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meghanc posted:
Lately I've been having more seizures than I've had before. I believe that some of it might be from my job(I work at a baseball stadium) but I'm not sure on the rest. It just seems like when I think I've got everything under control something happens. I'm just trying to figure stuff out and it just doesn't seem to be working. I guess what I need help/advice on is how I can get things back to the way they were. I was seizure free for almost 10 years until a few years ago. I'm just so tired of waking up and not being able to gets words out the right way. It's just so depressing especially when I get teased all the time about it like my brother in law does to me. Thanks in advance for any help that is given.
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hula_dancer73 responded:
it mih=ght be from the stree from your job. that can a lot of stress.

it couldalso be from the meds you are on. I had a lot of trouble whe nI was talking vimpat adm fonally got off it and the szs activity stoppspme.
I
grante d I stoll have them they are NOT as bas as they were bthe vimpat..

I am sorry about the messy typing but I had a sz 2 days ago andI am stillreeling from it. I am looing my balance wabcwards rather than froneard and it is not funny .

nancy
I live on O'ahu in West Honolulu-GO UH Warriors!
 
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dancer86442 responded:
Hello Meghan,

How are you today? welcome to Epland AKA Epilepsy Community. May I ask what kind of seizures you were being treated for? Do you know what caused them? Did your DR change your meds? How long ago? Have you had Med levels (blood test) done, recently? Is this an everyday occurrence or just frequent enough to be annoying? I apologize for all the questions. I am not a DR but, can advise you better, if I know.

As Nancy said, Stress or meds can be the Issue. But, other factors may be possible. Do you keep a Daily Journal? (More Info under Helpful Hints. ) This can help you determine whats what. Please Read to be sure you are including All necessary Info.

If you think it is the stress of your job, go ahead & vent w/ us. We understand. And it mite help You! As for your BIL, I feel for ya & can relate. Believe it or not, I can take the Jokes from my GF of 35 yrs. Hubby's (25 Yrs) Jokes Hurt. I, finally realized, it is his way of Coping w/ me. Inside he truly Cares, but, is scared for me or about me, at times. It's Terrible that Jokes & Bullying will, always, exist. Even more Terrible when it comes from others who know Nothing about what it is to live in Epilepsy land. Please, don't let it Depress you. Put a Smile on your pretty face & remember He Is the Ignorant One! Hugs

Love Candi
 
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saxofone1 responded:
Hi Meghan,

Welcome to the community.

Many of us have had those long periods of no seizure activity. I know how you feel. I experienced it many times.

Sometimes it was the stress of college finals. Other times, it was just time to move to a new med cuz most likely my body had become immune to that current one.

Teasing can be a bother. My younger brother always found the humorous side of my ep. I never doubted his concern about me. As Candi suggested, it was his way of placing sunshine in a dark area. It has been 38 yrs since my first one. He still continues his jokes. He had fun with me after my lobectomy.

Candi, you mentioned some time ago that someone's logo was "it takes brains to have epilepsy". Throw that at your brother-in-law, Meghan. Possibly he just isn't smart enough.

Please take Candi's suggestions about tests and notes seriously. They are very helpful.

Share with us whenever/whatever you feel the need to.

angie
 
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meghanc responded:
I do believe my job has some play in this since my schedule is anything but normal. There are some weeks that I will work maybe one or two days and then other weeks where I have no day off. Plus it doesn't help that they'll have me working until midnight one day then coming in at 9 the next morning. After this week I'm just plain exhausted because of the way I've been working which is why it took me so long to respond.

My first seizure started when I was 13 months and we still aren't completely sure what started them. My family told me that one day when I was in the back seat of our car I just had one out of nowhere. I have been treated for temperol lobe seizures. My medicine has been changed a few times of the course of my 25 years. The medicine I'm on now, Lamictal, I've been on for 3 years now. My doctor did change the dosage last year I think and it's been fine for the most part. I have had problems with becoming immune to medicine so now that I think about it that could be a factor as well. As far my blood tests I think my last one was last year and everything was fine. I've had all the tests under the sun that can go with epilepsy probably multiple times. It's more of an annoying factor. It where I'll come out of a seizure and when I can think clearly again I'll pretty much be thinking "oh yippie I had another seizure". I tried keeping a journal one time but I kept forgetting to put them down. Another girl has told me how she does that with her seizures.

It's not so much on the jokes hurting me it just makes me angry cause he doesn't have any kind of clue what it's like. Everybody else has been supportive of what goes on with me. They'll make jokes about seizures in some way and if I'm near by they'll say sorry. I think they just forget that I have it sometimes. I had a break down not too long ago (crying alot) and I think that may have helped some since I have this bad habit of just keeping things bottled up inside.

