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!
well when u find one can u let me know i live n salem where do u live
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 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).