- CASE FILE
I've been having what I call "episodes" for 11 mo. now. I can barely function and just need help to figure this out please. I miss LIVING!
ABOUT THIS CASE FILE
I am a 36 y/o woman who is a congenital heart disease Warrior and a multiple OHS survivor with a pacemaker, a mechanical mitral valve, patches on my heart and arteries on many medications daily none of which are new or began around the time these episodes began out of nowhere.
Here are my symptoms documented during "episodes".... (bc idk what else to call them)
Very slight heart beat
Shock in chest and arm
Back, neck, chest and shoulder pain
Delayed fine motor
10 sec memory
Extremely sedated feeling
Liver feels like it is pushing my ribs out
Losing track of time
Funny taste in mouth
Oil coating on lips instantly
Blue lines in lips
Veins puffed up in left arm
Hearing Charlie brown like
Pinpoint random pain immediately followed by bruise
Popping in chest
Muscle cramps in back, chest, legs and feet
Tourniquet feeling on legs behind knees and arms (upper only) and right side of neck
Bruised feeling on R side of head and back of head center
Temple vein pain
R sided severe jaw pain
Double or blurred vision
Pulmonary fibrosis on xrays (sob?)
Severe bone pain (sternum, hips, shoulder, collar bone, pelvis and femurs) like someone is drilling into my bones
Red and white spotted skin
Extreme heat and cold intolerance
Brown spots and white spots all over my face, calves and feet
Vibration feeling in my left arm
Severe nausea randomly
Heat or cold rash all over body
Severe pin point pain followed by an immediate bruise (regardless of what INR is)
Severe wheezing and cough during episodes only
Random masses throughout my body from head to toe
Losing weight without trying or wanting to
Bone chilling cold (night time only) to the point where my teeth chatter and I cannot warm up
Also the same when I get hot and cold showers, cold compresses on pulse points etc does not help
Pins and needles feeling randomly or ice cold limbs, nose and ears
Extreme bone drilling pain
Sweating profusely at night and cannot cool down
Bone chilling cold to the core
That's all I can think of for now. This has been going on for over 11 months. I have had FIVE "normal" days in 11 months! This is NOT acceptable to me but clearly it is to most of those around me as well as every physician I have seen for this.
Needless to say I do not drive, will not shower or be home alone ever and this runs every second of every single day.
ANY help appreciated! I have been to the following...
Rheumatology says I have fibromyalgia and I am on 3 medications for it. Medications are as follows in order of daily intake.
These "episodes" last anywhere from 20 minutes to as long as 6 days straight. Thank you SO much for reading this and please let me know any thoughts you may have on this. I just want my life back and to get back to the me I used to be. My hope is that all of us receive accurate answers as soon as possible!