How do I cope With My Epilepsy?

Question

I'm struggling to come to terms with how much this condition (and those wretched pills) have ruined my life. I used to work 5 days a week, party hard on Fridays and help my Dad run his market stall on Sundays. Now all I have left is the markets and my Dad worries about me doing them! I just want to cry sometimes because I don't know what to do. Has anyone got any advice they feel would help me?

I am on pills (Dilantin) and I have tonic clonic, myoclonic, atonic and absence seizures.

Thank you, Rosie.

I wasn't sacked or anything! I'd just like to add that! I had to quit when my pills suddenly stopped working. I was a lollipop lady, I walked the kids across the crossings to and from school.

I'm just so sad that I can't be the same head-strong person person I was before.

Answer 1

I totally feel where you are coming from. I am sorry you are having a hard time. I was left with a siezure disorder after brain tumor surgery. I had a golfball sized tumor in the inner medial aspect of my rt. temporal lobe. The surgery saved my life, so I really do try not to complain much about my disabilities-so many out there got off far worse than I did. My main type of siezures are the absence siezures, but I have had 2 grand mal siezures. I am on tegretol and it has really cut way down on the activity. But I still have my bad days, and my doctors say I cannot work, though I often think about going behind thier backs. I was working 2 jobs 7 days a week until this happened. It was like hitting a brick wall at 100 mph. 2 weeks after getting out of the hospital, I was calling my 2 jobs, begging them to let me come back. They said I was crazy, that I didn't just have a tooth pulled, I had major brain surgery. I had a meltdown and my mother had to come get me and take me to her house and lock me in a bedroom. I was the primary wage earner of my household as my husband had a severe back injury which has left him disabled and unable to work, and of course, we are still waiting on his disability. I filed for disability a week before my brain surgery (Sept. 1, 2006), I figured if I survived, I would probably be out of commision for a while, and have yet to hear anything. I got my first denial a couple of months ago and now an atty is working on my appeal. SS says they don't consider me disabled, but teh doctors say diferent. I wish someone would give me a yes either way. I'd rather be working really, when you have 3 kids who grow out of things avery 2 weeks, it is hard to be stuck on a fixed income, not to mention, I LIKED WORKING. It has been a hard adjustment from going to the role of caretaker to the one who needs to be taken care of. I hate it. If it wasn't for the help of some wonderful, Godly people in my community who have been paying our bills since this started (without me even asking-I am too prideful to do it, even when I need to), we'd be living in a cardboard box.
I wish I had some advice to give you on what would make you feel better, but I myself find it to be a work in progress. I do find that it helps to just focus on being thankful that I am here to complain. Things could have turned out the other way, and I would not be here watching my kids grow and be with my husband. I try to see this as a much earned vacation after being a workaholic.
I hope you can find a balance in your life that will make you feel better about your condition. If I figure out what that is, I sure will pass it on. Good luck and !

Answer 2

Hey Rosie

Sorry to hear that your epilepsy is getting you down. There's no reason why you shouldn't still party - it doesn't stop me.

Also, your employer should show understanding and support. He is not allowed to discriminate on the basis of disability (even if the disability is hidden, like it is with us).

I've been taking Dilantin for 17 years, and I also take two other meds (I've tried lots of others). I currently take 9 pills every day, but I've taken 14 a day in the past!
My tonic clonic seizures have been controlled for 8 years (yours will be controlled eventually too), but I have lots of atonic and absence seizures. Doesn't stop me having a life though.

Answer 3

Understanding your condition can help you control it. Be sure to take your medication correctly. Don't take it upon yourself to adjust your dosage levels. Instead, talk to your doctor if you feel something should be changed.
It's also important to keep a detailed seizure record. This record can help your doctor better understand your condition and direct your treatment. Each time a seizure occurs, write down the time, the type of seizure it was and how long it lasted. Also make note of any unusual circumstances, such as changes in medication, increased stress or other events that might trigger seizure activity. Seek input from people who may observe your seizures — including family, friends and co-workers — so that you can record information you may not know.
As with many chronic conditions, maintaining your overall health is an important step in controlling epilepsy. Sleep deprivation is a powerful trigger of seizures. Be sure to get adequate rest every night, and make a conscious effort to eat a balanced diet, exercise and manage stress effectively.
Excessive alcohol consumption may trigger seizures. If you have difficulty avoiding alcohol and cigarettes, ask your doctor for help.
Wear a medical bracelet to help emergency personnel. The bracelet should state who to contact in an emergency and what medications you use. Any allergies to medications also can be noted.
Please see the web pages for more details on Epilepsy and Phenytoin (generic name) Dilantin (brand name).

Answer 4

Hi, Rosie. Patti Ja's answer makes lots of sense. I hope you'll feel better. Good luck.

Answer 5

www.Epilepsyadvocate.com
there are numerous support groups on line...and that may help you more than a lot of answers from people who don't understand where you are coming from...

Answer 6

see if ur dad wants u to do this for him then go forward for it