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Mica
@micakath

Posts: 6
Joined: Aug 27, 2017

Newly Diagnosed and Trying to Process

Posted by @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!

REPLY

Mica, I was diagnosed with exactly the same thing; the exception being I also had grand male seizures. I was 25 at that time. I am also a teacher, elementary. I unfortunately had a seizure in my first grade classroom one morning. This was all in 1977. I was put on a medical leave.
I was also labeled with anxiety because my partial seizures had the same symptoms and doctors were quick to want to have an answer, even if it wasn’t the correct one. Mayo Clinic quickly changed my medical situation and my teacher’s union saved my job. Today there are discrimination laws and I believe less discrimination. You mention you are oversea so I can’t speak to that.
At first I had the “stigma” problem, especially with school officials. It was hard and took a couple of assignment changes to fix this. I then actually had parents tell me they had requested me for their child because I had a history of seizures. Their children had seizures and they thought I would be best for their child because I had a better understanding of this than anyone else. I think this could be true for any child with any medical issue to have a teacher who can personally relate to medical issues in their daily life.
Can you search Google for “informational materials on seizures and your child’s teacher”? Then share that with your administration. Ask them if it would be ok for you to share that with any parent if they should question anything, also, give your administration permission to do the same. If you have any notes, cards, etc. from families thanking you and showing their appreciation for your work bring that up also.
This reply is way long but this all helped me, along with good friends and fellow teachers. I know this is a difficult time and situation; it won’t change overnight. Be strong and keep your head up high. This too shall pass.
Keep in contact.

Mica,bonnie,read your comments.I was never a teacher,but had grand mals since i was 5.i wish i had a teacher withepilepsy,Back then feltso much like i was only one with seizures.Back in 70s lost many jobs after a seizure,you could put seizures on application but most dont realize how bad one can be,then id get the gee we are sorry but you cant work here,even union places.Finally found company that accepted me would allow me days off torecover from grandmal and iagreed that i could not bid on certain jobs endedup there30 years,had allkinds ofsay and made good moneyglt a house and had3kids and 6 grandkids.If given a chance epilepsy shouldntmatter,but ifnot for the co pany i worked for ,who knows,right now iwas puton disability because of copd,you figure you have medicalthing beat then payback,atleast mykids allgrown up and have a greatwife..doctorput meon keppra now ,seizures beencomming back and lungs areamess becausr of copd.Had cancer of lungsin2014 in remission,now schedualed a mri of my head to test for cancer.At leastihave awife ad family ,whenyoung didnt think possible..

Hi Mica,
My name is Amanda, I am 34 years old and had my first seizure in March and have had a few since then. I was diagnosed with Epilepsy and my doctors are currently trying to figure out the reason I am having these seizures (as of now may be auto-immune but running more tests to eliminate other things). I too have been overwhelmed with this diagnosis as I have been healthy up to this point in my life. I am not a teacher but I am a vet tech at an animal hospital in MN, so far they have been really supportive. As of now there are a couple rotations that I am unable to work in but things have worked out. It’s just a waiting game for me while I have more tests done. I joined this group because I didnt know anyone else with this condition. It’s nice to know we are not alone. 🙂

Hi @micakath, I wanted to check in with you and see how you are doing. Amanda, Robert and Bonnie shared some useful stories about advocating in the workplace and stamping out the stigma of the diagnosis of epilepsy. You mentioned that you live and work overseas. Do you think the stigma is strong in the country where you work? How have you chosen to approach the issue with your employer and with the parents?

Mica hope your doing ok.Even now it kinda bugs me the way some people react to someone with epilpsy.Hope you stick with your job,like i said before a lot of young people,like me when i was young,would value being able to communicate with someone with epilepsy.As ayoung student feeling alone was one of the hardest parts about going to school as astudent.

@bonnieh218

Mica, I was diagnosed with exactly the same thing; the exception being I also had grand male seizures. I was 25 at that time. I am also a teacher, elementary. I unfortunately had a seizure in my first grade classroom one morning. This was all in 1977. I was put on a medical leave.
I was also labeled with anxiety because my partial seizures had the same symptoms and doctors were quick to want to have an answer, even if it wasn’t the correct one. Mayo Clinic quickly changed my medical situation and my teacher’s union saved my job. Today there are discrimination laws and I believe less discrimination. You mention you are oversea so I can’t speak to that.
At first I had the “stigma” problem, especially with school officials. It was hard and took a couple of assignment changes to fix this. I then actually had parents tell me they had requested me for their child because I had a history of seizures. Their children had seizures and they thought I would be best for their child because I had a better understanding of this than anyone else. I think this could be true for any child with any medical issue to have a teacher who can personally relate to medical issues in their daily life.
Can you search Google for “informational materials on seizures and your child’s teacher”? Then share that with your administration. Ask them if it would be ok for you to share that with any parent if they should question anything, also, give your administration permission to do the same. If you have any notes, cards, etc. from families thanking you and showing their appreciation for your work bring that up also.
This reply is way long but this all helped me, along with good friends and fellow teachers. I know this is a difficult time and situation; it won’t change overnight. Be strong and keep your head up high. This too shall pass.
Keep in contact.

