Epilepsy Foundation

Hi my name is Pam, I'm hoping to talk with someone that has experienced what I am experiencing.  I'm terrified!  The Dr. can't find any reason for my seizures.  The medications makes me sick (I've tried Carbatrol, Dilantin and Trileptal).  I have a prescription for Keppra, but now I don't want to even take it.  I've never met anyone else with seizures.  I'm 47 years old, I had my first seizure last October, 2009.  I didn't have another until 3 months later in January, when I had two Grand Mal seizures in one night, two trips to the hospital, etc.  And then one month later in February (last week).  I'd just like to know how people cope.  How do I get more information?  I'd like to find a local support group, but I haven't found one in Oregon yet. 

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Doctors often don't know what triggers seizures. That's okay! I was 27 and pregnant when I had my first seizure. Four children and 10 years later, I'm still having seizures, still experimenting with what works for me and doesn't work. I take Tegretol XR (extended release) but it took 3 or 4 months for my body to adjust to the medication. Once it did though, I eventually had a good three year period with no seizures. (Still trying to attain that golden period!) Hang in there! It's tough living with epilepsy but half the battle is getting through the acceptance stage of the diagnosis (at least it was for me). This web site is the best place I've found for reliable information (and support from people who understand the issues you're facing!) Also I tried Keppra after multiple grand mals at the end of my last pregnancy, I was on it for a year, I found it made me depressed and angry but everyone responds differently to different meds. Good luck!

Angela
Thanks for responding. It helps me to hear your story. I'm sorry you have seizures too, they're not much fun! I've tried three different medications, all of them had such horrible side effects that my doctor and I are still searching. I like your positive attitude. I'm having a hard time finding a positive attitude myself. Thanks again, I do appreciate it very much. Anytime you feel like writing, please do.

Pam

Angela said:
Doctors often don't know what triggers seizures. That's okay! I was 27 and pregnant when I had my first seizure. Four children and 10 years later, I'm still having seizures, still experimenting with what works for me and doesn't work. I take Tegretol XR (extended release) but it took 3 or 4 months for my body to adjust to the medication. Once it did though, I eventually had a good three year period with no seizures. (Still trying to attain that golden period!) Hang in there! It's tough living with epilepsy but half the battle is getting through the acceptance stage of the diagnosis (at least it was for me). This web site is the best place I've found for reliable information (and support from people who understand the issues you're facing!) Also I tried Keppra after multiple grand mals at the end of my last pregnancy, I was on it for a year, I found it made me depressed and angry but everyone responds differently to different meds. Good luck!

Angela
Hi Pam and welcome!
I am sorry to hear of your seizures.

What tests have you had done?

I myself had my first of 2 seperate clusters of TC's or grand mals, each cluster of 3 in 8/2009 in my sleep, just before my 36th bday. I am a nurse and was working 18+ hr shifts with a 3 hr round trip drive, I carried my own pt load and supervised the facility...so drank gallons of coffee and energy drinks and very sleep deprived. ER Dr thought movement disorder sent into seizure activity via the dose of Mirapex I was on.

I have been to several neuros, first one started me on Keppra XR, ER DR started me on Klonopin 2 mg. Suddenly seizures hitting every few days and at all hours....by the time I had a 72 hr ambulatory EEG done, I was on max dose of Keppra XR and Klonopin...so no surprise no seizures caught...but Neuro still insisted it was Adult Onset E since I had more than 2 unprovoked seizures. I did talk her into a sleep study, showed I never hit REM and 25 microarousals per hours, those are under 5 seconds and generally you don't realize you awaken...MAJOR SEIZURE TRIGGER!

I love my family Dr, John...since MRI, CT Scan, and EEG normal he was comfortable taking over my care, he added Dilantin XR 100 mg TID, swithced me to generic Keppra immideate release (much cheaper) 1500 mg BID, and Klonopin stayed at 2 mg at night. I had a doozy alone and was out for 4 hrs, failed simple Neuro tests when I saw John, he admitted it was out of his scope and I had to involve a Neuro, referred me to one he went to school with.

