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Annette Annette is offline

Getting Comfortable

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Showing Visitor Messages 1 to 8 of 8
  1. gnault
    04-23-2016 06:03 AM - permalink
    So I got your reply to my neurologist appointment. The funny thing that happened after Ieft the appointment was that Iost my car. I got out to the street stared into space and said to myself "I don't know where my car is?" I didn't have a clue where it could be. I walked up and down the streets close to the hospital for about 15 minutes and I finally found it.

  2. gnault
    12-10-2015 05:31 AM - permalink
    Hi Annette
    I'm still new here but its almost what you could call comforting to connect with people that have epilepsy. I often live my life almost forgetting that I have epilepsy as I am pretty much seizure free. Every so often it seems that I am reminded that is still there lurking when I'll have a few auras. It feels kink of freaky when all of a sudden your walking on air or feel like your floating.

    Looking forward to reading your posts.

  3. Screamy
    07-23-2011 10:09 PM - permalink
  4. Bernard
    07-24-2009 08:52 AM - permalink
    Happy birthday!
  5. Elaine H
    06-12-2009 01:47 PM - permalink
    Elaine H
    Hi Annette

    I'd love us to be friends, I am looking forward to hearing from you, and us getting to know each other, I hope that you have found CWE as supportive and helpful as I have, especially when I was going through my second lot of brain surgery last June, they sure are a great bunch of people, and of course, we all have that one special thing in common, we simply understand each other, and boy, that is so very important isn't it? I always say, that no matter how hard we try and describe our epilepsy, auras, tonic clonics, whatever to people that don't have epilepsy, they have no idea how terrifying it can be for us do they?

    I look forward to hearing from you, and I hope all is well with you at the moment?

    Best Regards

    Elaine x
  6. Chris515
    05-07-2009 07:19 PM - permalink
    Hi Annette,

    I remember feeling that tired when I was on Lamictal and Tegretol. At one point I was
    on a full dose of both and I was officially sedated for a week. I don't remember much of that time...

    I hope your visit with your neurologist goes well. I feel the same way, I'm always nervous seeing mine too. The uncontrolled feeling is sure scary, isn't it... especially when I get stressed out. It feels more likely that something will happen.

    I've still been getting the minor auras often every day... the feeling that a partial simple is going to happen, but then it doesn't... for me it's often a burning feeling in my chest and a strange feeling in my head. I had a PS at work the other day, it was awkward as I was training someone and I just stopped talking in mid sentence and had to leave. But no PS's for two days now! I'm on a streak. Still plenty of auras but I guess I can live with that.

    I think a lot of it is random. My seizure patterns have changed so many times. From having only partial simples to only having tonic clonics, to having nothing and back again. I really hope things will get better for you soon.

    I hate telling people too! I know how you feel. I had to tell everyone I work with, and I was so afraid that people would look down on me. It was like that during school, I guess things like that can stay with you. I'm so glad I found this site too, it makes dealing with this so much easier.

    It's hard to deal with this every day. I don't know anyone in person who has epilepsy, so they don't understand what I go through or how I'm feeling. How can I describe how an aura or a PS feels?

    I hope you're doing well.
  7. Annette
    05-05-2009 01:27 AM - permalink
    Hello Chris:

    Thanks for sending me your message.

    After starting Keppra on top of the Lamictal, for the first two weeks or so, I felt extremely tired. I would just literally collapse on the couch. This is one of the side effects that I had.

    I am about to visit my neurologist this May 12th. And I feel anxious because I had 2 auras each followed by lapses last Feb 2009 and another one last March. I suspect that I have lapses about once or twice a month and just cannot recall if I really had one, which means I'm not controlled. Ugh! I'm anxious about what he may suggest I should do about this. Grrrrr...

    I hate telling people I have epilepsy. So I don't even try. I feel scared that I may have one in front of them. I am sensitive about how they may react to my illness. I read posts here so I can see how others like you deal with these issues. I have found comfort with the knowledge that I'm not alone.

  8. Chris515
    05-04-2009 09:02 PM - permalink
    Thanks for the advice Annette. The auras are sure scary, aren't they... I've been having them since friday. I had another seizure sunday and two today... one at work.

    It's so hard to describe these feelings to other people, isn't it? I try to explain how the partial seizures feel to my parents, friends, etc and I just can't get my point across.

    So how is it taking two medications instead of one? Is there anything I should expect?

    Thanks for your help!

    I hope you're doing well.

About Me

  • About Annette
    Seizure Background
    Complex partial seizures since 1987 (2 GTCs and auras) Lamotigrine 400mg/day. Lacosamide 400mg/day.
    Princeton, NJ


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  • Last Activity: 10-22-2016 11:09 PM
  • Join Date: 02-17-2008
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