug companies but they never return my e-mails (lol) can't imagine why....

Comment by Leslie Robbins on January 9, 2014 at 8:17am

Thanks for the support Beth.  My husband actually advocates smoking pot to control his seizures.  Too bad we still don't have medical marajuana in NY!  Would love him to be able to use it medicinally w/out getting high.  He goes to an epilepsy center on Long Island that we love!  Just worrying why the severity of his seizures has suddenly changed!

Comment by BETH on January 8, 2014 at 10:59pm

Leslie,I developed Epilepsy when I was 53 years old, out of the blue!..I didn't even know I was having seizures..It was my friends and my daughter who were witnessing them happen..I always completly stopped what I was doing and tapped my right hand....I refused to believe anyone until I had a car accident and they forced me to go to a neurologist....I went in for testing and actually watched myself on video doing exactly what everyone told me they had been seeing all along....I had temporal lobe surgery here in NJ at the Neuro center and was seizure free for over 3 years...I had been having as many as 80 a day sometimes, each lasting up to 20 to 40 seconds....I have now had a few on the other side of my brain, unfortunatly it is coming from exactly where my memory is located and the surgeons are making a decision about doing a re-section....They know I'll go for anything at all...I have now started the marijuana and my seizures have completely stopped altogether so I may not have to have surgery at all......I still take my meds and no it does not get me strung out like people who are anti pot would love to say....Its the drug companies who don't want to say it works...They can publicly air my EEG if they want to and prove that for me it does......I have recommended several people to the neuro center here and they are all more than thrilled with their results...The DR's here are fabulous and the surgeons here come from here in NJ and NY and work together....Good luck to your husband...Epilepsy rots , we just don't ever hear about it becuase people are afraid to talk about it...Not my friends or neighbors anymore, they even make jokes to me, which crack me up....good luck again, my thoughts are with you guys..

Comment by Leslie Robbins on January 8, 2014 at 2:42pm

My husband developed left temporal seizures (grand mal/tonic-clonic) when he was 13.  He is now 45.  He has been on medication since then and has had pretty good control, although he has had break through seizures over the years.  This October was the 1st time he has status epileptus and was hosptilazed in the ICU on a respirator after have 7 consecutive seizures.  He was able to come home after 8 days and went back to work after 5 weeeks.  Then, on December 27th, he experienced another episode of staus epilepticus, having 4 seizures in a row, and requiring him to again be put on a respirator in the ICU.

I completely understand the PTSD references.  When I try to explain how I feel to people, that's exactly the phrase I use.  Sometimes, my husband will make a noise or facial expression that replicates something he does when he has a seizure and it FREAKS ME OUT!  I know he can help it, esp. since he has no idea what he looks/sounds like while he's seizing!

This has been very traumatic for my whole family, esp. our 2 children.  His neurologists want him to explore surgical options, removing the affected portion of the brain.  I really don't know what to do- we are filled w/stress and worry about brain surgery, finances, etc.  And that is not good for him either!

Comment by Katherine Haig on November 14, 2013 at 7:14pm
I was diagnosed with temporal mesial sclerosis when I was 18, although I suffered from seizures my whole life. I realized I was 'lucky' to know the cause of my seizures. I have been on every anti-seizure med. When I was 25, I gave birth to my son, who was diagnosed with autism when he was just about two years. I was also suffering from a neuropathic pain disorder, which nearly crippled me. Two years ago, I was blessed to find a neurological team that had seen a case like mine before. They told me I was having low grade seizures that were causing my pain.
I started the testing for the surgery, and had it last December.
Since, I have been seizure and pain free. I am now going back to college to become an advocate for people with invisible disabilities and I would eventually like to fix the loop holes in the ADA.
Comment by chelsea blyth on November 14, 2013 at 6:58pm

Hi guys, I suffer from temple lobe epilepsy or so my doctors say. They still dont truly know where my epilepsy is coming from which makes me really scared. That I wont lie about. I am not sure whats up with me. They say one minute its temple lobe then that its frontal the next. I having seizures often at the moment and feel bad on how its affecting my family. I have made up a page for people who need help dealing with epilepsy and helping raise awareness. This helping me heal as well. So if you could all please join i would really appreciate it.(link below) 

https://www.facebook.com/EpilepsyAwareness18

ps:if anyone has any advice on what i should do. I would really like to hear it.

Comment by Charles McClinon on September 24, 2013 at 1:01am

Most of my seizure activity takes place during one sedentary position or another. That includes sitting, reclining or lying down. Who has experienced a seizure while standing upright with no support? It seems that for seizure activity to take place a person has to be in one of those positions. Most the time when a person's seizure activity starts, that person will eventually be in one or another sedentary position.

Comment by William Smith on September 18, 2013 at 10:12pm

I'm new here to this website, so I'm not quite sure how to go about this. Anyway, does anyone else have their seizures start from their left temporal lobe? I have complex partial seizures. When I have a seizure my right side goes somewhat numb, and it's hard for me to talk. My hearing also goes haywire. I am able to see and hear fine the whole time I have the seizure. Does anyone else have any of those problems?

Comment by donald burger on September 13, 2013 at 7:01am
Hey Christine my 3 1/2 year old had the grid with 126 probs put on her brain on Monday and will be going for the second surgery on Monday my daughter is non verbal so I can't tell u what she is felling but has really just been really tired but that might be from her sleep disorders that are not letting her sleep and withdraws from her meds
 

Members (91)

 
 
 

Terms of Service Update 6/4/2012

We have updated our Terms of Service for eCommunities Groups.

Events

October 2014
SMTWTFS
1234
567891011
12131415161718
19202122232425
262728293031
       

© 2014   Created by EF Admin.

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service