2nd Neuro, mmmm hit and miss, but I flat told him I was not comfortable with the diagnosis of Adult onset E r/t ER diagnosis, worsening of "attacks" since start of AED's..........so he stopped Dilantin, doubled the Klonopin and had a 20 minute EEG done at the hospital. On all my meds it showed "Large spikes to the L temporal lobe and smaller/large (?) spikes to frontal lobe".....Dr M was shocked anything showed, and at that time said it was most likely starting in L temporal lobe and spreading to 2ndary generalized TC's...but that he was really only conviced about 50-60% that they were true epileptic seizures....to be sure I needed to come off all meds and have the VEEG done, so he referred me to the Epilepsy Center in the Neuroscinece Institute of KY University.........

SO..I actually consulted with the Director....nightmare and he's a jerk......and convinced that I need to see a therapist to deal with the fact that I have Adult onset E.......excuse me? When I asked about the ER Diagnosis, all Neuros disagree, tell me to get over it! I go 4/12/2010 for inpt VEEG 3-5 days, but DR M thinks off all meds I will only need to stay 24 -48 hours. The Director or Eologist didn't want to change meds, got very frustrated with me when I couldn't pass memory or coordination tests, wouldn't try different meds since I would have to tapper off for the VEEG..yeah in 3 months so 12 more clusters of TC's....

Sorry so long...so suddenly I am sleep walking, talking, writing, sitting up in bed and staring off or talking gibberish and the tonic phases of my TC's are "more violent" according to hubby..I still cluster and now don't recover between clusters...goes on for 10-20 minutes....since I didn't like eologist at all, set up appt with Neuro, Dr M. He is usually very supportive and takes all the time you need, even takes my lists of questions and goes down them one by one. Now, during 20 minute EEG my L side went numb from head to toe...scared me to death, since stop of Dilantin...yeah on, off, on, now off again....sometimes I hear things...bells..etc, Dr m said this may happen, that I may even see dead relatives etc....anyway, so f/u appt with Dr M after seeing Eologist.........again ER Diagnosis discussed and thrown out, exorcism mentioned jokingly, and then suddenly Dr M mentions the report from my consult with the UK Eologist and suddenly he thinks I need to see a therapist to help me accept the facts too........WHAT FACTS??? The VEEG not even done yet. Soooo keep Keppra, he wants to switch to Lamictal post VEEG as now so close would not be tappered to full dose before tappering down and off meds for VEEG, doubles the Requip (for leg cramps) and switches me from Klonopin 4 mg to Valium 10 mg.......I voiced my concern at the Valium and was hushed. I told Dr M that the Eologist, his buddy was a jacka##....all I heard was the excuse of how busy he was...yeah, he left the room 3 times on me...anyway told Dr M I was not going to continue under his friends care after VEEG, so that Dr M was stuck with me...haven't mentioned Mayo to him yet, because, honestly he already bashed them...said they would tell me the same thing, its Adult onset E, get over it and take these pills rest of your life....

Always have had these crazy leg cramps, usually at night during sleep, wake up with toes almost bent up touching top of feet, HURTS like crazy and works up calves to thighs, last 10-20 minutes....I tried the Mirapex again per Dr M...went crazy before he finally admitted I was the 1 in 100 who would react that way, switched to Requip...these meds are dopamine agonists..so they work on brain signals too, the are anti parkinson drugs...

Results....a mess.........Valium has me wacked, I take it at 8pm and now can't sleep, sleep at about 2 am and up at 7am....Legs cramping while awake, knock me to my butt, even occur while I am standing....now they are shorter, just a few minutes but then they go numb....

Point........your not alone! Research, research don't stop and BE YOUR OWN ADVOCATE!!!

