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my epilepsy is a problem please help! I'm worried and scared of my brain!
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joeyc123 posted:
I have been a diagnosed epileptic/seizure disorder patient since 1-15-2011. This is the best part. I went and saw a supposed good specialist at Central Dupage Hospital in Winfield, Il. The Dr. was an arrogant jerk. First he told me I'm not so sure you had a seizure. Keep in mind, I was taken to Northwestern Memorial hospital in Chicago Illinois by ambulance. When I was found in a back hallway at work, I was in a full blown seizure observed by paramedics and coworkers. Then this Dr. put me through 5 days of in hospital EEG testing where he racked up a 20k+ bill on me. To then tell me well my machine didn't find anything you must be Bi-polar or have some other disorder. After I saw psychologists they said you are as sane as anyone I ever met. Your not Bipolar or depressed. You need a new specialist. He put you in danger I was told. This guy told me oh you can keep driving and live a normal like. Stop taking Keppra!

As you can imagine this opened up the door to a chaotic nightmare of recurring seizures. I finally found the right Dr. that said when you called up the specialist who initially treated you and informed him of the seizures again he put a 240lb man on 1000mg of Keppra and didn't tell you to stop driving. I told him nope. I also informed him that the arrogant Dr. told me he didn't need anymore patients. After reviewing my records my new Dr. was upset. The new Dr. associated with Elmhurst Memorial hospital was great. He put me on 3000mg of keppra and told me no more driving for 3 months.

I have been fine for 100 days. For what ever reason I have started seizing again. I have had two seizures in 2 days. I hit my head quite hard. My memory is shot, tremors, migraine, and a nice concussion. My emotions and ego are shot again. I feel like I'm back to step 1. I fear loosing another good job, have std insurance till major group coverage kicks in in October. So no coverage is available for neurological issues. I am struggling in school and about to drop out. The seizures wipe out my short term memory. I can't read or write well let alone remember. My balance is awful. I keep falling down. I am embarrassed and concerned.

I had to move in with my retired mom and dad. They don't know what to do and refuse to research or read about my issue. I need to see my Dr. again on Monday. Many of my friends and family no longer feel like friends or family. They joke about my issue and don't want to help or hear my issue. i feel like an isolated freak. I'm feeling like friends and family aren't friends or family. I want to run away and bury my head in the sand and cry.

Does anyone have any ideas or support groups I can find for help. I'm hurting real bad. I'm afraid to leave my house. My dog cries and keeps licking my temples. He knows something isn't right in my head. He alerts my family when I seize. Please help, I don't know what to do anymore.
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dancer86442 responded:
Hello Joey,

Take a Deep Breath. I understand. And I Have done the 'homework'./Research. Now, this is up to You! Educate Yourself, despite family & friends! Education is the Key. Plus, it will Help you to become your own best Advocate.

Put your Bad experience w/ Doc aside & Move Forward. Your Journey is gonna take Time & Patience. Your treatments are 'trial & error'. Tests Can be Inconclusive. Plus, over 65 % of PPL w/ Epilepsy have 'no known cause'. I know that's a Lot to consider, But, it ain't all Bad. You can Learn to Cope. You just gotta take One Day at a Time.

Have someone give that dog a Treat each time he alerts someone. Please! You have the makings of a seizure Response Dog. And if you pay attn to his actions/body language, he mite forwarn you of an impending seizure. Thus, giving you time to find a Safe spot. You train that dog Rite & you Can take him to school. Mite have to beg, but, talk w/ your counselor & school Nurse. As to how to get thru school, again see your Counselor, the Nurse & your Teachers. It is well,known that they will assist you. Like give you time for papers, tests, call you w/ assignments when you are 'down'. Chek out Resources, epilepsyfoundation.org link epilepsy.com for even More Tips. The EFA site can find a 'live' support group near you, too.

Freak? Honey, I bet there are Many more on your campus that have Ep, also. Can you tell? No! Not always. Epilepsy is a 'silent partner'. No one can predict when the next seizure will occur. Even those w/ control.

Want Control Faster? Start a Journal! Info to include under Tips. It Can Help you figure out Why or what re-triggered seizures. Other than the fact your med/dose ain't Rite for you.

