seizure related to POTS

[toomanyproblems]

Last week I had a seizure-like incident after I got back from voting. My neurologist said it was probably related to my pots since it happened when I stood up. She said lack of perfusion to my brain probably caused it to go haywire. I was highly stressed. She said to try to avoid the stressful situations that caused it.  I'm highly stressed now and have increased my gabapentin dose. 

Has anyone else experienced a seizure-like event (not a grand mal seizure but properties of a seizure) related to their pots symptoms? 

[Katybug]

This is a link to an older thread on seizures.

 

[Christy_D]

My daughter has had this happen a couple of times.  Her doctor said it isn't really a seizure.  It was described more like her system was doing a 'reboot'. 

[DADofPotsSon]

My Son#2 has this problem since age 15 and he is currently 29, keeping the blood volume up seems to help the most, lots of salt, fluid, and florinef.

 

[TCP]

I've had these episodes mainly when POTS really got bad. I haven't had any for ages. There is a link with POTS and also with Chiari Malformation. 

[SarahA33]

TMP, I had this happen in May for 3 days. I'd stand up and my hearing and vision would fade, then my arms and head/neck would twitch and I'd drop to the floor, as soon as I laid back down this would stop. I was totally conscious during these attacks though, were you?  My BP was very low supine and I couldn't get a reading sitting up, so I went to the hospital. I did find out that I was severely dehydrated, my hemoglobin was 15 so my blood was basically like syrup and my platelets were through the roof.  I could barely sit up to drink at home, so it was definitely from not taking in enough fluids in my case. I just couldn't believe that all happened in 3 days. Like DADof said, I improved too after 4 liters of saline and Florinef.   My POTS dr. told me it was cerebral hypoperfusion. He said basically a healthy person has 5 liters of blood, while I sit at 4. So, there is a heightened sensitivity to blood volume changes that can cause this type of crash. There are different types of Circulatory shocks/Collapse though, Neurogenic, Hypovolumic & Septic Shock. I hope your feeling better now.

[toomanyproblems]

Thanks to all for your replies. TCP, I do have EDS and have had a brain MRI recently to check for Chiari Malformation. They didn't note it but it was lying down not sitting up, which some feel detects it better.

Sarah, your description sounds similar to mine. When I stood up to get out of the car I was already extremely dizzy. As soon as I stood up the best way for me to describe what happened was it was as disorienting as being hit with a baseball bat but without the pain. It was like something popped in my head and I saw things all scrambled up like in fractals. This extreme visual disturbance seemed like something in my brain, not just my eyes. It continued when I sat back down but resolved within five minutes when I was able to lie down. I did not lose consciousness that I know of but I might have. I was very disoriented and don't even know what all happened. It just felt very wrong and different from anything that had ever happened to me. (And a lot has happened to me with all my problems). My hemoglobin is always above 15g. I have had a mild polycythemia for at least 10 years. No one knows why and I don't either (hematology was my specialty area in both clinical and academic medicine). It does not appear to be a hydration issue.

My BP and pulse are both normally elevated when I stand. However, a couple of months ago I passed out several times in a row for minutes at a time. When I made it back to the bed my BP was 87/48 and my pulse was 48. I have no idea what it must've been when I passed out over and over when I tried to stand but I imagine my BP was low. Both my pulse and BP can and will go all over the chart from way too low to way too high. I did measure both when I was able this incident I'm describing and they were fairly normal lying down.

My neurologist also told me it was probably a pots related perfusion issue in my brain. I will have to remember to keep my hydration up. I try but sometimes I don't realize I'm too dehydrated.

Again, I really appreciate your responses. This is information that's hard to get elsewhere. I'm going to assume this episode was caused by a hydration issue, made worse by my pre-existing polycythemia.     

[SarahA33]

Hi again,

What is polycythemia?

I've had the same exact problems with my BP. I was originally dx'ed w/ Orthostatic Hypertension also. But, as time has progressed it's turned into hypo - so I guess the correct term would be Orthostatic Intolerance? I was always pre-syncopal upon standing, however, I've also now actually started passing out. I too have had a very high HR for many years, and recently I've been experiencing bradycardia. My dr. thinks it's from the HR lowering med, Ivabradine, which worked wonders for my tachycardia. There is somehow a link that Florinef (indirectly) could be making me more susceptible to the medication, because we realized the other day the bradycardia started a short time after I began Florinef. I don't disagree but don't understand his thought process so if you have any ideas on this I'd love to hear them.

When I passed out about 3 weeks ago, My BP and HR were both low. I stood up and then fell backwards. I went to the ER because I didn't feel right after I fell, and ended up with a concussion, then passed out again at the ER. My vitals were much like yours. This is different than the events we talked about above, and I saw my dr. and he said with both a low HR and a low BP, neither can compensate for the other. I totally understand how scary it is when something new begins, and I hope it was just a one time thing for you.

