Hi

[GrlCalledLauren]

I guess i'll start by introducing myself. Um i'm a 19 year old college student, who has recently started undergoing testing for epilepsy. I've been having 'seizures' on and off for a year, which has been frustrating; because i'm an athlete (marathon runner, and women's rower). At first they started as focal and blackouts- which after CBC after CBC (epilepsy never came up as an option) they decided everything was inconclusive. I thought I was fine and I began my second year of university study..things were okay and then I started have focal and partial seizures, I couldn't move at times, I couldn't control my muscles, my body would shake, I couldn't talk correctly- the whole thing and ofcourse I would be ill and have headaches (pain in the back of my head that would move to the front and sides, couldn't look at lights) that would last for weeks on end. Student Health pushed through me through VCC (it's a program for people without insurance) and i'm currently waiting to get processed so I can see a neurologist. I had to go to the ER, except the ER thought I was mental, gave me a CT and an EKG and said 'it's not a stroke or a brain tumor so here are sedatives, have fun with exams' So I guess i'm currently in Limbo now. It's frustrating because sometimes I think people think i'm just mental, or an attention seeker, and then there's waiting for the insurance plan thing to go through...and of course, because student health has finally said 'this sounds like epilepsy' I got suspended from rowing until i'm medically cleared..I guess one of my questions is, 'has anyone else ever felt like people thought they were mental or crazy? and how do you cope with the waiting?' I mean, just saying 'epilepsy' has my coaches, and team mates, and friends treating me like a leper, and of course there's the 'seizure jokes' which never are funny. So how do you cope? And have you ever felt like just because you weren't having a tonic clonic at that very moment, that people thought you were mental? Sorry to ramble- I'm just confused, and overwhelmed. Not to mention it's like there's a Jiminey Cricket on my shoulder constantly now saying, 'Don't over work yourself, don't get too little sleep, try and eat, because you don't want a seizure'..and 'headaches' that are ALWAYS there. Anyways, sorry for rambling..I just was wondering if anyone has ever felt the same 'hopelessly depressed, everyone probably thinks i'm mental, all I can do is wait thing'
XXX

 

[knothing]

Rambling is not uncommon when someone is going through this because there is plenty to deal with at first.
First the ER is never good at diagnoses but getting to a Neurologist is a key first step to help from the medical community. You will have more tests and it is fine if they see nothing in the test. Epilepsy is not like finding many other illnesses no one test finds all.

People will not understand and use anything to dismiss the issue. There is a severe lack of education for everyone and this month is Epilepsy Awareness month so surprise not many people know that. The best way to start educating others is to first educate yourself which being on here is a good first start for everyone at least it was for me. This will take you less time to cope with than many of your friends and team mates. In general even my family does not want to talk about it so I talk here...sometimes. The jokes stink and for me it was easier to tell people to knock it off and I made a few jokes about it myself and enjoyed watching them feel uncomfortable. I think back to college and I have no clue how I would handle that (I know a lot of help that was).

As for you it really helps me and others to get a good sleep every night and to reduce stress as much as possible. Keep a journal on your seizures and what events proceeded them. Reading what your sports are tells me that you are into pushing yourself to your limits and beyond....at least all the marathon runners I know do that (rowers I don't know).You have to take care of yourself and that happens one day at a time..... this is a marathon not a sprint.

You are not hopeless.....you have to go one day at a time and I coped by learning, patience, and going here. Glad you found us and hopefully we can all help in some way.

 

[GrlCalledLauren]

Thank you! Yeah rowing is a lot of pushing yourself too. It's just harder now because sports are how I cope and it's weird taking it easy until I can see the neurologist and get some medication to control the seizures. I'm talking to my coach about talking to the team, and i'm trying to 'roll with the punches' right now though since it's all so new, it just sucks. Like especially when one of the boys on the team took a flashlight and started flashing it on and off in my eyes while I was trying to row- Thank you so much for responding! I'm educating myself and i'm like you where everything that could be wrong in my family is taboo (we're like the suburbia straight A daughters in stepford sort of world). Again, thanks for responding and i'm really glad I found this place too- it's helping me cope
XXX

 

[jyearta]

Hi, and welcome to CWE. You are going to be glad you came here.

No one does understand E. except for those of us who live with it, and here you can express yourself rambling or not, you will get the support, caring that you need. At least that has been my situation, and I'm 59 years old.

I know what you mean about others thinking you are crazy. I think it is that people don't understand and they don't know HOW to act or should I say react to someone once they are told you have E.

Be sure and go into all the diffe. forum. I have learned more here than I can began to tell you, and it has made a different in my life.

I do hope that you will soon be able to get in and see a neur.

 

[Nakamova]

Hi Lauren, welcome to CWE!

Unfortunately there's a lot of ignorance out there about epilepsy (even among doctors and other health care workers), so the kinds of reactions you've been getting are all too common. November is National Epilepsy Awareness month, but probably every month should be given how far there is to go.

Most people aren't being deliberately cruel, so if they say something ignorant or hurtful I tend to take it as a teachable moment, and set them straight in a matter-of-fact way. But as a student, you shouldn't have to deal with this on your own -- is there anyone in charge (coach, dean of students) whom you can approach about this? There should be someone advocating on your behalf, and making sure your peers and teachers are brought up to speed.

Here are some things your advocate needs to make clear:

1. Epilepsy is NOT contagious.
2. Epilepsy is NOT a mental illness. It is a neurological illness, and can share many similarities with other neurological illnesses, including with migraines.
3. Epilepsy is a loose term for over 40 different kinds of seizure disorders. The majority of them DON'T involve convulsions or full loss of consciousness. Depending on the kind of seizure disorder, there can be a wide variety of symptoms, everything from sensory disturbances to motor and speech issues.

I hope you can get some real help soon -- not just with your symptoms, but with your social environment. Are there friends and family who can help you at this time?

Best,
Nakamova

 

[GrlCalledLauren]

Thank you for responding I have some friends, sadly my family isn't a support outlet they like to 'brush things under the rug' so to speak. But I do have some friends that have been really sweet and have been helping. Eventually they're sending me to neurology to get an EEG and electrical monitoring, because they want to have me on anti seizure meds as soon as they can; but like i said we're waiting for waiting for the insurance program to put me through. I'm going to try to talk to my coaches and the RA's more about it too; to try and help with it; but I know it's going to take some time. Because like you said people don't understand, they think all epilepsy is just tonic clonic seizures- so i'm working to educate myself more and hopefully educate my peers. I'm really glad I found this site; because it's just nice to know other people have the same feelings and i'm not alone. Thank you so much
XXX

 

[knothing]

Defining Epilepsy is like Biological classification.There are just so many combinations and factors for every individual.

 

[Occupy Epilepsy]

Hang in there Lauren, we're all right there with you cruising along on the same boat. The toughest part isn't the physical pain or having to take daily meds, it's getting others to understand how you're feeling, especially without overdoing it. That's why other epileptics make the best ranting buddies haha! I've only been here a few days myself and feel right at home and I know it'll be the same with you. So just keep your head held high and look over the nay sayers, it's there loss for shunning someone who deserves a tremendous amount of respect for what they deal with.

Oh and welcome!

 

[Lewall]

Hi Lauren, you are not alone -- as I think you can see from the replies. Most disappointing I believe, is that doctors, or worse, neurologists, say things that lead us to believe we know more than they do. (I'm lucky I like my neurologist). The myths and stigma are unbelieveable in this day of enlightenmnet. People act uncomfortable when the word, E is even said out loud. I have no idea why. It makes me wonder what they are thinking when the silence becomes so loud. Hang in there