Who else shakes / shivers when they experience an attack / surge?

[Scout]

I have been having this a lot lately when I have a surge.

Had to call emergency last week after a particularly bad episode. Woke up to heart going mad, shaking violently.

Was just wondering how common it is to shake / shiver, particularly in those with hyper-POTS?

[Jessica_]

I have hyper pots too and yes I shake/shiver uncontrollably with my surges. My shaking usually starts when the surge is almost over tho and then I shake for about 15-20 mins after my heart finally calms down. I HATE SURGES. Just know you are not alone!! 

[Pistol]

@Scout - the shaking and shivering and even teeth-chattering is all normal for hyperadrenergic surges. The best thing you can do is retreat - sit or lay down in a quiet and dark room ( when not in the house I use public bathrooms ) and wait it out. This helps the ANS to calm down because you do not stimulate it any longer with external causes. And then you should be in bed afterwards. I know - this sounds impossible but it is what it is - POTS IS IMPOSSIBLE!!!  I personally do not get these flares often anymore because I am housebound and can rest when I feel the first sign. When I get really bad I even take seizures from the surges. Certain meds can also help to decrease them. Do you see a specialist?

[Shane]

Sorry for the dumb question. But what is a "surge".  Is that like an massive adrenaline rush or something?

[jklass44]

I get these too and they seem to come in clusters, and after the surge or episode has passed I always feel like I ran a marathon or something. They're extremely energy-sucking I usually have to take the next day off of work or cancel plans just to "recover".

Hope you're feeling better now.

[Pistol]

@Shane - not at all a dumb question. What we refer to as a "surge" is an episode of sudden and extreme nor-epinephrine output, you could call it an adrenalin- rush. It is caused by anything that stimulates the ANS: standing, walking, stress, noises, heat, cold … the causes are multiple. The reaction is always the same: the sympathetic NS over-reacts and it is almost like going into shock. This is a part of autonomic dysfunction - in "normal" people the sudden rush of norepinephrine is balanced by the parasympathetic counter-reaction. In ANS dysfunction this balance does not exist. So whenever someone mentions a "surge" it is usually describing this mechanism.  

[rgarton]

Hello,

I've recently posted about something similar but these episodes last a minimum of 6 hours, how long does your episode(s) usually last for?

Thanks,

[Scout]

Thanks folks, for the replies! 

@rgarton Mine last around 30 minutes, but up to 2 hours on occasion.

It really is so incredibly tiring, isn't it? 

So sorry that you experience 6 hours worth! 

I always need to sleep a lot afterwards. 

[ks42]

Yes, I experience shakes/shivers uncontrollably when I get surges. The nice thing for me, though, is that I get them toward the end of a surge, when things are going back to normal like @Jessica_ mentioned. So sometimes I'm actually thankful when they start, because I know it's going to be over soon. 

@rgarton - like you, mine can last six hours or more. The smaller ones may only be 30 minutes to a couple hours, but the larger ones can be longer than 6 hours - I had one that lasted almost 24 hours (maybe a little more) so I have to treat them with benzodiazepines as soon as they start.