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Newbie with TLE
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Twilight0925 posted:
I was just diagnosed this past Monday with temporal lobe epilepsy, which I now realize has been presenting for several years with what I just thought was spacey moments on my part. My neurologist said that I have been having complex partial seizures. His findings were bore out by an abnormal EEG and an MRI that shows deformity of my frontal lobes. He has put me on Lamictal XR, and I desperately hope that we can get this under control. I have also been dealing with chronic pain due to spinal stenosis and fibromyalgia.

At least I am going in the right direction now, and I look forward to meeting everyone here!
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saxofone1 responded:
Hi Twilight,

Welcome to the group. My name is Angie. I was diagnosed with ep in '75, shortly before I turnded 14. It was originally thought to be simple seizures( then called petit mal.) Later tests showed them to be complex partial(then called psycomotor.) The origin was my right temporal lobe. The docs determined my ep was due to the meningitis I had when an infant.

Initial tests showed no seizure activity for them to determine that it was ep. They wanted to go the route of psychosomatic, which means that it might look like a seizure but is actually something else. Such a misleading term "psychosomatic" is.

Anyway, with all the changes of meds, docs, and addresses, I was able to cont my life. Yes, detours had to be taken as well as delays(college, independent living, etc) but I moved forward. Epilepsy wasn't going to box me in!!!!

Moving forward, I had a parial right lobectomy in April '02 when I lived in Mpls. I currently live in Las Vegas.

The fact that you said that you were" diagnosed with TLE" and didn't identify yourself as an epileptic is a positive start for you.

That is my story in short. Again, I welcome you. I think you will find much support with us. Please feel free to ask anything. There really are no stupid questions.

What would you like to know?

a new friend,
angie
 
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Twilight0925 replied to saxofone1's response:
Wow, Angie...I am in total awe of you! I am just now experiencing the drawbacks of this condition...not being able to drive by myself is really rubbing my fur the wrong way! But you, having dealt with this for so long...you are amazing! I guess my first question would be regarding medication. Have you had much trouble in getting the meds nailed down? I have chronic pain and for the past 4 years have worn 100 mcg. fentanyl patches and taken various narcotic oral meds for breakthrough pain. I have to be constantly rotated because I get tolerant to medications so fast, and I wonder if that is going to be the same with my epilepsy meds.
I want to thank you for responding to me so fast, and I am truly looking forward to knowing you better!
 
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clarinet2 replied to Twilight0925's response:
Twilight, we want you to know that with your medication experiences with other medical issues you need to be patient with side effects and exactly how long it takes to get the medications through your system before you may start seeing results.

I would recommend that you take your prescription list to a pharmacist and have a one on one counsel session with him or her to find out the effects of all of the medications you are taking for spinal stenosis and fibromyalgia and your anti seizure medications especially when they all have been prescribed at the same time.

It can take time for medications to be adjusted and of course you are aware of this due to the other medications you are on.

If you are still have problems with both consider other options. I know friends who have fibromyalgia and have tried alternate methods such as acupuncture, water therapy and other natural choices.

The consulting with a pharmacist will help you understand the possible side effects of all your medications and the what can counter-interact with your medications as you are being adjusted.

I am a friend of Angie's who had the same type of surgery done, that is how we met.

Best wishes!
Dana
 
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saxofone1 replied to Twilight0925's response:
Hi Twilight,

Yes, I have been through alot. I never learned to drive because my seizure activity just wouldn't settle itself down long enough. I would go through long periods of no seizures but suddenly they would become erratic again. Later, I simply lost the interest in learning how to drive.

I have been on at least 10 different meds since the beginning. Most of the meds were effective for awhile but my seizures were constantly changing and so different meds were being tried. My body would adjust to one whereas the med was no longer effective. It has been a roller coaster.

The 70s saw a constant change of meds because the docs were searching for one that I could handle. Most of them made me extemely sleepy, tired, dopey, etc. Sounds like the 7 dwarfs, I know. One affected my gums to the point that it was painful to brush my teeth. Another turned me in to a Jekyll-Hyde personality. HIgh school was rough but I made it through.

College was much easier because the meds were not interfering with my work as much. I also had some wonderful professors who extended their help to me. One of my professors actually volunteered to tutor at home so that I wouldn't receive a W on my school record. You never know where support will come from.

Please do not compare the way my meds have affected me as a forewarning to you. Yes, meds will have similiar side-effects for all of us but there are also the effects that only a few of us will experience. I was on a research drug that gave me a severe skin rash. The docs said something like " only 150 out of every 200, 000 react this way." I simply laughed cause I have usually been in that "only group"

You may experience the roller coaster of meds and possilbly you won't. I don't know. Your doctors don't know either. You are going to have to keep them aware of all the feelings you exerience due to meds. They need your imput to be able to give you the best possible treatment. Do not be shy about asking them questions. Patients continue to teach docs the pros and cons of treatments.

Are you keeping a journal of your seizure activity and how the meds make you feel? Your doc might have a journal for you. A simple notebook will do also. Is there an epilepsy foundation near you? Many foundations have support groups. Ask your doc if he knows of any.

Have you read my story? Left click my pic. That's me in the headwrap. The young lady beside me(dana) had a lobectomy prior to me. She was a great support then and continues to be today. We are like sisters. She's participates in many of the discussions.

