For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Postural Orthostatic Tachycardia Syndrome and Autonomic Storms

I just realized that on my 5 Stages of POTS post, I referred to something experienced in Stage V as an "autonomic storm" and I am concerned that I am using the term incorrectly.  After doing some cursory research, it appears the term is used by medical professionals but it is used to describe something that happens to people after cardiac arrest or after a traumatic brain injury.

However, I did find a reference in Harrison's Practice which states:
Autonomic storm is an acute state of sustained sympathetic surge that results in variable combinations of alterations in blood pressure and heart rate, body temperature, respiration, and sweating.
I am not alone in having what may be incorrectly described as autonomic storms.  I have read a number of posts and comments by patients with POTS or OI who have also described having them.  My experience with the nasty things is confined to when I am in the worst stage of POTS or Stage V: I am unable to stand, or even sit up, my vision is regularly disturbed, chest pain, frequent migraines and my hands and feet hurt.

If you have POTS or OI perhaps you have experienced one of these "autonomic storms" too:

  • body temperature goes up and down
  • what feels like a large quantity of epinephrine being injected into your system (I have gone into anaphylaxis so know what this is like)
  • tachycardia
  • chest pain
  • electric shocks up arms and legs
  • heavy perspiration (ladies don't sweat) to the point of soaking the bed clothes
In short, it is a totally dreadful state to be in.  In my case, the episodes would pass after a half hour to an hour.  I can say, however, that once I started Dr. Levine's protocol and progressed from Stage II/IV, I no longer experience autonomic storms. 

Can Autonomic Storms be Treated?
I have never been treated or have asked to be treated for autonomic storms.  There are protocols I believe for the treatment of Autonomic Dysfunction Syndrome in patients with traumatic brain injury but whether or not the same medical interventions would be proper or effective in patients with POTS or OI experiencing the condition described here would be a really good question for a specialist.

8 comments:

  1. Those things are the WORST. I have told many of my doctors that it feels like I've been plugged into a light socket. I haven't had them in a while. Honestly, that was my biggest fear with starting Dr. Levine's protocol. I was afraid the exercise would stir up the "storms". Thankfully they have not. :)

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  2. Hello! I love your blog : )

    I have not heard of nor tried Dr. Levine's protocol, but when I try and exercise, my symptoms are just exacerbated something terrible : /

    The hardest part is STARTING the exercise regime...ugh

    Take Care!!!

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    1. DR. LEVINE IS A FRAUD. Read about dr.grubb and doctor Raj. Levine has been largely discredited. His workout reg only works for one subset. All it does is strengthen muscles to over compensate for the neuropathy in your limbs. It will make hyper pots so much worse. Another doctor actually called him out on it.Doctor Raj use to work with him know is one his own and proved pots has autoimmune antibodies among other causes. Sorry but working out won't fix that. IVIG MIGHT. CHECK OUT DINET. KNOWLEGE IS POWER.

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    2. Now sorry about auto spell lol. Best wishes get well. Find doctor grubb,raj or barboi.

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  3. yeah I get those as well. Always when im bad.

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  4. I think back & realize due to POTS & OI, I've probably had many of these & crashed in surgery too, I have Ehlers Danlos Syndrome Type Vascular with Type 3 beighton score of 8/9

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  5. Thank you for writing this. I have been trying to figure out what is happening to me since 2003. Just now, 12 years later, I am awaiting a POTS diagnosis. The way you describe the storm is exactly what I go through.

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  6. Welcome to hyperpots folks it really sucks. I have coughed up blood With high bp and tachycardia. Treated with clonadine and morphine. Just like a real brain injury. Dysautonomia means psuedo brain injury. Some of us are not so psuedo. My guess is that a lot of autonomic neuropathy in the mid brain leads to poor sympathetic control and leads to the same storm a brain injury would cause. Let me guess ur hands and feet hurt some times. It is neuropathy.Worse part is the morphine or other opiods don't even make you feel good. Just cancels the storm. Welcome to my life. From doctor McLain jr.lol Lucky for me I got smart docs cus storms can kill you. Wait to you get a touch of dystonia from it. Thats why your so tense.

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