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Nin

Pots and siezures anyone?

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Just wondering if anyone else has siezures due to pots? If I push myself too much I can have a siezure. Was wondering if this is due to pots as it don't seem to come up siezures and pots

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@Nin - yes, I have autonomic seizures. I have NCS and hyperadrenergic POTS and when my adrenaline soars I suffer from sudden, severe vasoconstriction. this stops the blood flow to my brain so abruptly that I take seizures that appear exactly like epileptic seizures. I had a longterm EEG in an epilepsy monitoring unit and when I had an episode thay found that it is due to the stopping of cerebral circulation that I seize. My HR at the time was high. I also experience sudden drops in HR that cause syncope from NCS. I used to have episodes several times a week but with medication, frequent IV fluids ( I have a port and get them at home ) and limiting my activity ( although exercising lightly every day ) I hardly ever get them anymore. If I am sick or stressed or do too much I have them but not often. 

These seizures have different names: convulsive syncope, autonomic seizures, hypoxic seizures, reflex anoxic syncope …. they are all caused by dysautonomia. I don't know why there is no information about this out there - I know of several people who have the same seizures. But I guess it is a bit rare, so not much gets written about this.  My autonomic specialist hs several patients with the exact same seizures, so it can't be THAT rare!

How are you coping, what meds do you take and what other measures do you take to stop them? I am sorry you are going through this, it is scary and frustrating!!! Wishing you well!

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My Son#2 has the same thing as Pistol, his is currently under control by using lots of fluids, florinef, salt, midodrine and dilantin.   Though he said the fluids are the most important!

 

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On 2/14/2020 at 7:36 PM, Pistol said:

@Nin - yes, I have autonomic seizures. I have NCS and hyperadrenergic POTS and when my adrenaline soars I suffer from sudden, severe vasoconstriction. this stops the blood flow to my brain so abruptly that I take seizures that appear exactly like epileptic seizures. I had a longterm EEG in an epilepsy monitoring unit and when I had an episode thay found that it is due to the stopping of cerebral circulation that I seize. My HR at the time was high. I also experience sudden drops in HR that cause syncope from NCS. I used to have episodes several times a week but with medication, frequent IV fluids ( I have a port and get them at home ) and limiting my activity ( although exercising lightly every day ) I hardly ever get them anymore. If I am sick or stressed or do too much I have them but not often. 

These seizures have different names: convulsive syncope, autonomic seizures, hypoxic seizures, reflex anoxic syncope …. they are all caused by dysautonomia. I don't know why there is no information about this out there - I know of several people who have the same seizures. But I guess it is a bit rare, so not much gets written about this.  My autonomic specialist hs several patients with the exact same seizures, so it can't be THAT rare!

How are you coping, what meds do you take and what other measures do you take to stop them? I am sorry you are going through this, it is scary and frustrating!!! Wishing you well!

Wow!!! This is me !! I have not been diagnosed with pots yet ...but I have seizures , and no neurologist has even put in the effort to figure out why. When this happens I feel as if my brain is tightening, releasing and then boom seizure. 

But not a single doctor knows what I'm talking about ..or what it is I'm trying to describe.

 

 

Sorry to hijack 

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On 2/14/2020 at 5:42 PM, Nin said:

Just wondering if anyone else has siezures due to pots? If I push myself too much I can have a siezure. Was wondering if this is due to pots as it don't seem to come up siezures and pots

I have seizures...but I don't know if it's due to pots as I have no been diagnosed yet. 

I have always passed out or fainted rather since I was a young child...and then in my early 20' s I began to have seizures. 

It's been 5 years and I still have them   ..

 

But I'm wondering

 

Do your seizures affect your speech and or your ability to walk properly??

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I'm not sure if what I am having sometimes occur is a seizure, but I think it may be. I've never had one at a hospital etc, so I cannot confirm with complete certainty that it is, but basically when I have a severe dysautonomia flare, I just "go somewhere else" mentally. My brain feels like it stops and I just stare off into space and cannot think or move or do anything. I just space right out and go wide eyed and feel very, very odd. These usually last anywhere from 10 seconds, to a minute. 

My body doesn't usually seize, but I have had several occasions where my shoulders will involuntarily hunch, or muscles will spasm as this is happening.

