60 to 0 in 5 seconds flat
Last night the dysautonomia decided to remind me just how much power it possesses over my ability to function at the most basic of levels. I had one of my most severe "crashes" in recent memory, and most dramatic in terms of onset. The headache had been nagging at me for a while, but given that I have horrendous migraines that without high dose medication would be a daily torment I did not pay much attention to it. It did not even warrant tylenol let alone my pain medication. Then my temperature regulation went haywire, but that was easy to accommodate by changing into a summer shirt and boxer shorts. I was laying in bed listening to music and relaxing when in under a minute my body crashed. My headache escalated from a tolerable "2-3" on that stupid pain scale to a torturous "7-8", I became intensely nauseous, my vision began to fade out as my body prepared to lose consciousness, and I began to violently tremor. I had to fight through the head spinning, vision fading near unconsciousness to turn off the music that had become torture, to go get my blue barf bucket, and to grab an ice pack and water bottle. Those were the longest two minutes. Then all I could do was force down a double dose of antinausea medication and my pain medication, try (and fail) to eat something with salt to help bring up my blood pressure, sip on water, and lay absolutely flat and still while praying desperately. I could not sit up without the risk of losing consciousness, I could not move without risking vomiting violently (and then losing the medication I had struggled to get in to me), and my lower extremeties felt as if they weighed three times more than normal. I was hot and tremoring primarily in my legs. In other words for a good two hours I was miserable. Then finally the medication and liquids and laying flat and still all caught up and I managed to fall asleep. This morning I still have a bit of a headache, am exhausted, and my legs are sore but I am feeling so much better than last night. I hate these reminders of just how powerful this monster is and how it can take me from feeling decent to feeling dangerously awful in no time at all. With little to no warning it can shut down my body and hold me prisoner until it decides to release me. I have to just keep on living, because I refuse to live in fear of this monster, but it is like living with a shadow over at least a part of you or a nagging awareness that at any moment even the best day could crash down around you. This is my monster, and we are inseperable until a cure is found, so we face the world together - and sometimes he behaves and sometimes he rages but never do I surrender to him and let him live my life.
October 27, 2009 at 1:42 PM
Remember my last comment? Well, there you go again - encouraging me to play matchmaker so's you are not alone when you get sick.
We also need to find the person writing the next textbook description for dysautonomia so they can pay you to write it.
What you experience is exactly what persons with spinal cord injury call autonomic dysreflexia.
I assume your physicians have completely ruled-out every possible cause for your spinal cord to (dys)function as if injured. (No need to exert yourself with a lot of repetition....just point me to the correct post.)
Barbara
October 27, 2009 at 7:20 PM
The MRI scans and spinal tap are normal. I have documented occult spina bifida, but that is minor and 40% of the population has that and there are no signs of a tethered cord. If the genetic testing and appointment with the specialist on progressive spastic paraparesis/paraplegia do not reveal anything there may be testing done to see if for some reason blood flow to my spinal cord is inadequate, although I have had symptoms of dysautonomia since birth. Then again my motor skills (gross and fine) have been "delayed" or "deficient" since birth too.
October 27, 2009 at 9:42 PM
But up to last year you could walk, right? Spasticity and paralysis come from specifically located cell damage or malfunction.
I'll be watching for what you post on the genetic testing and the appt with the specialist.
For now, be well, my Friend. Barbara
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