← Return to Newly Diagnosed and Trying to Process

Discussion
Mica (@micakath)

Newly Diagnosed and Trying to Process

Epilepsy & Seizures | Last Active: Nov 14, 2017 | Replies (31)

Comment receiving replies
@richardlsolomon

Hey Mica
Wondering how everything went at the Mayo clinic. I’m really interested in heading there and from Canada. I been dealing with seizures for 15 years and feel like finding better information about what’s going on. Im 37 years old and have 4 children. I’m also worried lately about long term. I currently fight forest fires.and don’t want to have to quit my line of work cause I love it.
Thanks for input and stick to you work.

Jump to this post


Replies to "Hey Mica Wondering how everything went at the Mayo clinic. I'm really interested in heading there..."

Welcome @richardlsolomon. I have so many questions. What type of seizures do you have? If you been managing seizures and work for the past 15 years, what concerns you now? Have things changed?

I’ve had all different types of seizures. I actually have a video where I saw myself go through on this year while on the ice refereeing hockey. I’m worried there going to get worse as I started new meds called Toprimate. I’ve been in Dilantin since I’ve started. I’m not able to see a neurologist often here. I’m hoping to gather more information and want to see if Mayo can look further as what could be causing this before I get there.

Hi Richard,
That must be worrisome to not know if they seizures might get worse or more frequent. I’m tagging @dawn_giacabazi and @stayfree who have been to the Seizure clinic at Mayo Clinic. They can share a bit more about the process.

I would also encourage you to take a look at this conversation, “New to Epilepsy!!” https://connect.mayoclinic.org/discussion/new-to-epilepsy/, where @debburrington @FaceNu have shared their concerns about Topamax (Topiramate).

Richard, may I ask why you switched medications? Was Dilantin not working anymore?

I’m still on Dilantin but my neurologist suggested to also try Toprimate with it. He lives about 600kms away and see him once a year. If this is causing more seizures I don’t think it’s a medication that I can just stop taking. I believe one doctor mention that my seizures comes from an area above my eye. I’m curious if maybe a higher place like this clinic can find a better solution to eliminate the seizures.

Hello Richard,im kinda curious why you stopped taking dilantin ,was on dilantin for about 30 years,have grand mals,then started toxic levels from medicine then started getting more and more seizures again.Finally switched to keppra and vimpat.Richard dont what type of problems you have but in all my years ,over 55of seizuresnever really had any special patern.unfortunatly ended up depending on the medicine and hope it worked for awhile.my best meds was the dilantin until it started failing.I learned to be careful on certain things,ont go in water careful around toves etc.id never do your job hope you find a med that will help you have better control of your problems.

@richardlsolomon, you can read more about the Seizure Clinic at Mayo here: https://www.mayoclinic.org/diseases-conditions/seizure/care-at-mayo-clinic/mac-20365786

If you have specific questions about what it is like, @dawn_giacabazi may be able to share her experience at Mayo Clinic with you. Have you been observed at an epilepsy monitoring unit?

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!!

Hey 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 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.