question

[dizzygirl]

hi all,

i know that this may sound stupid, but what is a n autonomic storm or adrenaline surge, I have probably experienced them, not knowing that it was a surge.

Is it when you have symptoms?

Just curious

Linda

[MightyMouse]

An adrenaline surge isn't the same as an automomic storm. Adrenaline surge is usually a rapid release of epinephrine or another cathecholamines (i.e. a stress reaction). This is often abnormal in people with POTS, NCS, etc. in that the body reacts to being upright as a major stressor and tends to pump out lots of catecholamines in response.

An autonomic storm typically involves severe changes in blood pressure and body temperature, and can lead to death if the body fails to re-regulate. From my novice understanding of this, it's one of the major concern in Familial Dysautonmia (FD).

Nina

[dizzygirl]

oh, is this typical of autonomic problems?

[MightyMouse]

I'm not sure which one you're referring to?

[Ernie]

Thanks Nina for explaining. I thought the 2 were the same.

Do you have more info on the autonomic storm?

Ernie

[MightyMouse]

Ernie, I did a google search to find you info. Most basically, the autonomic storm is a severe rise in BP and a drop in body temperature. One my friends from NDRF has 3 children with FD, and autonomic storm with her children is an accute medical crisis.

Here's what I got from my google search:

From E-medicine

http://www.emedicine.com/pmr/topic108.htm

Neurol Neurosurg Psychiatry 2000;69:832-833 ( December )

http://jnnp.bmjjournals.com/cgi/content/full/69/6/832

From NYU's center for Familial Dysautonomia, you can read about a "dysautonomia crisis" which is a synonym for an autonmic storm, aka sympathetic storm.

http://www.med.nyu.edu/fd/fdcenter.html#cl

Nina

[MightyMouse]

And this one is from Medline on Riley-Day Syndrome, which is also called Familial Dysautonomia.

http://www.nlm.nih.gov/medlineplus/ency/article/001387.htm

Nina

[Roselover]

My apologies. I didn't mean to use a term that had an official medical meaning. I had thought that term had been used by others here on the forum to refer to a flurry of symptoms. My mistake... I'm still learning. Sorry.

~Roselover

[dizzygirl]

hi I am stilll learning too, But if I may ask, what is happening when you get overheated feeling and your ears start to ring, and you feel like you are going to puke your guts out??

I get episodes like that, with e few other symptoms... tachy.. pounding head

is that like your body trying to adjust to temp. regulations.. BP changes?

any one know?

[morgan617]

I'm not sure what others call it, dizzy, but I call them my "episodes" for lack of a better term.

I thought it was sort of the same thing too. Another wrinkle in my brain, Thanks Nina for clarifying.

I used to get storms a lot. Every day a few times a day. They went away for awhile, but seem to be coming back. Not as fierce, but I can tell they are getting worse. My BP would go from 130/90 to 230/130 in about 5 minutes. Talk about feeling cruddy. I would have to wee every couple of minutes, my head felt like it was going to explode and I got really antsy. Not anxious, I just couldn't seem to sit still like I had ants in my pants. I'm not sure why they got better, but now they are coming back and I am so thrilled....not.

I would call what I have now episodes which feel like they are becoming storms. Something to look forward to. morgan

[Roselover]

Morgan, you DO understand! Dizzygirl - that's exactly what I meant when I said storm.

I HATE these "episodes"!! Last night though, instead of peeing ten times, my mouth and eyes were extremely dry! I really don't understand all this either, but thanks for listening and understanding.

~Roselover

[ramakentesh]

i get those as well - when i first got pots they were so bad that my whole body would tremble, i would feel very cold and i would basically get this bizarre surging feeling in my head and be out of it.

I often felt restless before the episode.

My doctor told me that they were basiliar artery migraines, then my POTS doctor told me that they are more like one of two things:

- migraine equivalents - they are apparently caused by the blood vessels in the brain contracting and unlike proper migraines, the vessels dont dilate and cause pain, they just make your entire autonomic system go haywire.

- or if we look at those with POTS becuase of norepinidrine transporter failure, because their levels just get too high.

