Discussions By Condition: I cannot get a diagnosis.

unexplained seizure-like symptoms

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: d8agrl
  • March 20, 2009
  • 06:21 AM

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.

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4 Replies:

  • Thanks for the research- it's quite interesting. I didn't even mention the mouth problems. I had a dentist fix a cavity that fell out several years ago and have not been able to eat with silverware since. Every time I do I feel like I'm eating razor blades, I can't even move my jaw to spit the food out (any food by the way), I get this strange sensation throughout my mouth like a buzzing pain, and it feels like my top teeth are magnetized toward my bottom teeth (that's the weirdest part), and my mouth fills with canker sores. I now eat with bioware from WorldCentric. The pain went away for a few years as long as I didn't eat with silverware, but now it's coming back. The only cooking pans I can tolerate is glass, cast iron, and 100% stainless steel. If I deviate my jaw clenches shut just from touching them; even washing silverware will sometimes do that. I also get severe pain in one side of my jaw or the other if I eat more than a small square of chocolate, honey, sweets, tart or bitter foods, etc. - anything that normally would make the mouth perk up with a zing. Sometimes I wish I could just remove my teeth for a while because the pain gets so bad. I also have 1 Wisdom tooth that came in crooked- I guess misery loves company; I have to be diligent in keeping it clean, otherwise infection sets in. Dentists will not touch me because of the metal problem so I try hard to take care of my teeth- this is the only set that will ever fit into my mouth (I have large calcium deposits on the bottom inside of my gums that would prevent me from getting dentures in the future). I also have a hard time sweating; my normal body temperature, since I've been ill, is 97.3 degrees Fahrenheit or 36.28 degrees Celsius. I especially have to be careful outside in the hot sun, as I have a hard time drinking a lot of fluids and I don't know at what point I'll over heat. Also, my stomach never tells me when I'm hungry, and seldom says it's full. I have to use my brain to regulate when to eat and how much; I can go 2 days without a meal if I don't think about food; on that note I also have hypoglycemia. Back to the episodes- I also get hyper reflexes during the episode. I first notice that I'm having a problem shortly after I breathe in exhaust fumes, whether in my home (coming in the window or through the walls), in my yard, or when I'm out and about (grocery shopping, etc.). It's interesting about the EM Sensitivity because it describes roughly 85% of my family's symptoms- with or without these episodes. How do I expariment to know for sure? (Doctors in Wisconsin do not like to deal with the extraordinary cases, so I do most of the research on my own.) I also don't take medication very often for 2 reasons:1. I usually react negatively to low doses, and2. My family has been mis-medicated one to many times.I am, however, have so much back pain (syringomylia and myofacial pain from an auto-accident 3 years ago) and have been having so many non-seizures that I was recently prescribed Lyrica. I was so desperate for relief (and nothing natural was helping anymore) I took it. The only side-effects so far are dizziness (which I'm used to anyway), and systemic puffiness. The pain has subsided so much I am wearing myself out catching up on the long to do list, but it hasn't helped with the seizures yet. Being that I tolerated the meds fairly well, the dose just increased. Its part nerve impulse control, anti-depressant, anti-inflammatory, and anti-seizure medication. It’s originally used for diabetic neuropathy and post-shingles pain (I have neither); I guess they are successfully trying it out for fibromyalgia pain as well (which I do have). I've also been diagnosed with Chronic Fatigue, Joint Hypermobility Syndrome, Mixed Connective Tissue Disorder, Auto-immune Disorder and Hashimoto's Thyroiditis (which mysteriously disappeared with the last few lab results), etc. What I have is like all those according to doctors, but it isn't really; in other words these diagnoses are just symptoms, but they don't know the underlying cause. Every year I get sicker; the doctors gave me a life expectancy of 3 years and that was 9 years ago (I attribute that to prayer, spiritual strength, and natural health products). I was never sick like this until the toxic house (the house had been vacated for testing which altered the test to lower results- 9-10 ppm of Carbon Monoxide and 98% moisture