 

[PANs]

You're not alone with this. I have frequent seizures because of my POTs, but also have predisposition to seizures. From what my neurologist has told me is that any time your brain is lacking blood/oxygen there is potential for seizures or events that closely resemble seizures. I've had many many less seizures since my diagnosis with POTs and introduction to blood pressure medications and such. Went from having at least one a day to one every month just from starting POTs treatment (and still taking the same anti epileptics before and after starting POTs medications). That alone makes me think that it can very well cause seizures. I would be too concerned though... pretty much the same thing that can happen when you're passed out from POTs can happen if you're seizing, and there's little difference in how you should take care of someone in that position. Other than making sure you're on your side, everything else is virtually the same. Make sure they're in a safe place, make sure breathing is regular and on their side, and wait it out.

Unsure how it is with you, but I've also noticed that if I have a seizure my POTs symptoms are usually worse the next day. Take it easy and rest.

[toomanyproblems]

Hi Sara, Polycythemia means simply too many cells. It's normally too many red cells that your body is making but can also include other cell lines such a white cells and platelets. My white cells are usually elevated too.

PANs, I'm completely alone now. If something bad happens to me when I pass out or have a seizure I guess that is just that. I used to pass out all the time. Then it got better, now I'm passing out again. The seizure, along with the election results, has triggered a severe depression in me. I've never been this depressed before. I fear I will lose my health care among other things. So many bad things have piled up on me over the last few years. This was kind of the last straw.   

[MomtoGiuliana]

So very sorry you are having a rough time.  You say you are alone right now--do you have neighbors you can alert about your condition so that they can check in on you?Anxiety and depression can definitely exacerbate some symptoms.  I know easier said than done, but I would suggest trying not to worry right now about the future if it is just increasing intensity of negative feelings.  Advice I need to give to myself too! 

[PANs]

10 hours ago, toomanyproblems said:

PANs, I'm completely alone now. If something bad happens to me when I pass out or have a seizure I guess that is just that. I used to pass out all the time. Then it got better, now I'm passing out again. The seizure, along with the election results, has triggered a severe depression in me. I've never been this depressed before. I fear I will lose my health care among other things. So many bad things have piled up on me over the last few years. This was kind of the last straw.   

I understand that fear all too well. I am also alone for a majority of the day. I have  some ways to put my family's and my mind at ease though. There are apps that you can have on your smart phone that can "check in" with certain people or even call 911 if you feel yourself  having an aura. Alert- Family SOS Button by HelpAround Inc is one I have used before and can even be linked to apple watch in case you're like me and don't have your phone on you at all times. Just press a button and it will send a notification to the people you list. Another is iMedAlert  by Divoti Inc. I haven't used this one, but it looked okay. They are both FREE.

There are also applications that you can check in when you take your medications. If you're like most people with pots, I'm sure you're taking more medications than you'd like, and most likely at least one 3x a day. There's an app called Medisafe Free Pill Reminder by Medisafe Inc. It's a free app and works with apple watch as well. I've used it before as I used to be bad about taking my medications regularly. On this app you can keep track of when you take your medications but the handy thing is you can link a friend or family member if you don't check in that you take it. If you're passed out or have seized around the time you would normally be awake to take your medications, it will automatically alert them that Hey! They need to take their meds! So if you don't check in to take it because you're in trouble someone will know and can check in on you.

It seems like a lot, but trust me I have felt the fear you feel now. I have fallen, seized, aspirated all at home by myself. It is scary, but there are ways to make yourself feel at ease. I hope this helps you! 

[toomanyproblems]

Thank you all. I passed out three times yesterday for long minutes at a time. I don't know why. It was when I stood up as usual. as I said, I used do this all the time. It had become infrequent but now has started happening again. I just want to huddle up in a ball and let the world go by until things get better.

 

[MomtoGiuliana]

So very sorry.  Hope things will get better.  You said the symptoms improved before so that offers hope.  In the meantime hope you can find the support you need from neighbors, friends, family.

[DADofPotsSon]

When my son#2 went to college he had a room mate the first year but the 3 years after that they put him in a handicap room.  Even though he was slightly over 1 hr  drive away I did make sure we communicated quiet frequently during each day.  I used txt messaging, icq and phone messages.  He would call when he was not feeling well.  I could even tell by his messages how he was doing.   I made a point to connect with the campus security and used them quite often to check on him too!  I could call them and they new me by first name basis and it was all great and it eventually helped in him at college.  You just have to put a program of contacts together and keep in touch and if you do not respond in a designated time frame then you need a plan on someone to check in on you!

DADofPotsSon

[SarahA33]

Hi, there. I wanted to check in to see how you were doing, TMP. I hope that your getting along better. 

[toomanyproblems]

Hi Sarah, Thank you for asking about me. I haven't had any more seizures or blacking out since I posted but my POTS symptoms are through the roof. I'm trying to stay better hydrated to avoid the seizures. This is hard however since I have no appetite and tend to not drink when I don't eat. I have gastroparesis and only have liquids or blenderized meals but I'm having a hard time forcing either. I'm losing weight since the election and I'm already thin. The possibility of not having health care insurance is a huge stressor for me. I am on tranquilizers and prozac since the election. They are helping some. I'm still here at least.     

[Amalia01]

toomanyproblems,

I hope things have improved for you and that you are at least feeling better.