There's one thing that I have been wondering though which I have tried looking up but I haven't found anything on. Is epilepsy becoming more common now for some reason? It used to be that I knew 2 people with epilepsy and now it's gone up to 5. Those 3 new ones work with me and I've seen their seizures so I can see how people feel somewhat when it comes to seeing a seizure. It's pretty scary at first but I managed to pull together quick enough to help them. I heard one person say that we should put something in their mouth. I just wanted to call him an idiot but I just shook my head and focused on her.

I'll probably will start venting on here since you guys seem to have a better idea of what goes on in a brain like mine. I am so sorry that this is so long but if there is anything that I haven't answered please point it out. I tried to answer it all but I got a pretty tired brain going right now. I'm going to give it a break now. Goodnight and thank you for all of this.


Meg
 
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dancer86442 replied to meghanc's response:
Hi Meg,

You did Great answering my questions. I now know you are a 'seasoned' Warrior in the battle w/ Epilepsy. From what I read, it is, definitely, time to get back in communication w/ your Neuro. At least for Blood Tests & then take it from there. All Tests? Have you had a Portable EEG &/or a Video EEG?

Used to do the Journal?? Time to start Again! It really does Help us & our DRS.

Break downs are Good for those of us who 'bottle it up'. I know I do & it's been a Long Time since I've let any emotion affect me. I don't have the Energy to waste on 'emotion' anymore. Or so it seems.

Yes, Epilepsy is becoming more common. Or, maybe, it's Finally, coming 'Out of the Shadows'. Plus, More ppl w/ Seizure disorders are joining the work force. I know there are 65 million or more in the World who are afflicted. And that's just the ones' who have reported it. There is a Guesstamate that claims 150,000 will be diagnosed w/in a yr, here in the states. I have met a few here in my Town of Bullhead City, AZ. And we are just a 'blip' on the map. But, I personally have never Witnessed a seizure. Thank Goodness, you were able to Help a person who Did. I know I would have wanted to tackle whoever said that about 'put something in the Mouth'. But, you did good staying Focused! I questioned several ppl at a wedding a few mths ago. They All had the same Response. They Learned from Me! But, we Need someone 'infamous' to get the Public Attn & Dispel so Many Negative Myths that still abound. Not sure if you listen to Football News, but, seems we Do have a New advocate or 2. A Coach & several Players are in the 'Spotlight'. Not sure how long that will last. We will see. I know I Appreciate what they are Doing/saying, Now. And I don't even Like football. Not like Angie does.

Please keep talking to us. we will be here for you. Go see your DR! Hugs

Love Candi
 
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meghanc responded:
I did the portable EEG a few times but I'm not sure on the video. The only reason that I haven't been to my doctor or gotten any tests done is my insurance. It only covers $50 dollars of everything and I'm sure you know how expensive that stuff can be. Thankfully with the ACT starting tomorrow I'll be able to get some better insurance. The insurance we have now is through my husband's work. Due to my crappy insurance I have to pay full price for my medicine. The upside(if it can be called that) is that it's generic so it only costs me $42. It's not really cheap but compared to old medicine it is very cheap. The old medicine I was on was Felbatol which is never prescribed nowadays due to some reasons which I forgot.

I have to keep my emotions bottled up because where they threaten to come out is when I'm at work which is probably best that I don't show them cause I'd probably get fired. I work with some 16 and 17 year olds who don't know the meaning of maturity. They just feel the need to just stand around and talk while the rest of us are trying to get before midnight. It seems like the later it gets though the more my emotions want to come out.

SInce ACT is coming out I'm thinking about getting some new insurance. It'd not only give us more money with Cody's check but it'd definitely give us some better coverage.

It makes me sad that this is coming out more if that's the right phrasing. I have an appoitment in December with my neuro. Or I may just find another one because he doesn't seem to be doing much more than any of the other ones I've had. There was one I had who was really good but I only had him when I was a kid sadly. Whenever he would check my relfexes he would pretend that I hit him in the groin. He was one of the coolest that I remember.

I don't really pay attention to football. My husband does though. He follows fantasy football and stuff like that. It doesn't seem that interesting to me but oh well.

Goodnight you guys
 
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saxofone1 replied to meghanc's response:
Hi Meghan,

Are you seeing a general nuerologist or an epileptologist(seizure specialist)? If you're feeling that your current doc isn't doing enough, then it is probably time to seek a new one.

Yes, more people are talking about their ep but still too many are afraid of the social injustices that they might face.

There is one professional football player with ep who has spoken out. If memory serves me right, he plays for the Baltimore Ravens.

The coach Candi mentioned is the football coach from the Universtiy of Minnesota, the Mpls campus. His name escapes me at this time. He has experienced a few seizures doing games. The team and the university are standing beside him. Though many "outsiders" feel he shoud turn in his spikes, he continues to do what he is able. I recently read that the U of M along with the EFMN(EP FOUNDATION OF MINNESOTA) were plannng a a fund raising event for him. I haven't read anything else about it. I do know that the Coach is under excellent medical care. At last report, he was seeing one of the top epileptologists in the country. This doc is wonderful. He was my first epileptologist. He has much passion for his patients and his work.