Memory Issues are normal. Chalk board, dry erase, sticky notes. peat, repeat Reading. But, then again could be a side effect of your med. Tell, Don't Ask, your DR to put you on Another med/treatment! He may even consider adding another med. Keppra is known to work w/ other Anti-Seizure meds. But, I think I would insist on Mono treatment, First. Especially considering the Side effects I think you are feeling. It's the Best solution. Keppra ain't working to control seizures. The 6 week trial & error phase is Done. All our meds require 4-6 weeks to reach Therapeutic levels. And we know by then what reactions we are having. Good or Bad. Or, you could consider 'alternative' treatments. Please visit coping-with-epilepsy.com Link also in Resources to learn more.

Have you visited our Epilepsy Health Center? Did you watch the Video Clip posted by Haylen? It truly does help to know what you are dealing with. But, keep in mind, You Are Still a Normal Person!

Until control is achieved, you can expect to take one step forward, two steps back. Don't let That get you Down. Don't Let Epilepsy Rule! Educate Yourself & those Around you. Just let others' know what to expect & explain Proper Seizure First Aid. You Will find True Friends. But, not by burying your head in the sand! Give it Time. Keep asking Questions. Vent all you Want. We will Listen & help Point you n the Rite Direction. HUGS!

Love Candi
 
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saxofone1 responded:
Hi Joey,

Oh boy, do I understand about the desertion of "friends". I had my first seizure in '75 while on spring break from the 8th grade. When word spread about my seizures the people who were always at my house became like casper, only they were unfriendly. They avoided. When I entered high-school, the other students scattered when I went into a seizure.

But I cont. I said "okay, be that way." I lived with my parents longer than I wanted. My mom was fearful of me having one away from her. I had the opportunity, when I lived in Mpls, to become part of an organization that assisted adults with ep to become independent, away from the crutches of home

My initial eegs showed no seizure activity. Though my doctor at the time had seen me have one(deep-breathing was done to generate it) he still wanted to deny. "This looks psycho-somatic."

It took a couple of yrs of testing before epileptic spikes were found on my eegs. I went through high-school on a variety of different meds in an effort to find the right one. I know it is a frustrating and frightening period. As odd as this will sound, I wasn't the frightened one. My mom was. I simply did my best to keep moving forward.

My initial seizures were simple staring spells that looked like the classic absense, petit mal, type. When the tests did show seizure activity, the doctors said " they're not type A but Type B. Another med is needed for her style of seizres."

My mom went crazy. Once again, I told the family and doctors to be calm. Let's cont on.

Friends, hmm? I am blessed to have 2 friends who have stayed at my side. I met one in '66 and the other in "68. My ep never bothered them. "What do we need to know/do should you have one with us?"

If there is an ep foundation in your area, they should be able to guide you to a support group. Ask your doctors, not just the nuero but all of them if they know of one. Check with the hosps in your area also.

Please note that I have not referred to any of us as "epileptics". We are individuals who have epilepsy. Leave the "handicaps" on the golf courses. "Disabled?" Leave that one for the car baterries or whatever.

After yrs of meds, docs, tests, I refuse to be beaten because of an "excitable" brain. I did have brain surgery in '02. I have no regrets and I doing well. I feel that part of the success in therapy is feeling comfortable with your med team and not letting the ep, or any med condition, define you.

You are still the wonderful person that you were before your first seizure. Ask questions. Cont to seek med help until YOU are comfortable with the treatment and info that the docs are giving you.

It is now time for patience. Take notes about everything. Diet, mood, weather, bright lights... The national site for the
ep foundation is www.epilepsyfoundation.org .

You are not alone in this. I have been through it. Keep us posted. Ask all the questions that concern you.

I'm sending you smiles and hugs.
angie

BTW, Candi says "HI!!"
 
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clarinet2 responded:
Joey,
Candi and Angie are 100% correct with their advice and you are not alone. I learned from my own personal experiences after I pursued more education on the term Epilepsy and seizures. By seeking out Epilepsy Foundations you will have the opportunity to learn more and also give the information to your family, friends and co-workers.

I always explained the do's and dont's regarding my seizures to my friends, family, coworkers and any new friends such as bus drivers when getting to and from work. Your parents need to be educated about seizures because they can start having seizures also as their brains age!

Please do not give up! I almost dropped out of college tech school, but with some counseling from a local epilepsy foundation I spread my classes out over summer and regular school season to help lighten the burden on my brain.

My seizures during college years started to increase from 5-10 per month to about 15-20 per month. I did graduate with only a two year diploma, but I was pretty proud that I did not give up.

Jobs can be difficult depending on what your position is. I have been working in a medical hospital for 25 years and it took some careful persistance to educate my co-workers so i would not be fired can you believe that?

Once you learn more through foundations and hopefully a support group you will be amazed at how much information you will learn and be able to use during your daily life.