I am to call DR M on Friday for update with these meds....He already said if they are not working he will just increase them.........NOT....I AM DRAWING THE LINE.........staying where we are since in a month I will start to tapper down and come off for VEEG, then I am gathering all my records and hopefully will have my Mayo Clinic appt in Rochester, Minesotta set up by then...............YEAH, I am going that far away. They promise to look at all records and possibilities, will start with E if not then look into ER Diagnosis of movement disorder.

This site has kept me going, along with family and friends. My blessings are to numerous to count, my folks retired and moved into our walk out basement so I am never alone, I have a bed alarm and a life alert....at least if I come to alone with any blood I can push that button and it sets off an alarm at the base in the basement and calls hubbby's cell phone.

We are here for you Pam, its a rough long journey, usually and no ones seizures are the same and everyone reacts differently to the same meds. Keppra both name brand and generic made me a ragging B*&&%..........but after a few months or maybe the other meds, it mellowed out.

Hang in there...and Angela is right, most times even the best specialists don't know and you may see alot of the GOD SYNDROME....but stick to your guns!

Sorry so long...I do have to warn you, I have "typorhhea"...LOL, you need to do as much of that as you can...LOL

Please, keep us updated and do take care
Love and Light,
Tammy in KY....drop a line anytime you need anything, even to vent!
well when u find one can u let me know i live n salem where do u live
Eugene/Springfield area, the closest I've found meets every other month somewhere in Portland. I haven't been to it though. We found it through this website.

Marie Kirsch said:
well when u find one can u let me know i live n salem where do u live
Thank you so much for writing. Sorry I haven't written back until now. I've been having major side effects from generic Keppra, and have chosen to stop all medications. The side effects keep me from having any kind of a life. I have a couple of doctor appointments this week. We'll see. A new neurologist might have some better ideas. I've had an MRI, a CT scan two EEG's and some blood tests. Can't find anything that caused them. I had a lot of stress and drank a lot of coffee. I've had 4 seizures, but don't have an aura. I can't drive, can't work. I lost my job because of seizures, I had the first one at work, I was a cook at a community college for a long time, 10 years or so. There are too many dangerous things in the kitchen and I think that's why they don't want me back. But that just added to my stress. On top of it all, I've had to go on public assistance because I didn't have insurance. I'm fighting workman's comp for damage done because I fell on my face and broke my teeth. Thanks for letting me vent! I'm just trying to figure out what I'm supposed to do next. It seems like you have a pretty good attitude.

Tammy Johnson said:
Hi Pam and welcome!
I am sorry to hear of your seizures.

What tests have you had done?

I myself had my first of 2 seperate clusters of TC's or grand mals, each cluster of 3 in 8/2009 in my sleep, just before my 36th bday. I am a nurse and was working 18+ hr shifts with a 3 hr round trip drive, I carried my own pt load and supervised the facility...so drank gallons of coffee and energy drinks and very sleep deprived. ER Dr thought movement disorder sent into seizure activity via the dose of Mirapex I was on.

I have been to several neuros, first one started me on Keppra XR, ER DR started me on Klonopin 2 mg. Suddenly seizures hitting every few days and at all hours....by the time I had a 72 hr ambulatory EEG done, I was on max dose of Keppra XR and Klonopin...so no surprise no seizures caught...but Neuro still insisted it was Adult Onset E since I had more than 2 unprovoked seizures. I did talk her into a sleep study, showed I never hit REM and 25 microarousals per hours, those are under 5 seconds and generally you don't realize you awaken...MAJOR SEIZURE TRIGGER!

I love my family Dr, John...since MRI, CT Scan, and EEG normal he was comfortable taking over my care, he added Dilantin XR 100 mg TID, swithced me to generic Keppra immideate release (much cheaper) 1500 mg BID, and Klonopin stayed at 2 mg at night. I had a doozy alone and was out for 4 hrs, failed simple Neuro tests when I saw John, he admitted it was out of his scope and I had to involve a Neuro, referred me to one he went to school with.