Candi, Dana is keeping me informed of the Coach situation.

Meghan, Dana and I both had a partial lobectomy. We went to the same ep clinic. Dana(screen name clarinet2) is on their mentorship list. The docs thought we'd be a good pair. Good call on their part. She walked me through it. We have become sisters.

We all have bottled up feelings at one time or another. Find a way to release them that won't be damaging to your employment. I know, easier said than done.

Good luck on finding good insurance coverage. Think about checking your local EFA for info about that.

Mehgan, please keep sharing with us.

angie
 
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meghanc replied to saxofone1's response:
Angie,

It's just a general neurologist. I've never really looked for a epileptologist before. Honestly I've never thought about one either. It's always just been general neurologists for me. I've always tried to find that specializes in epilepsy though. It actually wasn't until I had a seizure that my boss found out about it. Well my second boss anyway. One of my bosses found out about me talking about it when my coworker was having a seizure and I was telling one of the people helping her about it. They were definitely surprised but it wasn't until the seizure I had at work that my other boss found out. I've never had seizures at work so I never really found the need to tell them about it. I also worry about having it used against me. I know there's a law against that but that still doesn't stop it from happening.


There is this page on page on Facebook that let you rant on and that helps some of the time. I think now that I'm on this community I'll be able to relax more guess is one way to say it since alot of people can understand what I feel instead of my husband or random people. Most of the time when I try to explain what I feel to him he just doesn't understand it. I don't think he really truly understands why I feel about them and how I feel once I come out of my seizure. Well it's not too easy for him to since I'm not quite sure how to explain it to him. I mean how do you explain that you pretty much have no control of anything afterwards. It's hard to explain how I want to talk so bad after I get out of the seizure but I just can't decent words out. It's frustrating at times.


I took a look at the Epilepsy Foundation site and it showed me some places that had doctors but nothing insurance wise. Can you point me in the right direction by any chance?


Well it's after midnight here so I need to hit the hay and enjoy a night of sleep that won't be interrupted by an alarm
 
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saxofone1 replied to meghanc's response:
Hi Meghan,

IfYou might want to try a local hospital as a start. They might be able to help. Talk with your pharmacist about a specialist.

Are you receiving state med assistance?

I had problems with employees and my ep during my early job-searching years. By total accident, I found my calling working as a volunteer at an elementary school some 30 yrs ago. I've been with kids ever since. I've been fortunate enough to have some suport/encouragement from the teachers I worked with.

It is hard for others to understand the daily difficulties we have. It is very easy to look inside the window and make suggestions. I don't feel that the people w/o ep will ever fully understand. A man can't tell us about menstrual cramps cuz he never had them.

I stumbled on this site looking for answers/explanations. It has been a positive experience. I hope you continue to share with us. It is very rewarding to share with others who have a fuller understanding of what is going on.

If I find out any new info about insurance or docs that might be useful to you, I will be sure to let you know.

Hope your day has been a good one.

angie
 
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dancer86442 replied to meghanc's response:
Hi Meghan,

If you did have a Video EEG you would remember it. Why? Cuz, you would have been in the hospital for several days, hooked up to an EEG & being recorded/watched & unable to leave your bed, except for the potty room.

Need help looking for a New DR or Epileptologist? Helpful Hints. Look for Comprehensive List posted by Phylis. These DRs are recommended by others' who have Epilepsy & who knows, maybe one in your area. But, you did Good making sure the Neuros you have seen specialize in Epilepsy. Finding the Rite DR is always the Pitts! Finding one who Listens & Wants to Help is Rare. But, they are out there.

Yes, over-tiredness will either cause Mood Swings or seizures. It happens to a Lot of Us! I Did get Fired due to an 'emotional outburst' at work. The Manager left me behind the register for 5 solid Hrs! No Assistance & a steady stream of customers prevented me from taking my Mandatory 2 hr break. I could 'feel' myself Yelling, but, couldn't hear how Loud I was & couldn't make it Stop. It only lasted a few minutes, if that. But, it didn't matter. I was yelling Inside the Store at my Manager. So, she fired me the next day when I called to find out what time I needed to come into work. The Store Resolution Center & the Unemployment Judge agreed that I was Insubordinate.

Ask Hubby if he has heard of the Problems w/ Coach Kill. Yes, you can find out More about what's happening there on Facebook. I believe TEN The Epilepsy Network & EpilepsyU have been keeping up w/ the latest Info. While you are about it, join me on National Seizure Disorders Foundation Community. I am not Known as Candi, but, if you mention me or WebMD, I will know who you are. I've belong to several groups on FB, but, I personally think Tonya's is the best as far as support & Info goes. But, don't leave us. I Like having you w/ us!