Keeping a journal and daily duties on the computer or in a notebook would be the best way to keep your memory flowing. My doctor recommended reading more to keep the brain motivated. I had to write my daily duties, activities and appointments down just in case a seizure wiped it out of my memory.

I still keep my daily routine going and it helps to not forget my medications, vitamins and any appointments. My coworkers call me the most organized employee in that office.

I also had brain surgery in 2001 after 26 years of struggling with simple, complex partial and tonic seizures. Medications controlled the tonic clonic seizures, but not the others. Since the surgery I have been seizure free for almost 10 years.

I learned to drive at the age of 38 , but I will never decrease my medications on my own and if I did have a seizure I will not drive because I will not put another lilfe in danger including my own.

I hope and pray that you will find the resourses necessary to keep your spirit motivated to move forward and put the bad experiences with the previous doctors in the past behind.

Your dog sounds like a best friend. I know that when I had seizures at home, I would find my cat staring at me and once I became aware of what happened she would settle down and relax. To this day she still watches over me, especially if I am glued to the computer screen and then she realizes that I am not having a seizure and walks away.

Best of Luck!
Dana
 
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saxofone1 replied to saxofone1's response:
Hi Joey, Candi, and Dana,

I want to make clear something that is in my first reply. When I spoke of having two friends, I was referring to the people I knew prior to the onset of epilepsy who have stuck with me.

Joey, Dana and Candi have been wonderful friends to me since our 1st "hellos". People will come in and out of our lives for various reasons. While many may turn their back on you and your ep, there will be those who will always be with you. Try not to worry about those that ran from you and seizures.

I feel you'll make new friends who will see YOU before they see the epilespsy. Cont your search for med answers.

I hope you're doing ok. Check with us soon.

angie
 
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joeyc123 replied to saxofone1's response:
Thanks Candi, Angie, and Dana,

It has been hard to have this issue at 37. I am continuing on with life. My new employer has been great. However, I'm still on leave from school. I think I need to seek an associates instead of a bachelor's. I actually have an associates accomplished already. The University I attend online won't give me an associates degree though. They state I can only get a bachelor's with them. I do want the bachelors. The only issue is pressure at school and long term reading and computer use tends to cause seizures.

My mom and dad which I had to move back in with still refuse to do research on my condition. I can't get them to let me ride my bike LOL. That is something the Dr. said I can do with a helmet. They told me the Dr. is nuts. I've become quite depressed that I am limited to my home and walking distance. They can't figure out why I'm moody lol. When I tell them they start screaming at me. So I can't even talk to them about leaving the house.

Fortunately many friends have come around again. They realized I was the friend always there for them when they needed help. Well most came back except for my life long known since diapers friend which infuriates me. If you new the stuff I stuck by him on with his family and marriage.

My health is good as long as I don't seize lol. I'm ok with having them, its those around me that are not lol. In fact my mom thinks I'm gonna seize when ever I sneeze, cough, am quiet, etc. So I'm about ready to move out of my parents and get an apartment. Reclaim some freedom and normal life again. Back on the date scene too. So I'm moving on.

Thanks guys,
Joe
 
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An_239936 replied to joeyc123's response:
Joey c I am a 46 yr old male who has had seizures since the age of six. My seizures are a cause of a fever at about that age. And in my rt frontal lobe, I got encephalitis. This abnormality in that region caused my brain to have the abnormal electrical impulses. Just a freak thing. I otherwise have had a normal childhood. The teenage years were more difficult. Difficulty dealing with seizures and school were not a good combination. Eventually Imuddled through. Now I find myself getting an associates degree in physical therapy. After I graduate, all the pressures of school are off, he informs me that as a child his greatest fear was that if my seizures were not controlled that I could be intstitutionalized. Ihave had family and friends drive me everywhere.Only because they wanted to. That included my girlfriend when I was going to school(96) has been my wife now for almost 20 yrs. Known since day 1 about the seizures! Always stuck by my. You have to educate yourself. the more you know, the better off you will be in the long run! also, DO NOT wake up every day worrying about having a seizure! LIve LIfe to the fullest. I play hockey Have bungi jumped ski, ahd snowmobiles, ...If I would worry about getting sick, I would go nuts! Besides, I dont have time to do that I am a stay at home dad. MY son is four and he doesnt give me time to think! Best of luck
 
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saxofone1 replied to joeyc123's response:
Hi Joe,

It's good to hear that some of your friends are coming back into your life. I hope they don't run away again.

