Saturday, May 9, 2009

Symptom watch

Woke up with a horrible headache today, and lots of pain. Back pain, left leg aching, exploding brain, ice pick over right eye, sharp abdominal pains, etc. I was meaning to skip my Provigil, but somehow took it anyway, so I guess I won't have a day of rest.

I've been keeping an accurate a complete symptom list for a while now. I figure it will be useful to have a very detailed list, to remind me of what I feel like right now. That way, when I have surgery again and start to recover, I will be able to start crossing symptoms out as I notice them leaving. (Thanks to Virginia for pointing out this spectacular use of the symptom list!)

So, here is my detailed and updated symptom list:

Symptoms as of May 2009

Constant pressure headache (pushing out around the skull, esp. the top)
Constant occipital headache
Facial pain through cheekbones
Jaw pain--tires easily, making it difficult to chew
Eye pressure
“Sunken halo” headache pain (above the eyes and through the temples)
Sharp pain above one eye, radiating outward
Migraines are hormonal, pre-menstrual
Usually worsened by light and low sounds
Headaches that wake me up at night due to intensity
Most headache pain relieved with manual or mechanical cervical traction

decreased appetite
smaller range of foods seem palatable
often skip meals


Overall sick feeling

Spinal pain
Lumbar spine pain in area of tethered cord surgery
Thoracic spine pain between the shoulder blades, worsened with deep breathing
Cervical spine pain, especially in the 3-4 vertebra below the fusion

Orthostatic intolerance
Exercise intolerance--becoming winded after only 3 or 4 stairs
Heart working extra hard and pounding
Shortness of breath
Heartbeat irregularities/arrhythmias

Low blood pressure
From standing (5 minutes still, 15 minutes walking)
Spells several times a week--semi-conscious, helped with salt tablets and water
Necessitates a wheelchair for any trip over 5 minutes

Falls several times a day
Sudden weakness
Sudden loss of balance

Heavy head

Swallowing problems
Trouble swallowing pills-need chin down, chest out, sometimes gets stuck
Choke on food and water
Weak gag reflex

Wake up sweating and shivering

Out of it, easily startled, “dazed and confused”, zoning out

Difficulty concentrating, thinking of words

Auditory processing dysfunction
I can only understand what is being said to me if there is no background/conflicting noise.
I use subtitles on the television whenever possible to help with auditory comprehension.

Sleep problems
Often awake during the night at least once or twice, unrelated to bladder

Bone and joint pain

Muscle aches

Skin sensitivity/allodynia

Poor proprioception, losing footing, can’t walk on uneven ground

Vertigo spells (spontaneous, not dependent on posture)

Clumsiness, loss of balance, decreased reflexes (slow to catch myself or realize I’m falling)

Pupil dilation
Very large pupils most of the time
Often non-reactive

Muscle spasms
Sharp pain and burning in shoulders
Painful tension in neck
Shoulder hunch due to chest tension

Temperature control problems
Patches of goosebumps
Overheating easily
Excessive sweating
Temperature variation from 96.5-100.5 with no sign of infection

Episodes of cranio-cervical instability
Pounding heart
Shortness of breath

Tingling in left hand

Seeing stars around visual field for no apparent reason

Tinnitus (occasional)

Tingling in scalp

Toes are almost always cold...bath water feels boiling hot to my toes

Intense itchiness, leading to scratched-off skin

Feelings of pain/tightness in chest

Floating sensation

Hormonal imbalance--symptoms of PMDD

Low stress tolerance

Sensory overload--overwhelmed by loud noises and bright lights (movie theaters, crowds of people)

Hiccups--usually when going from horizontal to vertical

Rage attacks
Panic attacks
Erratic emotions

Bloating and abdominal pain after eating, sometimes mild, sometimes severe and excrutiating