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Newly Diagnosed and Trying to Process
Hi all,
My name is Mica -- I'm 30, originally from California but have been working overseas for the last eight years. Just a couple weeks ago, I was diagnosed with temporal lobe epilepsy (simple partial seizures) after having suffered from symptoms (most commonly brief episodes of deja vu, extreme fear, and loss of place) for the last three years (doctors previously attributed it to depression/anxiety).
While I am incredibly thankful to finally have some answers and have a name to put to all of this, I also just feel overwhelmed with the new diagnosis and what it all means. I am a teacher, and the stigma of "epilepsy" has already brought up questions of my abilities and capabilities of working with children. I would love to connect with others who were diagnosed later in life, or any educators out there who have found a way to appease others in the workplace.
Thank you!
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Hi Mica! Welcome to Connect!!
I was diagnosed with partial complex temporal lobe seizures in 1998. Daily migraine headaches. I was started on Tegretol over several years has seizures daily with an average of monthly tonic colonic seizures. I’ve been on Dilantin, Depakote, (Topamate, Topamax, zonagran all started in an ER after a huge Grand Mal but one or combination of all caused anaphylactic reaction. Definitely took me to close to death), Keppra, phenobarbital all without successful control. I was seeing my specialist at Mayo Clinic for unrelated issue when he notices I had developed horrible tremors that ended up being a side effect of the Depakote and Dilantin. He had me see Neurologist and they admitted that day to the epilepsy monitoring unit and stopped all my medication, with the hope to reproduce the seizures so we could find the right medication. After 6 days finally able to have some activities and started on Trileptal 900mg two times a day. I have only had 1 aura since then. So over 10 years of fantastic control. I have only had 1 migraine which I take Frova with absolutely no side effects and I can function normally with no impairment. My old medication made me sleep for days!!
I am forever grateful to all my Mayo Clinic Team!!
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3 ReactionsHello Knielle,
Sounds like your plate is full!! I to have had very similar symptoms in the past. Also have had 27 different EEG’s but not sure if your doctors explained an EEG is only as good as the very moment they are testing. It’s a snap shot in time when determining seizures. Not to dismiss their importantance because they are vital testing in showing long term effects or any changes as a result. If you are not having symptoms at that time it may not show anything or if they were mild enough to not cause damage. Curious if they have ever mentioned doing a sleep study? From my experience that was the next test they performed when my EEG where inconclusive. Maybe talk to your medical team to see if they think that would be reasonable,
Good luck
Dawn
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2 ReactionsHey Robertjr, actually I never stopped taking Dilantin they added Toprimate to the Dilantin I was taking. I could see in the near future that I may not be able to do my job which is not the way I want to go. I love my job lol but that's life. This is why I'm so curious about the Mayo clinic is that if there further ahead then the people I work with (my doctor) I would be very interested in going. I'm looking at atleast $10,000 to go the clinic so all the informationis being real helpful. I thank everyone for the information bring ptovided. We all know how much it really sucks having epilepsy or watching someone having a seizure. I also fought stage 2 testicular cancer 3 years ago. I saw a medicine man before I started chemotherapy and did some things with which I believed helped me alot. When doing chemotherapy and lack of eating I thought I was going to have numerous seizures. I didn't even have one. It's great that everyone shares the information provided. I know it's not easy to talk about sometimes. I thank you guys and ladies for that
I don't think a monitoring unit specifically but have done an EEG and MRI several times. They mentioned it may be from the area above one of my eyes. They never mentioned if surgery or anything can further heal this. Wondering if the Mayo clinic may see this and know bit more information than would be in my best interest to go there. 🙂
Sorry Coleen I forgot to mention that I am still on Dilantin but they added Toprimate. 🙁 I take Dilantin before bed switching from 300mg one day to 400mg the next back and forth as prescribed by my doctor
Hey Richard ,i also have end stage copd right now and about 4 yearsago i was ready for lung transpant,when they found lung cancer.With all the treatments its now in remission,cannot get lung transplant now but with all the cancer treatments until told its ok i never had a seizure or any trouble with my grand mal troubles.Like someone flipped the seizure switch off while my cancer problem worked on.Maybe someone helping me out.never know! At a younger age never knew about Mayo clinic ,im 63 now so im too old for testing ,wish i cou!d have done something years ago,ive learned how to get by but so much i cant do and wil neverdo.hope you do whats right for you.
Hi Dawn I did two sleep test tge first one should that on the right frontal lobe was having seizure activity which controls the left side of my body. The other sleep test didn't show up anything. I'm just tired of getting half answers and not knowing the full effect of everything. After the sleep test they made me do another sleep study because the sleep test showed some sleep apnea, but since the two hurricanes I still don't have electricity so what he is recommending I can't do which is sleep with a mask and machine. But now I've been diagnosed with nerve damage in my legs it just keep getting better and better....
Hi Colleen I have never been to a seizure clinic or anything like that, and right now I live in the Virgin Islands and since the two category 5 hurricanes that hit us a lot of this have been destroyed including the Hospital. I don't know if you might know where a seizure clinic might be located or where I can be able to research information about a seizure clinic.
Actually Dawn no one ever told me that the EEG might not show anything. I work as a CNA and I have a sister that is an RN and I've been talking to her and she was the one that tod me that not everything shows up on the EEG. Also she and another person that I recently met did tell me about keeping a journal. But I've noticed that light, whether it is the sun light, flashlight, car light it triggers my facial spasms a lot, when I get the funny feelings in my head U tend to groan, and my upper back hurts for awhile afterwards.
Wow, @specialkt you sure are dealing with a lot - and still without electricity. When you are in a position to be able to try sleeping with mask and machine, you might be interested in reading other people's tips in the Sleep Health group on Connect: https://connect.mayoclinic.org/group/sleep-health/
Good luck with keeping a journal. It sounds like you're already discovering triggers. What cause the nerve damage in your legs?