Medical Misery

Hello Everyone,
I'm Sami and I'm 23 years old. On Valentines Day(2012), I was diagnosed with Epileptic Seizures (among other things... Chiari Malformation with Syrinx, gastritis, ovarian cysts, acute cholecystitis...) On St. Patty's Day, I was diagnosed with Nonepileptic Seizures. Shortly after, I was sent to Cleveland Clinic for a five day evaluation where they found only PNES. While I was there, I was on two anti-epileptic medications for all but one day. I don't feel like they were comparing apples to apples. Cleveland Clinic took me off all my AED's, then when I came back home my seizures got worse... and my neurologist would not return my phone calls about my concerns about being taken off all my meds. Long long long story short he ended up dismissing me as a patient! I guess I got too annoying for him! They would never call back for questions or EMERGENCIES!!! How rediculous!? I just wanted a straight answer... epileptic.... non epileptic... or both. After that I was left 'hanging' by myself until I was able to meet with my new neuro (today). When I met him today he was wonderful until I mentioned that I was also diagnosed with PNES. His whole attitude changed after that. He told me I need to excercise.... work on my internal self.... try to be happy... bla... bla... bla... I dont get it. Yet, he put me on not one, but TWO antiepileptic drugs.... so why put me on medication for something you dont think I have in the first place??? I am so sick of fighting everyone. I am in a great spot in my marriage, and in my relationship with my Lord and Savior Jesus Christ!!! I have amazing support from my family and friends. I just don't understand how they can keep saying it is all psychological when I dont feel like I am under emotional stress or have never been abused. If anything the doctors are causing the emotional stress! I just want some answers of why this is happening and what I can do to get them to stop. Does anyone out there have anything similar going on? I think there needs to be so much more awareness out there for people. So many people think you are just faking it and that is so not true. It is not a fun thing to have or go through. My heart goes out to all of you who are in the same boat as me. I have worked in the medical field for the past seven years and have experienced this first hand.... and even people in the medical field need education about this disease! There are so many people who do not understand what it is like. They think we can control this. They think we are trying to get attention. They think we are crazy... and I can tell you WE ARE NOT! This is 100% REAL!!!
samiannie813 samiannie813
5 Responses May 16, 2012

I have the same syptoms. I first presented signs during my sleep cycle and was completely unaware until my partner told me about it.Shortly after being told about it I began having seizures frequently during the day. I consulted my family doctor first thinking that he would have an answer. He put me on an initial anti seizure med. It helped but not completely. While waiting for approval and intake for a neuro I continued to consult my G.P. He did the best he could and given the circumstances he was amazing but still he insistead I see a specialist. It got to a point that I was hospitalized. There I finally saw a neuro and was kept for so long that they had to wait for the anti seizure meds to come down before releasing me. In the meantime I was given multiple EEG's and even an MRI. All came back normal. Nueroloist was at a lost as I kept having "episodes" during my stay. Eventually I was loaded with more of the same meds and additional ones. I finally saw my near and he had multiple EEG's and surprise all again was "normal". I was admitted for various other reasons. (appendix removal, car accident) each having complications do to the condition. I finally threw up my hands and went to visit family in the midwest for some piece and rest as I live in a big city. Again I was admitted for extreme seizure activity multiple times. At the lat time an incredible near came in and looked at me and diagnosed me with PNES. Thank the higher powers! Finally a doctor that knew. She cut my med dosage in half saying at that time she didn't understand how I was able to walk with that many meds I was on. She prescribed me a med called Vimpatt. It has helped a lot although according to her I will always have seizure activity just not as severe. I see a neuro, behavioral health specialist, G.P. and a Nerou psychologist to measure how much damage is being done by activity. Help is out there. It took me going halfway across the country to find the right Dr. But they are there!

do you believe in jesus christ? a man who came and said, if any one comes to me i will not cast away? it is written that he bore our sins and sicknesses. to receive it, we must believe on him and call upon his name, he is rich in mercy to all that call upon him.

I've had a lot of extra stress with doctors disbelieving me and treating me like a crazy person. Dealing with prejudiced professionals is worse stress than actually having seizures, at least in my case. I've also had lots of people try to get me to go to the ER because they saw me having what they identified as epileptic seizures - I was not unconscious so I was able to refuse. Yes it is real, even if the main trigger is stress, and even if the brain overload is not discernible on an EEG.

I feel you....In the medical field embarrassing being the "code stroke" one month diagnosed with epilepsy the next then put on FMLA for do I give an answer to everyone when they'd the tests go....what did they say? I'm like you I keep praying and put that full Armour on every day...but man it's hard. They think you're faking. I'm waiting to see a psychiatrist and my neurologist won't return my calls.

This is pretty much exactly the same situation I have been in for the last year. Was put on anti epileptic drugs which totally screwed with me to the point where there would be days where I cod barely move. I got admitted into the epilepsy society residential hospital and had video telemetry and eegs. Tests showed nothing abnormal even though it caught a seizure in my sleep. Diagnosed with non epileptic seizures and I'm not happy about it. It's awful to think other people are jn the same situation as it is frankly horrific!
Jess 19