Newly Diagnosed and Trying to Process

Posted by Mica @micakath, Aug 27, 2017

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!

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

REPLY
@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.

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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.

REPLY
@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

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.

REPLY
@specialkt

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

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Welcome to Connect, @specialkt. That’s quite an episode that you had in July. It sounds like you are still on the journey of figuring out the diagnosis and how to treat it. Have you been to an seizure clinic or a center that specializes in seizure monitoring and diagnosing?

REPLY
@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

@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?

REPLY
@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

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!!

REPLY
@specialkt

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

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Hello 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

REPLY
@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

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

REPLY
@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

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. 🙂

REPLY
@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

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

REPLY
@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

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.

REPLY
@specialkt

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

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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….

REPLY
@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

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.

REPLY
@specialkt

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

Jump to this post

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.

REPLY
@specialkt

Hi Mica I am Knielle I am a 43 year old that since July has been diagnosed with epileptic seizures which I have never had before. Back in December my dad passed away and in February my big sis died at the age of 44 from breast and bone cancer. I have a history of FSGS which is scarring of the kidneys which I have been dealing with since 2006 and I’ve been doing pretty well. I am just so overwhelmed. I guess that you can say that I might have been having some symptoms i guess i don’t know. I know that for a couple of months I have been getting tingling, numbness in my face and my lips but it didn’t happen everyday. Then one day to work my face started twitching but no one could see it, then it went to me smiling like i had botox done by the time I left work that evening my spasms got severly worse now my whole face was twitching, lips fluttering and by the time i almost reached home my eyes were fluttering uncontrolably and I also started stuttering which i have never done before. I had a friend drive me to the ER and they are asking me if i had a stroke..lol… eyes still fluttering, speech crazy still stuttering. When the doctor finally came in they said that there is nothing that they can do for me and referred me to a neurologist. I went the neurologist put me on meds and bed rest he said it was stress related. Did EEG that didn’t show anything, symptoms continued went back to the ER I got chewed out and told that it wasn’t seizures. Went back to the doctor he did another EEG it sill didn’t show anything but i kept complaining so he did a 24 hour sleep EEG which in fact did show some activity on my right frontal lobe. He put me on more meds, bed rest, no driving, no swimming by myself etc…. I really don’t get the oras I get a funny feeling in my head right before my symptoms also I get these weird back pain but once im in the sun, sunlight, bright light my facial apasms go crazy to the point that my lips start going crazy then i sometimes get the jerks or my head starts doing uncontrollable stuff. I have been home since the middle of July and I haven’t veen back to work. I am afraid that I will not be able to work again especially since I work in the clinic as a CNA, my family is scared to leave me alone and I’m tired of not knowing what is causing the seizures. Was supposed to have somemore testing but since the two cat 5 hurricanes i haven’t been able to get anything else done. I am so confused, stressed and don’t know what to expect. Also confused and now it seems that my arm and legs nerve are shot so I am also having issues with that…

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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?

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