Friday, December 13, 2019

S-E-I-Z-U-R-E

Welp, things are still up in the air regarding my seizure.  My visit with the neurologist was interesting - she was nice enough but matter-of-fact when she said that my EEG showed abnormal brain activity and therefore I have seizure disorder, period, end of story.  She didn't seem to think that the medications I'd been taking had any bearing on the diagnosis, and said that I would need to be on anti-seizure medicine for the rest of my life.

Now, I'm not saying she's wrong - obviously if the test showed that my brain wiring was firing funny, then it was.  But she didn't think another EEG was in order, or that the other factors might be a consideration in thinking this was a one-off issue rather than a permanent diagnosis, which...I don't know.  I'm not opposed to taking the medicine if that's what I need to do in order to prevent another seizure from happening, but it feels like there might be some more testing to be done, considering all that's been going on with my body this year. 

Unfortunately, we live in Hooterville and there aren't a lot of neurologists around.  And yes we can go to a bigger city like Houston or Austin or Dallas but I don't just want to make an appointment with a random doctor; a recommendation would be nice, you know?  Luckily I happen to have an "in" in the medical community via Amanda, my PT/boss/friend.  She's asking for recommendations from some neurosurgeons that she works with; so far, nothing has panned out but there may be a new neurologist in town early next year so we'll see if that might be an option.

Meanwhile, I'm still dealing with a double whammy of post concussion syndrome, which can last at least six weeks, according to both of my doctors, plus the whole wonky brain wiring/seizure thing - oh, and getting used to the anti-seizure medicine, which can take at least four weeks.  So I guess that would be a triple whammy.  All I can tell you is that I can go from fine to all systems shutting down in a matter of minutes; lights and noises are overwhelming; and no one is getting a Christmas card this year. 

Also I need a nap.

Also seizure is a hard word for my fingers to type.

Also this post took me more than a day to write.

So yeah, I'm a mess and while I'm working on blog posts because I like to write and want to post fun stuff like pictures from our trip to Universal Studios, I'm having to take many breaks along the way and who knows when my next post will be up.  I'm not going anywhere, but I'm not exactly all here, either.

11 comments:

  1. Awww Shelley. I wish I knew of any neurologists down there. I can't help but think (total armchair quarterback here) that all the meds you've been on this year had to have some effect on your brain! I'd for sure get a second opinion. Sending you bubble wrap and all the hugs. <3

    ReplyDelete
  2. I'm sorry that year has kind of sucked for you. Wishing you nothing but good health for 2020. Post when you can and take good care of yourself!

    ReplyDelete
  3. You take all the time you need my warrior friend. 2019 needs to just go away and let 2020 and good health roll on in.

    ReplyDelete
  4. I agree. I really think it would be worthwhile to see another neurologist. And another EEG would be worthwhile. I also agree about not seeing a random neurologist. Some of them are kind of weird :)

    ReplyDelete
  5. Like all the posters above me I think a second opinion is in order. I hope 2020 will treat you much kinder. We will be here when you are ready to post just take good care of yourself.

    ReplyDelete
  6. For any out of the ordinary condition, I usually will check out a University medical center. I've found that's where the smartest and most learned doctors are. Good luck and I'm praying for you.

    ReplyDelete
  7. I definitely would want a second opinion. You have had a lot going on this year. Please rest as much as necessary and take care of YOU.

    ReplyDelete
  8. Oh wow! Definitely get another opinion. Your year has been so odd! You need someone to review ALL of it, not one scan. But you know that. I hope Amanda helps find someone good for you, and you get an appointment soon!

    I can't imagine how you are feeling, Shelley. You were starting to get better and going off meds to THIS. More meds. More uncertainty. We are all hoping for the best for you and are definitely around if you need to vent or cry or say how frustrating and dumb this all is.

    And we look forward to those posts when you can complete them! I want to hear about your trip! Your family is so fun!

    ReplyDelete
  9. So sorry your 2019 has been so traumatic for you and your family. My son is a fireman / Paramedic for CS (and I hope you never meet him in uniform!) so I know that seizures and falls can be quite scary. Should you decide to go to the Dallas area, I highly recommend Dr. David Barnett, Chief of Neurosurgery at Baylor University Medical Center in Dallas. He is a wonderful man and physician. Not sure if he actually treats seizure disorders, but his practice would certainly be able to refer you to someone at Baylor that does. I would certainly want a 2nd opinion. Good luck and prayers for adjustment to your ever-changing "normal". Merry Christmas. Lynn

    ReplyDelete
    Replies
    1. Lynn, I wouldn't be surprised if you son was one of the first responders in my kitchen that night; police, fire, and paramedics all were there so who knows...any case, from my vague memory, they all were very kind. Thank you very much for the physician recommendation, and please tell your son thank you for his service for me. :)

      Delete
  10. I'm a long time lurker/reader but I wanted to write to say I'm so sorry to hear this happened to you! You've been through enough without these recent events. Definitely get a second opinion when you have a good referral and are up for it. A "one and done" diagnosis just doesn't feel right. My best wishes to you and your family for a solid recovery and very health & happy 2020! Best, Dianne

    ReplyDelete

I love hearing from you and read each and every comment! Comments on older posts are moderated, so they won't show up right away - sorry to my real readers, but spammers love to hit old posts, so this is necessary.