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Paroxysmal Sympathetic Storm


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Hey everyone,

I hope you're getting ready to have a fun weekend, whatever your plans may be.

I had an appointment with my dysaut. doc yesterday that went well, but we decided to try something else. Because my symptoms indicate overaction of the sympathetic nervous system, he put me on labetalol. He was especially interested in my hot flashes, excessive sweating in certain areas, and other symptoms, more so this time anyway, and looked at various spinal cord charts and things like that. Right now I'm pretty shaky and tachy in general, but if this doesn't work, there are still other options.

Anyway, I looked up labetalol and dysautonomia on the web, and came up with paroxysmal sympathetic storm- and it pretty much describes my symptoms exactly- as opposed to some dysaut. patients being parasympathetically overactive. Am I right in thinking that this is what happens in my body to cause my POTS symptoms when I stand up? That might sound really obvious, but to me it could explain why it's POTS in me instead of NCS, and other things like that. Anyway, any info would be appreciated.

Take care!!!

Edited to add: I did a search beforehand and came up with nothing, but just looked up storm and found the old post in which Nina clarified "autonomic storm term." I guess I don't really know if the increased mortality associated with a true storm accompanies primarily those with head injuries or FD... and those with whatever has caused the POTS might experience them in a less severe way? Especially since it's my understanding that patients with FD have difficulty producing sweat or tears, and so I'm not sure what would cause the system to go so haywire as to cause the hypertension, hyperhidrosis, etc.. obviously I need to check this out some more!

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Hi Luckkychrm,

My neurosurgeon once told me that I have an irritated sympathetic nervous system. If you read my signature line below, you can see I have a fair amount of compression on my spinal cord from C1---all the way to T1-2. I also have herniated disks on top of the congenital stenosis. It seems to depend on any physical activity in how bad my POTS gets. I have potsy symptoms all the time, but they are milder in the morning, and get worse towards the end of the day-----almost to the point of not being able to eat.

If I take it easy all day, then I'm better at night. I also get shaky, jittery----------feel creepy-crawley---tachy ect.----especially when I push myself too hard, or I have stress of any kind---even good stress.

My symptoms has been questioned, as well as my physical limitations, even by a so called ANS NP. I carry myself well, and when I'm feeling really bad or shaky----I HIDE. I get embarrassed when I'm like this----especially when I feel near syncope. Even when I'm in pain no one can tell until I arch my back---and sit of very erect from the muscles spasms which are secondary to the tooth ache type pain from all the pinched nerves from the spine compression.

As long as I can remember I have had over active sympatheitc activity------I get over stimulated very easy, and my heart rate is always high---even in my sleep. The beta blockers keep it from being 150-pounding BPM---but I still hover in the 90s, and near 100 when my SNS (sympathetic nervous system) acts up. I've been on beta blockers for 16 years. They don't control the over active SNS completely. Years ago I found phenobarbitol to work like magic-----the down side of that is that it's addicting. I was lucky to not get addicted----I was careful, and only took them for six months in 1982. It seemed to have a lasting effect on my SNS, as I was pretty stable for about 8 years needing no meds. Things were milder back then, and my only diagnosis at the time was MVP------which I don't have............

Below is a link that help explain the role of the spinal cord with the ANS---I post this because in my case my ANS dysfunction is probably a result of my spine problems, as well as the EDS. this is just an explaination on how the SNS works, and relates to the body functions.


Here's a link on autonomic storm:


I hope this helps a bit.-------------------------------------winkingpinkpanther.jpg


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