My levels of norepinidrine/noradrenalin and epinidrine/adrenalin during a recent TTT were the highest readings they had ever had at a 45degree angle, by BP went up to 160/90 and my heart rate up to 160. And this is after i have imprved dramatically! but the high norepinidrine indicate mine is more on the hyperandrogenic type - although my doctor doesnt believe that there should be a distinction, since hyperandregenic patients still respond well to midodrine, indicating incorrect vascular constriction as well as an overly active sypathetic response to standing.

[Guest tearose]

Wow! I never knew that "autonomic storm" was a medical term! Next they will document "potshole" as a medical term! I'd better get the royalties on that one!!!

I have used the word pots "spell" which can according to the "dictionary of tearose" be used to refer any yucky symptoms associated with any form of dysautonomia!!!

[MightyMouse]

Hey, we're all learning here. I thought they were the same thing too--until I met my friend with the 3 kids--now I understand the difference. My episodes are annoying, and sometimes debilitating, but far from a deadly medical crisis.

I also call my bad days "episodes". When I'm at work, the school nurse witnessed a really bad cycle, and had me in her office. She took my bp a few times and it was up, then down, then up again, but my HR stayed in 120's. For me, this is typical of a bad episode.

I think it's easiest for me to remember that an autonomic storm involves elevated blood pressure, decreased body temperature, vomitting, skin blotchiness, etc. and that if sustained over a long period of time can cause severe damage, if not death. Additionally, it's not just upright posistioning that can trigger the event--like many of us, it can be triggered by any physical or emotional stressor.

I suppose it gives me perspective that my stuff could be worse! And I thank goodness it's pretty stable for me.

Nina

[mom4cem]

Amazing, half if not more of what I feel during an attack, episode or spell,(I call it either one each time to keep it interesting.. ) has just been described in this post. I also can have them a few times a day or once a day every few days, this past one has been around a few days. I wonder how much weather has an influence on it?

[Roselover]

Wow, once again, I feel comforted that I am not the only one with these spells. Not that I want any one else to expereince this, but it's scary and and it's hard to know what is an emergency and what I just have to wait through. Thank you all for your comments and all the good information.

Thanks Nina for the info. You know, I think my BP usually drops very low during these, but I think I'll be more diligent to check and make sure it's not soaring high.

Now, Nina, I don't have familial dysautonomia so I don't think this could be a crisis. But I have wondered about Mastocytosis - Mast Cell disorder and this can also - in the worst case scenerio - lead to shock as well. Can you define for me the difference between these typical spells we have and an emergency? What should we all consider an emergency? I know extended high BP... anything else? Thank you so much for sharing your knowledge.

~Roselover

[Ernie]

Hi Nina,

Thanks for taking the time to do the google search and for the links. I read them and it is very interesting, especially the one about Familial Dysautonomia. I know that this is not my genetic mutation but it is nice to know what researchers are doing for genetic cases.

I still hope that one day researchers will find my genetic mutation and I will have a more "normal" life.

Ernie

[morgan617]

Okay, Tearose, you get the prize for potshole and I get the one for episode....it's a tie yeah (crowd cheering as they faint from the excitement) Just a little funny to start my day!!! morgan

[MightyMouse]

I don't know how to answer your question... what's an emergency for me isn't probably an emergency for others. My best suggestion is to use common sense. Recall the ABC's that are in every emergency first aid class--airway, breathing, circulation. If any of those are comprimised, it's an emergency.

Mast Cell disorders involve massive output of histamines and have soem classic signs that differ from other disorders. One common thread is a brownish spotted rash that doesn't go away. To read about mast cell issues, check here:

http://www.thedoctorsdoctor.com/diseases/m...ell_disease.htm

http://www.niaid.nih.gov/factsheets/masto.htm

[Merrill]

For the last 14 months at least, since I've been a member here, people have used the phrase "autonomic storm" to describe a "flurry of symptoms" (as Roselover put it).

[MightyMouse]

Merrill, I understand that folks have used it that way, but given there was a direct question, I decided to clarify. I dont mind if people still use that term the way they have been.