Feeling Bummed

Sorry all, I just need to vent here..

I was all excited to participate in another study for The NIH under Neurobiology of psychogenic movement disorder and non-epileptic seizures. I have been able to do 2 other parts of this study before now, but my resent results from my 3 day ambulatory EEG came back with me having not only non epileptic seizures with the FND, but epileptic seizures during movements, when I'm not moving, and while sleeping according to my Neuro. I have to start taking an anti-epileptic medication now. Because of the epileptiform issues, and the new medication, I was just told that I am no longer eligible to participate in this study. AAAAHHHHHH! I am so sick of this stupid disorder and all of its twists and turns and disappointments. So much for being honest.. darn it. I love being able to be part of these studies and have the opportunity to help provide information about FND in hopes that it will help them to find answers.

Oh well, maybe there will be one in the future that will involve both non epileptic and epileptic seizures. crossing my fingers. I want to help get the answers for us all. I want this to end!

oh well. maybe next time. keeping up the fight! :o(

5 Replies

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  • My dear friend Cheryl.

    You have given us far more information than you may realize. The fact that you have both types of seizures under different conditions is incredibly insightful.

    Sometimes, I look so hard to replicate what fits within the context of controlled science, that I forget to remember that there is science yet to be found.

    Do not distress. You have done well. Very well.

    I am not doing good. But I was reminded that I am not supposed to fight against that which will be found.

    So I rest from the battle now. You rest now too.

    Tomorrow brings another day upon this earth. I give thanks for the day I had and the hope for another.

    May peace be brought upon us all. Your good friend.

    Dan / Seattle

  • Dan my friend. I am so sorry you are struggling so much. I hope today finds you better than yesterday. I hope you were able to get some rest. Last night on the new meds, I felt as though I got more sleep, however I find it kind of a toss up. medicated sleep just isn't the same as normal sleep. l don't seem to remember having dreams which isn't good for my awareness, but I don't remember waking up with movements, which was so nice. I just pray that this medication will continue to do well for me. However, I am glad that we found something. I think the one thing that frustrates me at the moment, is the inability to talk. Getting words out of my mouth lately, and even more so on some days is quite a struggle. It is so frustrating to go to say something, and it becomes stuck, unable to come out. My mouth is trying to get the words out, but it feels as though each word refuses to make an appearance.

    Oh well, I am able to move, I can do things today, so I guess I have to celebrate that right? Take care my friend, and hugs to the family!

    Cheryl

  • Cheryl.

    You were an inspiration as I opened an email from my doctor at 10:30 last night. I replied to it with greater understanding thanks to you.

    The words will eventually come out for you. We evolve with this disease and the brain/body find "work arounds.". Patience helps you and me.

    Everything you write carries meaning for me. I will follow and think about the sleep patterns as you provide more details going forward.

    I already have been given gifts this Friday. Thank you for that!

    Oh yes, autonomics? Yeah.... I am finding that autonomics play a huge role as my own disease advances.

    Tell family hi and enjoy day.

    Dan

  • Hi I'm wiped just now but wish you luck in your endeavours. Keep your chin up x

  • OH no, not you too? I'm so sorry. May it get better for you as the day goes on. Hugs your way.

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