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Thread: New seizure symptoms...

  1. #1

    Unhappy New seizure symptoms...

    Hi all,
    It's been a really long time since I have been on here. I popped back on briefly a few years ago, but wasn't able to be very active here as I was dealing with a lot of health problems in addition to my epilepsy. I think it was around 2009 when I was last on. Before that, I had been pretty active on here 2002-2005ish I can't remember for sure. Anyway, I hope everyone both new and old members have been doing well.

    I'm experiencing new seizure symptoms, and now have learned to recognize my auras. I'm calling my neurologist soon, just not sure if I should wait until after I have my ankle surgery this coming Friday or not. I'm worried about side effects and possible med changes interfering with the surgery and I can't put the ankle surgery off.

    Anyway, back to my seizures. They're happening more frequently and worse than I've had in years. Plus the new symptoms.

    Over the years, I've been diagnosed with Absence, Complex Partial and Simple Partial seizures. Until this last year, I never experienced an aura that I knew of. Now, when it happens I get sudden nausea, (sometimes even throw up a little) light headed, dizzy and heavy headed feeling. It's very weird sensations. Then I've been having more cluster seizures than ever before. Afterward, I am so exhausted that I can't keep my eyes open, not just tired and sleepy, like it's a battle to even keep my eyes open. So I go lay down and sleep it off. I've also in the last 6 months begun to have times where I have a hard time with breathing-like a yawn that is unfinished/can't catch my breath type of thing, over and over and over. (sometimes just when sitting on the couch, not activity needed to bring that on) My heart rate will jump into the 130s-150s and fluctuates. Sometimes all of these things happen together followed by seizures, sometimes only 1 or 2 of these things will happen followed by seizures. I've never been able to tell when I was having a seizure, because I never had any side effects only the being tired after.

    Another thing is I woke up 2 days ago with major neck and shoulder pain that I still feel, only it isn't as bad as it was. My best friend here asked me if maybe I'm tensing my body up during a seizure in my sleep. Of course I don't know but maybe it is possible. I have no idea.

    I don't have convulsions. But do sometimes get like a restless leg kind of thing.

    I've fallen and sprained my ankle 3 times within the last year and a half. Hubby thinks I may have had one of my seizures while walking and not being cognitive that second(s) when stepping down mid step that it's causing me to fall. Again, I don't know. Sometimes there is 1 quick seizure or a few or clusters of them. Now this last fall has injured my ankle so badly I have to have surgery to get ligament repair, scar tissue removed, he's going to check my tendon while he's in there. Anyway that's off topic. Sorry.

    Now all of this is happening and it's like a freight train has hit my life and I keep remembering when I was diagnosed in 2001 and all of the meds we tried that didn't work and the side effects of those meds were hell and I just can't go through that again. I missed a lot of my son's toddler years due to seizure med side effects causing me to sleep so much. He's 16 now and I don't want to miss anything again. I don't want to go through this, or have my husband and son going through this again. My mother in law came out from Arizona to stay with us for a while because I am having ankle surgery next Friday. It will help having her here for this seizure mess too.

    But I'm just so upset, and needed to vent it out. Has anyone else experienced these types of things with your seizures?

    ~Stamikaus

    (Or Stacy to friends who may not recognize stamikaus from years ago)

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

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    Hi Stacy,

    It's great to hear from you again I just wish it was on better terms. I have the same type of sz. that you have and I also have the aura sz. where I will start to see colors flashing back and forth in my eyes
    and I get a nervous feeling in my stomach. My Epileptologist told me that is the sz. shooting down into my stomach and also a warning that another sz. will follow. Years ago I learned that the moment I started
    to get an aura sz. I was to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and by doing this it stopped the sz. Give it a try if you want to and see if it helps you like
    it has helped me.

    In regards to your neck and shoulder pain along with a rapid heartbeat that is all signs of possible heart problems and I would advise you to see a heart specialist and get some testing done to make sure
    your heart and arteries are okay. My father had shoulder and neck pain like you mentioned and he had to go in for a triple bypass a few yrs. ago but then heart disease runs in my family and my dad was
    way overweight which didn't help him at all.
    If you want to find the right sz. med ask your Dr. to do a DNA test on you all they have to do is draw a few tubes of blood and use a q-tips and wipe the inside of your mouth then the lab will check out
    your body chemistry along with the amount of enzymes you have in your liver and your Dr. can match all that up to the best sz. med for you with the least side effects. I had this done a few yrs. ago and
    my Dr. found out I was drug resistant to all sz. meds out on the market as of right now so they are looking into putting me on the medical marijuana.
    I wish you only the best and May God Bless You!

    Sue

  3. #3

    Default

    Hey Sue, great to see you again too. Definitely wish it was a better reason lol.

    I'll be getting with my primary to check out the breathing and heart rate as well as my neuro for these new symptoms.

    I had no idea they can do this dna testing to see about seizure meds. I'll definitely see if he can do that.

    Thank you!
    Blessings,
    Stacy

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Hi Stacy,

    In regards to the DNA test don't be surprised if the Dr. says they can't do it or they don't know what you are talking about but that's a bunch of nonsense. Often the Dr. doesn't
    want to do a DNA test on a person because they are making money from the drug co. making the drugs they are giving a person and that's why the Dr. will tell a patient they don't
    do it. If the Dr. tells you this just tell them you will let the medical conduct board in your state know about it and take my word they will do the test then with no problem. I wish
    you the best of luck and May God Bless You!

    Sue

  5. #5

    Default

    Hey Sue, thank you for that heads up. I will definitely write that medical conduct board name down so I don't forget it while I am there. (I have a terrible short term memory lately.)

    Blessings,

    Stacy

  6. #6
    New Community Member
    Join Date
    Jul 2009
    Location
    Austin Texas
    Posts
    7

    Default

    very interesting, have you considered having epilepsy surgery? My fiancÚ had part of his left temporal lobe resected November 2015, and since then he has had no seizures. That's a pretty big leap, when you consider the fact that in his lifetime he's had 3000 seizures. They started when he was three.

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