I understand the frustration in your range of mobility. Joe, is there a van service that assists people with disabilities or the elderly in getting to from places? I use the one in my area to get to appts, support groups, shopping, or out for a day of fun.

Parents can be a problem. They don't want us to grow up. And the first signs we give them that "I can do this w/o your help" scares them.

Have you had the op to check out an ep foundation in your area? I think your parents need it more than you do. They need to learn from others that you are capable of living a life where you can make personal decisions/choices.

Why you parents won't research your ep is heartbreaking!!! I feel that they aren't being supportive towards you.

You say that you're thinking about a associate degree instead of a 4-yr. I think that's great because you are looking ahead, making decisions/choices that are less likely to aggravate your ep, and you have not given school up. I took many breaks in my college yrs. It drove me crazy but I didn't quit either. I didn't finish because I was given the op to work in the elementary schools. I chose to work because my ep was under better control when I was with the kids. The kids were also very supportive. An inexpensive therapy.

My friends have always told me that I could finish school later. "Don't try to do it all, Angie. Finish when you finish."

My mother took my bike and skates from me when all this started back in '75. I simply adjusted.

About normal, what does it mean? I understand what you mean but don't let society's definition make you feel that you're not normal. I feel that normal should be defined individually. What is normal for you may not be normal for the guy next door. Me with long hair, that's totally not normal(for me.)

I hear what you're saying about freedom. My mom drove me crazy when I first left home. Calls everyday. She did eventually lighten up. I moved to Vegas in '07 with my parents. I do miss my own place very much. It was a move that was necessary not because of my ep but because I worried about them being away from me. They depended on me for many things.

Is it possible that your parents are afraid to live without you? Are they trying to put into your head that you couldn't make it without them? Think about it.

It sounds like you know your dos and don'ts. You are able to recognize your limitations and are willing to adjust.

Sorry I'm not down the street from you.

We've gotta do something about your depression. That may definitely generate unwanted seizures. I know it's a roller coaster. One ride that we didn't plan to take. And it certainly isn't fun.

Thanks for letting us know how things are going.

BTW, enjoy getting back into the dating scene. Sorry, but you're a too young for me. LOL!!!

angie
 
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joeyc123 replied to An_239936's response:
HI thanks for writing. My current issue is my parents which I am living with. Then my sister the oncology nurse who is suddenly an epilepsy expert (NOT). They have to remind me every day this could happen. I'm a goof ball. I too play hockey, off road biking, long dog walks in the woods, wrestling, sledding, and so on. My family won't let me do any of it. They tell me if I do I'm kicked out of the house. They've removed all of toys from me except my dog and wrestling head gear. I'm the same Joe willing to ride my bike down a crazy embankment or hill like I'm on fire. Same goes for sledding. I like crazy fast and hardcore. With all my toys removed from me I can't do things that make Joe who I am. So me I'll live and act like I have no seizure issue. Its those around me bringing me down and depressing me. Can't seem to get them to stop and let me live. Not sure what to do about it. I'm in a real bind here.
 
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dancer86442 replied to joeyc123's response:
Hey Joey,

That is so Wrong of your parents to take your toys. W/ proper protective gear it's All possible. Hmmm. How about you do some Homework. Search Google Chandra Gunn. As a Hockey Player, you Should have heard of her. Maybe not. She is from Canada. Print up the Info & show to your parents.

I'm QL w/ it All, except the Long walks w/ the Dog. Unless the dog is trained to assist you &/or trained to seek help! Sorry, honey, Common Sense!

One of the first things I learned: Let your child/person w/ EP continue to Be Normal! If you run across that phrase while doing Homework, Print That Up.

Love Candi
 
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joeyc123 replied to dancer86442's response:
Hi Candi,
I'm not sure what is more wrong LOL. Taking a 37-year-old mans toys away; and or telling me the DR. doesn't know what they are talking about. "We know what's best!" Its really destroying my ego, happiness, and sense of self.

I too told them I should not be taking long walks alone with the dog. There rational is "we live in the suburbs, there are houses and people everywhere in the burbs of Chicago."

Anything they may have chosen to read about EP which is minimal to nothing at best, is twisted and manipulated to there liking. On top of that they can't figure out or understand why I'm so moody and irritable all the time. I tell them let me live my life and do my normal activities. No you can't that is unsafe. No matter what literature or web sites I show them, they refuse to look and acknowledge the material. It upsets us and makes us worry more they say. Quite honestly I feel like a prisoner. Not that I know what a prisoner feels like LOL.