2nd Neuro, mmmm hit and miss, but I flat told him I was not comfortable with the diagnosis of Adult onset E r/t ER diagnosis, worsening of "attacks" since start of AED's..........so he stopped Dilantin, doubled the Klonopin and had a 20 minute EEG done at the hospital. On all my meds it showed "Large spikes to the L temporal lobe and smaller/large (?) spikes to frontal lobe".....Dr M was shocked anything showed, and at that time said it was most likely starting in L temporal lobe and spreading to 2ndary generalized TC's...but that he was really only conviced about 50-60% that they were true epileptic seizures....to be sure I needed to come off all meds and have the VEEG done, so he referred me to the Epilepsy Center in the Neuroscinece Institute of KY University.........

SO..I actually consulted with the Director....nightmare and he's a jerk......and convinced that I need to see a therapist to deal with the fact that I have Adult onset E.......excuse me? When I asked about the ER Diagnosis, all Neuros disagree, tell me to get over it! I go 4/12/2010 for inpt VEEG 3-5 days, but DR M thinks off all meds I will only need to stay 24 -48 hours. The Director or Eologist didn't want to change meds, got very frustrated with me when I couldn't pass memory or coordination tests, wouldn't try different meds since I would have to tapper off for the VEEG..yeah in 3 months so 12 more clusters of TC's....

Sorry so long...so suddenly I am sleep walking, talking, writing, sitting up in bed and staring off or talking gibberish and the tonic phases of my TC's are "more violent" according to hubby..I still cluster and now don't recover between clusters...goes on for 10-20 minutes....since I didn't like eologist at all, set up appt with Neuro, Dr M. He is usually very supportive and takes all the time you need, even takes my lists of questions and goes down them one by one. Now, during 20 minute EEG my L side went numb from head to toe...scared me to death, since stop of Dilantin...yeah on, off, on, now off again....sometimes I hear things...bells..etc, Dr m said this may happen, that I may even see dead relatives etc....anyway, so f/u appt with Dr M after seeing Eologist.........again ER Diagnosis discussed and thrown out, exorcism mentioned jokingly, and then suddenly Dr M mentions the report from my consult with the UK Eologist and suddenly he thinks I need to see a therapist to help me accept the facts too........WHAT FACTS??? The VEEG not even done yet. Soooo keep Keppra, he wants to switch to Lamictal post VEEG as now so close would not be tappered to full dose before tappering down and off meds for VEEG, doubles the Requip (for leg cramps) and switches me from Klonopin 4 mg to Valium 10 mg.......I voiced my concern at the Valium and was hushed. I told Dr M that the Eologist, his buddy was a jacka##....all I heard was the excuse of how busy he was...yeah, he left the room 3 times on me...anyway told Dr M I was not going to continue under his friends care after VEEG, so that Dr M was stuck with me...haven't mentioned Mayo to him yet, because, honestly he already bashed them...said they would tell me the same thing, its Adult onset E, get over it and take these pills rest of your life....

Always have had these crazy leg cramps, usually at night during sleep, wake up with toes almost bent up touching top of feet, HURTS like crazy and works up calves to thighs, last 10-20 minutes....I tried the Mirapex again per Dr M...went crazy before he finally admitted I was the 1 in 100 who would react that way, switched to Requip...these meds are dopamine agonists..so they work on brain signals too, the are anti parkinson drugs...

Results....a mess.........Valium has me wacked, I take it at 8pm and now can't sleep, sleep at about 2 am and up at 7am....Legs cramping while awake, knock me to my butt, even occur while I am standing....now they are shorter, just a few minutes but then they go numb....

Point........your not alone! Research, research don't stop and BE YOUR OWN ADVOCATE!!!

I am to call DR M on Friday for update with these meds....He already said if they are not working he will just increase them.........NOT....I AM DRAWING THE LINE.........staying where we are since in a month I will start to tapper down and come off for VEEG, then I am gathering all my records and hopefully will have my Mayo Clinic appt in Rochester, Minesotta set up by then...............YEAH, I am going that far away. They promise to look at all records and possibilities, will start with E if not then look into ER Diagnosis of movement disorder.

