Reduced Cardiac Output Induced Seizures with OI or POTS

[MikeO]

Have been just struggling the last few weeks. I have had two syncope events that were pretty violent. I did upload my ILR data to the clinic and both times what was seen was a gradual increase in tachycardia. The Dr is working on it She had quite a few questions this time.

I am almost certain i have been having seizures and the increase in tachycardia being induced by a drop in blood pressure (both times i was standing in one spot for a length of time) I also start to have difficulties breathing just prior to the episodes.

Has anyone had similar experiences? I did do a little googling if or when tachycardia becomes too much, added the link to the article below.

https://www.ahajournals.org/doi/10.1161/CIRCEP.119.007744 

 

[Pistol]

@MikeO - I have both HPOTS and NCS, so I suffer from both high and low BP's as well as orthostatic tachycardia. When my BP drops I faint, but sometimes in response to the drop in BP the sympathetic ANS suddenly kicks in to overcompensate and all the vessels constrict, in response to a dumping of adrenaline. When this happens too fast there is no circulation to the brain and I have seizures. To me I cannot tell the difference, except the next day when my body hurts from the seizing. Most witnesses tell me that it looks just like a Grand Mal seizures, and that my back arches severely.  I had an ILR for 3 years and many of these episodes were caught - always just showing sinus tachycardia, up to 170 BPM. I also would have seizures during surgeries and minor procedures, always monitored - tachycardia. But in most cases the BP would spike after a sudden drop. 

Thankfully with my current treatment I have not had an episode in over a year, but I have to work at it, especially during flares. You mentioned that your latest episodes happended after you stood in one place for too long: that is a NO-NO! I cannot stand for long, and if I have to I usually feel the typical signs of presyncope and either sit down or kneel on the floor right away in order to stop it from going all the way. But the most important thing I do is to avoid standing all together! I use a wheel chair when needed ( stores, hospitals etc ), a walker with a seat and I have a bar stool at home for cooking or standing at the counter. The best advice I can give you is to avoid standing and to listen to your body. Once you can tell the earliest symptoms you need to sit or lie down. It was explained to me that The difficulty breathing happens when it is already too late - there is not enough circulation in the chest ( dont worry, not like in a heart attack ). For me there is always heaviness in the legs first, then lightheadedness with a slight change in vision and hearing, my hands and feet get ice cold and then I pass out. So when I feel the heaviness in the legs I sit, no matter, where I am. Try to find out the first sign and sit - that is the only way I know how to prevent these episodes. I also barely ever go to places where standing might be required, unless - as I already said - I have my wheel chair with me. 

[MikeO]

@PistolThank You! for the response. Using a bar stool is a good idea. Do you know how long your seizures would last? One of the questions my Dr asked if i had a sense of how long i was down for which i can't answer because i don't know. ILR data shows a 4 minute gap from the peak tachardia until it came down. I did the upload as soon as i got up. 

[Sushi]

45 minutes ago, MikeO said:

Using a bar stool is a good idea.

Yep, I also use a bar stool.

[Pistol]

3 hours ago, MikeO said:

Do you know how long your seizures would last?

The longest witnessed seizure was about 50 seconds, but the tachycardia lasted a lot longer. The longest fainting spell took 1 minute. I cannot tell how long they last, so that is always up to the people that see them happening. 

[MikeO]

On 11/27/2021 at 3:29 AM, Pistol said:

It was explained to me that The difficulty breathing happens when it is already too late

My Dr did ask if i had difficulty breathing prior to the events, i answered yes.

On 11/27/2021 at 3:29 AM, Pistol said:

slight change in vision and hearing

I did also note with the Dr that on the bad days i will notice a sudden change in my hearing. I know for sure on one of the episodes the change in hearing was a few minutes prior to going down.

Again @PistolThank You for sharing your experiences I was starting to think i was alone in what i have been feeling.

[Pistol]

Nope, @MikeO, unfortunately you are not alone, and I am sorry you are going through this. But know that there are people here that have experienced it too and have overcome the urgency and anxiety that comes from not knowing what is going on. I am always here if you need me, and so are Others here!

[Nin]

Hi Mike0

I haven't had a seizure in over a year but out of the blue yesterday had one. I don't know prior to a seizure what goes on but generally my BP is low, then when a seizure is coming it goes up and I know a storm is coming. Usually before a seizure I just feel weird, my breathing starts going fast and I start with these tics (almost like tourettes) then I always seems to lunge forward. Yesterday I had them for about 30 seconds but had 3 one after another. When first started they wasn't like that. I would be standing talking to my mum and then just start staring (i could hear her but couldn't respond) this was always when standing and would last no more than 10 seconds. Didn't realise at the time what is was. The thing I'm confused about yesterday is why after a year did I get one out of the blue and it was when I was sitting not standing! 

[MikeO]

23 hours ago, Nin said:

I always seems to lunge forward

Hi Nin

I am pretty sure i am lunging with my severe episodes. this last event i ended up pushing over the workbench in the basement and then landed off to the right and broke my banjo.

23 hours ago, Nin said:

The thing I'm confused about yesterday is why after a year did I get one out of the blue and it was when I was sitting not standing!

I hope this is just an isolated event.

[Nin]

Always looking for answers....so frustrating isn't it!