I'm at wits end here. At this point the first opportunity I have to move out will be seized. I can't believe my stuff is gone. I found out they gave it away on top of that. They have no clue how much my bike and equipment was worth. They just gave thousands of dollars worth of stuff I worked for. "Oh its ok, your sick now and can't use it." That is nice to hear. I tell them EP doesn't mean I'm sick! My mom took my good $1300 hundred dollar TV and said I can't have it, "its to big and bright. You'll have a seizure!" Keep in mind never had a seizure watching TV, at a movie, or playing video games. Its the never ending game here LOL. I love my family, but, can't get them to stop this nonsense. I think my only solution will be moving out.

Sorry to vent guys. I am just so hurt and bothered here. Its been a bad year. Its improved health wise. That is it lol. everything else has been a big flush down the toilet.

Thanks for listening everyone. I hope and pray for a solution and answer to my family.

Joe
 
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dancer86442 replied to joeyc123's response:
Joe,

Have either of your parents ever visited the Neuro w/ you? I mean not just take you to the appt, but, literally sit in the room w/ the DR & you?

Yes OR no, take them. Write a list of pertinent questions about activities & any other subject your parents are fighting you on. Let the DR deal w/ them.

If They don't come around, then yes, your best bet is to Move.

Love Candi
 
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saxofone1 replied to joeyc123's response:
Hi Joey,

you're parents are WRONG, WRONG,WRONG for taking your things away. And selling them. That would infuriate me too.

My mom was like your parents. She didn't feel I was ready for college. I delayed it to keep her quiet. "Okay, mom. I'll start in jan instead."

When I moved to mpls in the 90s, the first chance I had to move out I took. Quickly!! I didn't tell my parents until I was sure I had the place that the local EFM had hooked me up with. It shocked them that I would do such a thing. I had to do it 'cause like you I was feeling imprisoned. Couldn't do a thing w/o my parents(partic my mom) wanting to be there with me. UGH!!!!

Keep that fight up. You can do it. As candi said, get them to go with you to chat with your doctor. If there is an EFA near you they might have tapes that you and your parents to watch together. Possibly even another parent who has an adult child with ep to talk with them.

You are not venting. You finally have the chance to share with others what you are feeling. You are saying what is on your mind w/o the worry of being judged or told "no, you can't, that's wrong, etc."

My thoughts and support are with you. Hang in there. Try your best not to let their confining you generate seizure activity. I know it's hard. Thanks for sharing with us.

angie
 
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lckyedd responded:
Hey Buddy how are you,hope all is well,PLEASE be patient. I am 48 SWM,Diagnosed w/epilepsy around 5yr old. Was basically seizure free till around 20yrs later-seizure;then all fine. OEM Dr. Retired,new Dr. seeing me is an IDIOT !! Basically he started up my seizures-change in Meds. Tests etc. Well he caused me to lose career-AUTO MECHANIC-loss of ALL LICENSES now. Collect unemplyment but now set to run out!! Disability-well been told NO,why,dont know?? I am just stressed out and dont know to do;always sitting home,cant go nowhere. Wish you BEST of luck andplease-FIND a DR. who knows-PLEASE. ED write back,nice to talk w/someone
 
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joeyc123 replied to lckyedd's response:
Hi Ed. Its so hard finding a good Dr. I allegedly had one of the best epiletologists in the Chicago area. Well you saw my first post LOL. I've seen a few Doc's now. I found a neurologist I really like now. However, my fly by night insurance won't cover anything. I just found out my insurance that will begin next month from work isn't going to be much better. I am making very little money. I am trying desperately to get help from the state of Illinois. In the winter they told me I made to much last year. I told them that was last year! I went from 75k a year job to making making 24k if lucky now.

A great neurologist actually found me on Facebook EP page. He has helped me more then the Doc's have here. I've had something unusual occur now as well. Lost 20 lbs in 14 days. Haven't been sleeping and can't sit still. Apparently now my thyroid is in overdrive. Apparently the nice Dr on facebook informed me this is a bad combination. He says this can become a lethal mix, Ep and thyroid. So, now more then ever, I need testing and help.

I'm sorry your sitting and trapped at home Ed. I'm guessing your like me and living in the suburbs, or maybe your in the country. Its so hard when there are no buses, trains, or taxi's cabs everywhere. You can only read, watch so much tv, do so many chores, and surf the net before you've done it all and are bored out of your skull.

Good luck Ed! Contact the state and county you live in. Also contact a local EP group or state group. There are volunteers that help you get benefits and meds. Keep the faith Ed. I'll keep you in my prayers.

Joe


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