I am writing in regards to seizure like episodes I and my family suffers from. We all had a 6 year exposure to CO, the minimum recorded back draft from the furnace & water heater was 10ppm. Since then we 3 have developed many syndromes that cannot be fixed or explaied well, including Multiple Chemical Sensitivity (more accurately Multi Sensory Sensitivity), which now leaves us home-bound 95-98% of the time. We 3 have these strange episodes no one has been able to diagnose. Mind you none of us smoke or drink, we don’t take medicine except as a last resort (we’d been mis-medicated one too many times in the past, and we have bad reactions to most medications, so we avoid it as much as possible), and we shut down our furnace.
The symptoms are as follows:
The Hot Phase: A few hours after being around vehicle or furnace exhaust, burning leaves, cigarette smoke, etc. we get dizzy/disoriented and have a hard time understanding others or following directions, poor memory, and irritability is absolute; then comes a strange fluid warmth from head to toe (hot liquid); sometimes a migraine will also be present- these can last for up to 3 days. Then the day it peaks there are stars/floaters; extreme sensitivity to light, sound, taste, touch, and smell; lack of coordination, inability to find words or name objects, inability to complete sentences, migraines, slurred speech, the feeling of an engine running in hyper-drive inside; followed by nausea/vomiting, staggering, throbbing in the head, ; rapid and heavy heart beat, erratic breathing (often diagnosed as hyperventilating), extreme heat radiating off the body (it feels like anyone touching the person could get burned, but the thermometer only registers a 1 degree difference), Postural Orthostatic Tachycardia Syndrome (POTS), internal and external tremulousness, jerking, muscle tensing, systemic pain, near syncope (occasionally syncope lasting fractions of a second), and a beet red coloration on the face.
The Cold Phase: Then just as it peaks and we feel like we're going to melt down, it stops and begins a polar opposite effect: Limpness (it takes a lot to just move they eyes), Extreme exhaustion, POTS, Headache (feels like there's swelling or severe inflammation) with shooting or stabbing needle-like pain running through it, overly-sharp mental clarity (sensory sensitivities heightened more than before episode), shaking because of being freezing cold (thermometer measures normal temp), inability to speak at all, thick and consistent tearing of the eyes, having to think to take a breath because the body doesn't want to on its own, extremely soft/shallow/ sluggish heartbeat that sometimes skips a couple of beats, low blood pressure, weak feeling or full feeling bladder, pallor? (all color drained from face), felling like the last but of life is trickling out.
The Exhaustion Phase: The final stage lasts anywhere from 3 days to 3 weeks depending on the duration and severity of each episode. This stage involves systemic fatigue (every part of the body feels like it has 100lb. weights hanging off it and they ache), feeling swollen, fatigued emotions, apathy, lack of motivation, over- awareness of surroundings (still heightened senses), severe bouts of depression, bladder urgency, and sometimes headaches and systemic pain. Smaller, more manageable episodes come within a couple days of the last one (if ever were even out of an episode- it may be that one goes right into another); the large ones come monthly give or take. Also after the initial exhaustion (that lasts a few hours) I’ve been feeling a “whoosh” throughout my body; and that’s when I can talk pretty well again and get up to go to the bathroom. I also get bouts of depression, giddiness or anxiety (like cleaning or organizing unimportant things) in this stage.
Also, at times with or without the episode I see something moving out of the corner of my eye (when there's nothing there), and I can hear the radio playing or hear someone call my name when there's really nothing to hear; I also get pixels in my vision (it's like looking at the picture window of a low-quality digital camera all the time). I also have terrible déjà-vu, to the point where it gets scary and once in a while it turns to jamais-vu which can be just as unsettling. My family's memory is getting worse year by year- we keep having to re-learn how to do things (add & subtract, read, name objects, spell, turn on the correct burner on the stove, dial a telephone, etc.).
Any ideas? Any help that can be given would be appreciated as we've had these so many years and theyare getting worse. It feels like we're wearing out.