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ideas to mitigate dysautonomia symptoms?
My 16-year-old was diagnosed at Mayo with autonomic dysfunction over a year ago. He is up and down. He does pretty well unless he's in a flare. He drinks a lot of water (at least 80 ounces a day), takes vitassium electrolytes for the sodium three times a day, and is on three medications (midodrine, montelukast, and clonidine for sleep). He has strong sensory issues so none of the compression options have worked as they all bother him significantly. He's in a very bad flare right now - a lot of leg pain including knee joint pain which makes the movement he needs to be doing impossible. He gets the cold spells where he's under 10 blankets. Lightheaded. Brain fog. Just generally feels awful head to toe. Extreme exhaustion is a big issue. With the prescription sleep meds he is able to fall asleep most nights and stay asleep (sleeps for 9 hours). Like most, the utter exhaustion persists. With the flares and the sensory issues we are having a very, very difficult time finding things he can eat as smells and tastes are repulsive. He is in an alternative school (1:1 with a 1:30 start time) but despite the flexibility he is currently missing most of his classes due to the physical pain and/or the complete inability to focus and comprehend the coursework. No GI issues. I'm wondering if anyone has any suggestions of things that have worked for them for similar symptoms?
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Hi,
Automomia controls everything we take for granted and don't think about doing, ie; heart, lungs, digestion, movement etc. So it is little wonder your son has these problems. Interestingly a lot of people who have had long covid can get Dysautonomia as it attacks the autonomic nerve.
I have Autonomia as well, from a severe dose of Campylobacter. For me it has messed up my digestive system totally limiting what I can eat, how much I can eat or drink per day, it rules my life. Go over my limits and I'm in serious trouble for the next few days. My taste and smell functions have not been to greatly effected, so far.
It keeps me on my toes resisting it's temptations and willful disregard for my ability to function. Some days are good while other days couldn't get much worse.
At 73 I have been dealing with it for 14 years now most of which I was diagnosed as having a psycological problem, because they hadn't bothered to look further. Now days the Dr's listen as I'm able to prove what I'm going through isn't in my head, with independant testiment to back up my assertions and finally a diagnosis which has made sence of it all. Formal diagnosis of Autonomic polyneuropathy which is essentially all the nerves controlling everything in the body are affected including the peripheral sensors. The big problem is when my health records are seen, suddenly I'm dropped like a hot patatoe as they know there is nothing they can do.
Determination and bloody mindedness helps alot in fighting this disease. For the best part I'm holding it a bay and function better now than the early days when the symptoms and no diagnosis dragged me down.
I simply got fed up with the symptoms and choose to ignor what I can to function as best I can when I can.
Cheers