Felbatol IS still being Prescribed. They did recall it back in the early 90's. I tried it & loved it. Then came the Recall. It can cause Bone Cancer in some PPL. That has Now been determined to be Rare Incidents. But, now that I am borderline Osteoporosis, I am very Leary about asking to be put back on it. Bummer, cuz, my Moods Improved & I had no seizures while I was on it. Cheapest med out there that I know of: My Phenobarbital. Only costs me $10. Used to be $5. Inflation! I am on other Generic medications (for Lung Disorder) & w/ Insurance, it still costs me $45. I don't recall how much the Felbatol was.

Hope you are having a Good Day. Crack the Whip on them Teens. Have you ever had a discussion w/ them about Proper Seizure First Aide??? P.S. To keep your emotions More under control, please, try to take a 10 minute break every 2 hrs. That is actually a Law, if you ever run into issues over it.

Love Candi

Hope you were able to register for new Insurance. The site they advertised was Swamped w/ so many callers yesterday that a Lot ppl were unable to get thru.
 
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dancer86442 replied to meghanc's response:
BTW: I have found the best Description of what we go thru is to tell ppl that a seizure is like a Thunderstorm in our brain. The Thunder &/or Lightning disrupts neurons that would normally act Normal, in our brain. Like a power outage. Only they don't last as Long. Until the Power is fully restored we have no control over our bodies or our brains. Making it impossible to communicate or even Think rationally/ properly.
 
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meghanc replied to dancer86442's response:
From the sounds of it I haven't had a video one then. I never thought I'd see the day where it was prescribed willingly again. Phenobarbital was the first medicine I was on and it worked great from what my parents said. Sadly though they had to take me off cause I reached the maximum dosage It was after that one that we found out some of my allergies. None of them were even close to pleasant to say the least. When my husband was overseas we had pretty much the best insurance out there. It was TriCare and my medicine only cost me $3! Unfortunately when he came back we had to start paying for it again and it wasn't cheap so we ended up dropping it

Thankfully I don't work today either. Things are going to get pretty busy now that we are in the Playoffs. Usually I do get a little "breathing" time every couple or so hours especially once the game starts. If I thought it would get anywhere I would talk to them about it but I don't want to waste my breathe on them.

I did some research yesterday while my husband at school and this state insurance I guess you could call it? It's called Pre-existing condition insurance plan. I haven't read everything up on it but so far it sounds pretty good. The doctor that I found is part of it too so that makes it a little better. What sucks though is that they've stopped accepting applications until the first of the year I think so that they have enough money or something like that. I don't know that I'd be able to do it now anyway since the government decided to shut down on us. I tried to read up on what all was shut down because of that but it got all confusing so I just gave up. I did read that the military is going to be affected by it which may mess with us since my husband is in the Army. They're saying that their paychecks might take a hit. I truly hope not since they're our main source of income but who knows maybe they'll come to their senses soon. Let's keep our fingers crossed.

Also I think I will give that explanation a try next time someone asks. That sounds completely and totally true.

Enjoy your day
 
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dancer86442 replied to meghanc's response:
Hi Meghan.

You are on Facebook. Please search for Phylis Feiner Johnson & Jeanne Phelps. Phylis posted several articles about other effects the shutdown has created. I'm sure others' have, too. I think I shared the Info. I saw it on the news the other nite. I read 5 or 6 affected areas, but, what stuck in my mind was the National Parks & the WIC/food assistance programs. My Hubby's last job was in Bullfrog, UT we were in Glen Canyon National Park. He was a Government electrician/maintenance man. Thank God he retired several yrs ago. I'm not sure how this will affect our Insurance thru them. It raises questions about His retirement pay, too.

My Dad was in the Army. After serving in the Navy. He worked up to the rank, CWO3-4??? He flew Helicopters, which is on my Wish List. Not to Fly one, just a Ride in one. He was gone a lot. Or so it seemed. I have a Telegram from Alaska congratulating her on my Birth. I have baby rabbit fur booties, also. Made in Alaska.

Hon, it is Never a Waste of Breath to talk about Epilepsy. How can we dispel the Myths, if we don't Speak Up???? At least talk to them to be sure they Know Proper Seizure First Aide. And let them Know it is Not Always Necessary to call an ambulance. And Definitely Do Not put Anything in your Mouth! Or Yell, slap whatever. Think of the Word TRUST. Each Letter represents actions witnesses should take & we Have to Trust them to take proper action. Have a Good Day. I do Hope you figure out the Insurance Issues. Thank God My Hubby takes care of All That!

Love Candi
 
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dancer86442 replied to dancer86442's response:
WebMd posted this on Facebook. Not sure if you saw it, but, Maybe this will help. <3 http://wb.md/17x3eQ1


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