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Old 01-21-2008, 11:40 AM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
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Red face I i'm new and


Hi my name is wendy I been having epilepsy since i was 1 yr old (grand mal) I'm 35 now. For a long time I took epamin and fenobarbital. I was also on depakote and it made me feel horrible as well as Topamax that I am currently taking. Do you have any suggestion of why? I notice that I have anger issues latelly? do you have any suggetions of new meds that i can ask my doctor?
Also, do you drive? Has you doctor talked to you about taking away your driver's licence? I live in Alabama, and here they(doctors) can take it away from me.
also, have you ever felt depressed? I am right now! I'm getting tired of this illness.
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  #2  
Old 01-21-2008, 11:51 AM
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Hi Wendy - boy do I hear you, and I am not the one having the seizures. My daughter does. They hit her a few months before HS. We haven't found a med that is acceptable to us yet. For now we are working with nutritional changes, hormones, and I hope to try neurofeedback this year.

Are you able to work? I have heard from many that anger is a side effect of some of the medications. I think anger with the illness is common too. Rebecca was on one med that made her have suicidal thoughts. When I found out that was a side effect of Gabapentin we decided it wasn't a good fit for her.

Driving is an issue here too. Rebecca won't be able to get her license until she is at least 6 mo. free of seizures. I want her to be 1 yr. free, it isn't worth taking the chance.

Do you have family or friends that are supportive?
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Old 01-21-2008, 12:02 PM
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I am on a few things (including Topamax) and I have anger issues(this one is definately medication for me...), anxiety problems, depression (I was supposed to be starting a med called Effexor XR [simple partial?] because of how depressed I've been lately) I don't know whether to blame the meds or whether all of these things are happening just because of whats been going on lately...

I threw a text book at school because all of a sudden I just got mad...
It's getting kinda dangerous
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  #4  
Old 01-21-2008, 12:07 PM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
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Unhappy


just my family but they live in México. I'm from Cancun and sometimes i wish they were here with me. I need my mother's arms i feel too alone here.
anyway, I'm about to finish my teaching degree in Spanish and I still can drive but my doctor is thinking about taking it away, I'am so upset right now. No medicine is working and anger and frustration is talking a tool in my marriage. I had suicidal thoughts before, not now. however, lately I've been feeling way down and i just don't want to get out of the house. yesterday I went to the movies to watch Cloverfield....well i just couldn't stay .....the movement... the way the movie is filmed...I started to feel like i was having a seizure. My daughter and son notice it, she started to cry. I really didn’t them to notice but it was just impossible. My son wanted me to see the movie, I had not idea that the simple way the movie was filmed was going to affect me so bad. Sad.
I left the movie and went for a walk, i felt better after a while.
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  #5  
Old 01-21-2008, 12:10 PM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
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Red face


thank you for your comment. It feels good to know that I am NOT the only one feeling depressed.
thank you.
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  #6  
Old 01-21-2008, 12:11 PM
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Talking


Hi Wendy,

We seem to share similar backgrounds, although I'm older by 8 years. I, too, have t/c's (grand mals) and I started living with ep at the age of 13 months, but I live in Indiana. And yes, I've dealt with anger and depression. But the depression meds they put me on made me suicidal.......so, no more of those for me! I just get to talk a lot.....writing books has helped me a lot, too. Before that, I would write in journals......

I've been thru 14 or 15 different meds so far....now I'm on Topamax and Carbatrol.....and they're working wonders for me. I've not had a seizure in almost 5 years. And yes, the docs here can take your license from you, too. But, my doc is willing to work with me.....probably because my szs only happen in my sleep. When do your szs happen? Are they random? Or is there a set pattern?

And before I forget........WELCOME TO CWE!

Meetz
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  #7  
Old 01-21-2008, 12:22 PM
Getting Comfortable
 
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Mine are mostly during my sleep, however sometimes i have minors during the day. you know.. I can see the aura, black spots on the left corner of my eye and that is concerning if I'm driving. I stop, wait until is gone and continue driving. I also take 1gr of xanax to be able to sleep but lately I have been feeling neck pain and headaches. I was involved in a 4 car crash 6 years ago and then i did not need medical attention. and I haven't told my doctor about it, do you think this is relevant?
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Old 01-21-2008, 02:02 PM
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Wendy!

Welcome to CWE! I am just wondering if
you've ever discussed with your Neurologist
or Epileptologist regarding how you are feeling
and I strongly recommend that you keep a log
as well. Sometimes these emotions can run
during the peaks when the medication runs at
its highest; and by keeping such logs or diary,
would give the Doctor the general idea. It is
not unusual for people with Epilepsy to also
have emotional issues steaming from Epilepsy
or from medication(s) that they are on, so this
is very important. Hope this helps!

And feel free to make yourself a home here!

Here's a Rose to brighten your day!

