Epilepsy Community

Hello JudiSue,

I'm glad you found us, too. Welcome to Epland.

How Long have you had seizures? Are you being treated? Treatment not working? Share your story, so, we can Understand Why you feel the Way you do. And help you w/ Tips for Coping. Plus, ya Know someone is Listening & it Does help to write about what's causing your frustrations. Frightened, Depressed is 'normal' to Newbies. Are you new to EP/seizures?

Waiting to hear from You! HUGS!

Love Candi

hi,

my name is Nancy and I have EP and am from Maui, Hawii.

I too ahe szs and am not knew to teh site but knew to the way they are now doing things.

I have complex Partial szs.

infact I had one last night that went into a Grand Mal.

LIke Candi said we are glad you founf us and hope youge t the suport you need.

I can tell you a lillte about me but it will NOT be long.

I had a car acident in dec of 02 and hit a huge pine tree head on and ripped the seat belt off my shoulder broke collar bone, my ankle and had whiplash. this is when I lived in ohio for a short time. my first szs was 8 moths later the night be fore my colleg graduation.

I was dxd in 03 wwiht Left Tempotal Lobe Epilepsy or TLE and have played med merry go round and haven not yet founf the thigh combo I am on 4 drugs and have a Vagus NErve stimulator.

Iam 37 almost 38. married with one kid one died about a year ago ffrom epilepsy she was 13. theone left is 15 and we have been married for 17 years.

currently I take VImpat, Lamictal, Klonopin.

well that is enought blathering.

see you around in the sight.

phoenix_sun

Hi JudieSue

I had my first seizure March 27, 1975. It was a few weeks shy of turning 14. I was first dx with petit mal(simple szs) but ltr the drs changed their dx to psych-motor( now called complex partial.) I had grid placement on 4/5/02 and a partial rt lobectomy on 4/12/02 to remove the area that was causing the seizure activity. Prior to surgery I had been on at least 9 different AEDs and had periods of 12-20 seizures/mo.

We all go through periods of frustration/depression so you are not alone in that respect. Frightened? I don't recall any periods of long fear. I felt more frustation about the slower pace that I had to take to help with my seizure management. You know, part-time student, living with family longer than I wanted, part-time work etc. BUT MY EPILEPSY DID NOT STOP ME FROM MOVING FORWARD.

You hang in there. Do your best to be stronger than the seizures. Find a pace that you are comfortable with. Remember, YOU HAVE EPILEPSY, EPILEPSY DOES NOT HAVE YOU. YOU ARE NOT AN EPILEPTIC! YOU ARE NOT DISABLED! YOU ARE NOT HANDICAPPED!!

The strong seek anwers. You cont to be strong.

If I'm being too forward, I do apologize. Please ask all the questions that come to mind. We are here for each other.

angie

Hi Judie

I too have been looking for support and am new too this site. i understand the depression and fear. Lately my seizures have gotten so bad i am afraid to be alone. which is so not like me; cause i used to be a very , very, independent person. i dont like to go out much cause i dont want anyone to see me have a seizure ya know embarrassing and all that! everyone says don't worry about it but they just dont understand.

All i can offer is an understanding ear. Sometimes just knowing u are not the only one seems to help get me thru the day.

hope this helps and keep writing it helps

best
mia

thank you all for your support. do not mean to sound sorry for myself, and now I am "fighting back" i was placed on an involuntary leave from my state job, and was just devastated. The reaswons they cited were "you have a blank stare, you look confused and seem not to understand what is being said to you, you smell things that others do not, and onceyou called one of your staff into your office and when she got there, you forgot why you called her.".At first I didn't understand what was happening, then I got a letter demanding I get a "full medical evaluation" and have the doctor speak to my employer and share a copy of his report with them. I retained an attorney and we are fighting this, and have been to a n MCAD (massachusetts Commission Against Discrimination) investigatinve hearing laast wee, which didn't go well for my employer. They were told they needed to provide names, specific incidents and documentation re: the "concerns" As a result, I feel I have a "bull's eye on my back" and am being scrutinized at a level that no one else on my level in the office,k is. Yessterday, I broke down in tears at the confrontational, hostile approach of my manager. I soght my union rep, and my manager toned it down a bit, but continued to be very negative and interrogated me about my work. I conttacted my lawyer who said she document this incident, and report it to the investigative hearing officer. Retaliation for filing a complaint with MCAD is illegal. I was devestated last night, but look to today as a new day, and I'm just not going to let them get to me. I have documented their actions, and if necessary will present my documentation at the next hearing. Any suggestions as to how to manage a situation like this without breaking down into tears? Sorry this is so long.

Hi Judie,

God to hear from you again. I don't consider your post a 'Feel Sorry' Post. In fact, I hear a Brave young Lady Trying Real Hard to keep her Job! And that Is Serious Business!

