Anyone else?? Syncope vs. Seizure

[Ruthie]

I'm not sure if this is this best section to post this question or if another section would be best......

I am trying to read, research and understand and I feel like I come up with more questions than answers.

I have been diagnosed with dysautonomia (autonomic dysfunction) with no root cause being found to date. It is clear that my autonomic nervous system does not function properly. In other words I have symptoms that get worse every time I sit or stand (obviously those are not seizure since it's every time I stand up).

However, I have a host of symptoms that seem to more closely fit seizure. This did not become apparent until recently. CT was normal, blood work has been normal and EEG was normal so nothing is showing up. Autonomic specialists say some of these symptoms are not my dysautonomia and it's something else but other neurologists want to blame everything on my dysautonomia. Meanwhile, I'm the one caught in the middle with no help.

If some of these episodes are seizures then I think they would fall under partial seizure.

I did a little research and it seems that people who have seizures often have autonomic symptoms that go along with seizure. It seems there is a relationship between Autonomic funtion and seizures. BUt....everything I'm reading also says that the meds to treat seizures have major effects on the ANS (autonomic system) arrhythmia, hypotension, respiratory depression. I already have severe problems with these issues so it sounds like trying these medications would be too dangerous for me.
In the moment I'm feeling like this is a hopeless cycle and one I fear nobody is even going to be able to sort out.

Anyone else on this site have comorbid conditions making treatment plan so complex? Anyone have experience with clinics or specialty areas? I am already followed by Vanderbilt Autonomic Research Center (they deal with Dysautonomia's) and I've been to Mayo Clinic. Neither place ever considered seizures as a possible diagnosis so no testing was ever done related to seizures. I am working with a team of my local physicians but I am 99% certain they are going to tell me this is too complex for them and recommend I return either to Vanderbilt or Mayo (easier said then done when you can't drive or fly). Anyone on here ever been to either place for seizure issues and have experience to share? Is there a 'top rated' place that's most respected for treating and diagnosing seizure disorders?

If I'm having partial seizures is it worth doing an inpatient video study? When I have the episodes that I consider potential seizure it's not obvious to anyone. I remain conscious. Sometimes I stare for a second or two but the last one I was even able to stand up at some point.

 

[brain]

I would strongly recommend that you
participate a video electroencephalogram
because it also records and monitors your
cardiac as well. It is true that if insufficient
blood and oxygen reaches to your brain,
it can create seizures (whether low or high
blood pressure)

They would be able to determine if you have
other medical issues that were overlooked
or if you indeed have multiple medical conditions.

It is not unusual for a person with Epilepsy to have
other medical conditions, which includes cardiac
issues as well. If it were Syncope, they would know
it likewise if it were Epilepsy.

I strongly recommend once again that you go,
if your Physician recommends it. Better to be safe
that sorry; after all, you could rise up one day and
end up falling and injuring yourself seriously and
you wouldn't want that would you?

 

[Nakamova]

Hi Ruthie --

Have you already ruled out orthostatic hypotension? If not, you and your docs might want to look into it.

No info on those particular clinics for seizure disorders. There are some neurologist recommendations/ratings on the epilepsy.com site that might be helpful. One caveat though -- sometimes the docs with best reputations are not the ones with the best patient skills.

Best,
Nakamova

 

[Crystal11]

Sycope was something I was tested for becuase I have tachycardia and skipping, as in heart beats skipping every third beat. It had nothing to do with my seizures- those are complex partial. But becuase I'm starting to have atonic events I'm sure they are going to test me again. Usually a cardiologist could tell if you are pre-syncope or have syncope at all. But syncope related events are usually a person falling totally to the ground and passing out- due to lack of oxygen and blood to the brain, it just doesnt make it all the way to your brain. They can do a holter monitor which I had done- where you ware a portable EKG for 24-72 hours and you keep a journal of everything you feel, when you go the bathroom, when you run or breath a lot, when you sleep etc.. they can connect the readings to your diary and tell you if you have a heart condition or not. There are tests in office they can do to see if you have syncope but usually it involves someone passing out- a few people do have grand-mal like seizures due to syncope too.
Please check with a cardiologist to make sure..

Take care and be safe-
Crystal

 

[Ruthie]

Thanks for the replies.

I do have an underlying autonomic dysfunction that causes me to pass out--I have a firm diagnosis of that (cardiology and a large team of specialists to go along with it). The problem is that I'm having other episodes that seem to be seizure related (colored dots in my vision, temporary paralysis, nausea, smelling things that aren't really there etc). These are clearly different from my autonomic episodes and I do NOT pass out with these episodes (but I do pass out with my autonomic stuff). Sometimes I do get a fast heart rate and have trouble breathing with these "seizure" episodes but it's still different than "just" my autonomic condition flaring.

Two neurologists and a GP tell me it sounds like I'm having seizure activity but another neuro. wants to blame ALL my symptoms on Autonomic stuff. His statement to me was, "It would be rare for you to have seizures and Autonomic dysfunction co-morbidly". Well, first of all NOTHING in my case has been 'normal', I'm dealing with several unusual conditions. Second of all, science has taught us that the autonomic nervous system does get involved during seizures for many people. So in my mind I think if my autonomic nervous system does not work properly (ie....the communication between the brain and nerves/organs is not working right) then it seems one could easily make the other condition worse or even potentially be the cause of the other problem. If my autonomic function of the brain is misfiring then isn't it plausible to consider that that 'misfiring' is sometimes spreading and causing a seizure? I just really don't understand this Neuro's statement but he is my only option to stick with for a neuro Dr here because nobody else around here will take my case because of the complexity and the fact that hardly anyone knows how to treat or handle autonomic disorders.

