First let me say, Your story is one that so many of us can relate to. You have had pain and your share of suffering. I hope you can find some solice in the fact that most of us have found comfort in the friendship and bonding in those with similar problems. Although I have not had tc seizures, I have read about the many people here that have and it has helped me to understand a little bit about what others go thru and maybe a little bit about what I need to do to improve myself. You don't have to put on your false airs here. You can feel free to express and vent your feelings to us like you did. All of us have done it. Everyone here will give you support. Come here to say what you need to say. Someone will always listen to you to support you. And you can always say something to someone else to support them. If something really bugs you, don't keep it bottled up. It's just going to be like a pressure cooker inside you.
About your initial diagnosis- I really encourage you to read some of the postings from other people when you have time. When I did, I couldn't believe how people had similar experiences as mine. It made me feel like I wasn't alone in the world. And you aren't alone. That's why you should come back. I too had my first seizure in my 20's. It wasn't something that I realized at first. I mean, who is going to say to themselves, " oh, I must be having a seizure" when the first sign is NOT falling down and shaking all over the place? I thought I had wierd indigestion with out of body experiences for several years. People brushed it off as me just trying to get attention. Now I'm going to have my left temporal lobe surgery in a matter of months - it's been a long road for me, but I can some light at the end after 25 years of all this.
About your seizure pattern- I know mine was somewhat related to my period and seizures were often in clusters of 4-6/day. It took me a day or so to recover from the following confusion but your pattern I'm not familiar with. Hopefully other people have something to say regarding their own experiences.
About your Life/Depression/Crappy Things in General- Others here have lots to say about that. That's one of the biggest reasons why we're all here. On the outside, I may have to put on my "happy face" for people, but I'm glad that I can come here to complain/vent about things that bug me... I can ask for some advise...get a (((((hug)))) when I need it...
Life is like a mountain. The Road will be rocky sometimes on the way up, just put on your seatbelt. The view's great on the way down.
Come on back, man, we're here if you need to say more...
thanks so far... anyhow, there's more. i'm always getting injured during these things, most recently a dislocated shoulder and a black and blue face from falling off of the bed during one. i also have a tendency to get very frightened and violent during some of them, and that's why i'm afraid that i'll end up hurting someone someday. i don't have a lot of money to do things, (i'm on disability), and my injuries keep me from my hobbies... it gets pretty boring around here, and when i'm bored i spend a lot of time thinking and worrying... i don't really enjoy things that i used to anymore. for example, reading. because this disease also robs me of a lot of my memory, i'll read half of a book and have a seizure, and i won't remember most of what i've already read... only fuzzy details. so, you can only start a book back at the beginning so many times. do a lot of you get injured during your seizures? does it rob you of your memory? does anyone get violent, or do and say embarrassing things during them? do a lot of you know what caused you to get epilepsy? do any of you have control over your seizures?
i spent a week in the hospital for video eeg monitoring and they couldn't pinpoint the exact origin of them in my brain. i've been on about six different meds with no success, and right now i'm on 800mg of lamictal per day.
Bummer that you have gotten the injuries in your falls. The bed- you may have to put something like siderails up to prevent you from falling out and injuring yourself if you have a tendency of seizing in the night.
Although I don't completely lose consciousness, I do have amnesia of the event during a seizure and therefore I can't do some of the things I used to love doing, like swimming, riding on carnival rides (except the slow ones), and the ski lift. Climbing on a ladder is out of the question. But I have learned to compensate whenever I can. Avoiding dangerous situations has kept me out of really big trouble. (And probably luck). A bruise here or there is all I've had.
What I do in a seizure: Violent - I am not, frightened -yes, so bad I think I am going to die. Talk during seizures: I try to talk, but it's all jumbled up.
When things took a turn for the worse for me a few years ago, and I lost my ability to drive and lost my job, I was in a state of shock. I basically just sat at home and literally just cried for the first 6 months. But, slowly, I came out of it and started to do other things. It really helped me to develop other hobbies. Like you, I loved to read -starting a book was the easy part , it was finishing it that was hard.
The one thing that I can say about my loss of memory that has worked to my advantage is- when I sit down to watch a tv show with my kids, they moan and groan when they see it's a rerun of their favorite show- but due to my poor memory, it's like a new show to me!
The origin of my seizures comes from a cavernous angioma in the left temporal lobe. Unfortunately, the 8 meds that I've been tried on just haven't been the answer that I'd been hoping for. So, surgery is next for me.
Tracy (Daisy9980) is a real inspiration for us all. She didn't give up her dreams of nursing school and it's her positive attitude that helps a lot of us to walk a little taller . Thanks Tracy.
Don't give up on finding out what's causing your seizures, Rob. It was 8 years after I was diagnosed with epilepsy that a neuro finally found the angioma causing my trouble. You have to talk to and feel comfortable with your doctor. If you Don't, for any reason, it's a good time to look for one that will listen to you.
You're so right about seizures messing with your memory. I wish I had a dime for all the times I forgot something.
Crossword puzzles? That's a good idea. I also love the puzzles in the the USA weekend magazine in the Sunday paper called Frame Games. I think doing anything like that helps keeps those neurons dying out. I bet your 83 yr old mom is pretty sharp if she can do crossword puzzles.
Michelle sounds like a special lady. How often is it that someone can give so much and not say, " don't apologize". She must think a lot of you too. You must be doing something right to have her love you so much! I hope that you can enjoy going for a walk with your dog, Miles when the weather is nice. He sounds like he is a good outlet for you. It's been proven that a pet can help to alleviate stress and help in healing. A pet can give so much love and they ask for nothing in return.
I used to watch a lot of tv and found that I was a zombie after a while and then it made me feel like I was wasting away the day, so I watch only my favorite shows now and do other things, like listen to music and read the paper, play my guitar ( I get free music off the internet to play) and read a lot. (I don't do crossword puzzles but I think I'll try that, Mary.) I like to do things outside when the weather is nice too like Mary and you. Since I am a fix-it kind of person I find more satisfaction in doing things around the house than sitting sometimes.
Rob, you say you do martial arts. That is real neat. Have you ever done tai chi? My husband does and he says it is actually a form of martial arts, done very slowly, and takes a lot of skill. He does it in a class and the instructor goes around the room and if you are in the proper position it appears like kung fu moves in slow motion. I think there must be several different forms, I'm not really familar with it ... do you know much about it? Maybe you might be interested in it since it would be something you would be familar with all the moves already.
Take one day at a time, look straight ahead, keep your head up and keep positive. YOU CAN DO IT!
I've been reading your posts and found them quite interesting.
Everything that you have described so far, I have experienced myself. As a result of yuor meds or the condition itself, have you ever had an outerbody experience?