Support: Why Me?

[m0996050]

I was diagnosed with Generalized Epilepsy at the age of 13( 8 years ago). Grand Mal seizures monthly, and Petite Mal daily. I was initially prescribed Depakote ER 1,000 MG daily. This medication worked very well, I was averaging 3 seizures a year, I took this for 6 years. At the age of 18, I was taken off Depakote because of the negative side effects, and damage it causes the body. (Liver damage, Weight gain, Menstrual and Fetal abnormality. ) I am now 21 and have been taking Keppra, Lamictal, and folic acid, with minimal results. I have petite mal seizures, around 30 a day, and two Grand Mal seizures monthly.
Treatments

Lately my seizures Petite Mal and Grand Mals have both increased in frequency. I've always viewed myself as just a normal girl, but now that I am an adult everything has really hit me in the face. I left for college at 18 stayed until I was 20 and then had to move back home because of Epilepsy. I have worked since I was 16, and at each place I worked were tolerable with my extended absences so even then I just put epilepsy in the back of mind. Each job I have had, I've ended up loosing because the company just can't handle so many absences. I was working as a cashier at Walmart in January 2012, but was let go becuase of Absences(of course), and now have been approved for Disability. I have intended to be on Disability, I love to work. As soon as I was approved I saw my life in a whole different way, I feel like I cannot live how I want. Im trapped in my parents house, becuase I am likely to be severely injured or killed with the amount of grand mals, I cannot drive, so I am a burden on my family. I am in college, but once I graduate I will not be able to hold a job, seeing as though I cant even hold basic jobs. I only receive 500 a month for disability. Due too wear a tear from grand Mals, my shoulders dislocate daily, my boyfriend takes care of me, help me get dressed, re-sets my arm when neccesary, and is constantly on the alert. He is leaving this month for the Navy and will be gone 9 months off and on.

Lately all I can think about is how wrong my life is and how unfair it is that I am cursed with this condition. This is not how I pictured my life at all, I am severely depressed, and i don't know how to overcome this sadness, I used to be happy and with Epilepsy.

 

[acpollard2010]

trust me i have the exact same seizures as u do and i to loved to work and tried desperately put epilepsy out of my mind but like u always depressed cause i cant do what i want cant leave inside the house.i got approved for disability as well but to me it was like a kick in the face sayin well u cant do anything but have seizures and be a burden to my wife causwe my family really dont care it seems besides my mom who im staying with til me n my wife move out of state and she dont know how to help i feal like im gonna die when im comin out of one i here her sayin and my stepdad sayin get up and hit my head at their house in a wk over 20 times not all gran mals.private message me if u ever want to chat

 

[Nakamova]

Hi m0996050, welcome to CWE!

You should talk to your neurologist about the depression you are experiencing -- it can be a serious side effect of the meds, especially Keppra. I definitely understand why you are depressed, and hope you feel free to vent here at CWE -- members really do "get it" about the isolation and frustrations of living with epilepsy.

I'm currently recovering from my second surgery to repair my shoulder after damage and dislocations that my seizures caused. -- you have my sympathies. Is there any chance you could have the tears repaired? It can be done arthroscopically, so the healing and the scar is minimal.

Best,
Nakamova

 

[Cint]

Have you been to see an epileptologist (an epilepsy specialist)? Having that many seizures a month is quite a bit. There are many more meds and treatments out there to try. And have you thought about counseling?

I started having seizures when I was 23 years old, out of school with my career on the way. A career in the airlines, and then one morning before work, in the shower a TC seizure hit and I was burned with the hot water. In the hospital for 2 months. I was married shortly after out of the hospital, to a pilot and moved 1000 miles from home. But had many more seizures and tried many meds, had brain surgery, 2 kids, more seizures, more meds, and now have the VNS, no husband and two grown, college educated kids, one married, the other going to law school. I live by myself now and still have an occasional seizure. I no longer ask, "Why me?" But it took a long time, lots of therapy, anti-depressants and patient, kind doctors and support groups.

 

[m0996050]

The shoulder surgery is something I keep in my mind as hope for the future. Ill have to get my seizures under control before a shoulder surgery becuase if not they will just continue to tear. Its really nice to hear other people are in the same position. Im a little nervous about counseling, and I am reallly shy, I don't know how to go about telling my neurologist about the depression, becuase I am afraid as coming across as an aggravation to them. I feel like they are there to get the minimal information needed.

 

[DadofTwins]

Welcome to CWE

m0996050,

Sorry about your situation. Many of us will agree with you that Epilepsy sucks. I agree with Nakamova, you should address your depression and the meds. Please try and grab hold of life. Feel free to vent and ask questions. You are among friends who understand.

Tom

 

[julie wishes]

Im a little nervous about counseling, and I am reallly shy, I don't know how to go about telling my neurologist about the depression, becuase I am afraid as coming across as an aggravation to them. I feel like they are there to get the minimal information needed.

Gosh hun, you should not feel this way. Its imperitive you alert your MD right away. He or she will probably refer you to a conselor, psychologist or psychiatrist. Your first visits will feel weird for sure, but then you will get used to it, and it can be very helpful. Counseling is way easier than taking all these meds and geting wires glued to your head. And keep in mind that counseling isn't just for people with HUGE problems... you can talk about anything in there. Everyday little stuff to big stuff. What ever you feel comfortable with.

A lot of people on here talk about keeping a journal of your seizures and any preceding factors to them. At the very least alert your MD to the depression, and increase in seizure activity. Give him numbers though. I.E. I've had 20 partials this month and 4 grand mals. If you are vague, he won't be able to help you.

I'm so glad to hear you have such an awesome supports system, and that you have stayed in school. Your education will never go to waste. I believe your family loves you. I bet they don't think of you as a burden. They may get tired of it sometimes (just like we do), but they will always be there for you. A counselor can help you sort these feelings out.

I'm so glad you found CWE. I hope you find it helpful. I wish you all the best.

Juls

 

[Eli]

Welcome! E is a rough rollercoaster, fortunately you have a great support team here.

I've been going through a rough emotional spell with the E lately. I had to move so I am no longer near any friends, my parents drop by occassionally and I am having to pay a taxi service to take me to walgrens (meds) and walmart. Summer heat seems to bring on more seizures and I feel like I'm living in a box.

Definitely talk to your drs about the depression. I keep reminding myself its a side affect of the meds and im not nuts!

Utilize your friends here, their support is wonderful and uplifting.

 

[huskymom]

You are way too young for so much stress. PLEASE talk to your Dr. about the depression. I did, and now I take prozac as well as Keppra and Carbatrol. It really helps. I also did consuling. Ya, it was weird at first, but that is what they are there for, and believe me, they have heard it all before! I am glad that you found us. BIG HUGS!!!

 

[jzavar]

Counceling is weird at first, but after a few visits you'll get used to it and actually look forward to it. It's nothing to be nervous or shy about
He/she is your doctor, he shouldn't make you feel like all you can tell him is minimal information. If he does, tell him anyways or find someone to listen to you. You do need to talk to someone about your depression, it can be dangerous...

Tell a friend, take them with you, they'll blurt it out for you.

 

[Ruth]

Welcome to CWE,

It was made by Bernard, out of love for his wife Stacy. The love permeates throughout the whole forum.

To prevent dislocated shoulders, I do aerobics every day. 30 minutes does the job.

You will find that this is the best forum for epilepsy in the world. You will get all sorts of support.