Jump to this post

Thank you so much for your story and your advice, Bonnie. I really, truly appreciate it. Thankfully, things with the school have been okay and we’re working through this new information together. Now just trying to take things as they come in terms of dealing with it all. Hope you’re doing well.

@robertjr

Mica,bonnie,read your comments.I was never a teacher,but had grand mals since i was 5.i wish i had a teacher withepilepsy,Back then feltso much like i was only one with seizures.Back in 70s lost many jobs after a seizure,you could put seizures on application but most dont realize how bad one can be,then id get the gee we are sorry but you cant work here,even union places.Finally found company that accepted me would allow me days off torecover from grandmal and iagreed that i could not bid on certain jobs endedup there30 years,had allkinds ofsay and made good moneyglt a house and had3kids and 6 grandkids.If given a chance epilepsy shouldntmatter,but ifnot for the co pany i worked for ,who knows,right now iwas puton disability because of copd,you figure you have medicalthing beat then payback,atleast mykids allgrown up and have a greatwife..doctorput meon keppra now ,seizures beencomming back and lungs areamess becausr of copd.Had cancer of lungsin2014 in remission,now schedualed a mri of my head to test for cancer.At leastihave awife ad family ,whenyoung didnt think possible..

Jump to this post

Thank you for sharing, Robert. I’ve been getting overwhelmed recently by thinking about how this is going to effect my life longterm, and it’s refreshing to hear that moving forward is definitely possible. I’ll be keeping my fingers crossed that your MRI comes back clean and you stay well.

@ahernandez

Hi Mica,
My name is Amanda, I am 34 years old and had my first seizure in March and have had a few since then. I was diagnosed with Epilepsy and my doctors are currently trying to figure out the reason I am having these seizures (as of now may be auto-immune but running more tests to eliminate other things). I too have been overwhelmed with this diagnosis as I have been healthy up to this point in my life. I am not a teacher but I am a vet tech at an animal hospital in MN, so far they have been really supportive. As of now there are a couple rotations that I am unable to work in but things have worked out. It’s just a waiting game for me while I have more tests done. I joined this group because I didnt know anyone else with this condition. It’s nice to know we are not alone. 🙂

Jump to this post

Hi Amanda. I’m really glad to hear things with your work are going well and they’re being supportive. (My sister is also a vet, so I have heard stories about how stressful that life can be!) I definitely understand the frustration of the waiting and not having answers — that’s what I’m currently going through. Looking forward to talking to you more about all this.

@colleenyoung

Hi @micakath, I wanted to check in with you and see how you are doing. Amanda, Robert and Bonnie shared some useful stories about advocating in the workplace and stamping out the stigma of the diagnosis of epilepsy. You mentioned that you live and work overseas. Do you think the stigma is strong in the country where you work? How have you chosen to approach the issue with your employer and with the parents?

Jump to this post

Thank you so much for following up, Colleen. Thankfully, after having several conversations with my colleagues and admin, things are seemingly in a good place. I’ve even been able to open up about it to a few of my older students who are having health issues of their own, so it’s been able to bring me closer to my work community in some ways.

I live in Ukraine, where there is maybe a bit of a stigma, but for the most part, the host country nationals that I live and work with have been very supportive. The only difficulty now about living here is that the care is extremely limited, so I’m struggling to really move forward with anything.

@colleenyoung

Hi @micakath, I wanted to check in with you and see how you are doing. Amanda, Robert and Bonnie shared some useful stories about advocating in the workplace and stamping out the stigma of the diagnosis of epilepsy. You mentioned that you live and work overseas. Do you think the stigma is strong in the country where you work? How have you chosen to approach the issue with your employer and with the parents?

Jump to this post

So good to hear from you Mica. What a relief that your colleagues and employer were open-minded. I’m not surprised that opening up to a few students has benefited your relationships in your work community. Good for you for having the courage to be honest.

@ahernandez

Hi Mica,
My name is Amanda, I am 34 years old and had my first seizure in March and have had a few since then. I was diagnosed with Epilepsy and my doctors are currently trying to figure out the reason I am having these seizures (as of now may be auto-immune but running more tests to eliminate other things). I too have been overwhelmed with this diagnosis as I have been healthy up to this point in my life. I am not a teacher but I am a vet tech at an animal hospital in MN, so far they have been really supportive. As of now there are a couple rotations that I am unable to work in but things have worked out. It’s just a waiting game for me while I have more tests done. I joined this group because I didnt know anyone else with this condition. It’s nice to know we are not alone. 🙂

Jump to this post

So nice to hear from you Amanda. I’ve sent you a private message, and look forward to connecting with you.

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.

@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

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?

@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’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.

@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 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?

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