defeatism is my only friendster

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defeatism

defeatism

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Let's see, I'm terrible at talking about myself, so how about a listicle?

  • Twenty-seven years old; 8 years of epilepsy trial and error
  • Dual citizen (Canada and U.S.)
  • Originally from Montreal - bilingual francophone
  • My U.S. home is in New Orleans, though I'm in Miami these days
  • Poutine enthusiast
  • Also suffer from major depressive disorder and generalized anxiety disorder. Fun times.
  • Three-quarters of the way done with college, until I had to take a "sabattical" because of the seizures and memory problems

Currently headed towards surgery as a remedy, as none of the AEDs I've been on have worked.

Have dealt with discrimination because of my seizures - I've had potential roommates turn me down, and I was even forced out of a university simply because I spoke with the disabilities coordinator (she went ahead and told the administration without my consent). Emotional detachment is the key for me at this point.
 
Hi there and welcome! So sorry to hear of your troubles at school, we're just beginning to experience this with our 12 yr old daughter. How on earth did you get forced out of a university for talking to disabilities coordinator? Is there no right of privacy in that situation? I told the medics on the phone when my girl had a seizure at someone's house and was injured that she had been prescribed something by her GP for sleep, they marked her as having "psychiatric problems" based on the script and only God knows what they said to the family. The discrimination I see as the mother of a young girl is frustrating, hurtful adend infuriating--I can only imagine dealing with it first hand.

What type(s) of seizures do you have? How soon is your surgery? Good luck, I hope it helps. I know there are a few members here that have had one that should be along to share their experiences. This is a very warm, welcoming group so make yourself at home.
 
Hello, and welcome!

I'm so sorry for everything that you are going through.

If your university is in the United States, what they did to you is illegal. They can't discriminate based on disabilities.

Hang in there. Things are bound to get better soon.
 
Hey defeatism...
Welcome
Something to ponder... poor nutrition can cause seizures and psychological problems. Certainly should be something to consider if medication isn't working.

Making nutritional changes has helped my daughter.
 
welcome to the forums.

the depressions couid be a result o side-effect of the meds. watch the times you take them and make sure you take extra care of yourself. the usual no-no's for epi's. no alchohol, lots of sleep, lots of fresh air, lots of relaxation. treat it as if a diabetic being extra careful of what she/he eats.

if you are sure the disabilities coordinator did that, you can take action against the university and the coordinator. confidential couceling is part of their job.
 
Welcome and howdy :hello: This is the place to come to when you need advise, a shoulder to cry on, or you just need to blow off steam. Everyone here helps everyone else. No need to feel as if you can't say whatever you need to. That university sucks! Probably good to get out of there anyway!
 
Just wanted to pop in and say Hi to a fellow MTL'er and poutine lover. It took many doctors and many drugs before I found a mix that kinda works for me. I'm not seizure free but they seem more balanced.
 
UPDATE:

I went into the hospital for my video EEG, went into "status" for half an hour, but the attending epileptologist decided to let it go for a few minutes so the neurology residents could see what it looks like. 25 minutes later they gave me some IV Ativan to stop it. Good thing it "only" caused acute kidney failure on my right side, so I have a whole new problem to deal with. Oh, and a bronchial infection. Did we find any new information? No.

Thanks University of Miami Miller School of Medicine! Back to...the same exact medicine regimen I was on before.

@RobinN - I've tried changing my diet and routine, but it hasn't made a difference. Getting a full 8 hours (or more) of sleep helps the most, but I plan on going vegan again to counter the negative aesthetic effects of the meds.

@everyone else - I checked, and of course what the university did was illegal. But it was a private school in a small midwestern town, so nobody really cared when it brought that point up at the state level.
 
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The hospital has insurance. Maybe you have some other options? If they caused a medical problem for you, they should at least pay for your treatment.
 
I have great insurance (TRICARE), so I didn't have to pay for the hospital stay or medicine, but I now have more problems than when I started, which sucks.
 
defeatism said:
... I checked, and of course what the university did was illegal. But it was a private school in a small midwestern town, so nobody really cared when it brought that point up at the state level.
Click to expand...

If you have a valid claim, there is a lawyer somewhere willing to take your case.
 
Been a long month getting back to normal. Or "normal." Upped my Keppra dosage and thankfully my kidneys had only some minor damage from the elevated CPK. Dug into the full report from the hospital and found out the seizure caused my heart to stop briefly, so now I get to add that on to my list of concerns. Talked to a lawyer and going up against the hospital would be absolutely pointless, so I'm getting out of Miami since I absolutely hate it here. Heading back to New Orleans in January, probably for good.

Changed my diet recently, especially when I was sick with the acute kidney disease. Now I'm drinking a lot of Gatorade and water to flush out my system and get control over my electrolytes (neurologist approved, of course).

The only new thing I've found out is that the TLE has caused some pretty moderate hippocampal sclerosis which explains A LOT about my memory loss and function over the past 2-3 years. Hopefully if I start seeing a neuropsychologist and work on strategies for actually being able to function, I can return to university. My regular therapist has been a miracle worker in terms of getting me through the past month in one piece. I'm definitely not having the partial seizures as much as I used to, and no tonic-clonics, but now the challenge is my memory. Some (most) days I feel like Jason Bourne, minus the assassinations and stunt work.

Thanks everyone. Merci tout l'monde.
 
Hey defeatism, just thought I'd add my welcome to the others. So sorry about your mistreatment at the hand of folks who should know better. Sometimes having epilepsy is one long AAAAAAAAARGH of frustration

If you do return to the vegan diet, consider taking a B Vitamin complex with B12 (if you don't already). The B Vitamins are great for the brain, and B12 is especially important if you are vegan. In my case, the B12 also helps with what the Lamictal I'm taking does to my CBC.

Best,
Nakamova
 
Nakamova said:
Hey defeatism, just thought I'd add my welcome to the others. So sorry about your mistreatment at the hand of folks who should know better. Sometimes having epilepsy is one long AAAAAAAAARGH of frustration

If you do return to the vegan diet, consider taking a B Vitamin complex with B12 (if you don't already). The B Vitamins are great for the brain, and B12 is especially important if you are vegan. In my case, the B12 also helps with what the Lamictal I'm taking does to my CBC.

Best,
Nakamova
Click to expand...
Thanks! I'm slowly getting over the B.S. from the hospital - had to get a new neurologist and everything - thank God for my therapist...like I said, miracle worker. I already do take a B-complex vitamin daily, but to head off any strange effects/mood swings from the Keppra. I also used to be on Lamictal until it crapped out on me two years ago.
 
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