Other Epilepsy vs pseudoseizures (pines)

[SeanCharles]

@shimmerz I happened upon this post and thought I would share my situation... Yes, I have seizures. Have had them since the first onset of 1997, ironically before I had a diagnosis of ptsd. The neurologist I saw then, immediately without a proper testing has labeled me as "Epileptic" I've been on a couple of anti-convulsants, as I am now (for compliance which I will explain in a moment) since having another seizure while on the clock at work!

I had come off my medication (Generic Trileptal) back in 2009 when I decided to switch insurance over to company benefits when my state benefits came for recertification. I figured then, what I know now to be untrue...

Anyway, In December of 2013, two weeks before Christmas, I have a seizure at work! As a result the neurologist, on call, restarted my med I was on previously.

Compliance: Even though I have been taking this medication to prevent seizures which I haven't had another since being on it, not a full blown (appears as a Grand mal where I lose consciousness to the point of turning blue in the middle before suddenly remembering to breathe after that period) I've had a few auras which appear and quickly disappear.

My problem is, I am in a small town with a single neurology practice, except some surgeons. Because I stopped therapy, the neurologist refused to see me.

I am remaining on the medication for the time being in order to fight a battle I choose to fight now... I am in the process of obtaining a medical leave from work (my ptsd and other medical issues)

I am also in the process of fighting for a disability status determination from the state. My plan is to obtain a second opinion from a neurologist who specializes in identifying epilepsy versus non-epilepsy. Unfortunately I need to go 350 miles out of my town to do this since my clinic doesn't have a video-eeg for the testing I feel needs to be done.

I am tired of being on a medication which may be causing other problems because the root problem IS being ignored... which is how I found this forum while connecting dots for possible confirmation which I don't yet have.


Sean/Geordie

 

[shimmerz]

@SeanGeo yes, the dreaded, \you didn't do what I told you to do so now I won't help you' thing. Beautiful. @Laura 2 and I came to something along the way as well that further complicates this for me. I had an MRI (am waiting for an fMRI) but am now second guessing whether that is a good idea or not as they will take my license away. My car is truly my only 'safe place' in this world and if I lose that - game over.

I am not certain if you have seen this link but if you have maybe it will help someone else. I suffer from non epileptic seizures (not diagnosed by any non-rocket scientist could see from my behaviours that these are fear based seizures)

http://www.epilepsysociety.org.uk/non-epileptic-seizures#.U5oOXPldWSo

Not certain even this captures it but at least it breaks the mold of first line anti convulsant meds being doled out, that, as you say can cause way more harm than good.

If I lived close by I would drive you the 350 miles just so you had proper equipment, and a doctor without a chip on his shoulder. Will you make the trip?

 

[SeanCharles]

@shimmerz I am planning to make that trip. I am hoping to first seek a referral because I am sick of all the bull shit and game playing I am getting in this town. I unfortunately lost my license. At one point I supposedly manipulated a neurologist in the local clinic to give me a doctor's note to get my license re-instated. At that time, it had been year and I at least thought I was stabilized.

However, since this last seizure I have been doing a lot of research, including everything I can to find the truth... It's out there, you gotta look for it! (reminds me of the X-Files) :roflmao:

Sean/Geordie

 

[shimmerz]

It's out there, you gotta look for it!

Yes, it sure is. The question is are those 'powers that be' willing to be open to something that does not fit into their box. *heavy sigh*.

 

[SeanCharles]

@shimmerz

The question is are those 'powers that be' willing to be open to something that does not fit into their box. *heavy sigh*.

I don't take no easily. The first time they tell me no, I close the door in their face and find somebody else's door, as I am persistent! I don't give up easily. I've been dealing with hurdles since I became independent! I just need to make sure that I conduct my research and know what questions to ask.

I've been dealing with this outside the box for as long as I can remember. I will jump hurdles as long as I need, if I get tired of that I move on to the next event.

Sean/Geordie

 

[Laura 2]

@SeanGeo - I so admire your spirit. It's not so easy in some countries to fire the doctors. It makes the search for accurate answers and appropriate treatment incredibly difficult.

But, I completely agree, you have to become an ace researcher and know your condition inside out. You find that the powers that be don't know half as much as you'd expect and are not too fussed about finding out. 'Evidence based medicine' rules these days and it's nothing but statistical probability, not personalised care.