How to go in w/out crying? Save the crying for When It's Over! For now, Stay Strong. Go in Mad & Fighting MAD. Your Rights have been Abused! The ADA Does Include PPL w/ Epilepsy! Have you ever read our Epilepsy Bill of Rights? Chek out epilepsyfoundation.org/ Use Search Tool. Maybe reading That will Stop the Tears! You aren't just fighting for your Rite, you know? You are fighting for everyone out there w/ EP, also. We Need You to fite. It doesn't matter if you win or lose, at Least you stood up for What's Rite!.

If ya feel like a BullsEye Now, Wait till ya win & get back to work. Hooray, for Union Rep! At least you have Someone in Your Corner.

GOOD LUCK! Chin Up, Lady! You are in the Rite & need to Remember That, when facing down all them 'Ignorant' PPL! Keep us posted on how things go!

Love Candi

Hi JudieSue

I know this must be frustrating as well as frightening for you. You do not come across as someone who is full of self-pity. No!!! Everyone goes into periods of "blank stares or confusion" from time to time. We all, and this inc the people who don't have epilepsy/seizures, have periods when we forget what we were doing. Hang in there. Is there an EPILEPSY FOUNDATION in your area? They might be able to guide you to additional legal support. Look into the resources of this site to see if there are any other services which might be helpful.

The Disability Linkage Line helped me when I relocated to Vegas. The number is 1/866/333-2466. www.MinnesotaHelp.info is the web address.

Is there a CENTER FOR INDEPENDENT LIVING in your area? The office in Vegas works with employment issues, housing, benefits, etc. Check to see if one is in your area. Unfortunately, they have no national web address.

Hang in there. Cont to fight for what is right. Discrimination against us is so hard to deal with. Exhaust all the resources that are available to you.

How to handle this w/o the tears, I don't know. Do you enjoy reading, walking, or a daily trot to the neighborhood coffee house? It might help to remove yourself from the areas of frustration for a short while.

I hope this helps. Find a peaceful spot where you can relax. Stress and frustation can aggravate our seizures. Hang in there. Glad to know you're still fighting.

angie

Hi Mia,

What you said I could really relate to. I've had seizures since I was 16. As soon as they put me on Depakote, the seizures stopped. I was in high school, so it didn't matter if I slept all the time, and I had my family surrounding me for support.

They just switched me to Lamictil because they said it is safer for pregnancy. As I have increased my dosage, I've had all sorts of side effects, including different/worsening seizures. I've had three in public now and you're right, even thought people "feel bad" and say they understand, they just don't. It adds to the anxiety and depression we already feel. I also am afraid to be alone. I am not that person. I'm independent about everything I do. I live alone, my mom lives 5 hours away, my sister and my dad both one hour but my dad travels for business all over the country. I don't have someone I can call at the drop of a dime.

It's very scary, not having control over your own body. If you're suffering from anxiety, ask your doctor for something to calm you down. I don't know what kind of seizures you have or if you can feel them coming, but my dr. just gave me ativan, which is a mild anticonvulsant and anti-anxiety med. As soon as I feel one coming on I take one and try to relax, and it helps immensely.

Hope this helps...

Ky

do not feel bad when i was living in PHX befofe moving to HI, I had tof ight toget back one of meds Lamictal that I needed for my EP amd tje insurance company did not like the way my neuro was dishing it out to me in low doses. They scrutinised everything he did so I could have thta drug drug. They pulled t game ame well lets try toget her on Tegtertol wichi almostl killed me , Dilantin whichi made trouble wiht my gums and or depakote which along with Tegrtoal both those drugs mawde me REALLY toxic. I a, MOT aloud to have those any more but they kept trying and he kept trying tofind a level wof that drug they would take. he tried everything and I did a verbal appeal with my bid mouth over the pnone and exp,lained aned to them thta I coujld NOT go with out it and so on and won and he upped to 600 mgs and they took that and have had no trouboe since then.

RIght now I am not allowed to work szs to unpredictable, can never drive again ever. e ven though we have moved out of Maui to Oahu they shiooed teh car first so my hubby could go to work. HE got a better jib over there with bigger pay, so we left Maui.

I Have so meay health praoblems that I was constanly flying to and from Honululu for medical care, so now we are in Hoululu there is a clause in ther I that Iam able to come ack to teh mailnland to see my neuro for work- up nad f/u and such for and on my VNS.

Butthat is every 3 months every thing else is done in HI. insurance has compleyy chanced over here!!

phoenix_aun

hi judieSue,

what kind of szs do you have? ho long havde you had EP? what drugs? VNS? RNS? (Reactive Neuro stimulator) NCP(neuro cybernetic Prothesis) NCP is really close to teh VNS. IT is made by NeuroPace IT is done the same thing with.as the VNS some ppl evevrerr to it as a VNS when infack it is not>

I have complex PArtial of the anterior part of the Left Temporal Lobe. That is why I was never a candidate for brain suregery adn had to ahve the VNS instead, which I am very happy with.

my EP was not dxd until I was 29 due to a car accident back in dec of 02. have not driven since xcan not work with szs to unpredicatable.

my first szs came 8 months after my accident as aGrand Mal tje night before my college graduation admn I was a walking zombie with a brokeni ankle.

all my EEGs have bben abnormal etc

well enough blathering.

nancy