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Feeling Helpless and Lost

Thu, 09/23/2004 - 16:44
Going from one Dr. to the next and still unable to live a normal life. After being Diagnosed with Frontal lobe Seizures (epilepsy) I thought all my troubles would be behind me. I thought I would get on medication and everything would be normal, but it seems I was dead wrong. My life is in shambles. I no longer am able to drive and now due to the medication have short term memory lose. Everyday is a struggle for me. It seems that finding the right Dr. is harder than I thought. I have to depend on family and friends to get to apointments. and even a trip to the store is a hastle. I have a two year old daughter and an 11 year old son i can't get out of the house to visit with them because I can't drive so when it's cold out and rainy they have to suffer too. My 9 year old neice doesn't know how to explain what is wrong with me so she tells her friends her aunt has brain damage. My Dr. says I can go back to work if I want to but am limited to what I can do sence the medication has so many side effects and I am still having seizures. Also not being able to drive makes it hard too. I am trying hard not to let all of this get me down so please understand I am not looking for anybodys pitty, just some words of encouragment, and maybe other ways that some of you may have coped with your epilepsy.thank you for listening.

Comments

RE: Feeling Helpless and Lost

Submitted by mommy2kyra on Thu, 2004-03-11 - 16:54
Hi pieces,I know that it's tough. Until you find the right medication (or combo of meds) it seems that everything is against you. It took a couple of years for me to find my combo and dosage, it was very discouraging. But, I finally got the seizures under control...and a year later, I got my license back. There've been a few bumps since then: switching meds, breakthrough seizures, memory loss (that one seems to be unavoidable)...but you keep going. As long as you have a good neuro: one who you can trust, someone's who's willing to work with you (and keep going until you find that right med or combo, rather than run to DMV every time you think you may have had a seizure), and a supportive family...that's all you need. It will take time, yes. But you will be comforted by the love and support of your family, and that will get you through those tough times. Knowing that they love you no matter what, and they understand that you're not a dummy and that you do care (but you simply cannot remember certain things because of both your epilepsy and your meds) really will make you feel better. Try not to focus on all that used to be and what you now can't have. Instead, try to feel grateful that you have people in your life that care about you. Try not to let your niece's words hurt your feelings...I'm sure that it isn't meant that way. The biggest thing that helped me come to terms with my epilepsy was to learn as much as I can about seizure disorders and to use every opportunity I could to teach others about it. (For instance, I wrote and performed a speech on seizure disorders and their first aid for a class in college.) Many people really don't understand epilepsy, it's been that way for centuries, and it's time that we change that. Millions of people suffer from this disorder and it's social side effects every day. It doesn't have to be that way. We shouldn't feel ashamed and embarrased because we have seizures. I hope that I didn't sound preachy just now, but I feel very passionate about this subject. When I was about 10 years old, my mom and I were dining at a restaurant together. A man nearby suffered a grand mal seizure. I was horrified...I'd never seen or heard anything like that in my life! My mom told me that he'd had a seizure, but didn't really explain any further. The image haunted me for years...and 10 years later, I began having (complex partial) seizures myself. I continued having seizures for another 5 years before I had my first grand mal, and I was promptly diagnosed with epilepsy. Sometimes I still struggle with that negative image in my mind. I remember being SO scared that day in the restaurant, and how ironic that I now experience the same thing?? If only society knew more about these disorders, we could relieve so much shame and embarrasment!Best of luck to you...Take care :)Heather

RE: Feeling Helpless and Lost

Submitted by Bandcheryl on Mon, 2004-03-15 - 01:55
Hi, how are you doing? I understand what you're going through. My seizures just started for me three years ago out of nowhere when I was 19 and it felt like my life was taken away. I can't drive, having a job isn't too much fun. I know what you mean about not wanting anybodys pitty, also. There are lots of people that always tell me " Awe, you poor little thing. I feel so bad for you..." etc. I don't want anybody feeling bad for me like I'm passing away, I just want my seizures to go away and never come back. The best thing that I've been told from family and friends is that things have to get the worst they can get before they start getting better and that God gives the bad things to the strong people because He knows that they can show everybody else how to be strong and go through them. You know, at least you're showing your children how to be a strong, amazing person through rough times. You may think that they will never know, but my mom went through really rough times while I was growing up, and now looking back, I'm 22, I look at her as the strongest, most bravest mother ever. Well, I hope everything works out for you. Good luck and write back if you need to talk.

RE: Feeling Helpless and Lost

Submitted by tricichic on Wed, 2004-03-24 - 21:41
I totally hear you, I'm in the same boat...you're not alone:) It sounds like you have a wonderful attitude still. Like you said, having epilepsy can really be a downer, but if you think about it it can really be an upper as well. I mean how many people can actually say they are able to deal w/ the side effects that go along w/ epilepsy? I have had epilepsy since age 5. I'm a 22 year old female and will be earning my b.s. in sociology next December! I won't say its alll been a cup of tea...I have my days once in awhile. I havn't been seizure free since the age of 9, have been on the same 2-3 meds for at least 4 years, and on avg. have 3 nocturnal seizures /week. I don't know if I'll ever be able to drive--in NYS the law is 6 months seizure free. I have shared my story w/ almost everyone I know--it gives me more of an empowering feeling. The meds (and VNS therapy) sure don't do that job. I feel that the best medication for me ismaking sure that I always have a network of peopl esurrounding me. Whether they're physically present, over the phone, over email, or somewhere on campus/in my neghborhood. I always feel less stressed if I know I can count on others and lend a hand to others as well! If you ever feel helpless and lost I hope I can be involved in your network of support--w/o that no one (having healthy or not) can be totally stable.

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