__________________

Sharon

Advocate & Member of


Head Storms - Resource Center
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  #9  
Old 01-21-2008, 07:05 PM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
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Red face


Thanks I will keep it in mind when I see my doctor next time. I never thought about keeping a journal about it but I will do so.
Thanks everybody for all your comments, it feels good to know I have somebody who I can speak to, especially when I feel so blue.
wendy
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  #10  
Old 01-21-2008, 07:42 PM
Getting Comfortable
 
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Location: alabama
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Red face


I was told today that I have a neck sprain in my neck due to a car crash, does anyone know what i can do to reduce the pain at home? any home remedies? I had no idea that something that happened 6 years ago could hurt so much now. is anybody in a similar situation?
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  #11  
Old 01-21-2008, 08:44 PM
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I had one happen 40 yrs ago and I deal with it often. Have you looked into chiropractic care? I wish I had then the neck would have healed properly, but I was a kid and it wasn't suggested at the time.
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  #12  
Old 01-21-2008, 08:46 PM
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Wendy,
My name is wendy as well! Crazy! Actually not too unlikely but I thought it was kinda neat. I am 25 and started having them at 24 when my son was 5 MONTHS OLD! This was back in august. All the meds I was put on did SOMETHING to me. Topamax-lost my MEMORY! I could not live with that. Lamictal-got a rash. Keppra- My lips swole like crazy-went to ER and my airway started to close. I also would fall asleep eating like mid bite with this drug. I hated it. Depakote- I blew up like a whale. And I truly did not like that. I think there was another one but not remembering. My memory still kinda sucks I guess the seizures do a number on you. I have tonic clonics-with no warning whatsoever...seriously. My last one was in wal-mart. My husband and I were chatting. The next thing I knew I was sitting on a bench and I was like what's going on? He said...you had another That's his thing he always says when I have one and I just get so down and scared to death. Long story short I fought like crazy to get a VNS and so far its awesome. Its a stimulater they put in to help interupt the activity in your brain. I am now only on Klonopin (very low dose) for That was from august when i was diagnosed to when I had the surgery Nov 27. But I am a fighter and I wanted as little meds as possible bc I am of child bearing years as u are too. I just hated the meds. About the depression- I have many bouts of it. We have a full time live in nanny cause I cant take care of my son right now.
Driving-In Texas you cannot drive 6 months from a tonic clonic. No ifs ands or buts about it. Its horrible for me. But we are all in the same boat. Sorry so long. I just thought my story might help!
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  #13  
Old 01-21-2008, 11:49 PM
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Hi Wendy! I'm 36 and have had seizures (grand mals) starting at around age 3 (head injury). Welcome to CWE. There's alot of people here that can help with questions you might have. I'm a teacher in California. Brain was right. Keep a journal. Keep track of what you eat and drink everyday, as well as when you have a seizure and what you were doing right before it. Maybe you can figure out your triggers that way. My hubby has been really supportive. He works nights, and always makes sure to go to the doctor's office with me. That way, he can ask any questions that he might have, and remind me of anything I wanted to ask. My memory is not too great. Hold on. This thing hasn't got you licked yet. My hubby and I call my seizures "the funky chicken". It looks like I'm break dancing to music that only I can hear. I alugh about it. After all, there's so many other things in life that can make you feel depressed, that sometimes you really just need to be able to laugh. Check out the alternative therapies in the library here. And talk it over with your doc and your hubby. Trust me, I know epilepsy can be tough on a marriage. It hurts when I look up in my hubby's eyes and I see the worry. But then he smiles, and I know that I'm okay and that he's there for me. As for the movie, I'll make sure to not go to it. One of my triggers is strobe lights. So I stay away from anything that has fast flickering light effects. Anyway, welcome again, and feel free to ask any questions.
__________________
"Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it will become your destiny."
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  #14  
Old 01-22-2008, 07:33 AM
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Hi Wendy (wferraez), welcome to the forum.

If the anti-epileptic drugs you are taking are not controlling the seizures and are giving you intolerable side effects (anger/depression), you need to talk to your doc about options for a different treatment.

There are some alternative treatments that you can look into that your doc likely won't suggest (including diets, CBT and EEG neurofeedback). See the chart in my signature for more information.
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
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  #15  
Old 01-22-2008, 08:37 AM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
Posts: 13

Red face


WENDY! it is SO COOL we have the same name! my symptoms when i am about to have one is the aura and black spots like flickers as you mention on the left side of my left eye. Weird! But it just to be just like you when I was a child and they were truly scary for everyone involved. How did you feel on klonopin? Any sides? No gain weight?

Skillefer thank you for you comments, I call it “ my break dance” or “my hip hop dance” and my children love it. They just don’t want to hear the word “Seizure” it terrifies them.

Bernard, I will check on those alternative treatments, I am willing to anything. I dream of having ONE very good night of sleep seizure free! Last night I woke up twice, ahhgg!
However, thanks to you gays my humor is changing, I feel a bit better today.
THANKS!!!!!
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Old 01-22-2008, 08:40 AM
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Something else to consider if most of your seizure activity is nocturnal:

a third or more epilepsy patents also have sleep apnea
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Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
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  #17  
Old 01-23-2008, 10:45 AM
Getting Comfortable
 
Join Date: Jan 2008
Location: alabama
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Smile


RobinN, I am seeing a chiropractic right now and I hope that it gets better.
Bernard, that that you mentioned, I do have sleep apnea! I never thought of it as related to epilepsy
thanks.
P.s. My doctor took me off Topamax, any body know meds that can control "it" without gaining weight? or that has less side effects?
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