back drafting, 1% formaldehyde, and high levels of 5 molds- 2 now known to be toxic), so I pretty much trace our problems back to that; though it still doesn't really help with the underlying cause of all these symptoms. Perhaps the EM Sensitivity will be the answer. On a positive note, I have not caught a cold or the flu in years. I only seem to catch bronchitis, pneumonia, and infections (staph and fungal). I always joke about how my immune system is trying to kill me but at the same time protect me from the flu. (Auto immune disorder is where the immune system attacks the body itself because it thinks parts of the body are foreign invaders, i.e. diabetes is when the immune system attacks the pancreas. I can't blame it when we live in a synthetic chemical laden environment.) Tanks again for the information, it’s something worth looking more into.
    d8agrl 4 Replies Flag this Response
  • I've also broken my left foot 4 times. After the 3rd one I had a dexa-scan done (bone density), but it was normal. With the 4th break, I caused some nerve damage that left me in a wheel chair for a couple of months. A chiropractor finally literally got me back on my feet, when therapy failed. The first time I broke it was in 1999 when I slipped out of my heeled shoe and landed on top of that foot. I fractured the bond that the Achilles tendon attaches to, but it healed without surgery. Then I was in an auto accident in 2005. In 2006 I broke my foot again when slightly misjudging a step; in 2007 I was breezing through the kitchen when my belt loop got caught on a cupboard ***b and it stopped me in my tracks and broke my foot; and in 2008 I was walking down the stairs when my ankle wobbled- I felt the brake then fell down the last step and skinned my foot. This brake caused the nerve damage, and the pain of it put me into a non-seizure. I'm recovered again, but my foot bears more pain with every break. So far I've fractured my Styloid Process, my 5th lesser metatarsal in 2 places and my Cuboid bone. Just another thing to add to the weirdness!
    d8agrl 4 Replies Flag this Response
  • Hi D8a,It's July 2009, I live in MI, where are you? I hust had enough of the same symptoms your family had to find your post in my google search.I never even thought about the car exhaust until I read your post because we dropped a grill we were trying to put in the back of our car, and inhaled exhaust as we were trying to pick up the charcoal briquettes.After eating dinner at my nieces, I felt sudden onset of what I would call heartburn because I rarely ever have any pains in my heart. Then a woosh! and I was hot to the touch, and disoriented.It was the first time I had ever had sweet cherry size tomatoes, and I hadn't washed them, so I am still in discovery phase.I've gone through my second cold phase a few ahours ago, today is the second day sfter the nighttime reaction.Thanks for the insight. I'm going to start documenting.Marnimarnijos@aol.com
    Anonymous 42,789 Replies Flag this Response
  • Marni, It is hard to tell if that was from the cherry tomatoes, pesticides on the tomatoes, or CO (Carbon Monoxide) from earlier. What makes it difficult is that the effects of re-exposure to CO in my family happens in stages, the seizure begins usually between 15 min and 2 hours (generally), then there's the "hangover" stage which may come even without a seizure- and yes it feels exactly as it sounds- and that generally happens in the middle of the night. It’s as of the body becomes so toxic it swells terribly and wants to shut down (like rigor mortis) making it even hard to get up the next couple of mornings. The "heartburn" would come from a restricted airway if that was the case; and feeling a bit fuzzy headed or distant is generally right in with the heartburn. By way of the non-seizure seizures we get, the closest anyone has come is POTS, a form of disautonomia. The group of disautonomias is basically when there's loose wiring somewhere between the nerves, the Central Nervous System, and the brain. That can affect the adrenals and the blood vessels opening and closing, thus the hot and cold phases. Documenting is always a good thing. Take the documents with you to doctors appointments and let them read it over, it certainly can't hurt. My family wishes you well on your endeavor to find out what is going on. And for Blaze... thank you for the website; I look forward to hearing what new advancements there are. The Lyrica is helping even with the seizures and migraines, but I can feel my body fighting it. I’ve finally gotten over the slow vision, and the puffiness did go away. Thank you both.
    d8agrl 4 Replies Flag this Response
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