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Feeling Alone in My Diagnosis

Wed, 03/07/2018 - 13:57
I’m new to epilepsy. Started having seizures two months ago (5 per day). My seizures have a typical aura but then involve my vision fading out and losing consciousness for several seconds, but no twitching or jerking. Just got the confirmed diagnosis after the extended video EEG this week that they are in fact epileptic seizures. At first they were suspicious I had psychogenic seizures because the seizures were “atypical.” Because of the way i describes my vision going black. The first neurologist sent me to an epileptologist. What’s making me feel very alone is that they discovered my seizures are relatively small and minor, just a focal temporal lobe seizure. What causes the vision and passing out is actually a vasovagal syncope. The odd part is, it’s apparently very common for vasovagal syncope to CAUSE a seizure due to the lack of oxygen to the brain. However, in my case, they recorded five different seizures on the EEG/heart rate monitor and in two of the seizures I had the vasovagal syncope, (the only two where I lost consciousness) and the other ones only a seizure without syncope (no loss of consciousness). Also the timing of the events on the EEG is VERY clear that the seizures are happening FIRST, before the syncope so the seizures are causing the syncope. It’s very frustrating because I’ve seen two neurologists, two cardiologists, and two electrophysiologists and NONE of them have seen this before. They’ve all seen where syncope causes seizures but never the other way around. I’ve scoured the internet as well and every search I do the only articles I get are about syncope being misdiagnosed as epilepsy or about syncope causing seizures. I’m feeling very discouraged, alone and afraid. How can I trust my doctors to treat this if they’ve never even seen it before? Has ANYONE heard of or experienced a similar condition to mine?

Comments

I have never heard of or

Submitted by birdman on Wed, 2018-03-07 - 21:38
I have never heard of or experienced what you describe.  Has a neurologist not place you on any medications for the seizures?  The discussions you have with doctors is one way they go about making a diagnosis.  EEG's often give answers and support.  We often think of medication as just treatment to relieve the symptoms.  But "drug trials" also are a tool used by doctors to make a diagnosis.  It would be interesting to see if an anti-seizure drug worked on the seizures but not on the syncope.

Hi!  I have epilepsy too.  I

Submitted by mouse.a.2810 on Thu, 2018-03-08 - 16:35
Hi!  I have epilepsy too.  I have had epilepsy for about 4 and a half years.  The doctors still don't know what kind it is.  I have undergone many EEG's, including one where I couldn't leave the hospital room for 5 days straight.  I don't have the same type of epilepsy as you, but I understand your frustration.  You are definitely NOT alone, and you have to remember that.  Sometimes I feel alone too.  It feels like no one is really understanding you right?  I totally understand what that's like.  but there are so many people out there who are going through the same thing.  So don't worry.  It may take a few try's but you WILL find the right doctor and find out what's really going on, and everything will be alright!

In the early 1990's to become

Submitted by birdman on Thu, 2018-03-08 - 16:42
In the early 1990's to become a candidate for brain surgery my doctors wanted me to go through and fail three "mono-therapy drug trials" to prove that my seizures were refractory.  I failed three drug trials which confirmed my seizures were highly unlikely to be controlled by drug therapy.  There are "clinical drug trials" which are done to test for FDA approval.  But right now I am testing out number 16 (Briviact) of all the medications I've tried for seizures.  Briviact has FDA approval for seizure treatment.  But for each patient every untried medication is a test since we are all different.  How we respond to these personal "drug trials" gives answers to our personal epilepsy characteristics.  This is why I always say we need to keep a personal record of seizures and medications that we try.  These trials provide valuable info.

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