This site has kept me going, along with family and friends. My blessings are to numerous to count, my folks retired and moved into our walk out basement so I am never alone, I have a bed alarm and a life alert....at least if I come to alone with any blood I can push that button and it sets off an alarm at the base in the basement and calls hubbby's cell phone.

We are here for you Pam, its a rough long journey, usually and no ones seizures are the same and everyone reacts differently to the same meds. Keppra both name brand and generic made me a ragging B*&&%..........but after a few months or maybe the other meds, it mellowed out.

Hang in there...and Angela is right, most times even the best specialists don't know and you may see alot of the GOD SYNDROME....but stick to your guns!

Sorry so long...I do have to warn you, I have "typorhhea"...LOL, you need to do as much of that as you can...LOL

Please, keep us updated and do take care
Love and Light,
Tammy in KY....drop a line anytime you need anything, even to vent!
I'm so glad I found this site... it's so refreshing to know that there really is someone else in the world going through the same thing I'm going through- 9 different meds and them not working or them working while you're pregnant and suddenly not working after you have the baby because your body chemistry changed. Regular meds like tylenol and advil no longer being effective because of your body's chemistry. Or the next day they put you to sleep. My dr. doesn't know what triggers my seizures either and the frustrating part is I have every kind so we've been through a ton of meds trying to find the right one or mix to get them under control. I used to just think I was crazy when I would wake up and not know where I was literally in a different room than when I went to sleep or panic, especially when I was driving when I didn't know where I was, but now that I know what's wrong with me and that those are signs of a seizure happening I'm don't think I'm crazy or panic. I just wish people around me would really understand... the first thing everyone always says is Well call me if you're ever in trouble... I don't think I have to tell anyone on this site how frustrating and hard it can be to try to explain to someone that I can't call you or anyone else when I'm in trouble...
We are in the same boat - I am terrified - just diagnosed and my world is upside down. I see it has been a couple of months since your post - have things settled down? I hope so! I am 50 and was just diagnosed - seems like we are a minority (meaning being "older" and new to all of this).
Hi Pam,
Welcome! For possible support groups in your area, please contact The Epilepsy Foundation Northwest at (800) 752-3509. Feel free to call The Epilepsy Resource Center at (800) 332-1000 to get written information about epilepsy.

Mary Ann Thornton
The Epilepsy Resource Center
The Epilepsy Foundation

Please check out these Foundation programs:
Take Charge: http://www.takechargeteens.org/
Go EYC: http://www.goeyc.org/
School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120
Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm
Many people do not have a reason for their seizures. They are called idiopathic. That does NOT mean you are an idiot. It just means there is no known reason for your seizures. I too have been through many different types of meds and none of them work 100%. It is very frustrating. All you can do is just keep trying until you find a med that works best for you. Most people do not understand epilepsy. But it has come out of the closet some in the past few years. Hopefully, one day people will understand what epilepsy is and how it works.
Stinking meds make me sick too they seem like a neuro toxin when i pop them in my mouth . I'm trying to be settled in my mind this is how life is now but it would be easier if the meds would be Easier to take . I been been on a few now they thinking of combo mixes which not excite me one bit :(  I await the day i feel some what normal ....... not pukey spaced out , dizzy , rashes, strange blood work,.....

Hi! 

I'm here with you. Just diagnosed although I have been having seizure sence Oct 09.. have had 9 seizure but just went to the Nuro yesterday.. Hubby's a retired Paramedic and all my seizure have been mild compaired to some of y'alls  Not liking what I'm hearing.. 



Cathlyn Haigh said:

We are in the same boat - I am terrified - just diagnosed and my world is upside down. I see it has been a couple of months since your post - have things settled down? I hope so! I am 50 and was just diagnosed - seems like we are a minority (meaning being "older" and new to all of this).

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