It's very odd and scary. I usually feel nauseous afterwards. 

I hope you are OK and make sure you speak to a medical professional about your seizures. 

 

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@Scout this might be what happens to me before passing out or having a seizure, people tell me that I just stop doing anything and have a blank stare for a few seconds and then go unconscious. I am aware of the staring too, and I feel simply "empty". "Void of all senses" might be a good way to call it, for those few seconds I am not really conscious yet not unconscious either. Sometimes my lips turn white or blue when this happens. I believe this is pre-syncope: our brains are not receiving enough oxygen. the link below explains it - and also that nausea afterwards is typical. 

@Always_anastasia - how often do you have these episodes? Have they ever been witnessed by anyone? Usually someone describing what you do during them is helpful to doctors. When I was at my worst I would have them anywhere - in doctors offices, on the street, in stores, in restaurants … so mine are usually witnessed and my doctors actually witnessed them themselves. Have they ever done an EEG? Have they done orthostatic Vital signs ( taking HR and pulse lying, sitting and standing ) - you can actually do this yourself if you have a BP machine. PM me if you need to know how. If this test is abnormal you can show your doc that you are legitimately a candidate for dysautonomia. 

4 hours ago, Always_anastasia said:

When this happens I feel as if my brain is tightening, releasing and then boom seizure. 

I know exactly what you are talking about - good way to describe it!! If your neurologist does not take you serious than I personally would look for someone else. I am so sorry that you are alone in this - it is a very scary thing to go through.  To both of you - the following article describes some of this: 

https://www.epilepsydiagnosis.org/seizure/autonomic-overview.html

 

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7 hours ago, Pistol said:

@Scout

@Always_anastasia - how often do you have these episodes? Have they ever been witnessed by anyone? Usually someone describing what you do during them is helpful to doctors. When I was at my worst I would have them anywhere - in doctors offices, on the street, in stores, in restaurants … so mine are usually witnessed and my doctors actually witnessed them themselves. Have they ever done an EEG? Have they done orthostatic Vital signs ( taking HR and pulse lying, sitting and standing ) - you can actually do this yourself if you have a BP machine. PM me if you need to know how. If this test is abnormal you can show your doc that you are legitimately a candidate for dysautonomia. 

I know exactly what you are talking about - good way to describe it!! If your neurologist does not take you serious than I personally would look for someone else. I am so sorry that you are alone in this - it is a very scary thing to go through.  To both of you - the following article describes some of this: 

https://www.epilepsydiagnosis.org/seizure/autonomic-overview.html

 

Several people have witnessed the seizures ...just not the neurologist .. when I first had a grand mal seizure .. the interns and Drs argued at my beside about rather it was a seizure or not. The interns were firm , and furious that it was a seizure and an EEG should be given and the Drs refused. After that I proceeded to have several episodes and because they are looking for epileptic patterns ,but believe I'm not having what they consider to be epileptic seizures they aren't too concerned about them .

They happen several times a week, which is easy compared to when they first started . 

Thank you for the information about bp, as well as the seizure link. I still need to get a bp machine .so that I can catch the things that are happening myself. 

 

I believe I become more symptomatic before my monthly cycle ..I'm not sure why this is ..but my tilt test is scheduled for this week ..but it is after my cycle .I'm not sure how the rest will turn out because of this.

The test is being ordered by a cardiologist , I believe it is only being ordered because I passed out right in the elevator on the way to his office and it became almost an emergency .

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I have yet to be diagnosed as waiting for tilt table test. My GP said my symptoms sounds like lots, also a cardiologist and neurologist. But here in UK long waiting times to have these test! I get these if I'm on my feet too long, I can't even speak properly when this happens, my speech is slurred it's so scary. I just couldn't find this as a common problem with pots online. The stairs are my worse enemy, if I climb too many stairs a siezure will come. 

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I had a eeg done and these siezures are non epileptic. When I said to the epilepsy nurse maybe it's my heart she just give me a look of don't be silly. It was only after pots syndrome was brought up from go etc. I think most doctors even cardiologist know enough about the effects of pots syndrome. It sounds like siezures are rare with pots but definitely does happen to some people I suppose. 

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