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  1. I get that teeth-chattering to-the-bone freezing episodes also. It’s more frequent and worse when my other symptoms are also present. It happens all seasons of the year. Anytime I leave the house I have to bring sweatshirt, socks, ski hat and blanket. I’ve had episodes outdoors during 90 degree weather (i’m the crazy one wearing the sweatshirt shivering if you’ve seen me). I feel like the docs are throwing guesses at me for why it keeps happening. Then my body seems to overcompensate for the chills and finally heats up then I’m blazing (without the excess clothing). Just absolutely awful. I’ve upped my water/salt to be sure i’m not dehydrated. In addition, I take an Allegra daily which seems to work for reducing the range of my freezing/hot but only if my other symptoms are not raging. During these flares my heart rate is definitely also not behaving properly.
  2. I’ve also been concerned with this mostly because I have a brain injury which led to my dysautonomia. I’ve also read some articles on the connection to cognitive decline using certain classes of anticholinergic drugs of which diphenhydramine (ie Benadryl) is worrisome. Other classes of which Zyrtec and Claritin seem to belong are low risk and newest class of antihistamines like Allegra are supposed to be no risk. Since I already have cognitive problems from my injury, I try not to intentionally do anything to make my brain worse. I take antihistamines daily so I can’t risk any further cognitive decline due to anticholinergic drugs.
  3. Hi! my first post but I’m so grateful for all the members comments over the years making me feel “normal” 😊 I use medical cannabis. I have NCS, many dysautonomia symptoms expect digestion is ok(although I’m freezing/shivering after each meal due to blood redirecting to digestion), dysautonomia from TBI, on Mididrone, Flecainide and Diltiazem. In the past I’ve been on many of the meds on this forum with some nasty side effects. So I talked to my doc about cannabis. So far its been great. Cannabis has replaced some other meds I’ve taken for pain. There so are many cannabis variations, strains and dosing differences that cannot really be generalized about the benefits/drawbacks of cannibis. I have found it to be very beneficial but it may not work well for others. I use the oral forms like gummies, oil and tinctures so I can measure the amount of THC and CBD I consume bc I just want to feel better but not be high. So my results are that it works fantastically on my headaches, brain fog, sleep, body aches, stress. There is an elevation in my heart rate when my body starts felling the full affect of the cannabis but nothing scary/really fast and that only lasts a short time. Sometimes it helps with the daily hot/freezing but only if I’m not having unmanageable flares of other symptoms. The oral forms last longer (hours) which is what I need and I take different strains and amounts in the morning vs at bedtime. It’s trial and error with different brands, strains and measurements to find the right mix to help your symptoms while not messing up the other symptoms.
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