My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Complex Partial Epilepsy ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, November 5, 2013

A good book, a visible toll, a lonely life, and seizure auras

I just finished reading this book called The Nero Decree by Gregory Lee, and my mind is still immersed in it.  I finished it this morning.  I thought it was around 3:30 am or maybe even 4:00 am when I finished the book, but when I turned out my nightstand light, I realized that my light wasn't what was lighting up the room; the sun was already up and I hadn't even noticed it happening.  It took quite awhile to fall asleep.  I had nightmares all night, and woke up this morning bathed in sticky sweat, my hair wet, a feeling of barely being able to breathe, and a sense of panic and confusion.

I'm a bit depressed about how I look these days.  To get a picture with color in my face it seems I have to take a photo when I'm either really hot, just out of the shower, or wearing makeup.  I've been looking at a lot of my recent pictures, and my face isn't there anymore--it's the face of an pale, older, sick woman.  That's what I see, at least.  The pain, the depression, the loneliness caused from pain stopping me from living my life the way I want...it's taking a visible toll on me.

I had a seizure this morning, a partial complex one.  Afterwards I didn't know where I was.  I thought I was either it my childhood home in the Ozarks, or I was in Berlin, Germany, where The Nero Decree took place.  It's really common to not know where you are after a seizure and to be really confused.  It's really scary, too.  Sometimes DH, after he has a seizure, doesn't recognize our house and wonders where we are.  I feel so bad for him, but all I can do is calm him and tell him where he is, that he's safe, and know that in a few moments he will either be asleep or the confusion will start to fade.  I'd do anything to take his seizures away.  I have about one a week, he has two or three a day.  When I'm at my best I have one every three months, and when I'm at my worst I have three or four a week.  I've seen DH have as many as ten a day for months, during periods of extreme stress.

I worry so much about losing him from him being knocked in the head or just brain damage from the seizure itself.  It really doesn't worry me so much about my seizures, because I'm usually stuck home all the time, and the worst injury I've gotten so far, was a dislocated toe, severe neck pain, of course knocking my head into things, usually walls, but nothing serious.  DH has been in life threatening situations, like hanging from his foot upside down from basement stairs.  He's also been beaten and physically attacked more than once during a seizure.  I have partial complex epilepsy.  I have partial complex seizures, and partial seizures with secondary generalization, that lead to tonic clonic (formerly called grand mal) seizures.

He almost always has an aura (warning a seizure is going to attack), but often I don't.  When I do, a lot of times it is only 5-10 seconds before it happens.  Sometimes, usually during periods of severe acute stress, we've had seizures together at the same time.  Stress seems to be both of our biggest risk factors.

On the subject of auras, and because November is Epilepsy Awareness Month, I want to share what WebMD has to say on auras.

Aura is the term used to describe symptoms that may occur before a seizure. An aura may include:
  • Visual changes. Examples include:
  • Bright lights.
  • Zigzag lines.
  • Slowly spreading spots.
  • Distortions in the size or shape of objects.
  • Blind or dark spots in the field of vision.
  • Hearing voices or sounds (auditory hallucinations).
  • Strange smells (olfactory hallucinations).
  • Feelings of numbness or tingling on one side of your face or body.
  • Feeling separated from your body.
  • Anxiety or fear.
  • Nausea.
An aura is often the first sign that you are going to have a seizure. You may have an aura from several seconds up to 60 minutes before a seizure. Most people who have auras have the same type of aura every time they have a seizure.

Sometimes auras are scarier than the seizure itself.  Some people's auras don't make sense unless you are experiencing it then.  For instance, some people can smell a color.  The aura I usually get before a bad seizure is that of being crushed to death by smell.  It doesn't make sense unless you are experiencing it, remember, it's like a lightning storm is going off in your brain.  All sorts of weird sensations can happen. Most of my auras involve smell being overpowering, but I only have the sensation of being crushed by smells before a tonic clonic.

I'm in so much more pain now than I was even 20 minutes ago.  My body temperature is totally unregulated lately.  I'm so hot, cold, hot, cold, that I'm sure I'm running up the gas and electric both.  I usually wear a pashmina shawl in the day at home to try and regulate my temperature.  It's lightweight, soft, and I can take it on and off easily.  I'm not sure why other spoonies don't do this.


I'm a mess lately, too.  I can't even finish a meal without feeling sick.  The only thing I can eat is strawberry frosted mini-wheats in skim milk; though I prefer almond milk, it's too expensive.  Every other food is a huge ordeal to attempt to eat, even other cereals, and I can very rarely finish anything.  So, I eat one or two bowls of cereal every day, some days I attempt to eat something else and then end up feeling really sick, and I make sure to take lots and lots of vitamins and drink lots of water, like normal. Hopefully this problem eating will resolve itself soon, and I can eat normal again.

My head is going to explode it hurts so bad.

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