Outside of ep, I love to read. I love the classic sounds of the 60s and 70s, jazz, football, and kids. I started working with kids sometime in the 80s when I was taking a med leave from college. I was suddenly hooked.

I have said much but believe me, I haven't said it all. I'll check with you soon. Right now I must check on the MLB scores.

Until next time,
angie
 
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hula_dancer73 responded:
hi twilight,

I tii have TLE as well only mine is on the left side

i have had it since I was 29 and now I am 39. However my neuro and my mother think I have had it all my life adn for some reason. He says it has been there all along thta everyone just chalked it up to a mental problem or a behaviour problem.

but the bizarre behaviour was really complex Partial szs. Was not a candiate for brain surgery so i had a device put in called a VNS or Vagus Nerve Stimulator.

later on that.

You just have to pull your self together and ask God to do teh rest.

You may end up riding the med merry-go round as Candi calls it.

I rode that stupid thing up till 2 years ago.

Now I take 3 mgs of Klonopin, 600 mgs of LAmcital, and 600 mgs of Vimpat.

everyone is different and you may end up responding t o the med. WHen I rode that merry go raound I too took Tegretol of EVERY kind there was except what you are on. but it made me so sick I we nt to a hospital so get toxied out. But like I said we are all different on here. Some people may have TLE but there is no two alike just 'cause of their type. No two sz is alike in that per son against somone else's szs.

you can e-mail at apache_spirit11@hotmail.com

Keep you chin up and you can go places and maybe far if they an get it under control.

my ep was dxd in April of 03.

hula_dancer

ps~ I live in HI on teh island on O'ahu.
 
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Twilight0925 replied to hula_dancer73's response:
Thanks Hula Dancer...wow...living on O'ahu...that must be beautiful!

I hear you on the mental health thing. I had a very abusive father who routinely beat me senseless...and when I hit my 30's I began to suffer from massive recalls, depression, anxiety, PTSD. Years of therapy and medication did nothing, and last year I ended up having 16 sessions of ECT (electro-convulsive therapy). It wiped out huge chunks of my memory, and the depression seemed to vanish, but now it seems that my deformed frontal lobes may have had something to do with this whole nightmare. I am so blessed that my beloved husband of 31 years and my two adult sons stood by my side through all of this,

I hope to learn as much as I can...but I must get this pain reigned in first!
Kathy
52 year old married mom of 2 in CT.
Dx with Temporal Lobe Epilepsy 9/24/2012 after years of complex partial seizures that went unnoticed by other doctors. Love my Neurologist!!!
 
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BlazingTiger responded:
Hi Twilight,
I know I am not the first. Any how Welcome to the group. My name is Jason. Yikes I know the 3 things you got going on there have got to be causing a lot of pain. I to have TLE Mine is the left side of the brain. If I do happen to miss something it is more than likely due to the fact that I am also legally blind. Slip & fall head trauma. I am on Tegratol XR. Well as was stated by others this was my turn on the med merry go round. I have been on several different seizure meds. Also like Angie I don't let having epilepsy rule me. I live my life on my terms. I at one time was on a bowling league & will be going back to it when my living arrangements are taken care of. A place of my own. I have had epilepsy since a teenager was dormant for about 10 years or so & the slip & fall accident brought it back.

Jason
 
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dancer86442 responded:
Hi Twilight,

Thank You for joining us. Our group is Small at this time. But, we are all 'seasoned' Warriors. We have fought for many yrs & some of us are Still fighting for More Knowledge & Ways to Spread our Knowledge & Awareness of Epilepsy.We have lots of Info in our Tips & Resources. Even more Links are posted under 'Weblinks for Epilepsy' in Popular Discussions. I'm encouraging you to learn more. You can clik on my pic or ID to read more about my Journey.

Med control & side effects vary w/ each individual. Keep in mind, you may have breakthru seizures while adjusting to your med. It takes 4-6 weeks for our meds to reach what is called 'therapeutic levels'. You can diminish/eliminate some side effects by eating Nutritiously! Angie suggested a Journal. clik See All under Tips & find Journal Info. A Journal is a Very Important Tool for You &/or your DRS.

Driving Privileges: A Very Necessary Precaution. Lots of 'newbies' hate it. But, I never thought twice about it. WHY? Cuz my Life & the Lives of others' depended on me to 'Be Smart & Stay Safe'. Once my seizures were under control for a YR, I finally felt safe enough to drive. But, even then, I would use back roads & never drive more than 20 miles from my House. Time & Patience! Depending on others' for rides is no fun. A Lot of people feel they are a 'burden' for asking for rides. What to do? Offer to help w/ yard work or Bake a casserole or desserts for the individual as a way of Thanking them. Guilt Trip is alleviated.

I'm Happy to hear your Hubby & sons' are sooo supportive. They will be a Great Asset as you continue your Journey w/ Epilepsy. Just be sure to Educate them, too. If they are interested in Learning More. If not, at least be sure they Know Proper seizure first aid!

There is a Lot of Info about Frontal Lobe Epilepsy. From what I understand: It can/will affect your memory, cognitive & other functions. So, Hopefully, you will have the seizures under control Quickly to prevent further Issues. BTW: I noted you said you were abused as a child. Does your DR know this? Past Abuse is Known to develop into Seizure activity, also.

Keep asking Questions. Keep us updated as to how you are doing. Know we care & will always be here for You & your family! Hugs!

Love Candi


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