My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Sunday, June 13, 2010

What's the deal?

I'm not sure what the deal is lately with the increase in seizures.  I've cut down on my tramadol which can lower the seizure threshold, but instead I'm having more seizures and they suck! My neck has been hurting extra bad for weeks, too.  I usually use three ice packs a day at the very least.  I put one on my neck, wait until it is warm, and switch it out to one that is frozen still; then repeat the process.

I did have a lovely birthday.  Jim made me a chocolate cake with two chocolate Snack Pack puddings in it.  Then when he put the icing on it he put another two Snack Pack chocolate puddings in it, too.  The result?  Very yummy, very rich, very moist chocolate on chocolate cake.  Yum!

We watched Jennifer's Body last night and both had nightmares, even though we didn't think the movie was even that good.  Both Jim's crush on Megan Fox and my crush on Megan Fox have ended.  Like I said, the movie really wasn't that good.  Oh, and in the movie Megan Fox was not sexy, at least not in the way you thought she'd be.

I think it bears repeating that I am a bit nervous about my upcoming appointment with the geneticist.  I hope to get off of the tramadol, which like I said, lowers seizure threshold and onto something that doesn't do that.  My pain is still very, very much there even with the tramadol.  The medication does something, but not much of something.  I would like to get into a pain clinic, though I don't know of one who would be knowledgeable about EDS.  Like I've mentioned before, this geneticist is supposed to determine if I have Vascular EDS or Hypermobility EDS.  I'm so nervous and the appointment isn't even until August.

I am getting in with the cardiologist I believe next week, so that means I need to call Medicaid Transportation Monday.  The soonest I could get in with my endocrinologist after missing my appointment is October.  That will make it close to a year since my last appointment rather than the six months he prefers.  At least my thyroid isn't giving me shit (that I know of).

Oh my gosh, my birthday seizure was scary yesterday!  I remember my back went completely numb and I couldn't see behind me because I couldn't move.  I remember screaming Jim's name in between seizures but he was right there the whole time.  My body was numb so I couldn't feel his touch and I couldn't move or open my eyes.  It was freaking scary!  I slept after that for awhile and when I woke up I was so very exhausted and sore.  Of course that probably didn't help my neck pain, either.

I did something so silly a few minutes ago.  I've been taking a lot of falls upon standing lately; a couple of those times I fainted.  I was in the bathroom and stood up to pull my pants off when I just fell over.  I fell into the tub.  Fortunately my wrist doesn't seem like it's messed up.  I fell onto the shower chair which was folded up in the tub.  The right side of my bum is on ice now.  (I have to use a shower chair to avoid falling and to take a very much less painful shower than if I stood.)  I think it didn't do much for the neck pain, either.

So right now I'm waiting on my baby to bring me back some soda.  Yum!  I need caffeine.  It is already past three pm and I've only had a few sips of coffee in the way of caffeine all day long. Scary isn't it?


  1. Happy belated birthday :)
    It sounds like things are really hard right now.
    I did neck PT many years ago. I suspect many of my headaches are caused by neck instability but right now we're focused on my hands so working no my neck is on hold. Hopefully you can get some help for your neck problems.
    I also hope the cardiologist can help with the falls.
    That's so odd about the Tramadol. I really hope something gets worked out so you can have decent pain management without increased seizures.


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