Seizures?

[misstraci]

I wanted to know who has ever had a seizure and if this was a condition prior to dysautonomia or if it is related to your POTS, etc.

[sugartwin]

Although I started having seizures (similar to grand mal, but non-epileptic) before I was diagnosed, they are definitely related to my dysautonomia. When my blood pressure is too low I'm prone to fits of them until my pressure is restored either by infusion of fluids or by enough time spent recumbent. I think the proper name for them is hypoxic seizures.

They were really difficult to deal with, not to mention terrifying.

[potsgirl]

I started having seizures about three months ago, and they've gotten worse and more frequent the last month or so. Mine are tonic-clonic, which means they're quite violent and I'm throwing my arms, legs, and head around, then I usually pass out. I went up to Mayo Scottsdale a week ago to talk to my doctor about them, and they repeated my autonomic tests since it had been a year since my last testing. My BP is now at a lower level both at rest and when I stand up or stand too long. TTT: Base: 110/75....Up 1 minute: 67/48. I seized on the tilt table, and had to stop the test after 2 1/2 minutes. Ugh.

My doctor says the seizures are from my BP, and I am waiting to talk to him on Monday for the test results and a new med they'd like me to try to get my BP up since I don't tolerate either Midodrine or Florinef. I cannot drive now, and am very worried what will happen if I have a fit when my husband isn't around. Most of our home has hardwood or tile floors. No fun!

[misstraci]

Sorry for what you both experience. I think I've been having some, more of the stare and space out, I get "disoriented" and my head feels crazy. I was curious if any others had this and if it was before or after their dys diagnosis. thanks for sharing your stories with me

[icesktr189]

so is that disorriented/spaced out feeling a seizure? I have had times where I completely zone out of reality and then just pop back in. its quite scary

[misstraci]

Hey dani, it definitely can be. Since there are different types of seizures. The grand mal with the whole body jerk, etc. I forget the name but "staring off" is one type as well. It is scary. It happened to me with the kids at the park the other day and I was terrified that I was going to pass out, etc, etc.

[Csmith3]

I have had so many work ups for epilepsy; some positive, some negative. Then this year, I had a few of these "episodes" which I haven't had for years and it was obvious to me that it wasn't fainting or dysautonomia; it was definitely seizures. With the benefit of hindsight, I can now see there are some factors which can distinguish fainting/POTS symptoms from a seizure. There are plenty of these on medical sites on the internet which concentrate on clinical differences, but below I will describe two more practical things that I wish I had known about sooner. I should add that I mainly get partial seizures and a few absences. These differences only relate to my experiences with complex partial seizures and absences (where in both cases there is some loss of awareness rather than just strange sensations I get in a simple partial seizure whilst being totally alert).

If I have a seizure, it is like someone has pressed a pause button and when I come out of it, I am in the same place but everything else has mysteriously moved on. If I am stood, I will stay rooted to the same spot and remember spacially where things were before the seizure started. When I come out of the seizure I notice that other people have mysteriously moved without me seeing them walk and other people have appeared from nowhere. If I am sat alone, so there is no visual clue that I have lost some time, I wouldn't even know the seizure had happened if it weren't for the post-seizure hangover effects (I feel sick, mix up words etc). It is not that things feel hazy; that time never existed for me and there is no memory what happened during the event.

The other thing that distinguishes a seizure for me is what happens when I come round. If it was a faint or what I would consider zoning out from POTs-like symptoms, onlookers are calm, smiling and happy to help. They will tell me I have fainted, look pale, seemed distant etc. When I come out of a seizure, people look scared, they are agitated and not sure what to do. They can see the difference. However, they never said to me that I had had a seizure or that it looked different to my usual symptoms.

I know that some seizures can be caused by lack of oxygen to the brain and Potsgirl, yours sound like classic examples. I have been told that some of my seizures could be cardiac related. I don't buy it. Epilepsy is quite common whereas hypoxic seizures aren't. Also, on the rare occasions when I have fallen, I can get up two minutes later and I feel absolutely fine. Presumably, you feel less than fine.

It is unsettling getting seizures out of the blue and suddenly everyday tasks can seem like a hazard. Best wishes to all.

[rubytuesday]

I've had workup that was negative but sleep study doctor who ordered the sleep deprived EEG told me that you can still have seizures but unless you are having one at the time the test is taken, the study will be considered as 'not'.

I tried to vote 'no' but it kept taking me to an error link (so mine won't be in your stats)

[juliegee]

I've had a "seizure" woke up on the floor of my bedroom as a teen and my mouth and tongue were making strange sounds and movements. In retrospect, I wonder if it was due to hypoxia prior to a faint. I wasn't worked up till years later (when I was having severe migraines.) That work-up was negative for seizures.

I recently watched my husband faint, directly after he had 100's of staples removed from a surgery on his arm. He has NMH and blood & gore is his trigger. He is fine- perfectly healthy between episodes- (but poor Mack is getting "something" from both sides.) Bruce stared straight ahead, began speaking slowly and stupidly (not making sense), then his head, arms and legs began seizing, dramatically jerking in all directions. I screamed for help as he is close to 200lbs & I'm 130lbs and the exam table seemed soooo far away from where he was seated. Doctors and nurses appeared from everywhere (within seconds) and he was carried & layed supine on the table where he normalized within a moment.

It was EYE-OPENING to see this. It was most definitely hypoxia induced. he was seated upright and slumped against the wall so that when he fainted, blood was NOT restored to his brain. Once he was tipped supine, blood flow to the brain was re-stored and he was fine.

I know some here have true seizures, but I suspect that MANY more have these hypoxia induced episodes.

[misstraci]

Thank you all so much for describing this to me! All of it sounds scary. Sorry for what you have experienced. I like hearing your stories though, I like learning about these things I'm interested in.

[Dizzysillyak]

I started having petite mals or staring episodes as a child. I didn't know what they were until

I saw it described on the web. These have gotten much more frequent since getting sick.

I also started having myoclonus when I got sick in 1990 and had my first and hopefully last 2

hour tonic clonic in march.

I hadn't thought about it until reading this thread but I always get petite mals from being upright

for too long now. And they go away after laying down for awhile. I have to lay completely flat

tho. My head can't be raised at all

Sorry you all have these too .. Tc .. D