I'm not being totally brushed off by this neurologist---he has agreed to do a video EEG while I'm in the hospital for something else but I'm still concerned. Things have calmed down a bit and I'm not having daily symptoms anymore (of the 'seizure' related stuff) but that also means it might be harder to capture one of these spells. His words were, "we'll leave you hooked up for 23 hours and if nothing shows up we can rule out seizures". My understanding through reading on this site is that would not be enough to rule it out if I didn't even have one of these episodes while hooked up.

I asked if we could go ahead and try a small dose of medication to see if it would help but because of my underlying autonomic disorder he is not willing to do that.
I may eventually get some help but bottom line is that I'm going to have to return out of state to a clinic that has autonomic specialists and seizure specialists so they can put their heads together and agree on a treatment plan they feel would be safe.
It's very frustrating and it delays the time I can get any real help. I've been having a lot of problems with this since beginning of June and I can't get in to the place I need to go until November.

 

[Nakamova]

Hi Ruthie --

I think you're absolutely right that conditions that affect optimal brain function exist along on a spectrum, and can co-occur, be causative, and/or correlative. Things that cause fainting (low blood sugar, low blood pressure, dehydration) can also cause seizures, especially if there's already a lowered seizure threshold. Some of the symptoms that you report as "other episodes" -- colored dots in your vision, nausea -- can occur with fainting or near-fainting. But the paralysis, and the strange smells, definitely are more seizure-related. Because there is no single diagnostic test that can conclusively rule in or rule out epilepsy (EEGs being relatively unreliable or imprecise), the doctors have to look at clinical evidence (i.e. what you actually experience) for confirmation. It does seem that the better-controlled one syndrome is (autonomic dysfunction) then the better controlled the other (seizures) would be, but as you say, that's a call that you'd want a really good specialist to make, especially given the disagreement among the docs you're already seeing.

 

[brain]

Errr ... Houston, we have a problem here ...

I hate to say this, no one can go in for a
video electroencephalogram for 23 hours
and come up with a result! I can assure you
of that (and I am positive there are hundreds
of others who've been in there that can back
me up as well). Never mind the fact we've been
stuck there for days, and never mind that many
had been stuck there for weeks, even months,
just waiting for one danged seizure to show up!

While mine have been captured and recorded
but they kept me there anyway - but others,
stay and wait, and wait, and wait ... endlessly,
and it's a "dry joke" that V E E G is a "cure all".

While I agree 100% that Cardiology and Neurology
should work together, but I am a very strong
advocate of a 2nd opinion; you should not stay
or stick just because ONE Neurologist said ...
go for a 2nd or even 3rd opinion. Doctors are
human and they aren't perfect either.

I have a cardiac problem - MVP with regurgitation,
I have a neurological problem - progressive,
which also includes Epilepsy. Heck, it impacts
my whole body as a whole, and does this
Physician honestly and sincerely believes
he is going to have an answer in 23 hours?

onder:

I was born this way, they didn't drum up all
the answers and conclusions as well as finalization
in 23 hours, I can assure you that! Even the most
recent videos I had, even though they've captured
them (I went in twice), they've kept me there;
WHY? I dunno - maybe they liked me!

{sarcastic}

I even had the Doc tell me enough with the little
ones and wanting big ones - what does he think
I had? Remote control and click at will? It so
seemed that way with that Doc I had ... *smirks*

:roflmao:

If that were possible, then the 23 hour V E E G
would be a reality, it would make everyone's
dreams come true! No more heartaches of
having to be stuck in the hospital ... and then
trying to scratch because the glue .. (oh never
mind - you don't want to hear it) ...

{/end of sarcastic}

:agree:

 

[Fifi]

I realize that this post is quite old, but I was so happy to find it. I have introduced myself in the forum, asked specifically to talk to others with autonomic epilepsy, waded through many, many posts with any tags relating to Dysautonomia and this is the closest I've come to any results. I was diagnosed with POTS, but treatments were not working, in fact all of my symptoms were getting worse. I made an appointment with one more neurologist, as a last resort before giving up. All of my labs and tests came back normal. When I went to the follow-up appointment, expecting to be told once again that I was crazy, or stressed, or just plain wimpy the doctor surprised me by telling me he thought he knew what was wrong with me. He basically explained that all my symptoms were a precursor to seizures. My brain is like a cars engine revving and accelerating, and the seizure is like that car running into something. The seizure could be tonic clonic or a simple partial it didn't matter- that all of my symptoms of Dysautonomia were present until the abnormal electrical activity put a stop to the symptoms. I was skeptical, but I started anti seizure medication and felt relief from my most aggravating symptoms almost overnight. I am still trying to get the medication sorted out, but I am absolutely certain that my doctor was right. He really told me to stop over thinking things and be willing to try something that was possibly going to help, instead of worrying about what the exact cause was or what I have is called. This was long and a bit jumbled, but I have total confidence that I am on the right path and I really feel that more people could be helped in the Dysautonomia community if people would stop trying so hard to avoid flairs of symptoms that they avoid trying something outside of their comfort zone.