 

[SeanCharles]

@shimmerz and @Laura 2 In the course of my earlier reply or (replies) I also failed to mention that the same neurologist that has me misdiagnosed did do a Brain MRI. From my understanding, he was looking for heterotopias, which I believe are grey areas in the brain? I am not so sure what this neurologist was actually doing aside from using me as a lab rat.

Ironically though, this neurologist did have an associate try to murder them. That Associate is now in prison... (Last I knew). And anytime a patient threatens him with murder he isn't fazed or something. It's not me who threatened them...

Yeah, I just figured it out... from 2009 to 2013, I had been seizure med free for 4 years (almost 5 had I not likely aggravated the seizure threshhold... (I say that because I may have triggered it because of: 1. Chemicals I used that morning 2. possible sleep issues, not enough sleep since I worked earlier than I had been scheduled an hr-1/2 3. Head trauma (I have this metal trash cart that I would love to disamantle and send to the Corporate Headquarters with a letter attached) from doing a :banghead: on which is not purposely done, it's a matter of blindly missing spacial arrays. (if this is confusing, please ask me to explain or I will edit this myself.)

 

[Hyppi.Love]

Wow... Finally someone I can relate to...

For the last 5 years I have been having seizures, 1 year to the day after my Diagnosis of PTSD. When the seizures began a doctor said I was having "pseudo seizures", which I did not know pseudo meant "false or fake". I was admitted to a hospital soon after where I began to seize violently to a point my heart stopped, I went into a coma and ended up on a ventilator where I seized 300+ times in 3 days, clearly confirming the seizures were real. I do not have epilepsy and I was diagnosed with PNES... Which is defined by neurological seizures which are triggered by stress. I am searching for relaxation techniques & advice on many other things if you have found anything that helped....

 

[shimmerz]

So sorry to hear that @Hyppi.Love. It sounds like a tough one. I was not hospitalized for it - as the hospitals here do not understand it - I have been abused greatly the few times I was taken in so my caregivers have been directed to not allow me into the hospital. I have no record of how many times I seized as I dealt with it on my own. My last one was yesterday. For me it lasts for quite some time - days - although it has decreased over the years. They threw me onto colonazepam and ativan to help stop them - they are effective to a degree.

Acupuncture has helped to a degree as well. I cannot meditate as I immediately go 'out' and can't retrieve myself. My heart rate goes down to nothing - parasympathetic clicks in big time - stopping my breathing, shoots my temperature up etc. All a big ball of bad.

May I ask, how did the hospital deal with your seizures? How are you now? Also, are they triggered by stress or triggers of some sort?

 

[Hyppi.Love]

Sure, I went through many er overdoses of Ativan to a point I have adverse reactions and can not take it any longer. I became a guinea pig for the first 3-4 years doing neuro studies, psychiatric evaluations, MRI's, Seizure /Epilepsy tests...trying out keppra, clonapin, Dilantin, Ativan, etc. then once the seizure meds failed they tried antidepressants, and more. I was having multiple violent (grand mal) seizures everyday. I developed fibro myalgia, chronic fatigue, and had a stroke due to my heart rate elevating. I am on medicine for all of that as well. I am on amitriptyline, trammadol, cymbalta, gabapentin, vitamins, & prazosin. My seizures began to change I still have them, but less of the violent episodes. The hospital has direct order not to medicate me overly and to contact my doctor upon arrival. Which leaves me paranoid if I am in a distant location. I was put on SSDI, I have been restricted from driving, and I am no longer permitted to work. I am 37 years old and my life has completely turned upside down & back up because I am learning everyday to accept my illness as a part of life meant to humble me vs. looking at everything as a loss because I realized when I got upset or over extended myself the seizures worsen. Triggers for me are:
Stress
Anxiety
Trauma
Hormonal changes
Heat
Anything that causes rapid eye movement

 

[shimmerz]

meant to humble me vs. looking at everything as a loss because I realized when I got upset or over extended myself the seizures worsen.

Yep. What an assault this was for me. The more I tried (and all my life I have charged through life and NEVER given up ANYTHING), the worse it got. Still don't think I have got this part right yet.

I feel your posting @Hyppi.Love Scarily so. I am so sorry for you.

 

[shimmerz]

From my understanding, he was looking for heterotopias, which I believe are grey areas in the brain?

How did I miss this?? @SeanGeo are you still there? I have grey matter heterotopia. I was diagnosed years ago after an MRI was done. Can you tell me what your status is on your seizures? Do you mind?