Are There Warning Signs Before an Attack?
"Do you have any warning when you have a severe attack?"
I am asked this question a lot, usually when I am recovering from a seizure or collapse. It can be very perplexing for friends to see me talking in a group one day, obviously tolerating at least a little bit of fragrance, when another day I can walk by a chemical scent and just keel over, seemingly without warning.
It is much like the situation of a diabetic: When they are meticulous about their diet, they are very in tune with their bodies and can discern even slight fluctuations of blood sugar, either up or down. If they eat something they shouldn't, they will feel it immediately. However, if they start to get careless with their diet, eating sugary junk foods on a daily basis, or if they regularly take too much insulin and run too low, their body learns to adapt to the ill feelings and they lose the ability to discern, at least to some degree, when their blood sugars are rising or falling.
It's kind of the same with MCS symptoms. If I am doing well--my brain stem inflammation is way down and I am pretty much symptom-free--I am usually very alert to some of the early signs:
* Head stuffiness ~ The body is aware of chemicals it can't break down properly and it begins to try to flush them out. To do so, it begins pulling water from places where its loss won't be so critical. The mucous secretions in the head are among the first to relinquish their stores of water, which results in head stuffiness.
* Numbness or tingling in the lower extremities ~ The hands, feet, forearms and lower legs are the next to let go of their water stores, causing numbness and tingling in the lower extremities.
* A feeling of fullness in the ears ~ The brain stem starts to swell, causing a feeling of fullness in the ears.
* Persistent yawning ~ As the fragrance chemicals circulate in the blood stream, some of the chemicals latch on to the receptor sites in the blood that normally carry oxygen, decreasing oxygen to the brain and resulting in an increasing urge to yawn.
Eventually, intermediate signs appear:
* A feeling of fullness in the back of the head ~ As the brain stem continues to swell, the feeling of fullness in the ears changes to a feeling of pressure in the back of the head.
* Dizziness and incoherence ~ As the fragrance/chemical exposure continues, the brain stem continues to inflame and the body starts pulling water out of even the more necessary parts of the body, including the brain. The dehydrated, inflamed, and oxygen-starved brain becomes increasingly sensitive resulting in dizziness, light-headedness, and incoherence.
* Muscle weakness ~ arms and legs begin to feel a bit heavy and weak.
* Change in heart rate and breathing ~ Since areas in the brain stem regulate our heartbeat and breathing, changes are generally felt, depending on what type of chemicals are involved. Fragrance chemicals usually cause my heart to speed up suddenly and high-petroleum fragrance-free chemicals usually cause a slow-down. This usually comes right before the collapse.
Finally, the collapse or seizure is imminent; at this point it is usually too late too stop it:
* Vertigo ~ The dizziness increases and sometimes results in vertigo, which I consider worse than the seizures or jerking.
* Heartbeat and breathing slow or stop ~ The sudden increase in heart rate is often met by an equally sudden slowing or stopping of the heart, resulting in sudden collapse, often accompanied by:
* Inability to respond ~ I can always hear and remember later what was said during an attack, but sometimes I cannot respond and may appear unconscious.
* Jerking, tremors, or seizures
* Loss of ability to speak
* Paralysis
Well, it's obvious from this long list that there are plenty of warning signs. The problem is that a person who is exposed to low levels of fragrance day in and day out, or a person who has severe reactions and goes back into a fragranced environment before the symptoms are gone, becomes like the diabetic who doesn't watch his diet--the signs are already there or there all the time--They become easy to ignore and difficult to discern. No one says, "Oh, my head is stuffing up...I need to leave now," or "I can't quit yawning...gotta go!" The MCS sufferer may become accustomed to walking around with a feeling of fullness in the back of the head for days or weeks, and that's when there's the danger of a reaction taking them by surprise with no apparent "warning."
I have really had to train myself--even force myself--to try to avoid daily low-level exposures that will keep the brain stem inflammation at a level that's just enough to cause constant early-stage symptoms. It's what I do on a daily basis that really determines how much warning I have when it comes to the more serious reactions. Sometimes I may have several days of extra activity, like an assembly or a special visit, and I will notice that the first day, I am quite aware of the early warning signs and have a little bit of time to take action; the next day, not so much, and by the end of the week, I am walking around with all the intermediate symptoms all the time and am quite likely to experience a sudden reaction.
The real incentive for me to pay attention to the early warning signs is that careful attention to keeping them at bay will allow the brain stem inflammation to go down considerably, which may eventually get a person to the point of being able to spend a few hours or so in a fragranced environment every now and then without a lot of consequences. That won't happen by constantly staying near the breaking point, which is the result of ignoring the early warning signs.
© Dorothy Herrmann 2010
