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Confused and Frustrated
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momsa261 posted:
Thirteen years ago, I had a car accident, and I shattered my windshield with my head. I never lost consciousness, and all tests never showed anything abnormal. Years and years later in 2004, I had my first seizure - a grand mal...eyes rolled back... lost consciousness is what I was told. Last memory I have was I was sitting on the couch and the next minute I was being thrown onto a stretcher and being taken downstairs and off to the ER. I followed up with my PCP, but he never put me on any medication and never diagnosed with epilepsy. In 2006, I had an episode that resulted in lack of speech and movement. I had to be carried to the car. Doctor at the hospital thought I was a having a stroke. I never lost consciousness, so there was discussion about possible TIAs. Doctor placed me in the hospital for a week to run tests, and I was released with a diagnosis of focal migraines. Nothing negative or abnormal showed up on any test. Doctor didn't really know what to say. I wasn't put on any long term meds. In 2011, I started having more episodes, so I saw a neurologist. He was hesitant to put me on Trileptal because he really didn't think I had simple partial seizures, but that's what he diagnosed me with at that time because most of my symptoms pointed at that diagnosis. I stopped taking my meds because they made me feel horrible. All the while, I'm thinking and hoping that I won't have any more, but I have had more. Two weeks ago, my episodes started back up again. In the last two weeks, I have had over ten. I have had all the tests you can possibly have, and nothing shows up abnormal. I'm at a loss,and I'm frustrated and confused. I am looking for a good doctor, but the earliest I can get in to even see a doctor isn't for another two more months! The doctor I saw today was a joke. She told me today that I'm suffering from silent migraines and to take B12. I hardly have any of the symptoms that are associated with this diagnosis. Every doctor I see tells me something different. Here are my symptoms: jaw clenches/tightens before my spell. I feel off and fuzzy. The right side of my body feels limp and I have also had some jerking or twitching in my right arms and hand. I can't talk or move for a couple of minutes. I stare off into space. When it passes, sometimes I recover pretty fast, but lately I have been having what seems like several back to back, so I have been pretty tired after they pass. Tears fall down my cheeks and sometimes I get quite emotional. Sometimes, I get a stomach ache, so I know something isn't quite right with me and I get a bit scared. Any help out there is greatly appreciated. I need some support because I feel like any doctor I see thinks I am crazy. I know there's something wrong, but no one seems to have any answers for me.
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hawiian_girl11 responded:
Aloha,

Sounds like you might be having complex partial szs or a Basilar Migraine. I can not dx anyone because I am not a doc.

Just offering suggestions and advice

I worked as an RN for 13 years but have not worked in 9 yrs due to epilepsy.

I have complex partial szs and left temporal lobe epilepsy or L-TLE.

I take 3 meds for it plus I have a VNS implant as well.

You can not stop taking your meds and do NOT do it without your doc's permission or you can precipitate bigger problems.

I also have Migraines without auras and take multiple drugus for it as well. A triptan drug called Imitrex. It comes in both a pill and a auto injector I use both forms, Verapamil a Calcium Channel Blocker, Botox and multiple pain killers.

I take 800 mgs of Lamictal, 200 mgs of Topamax, and 4 mgs of Fycompa.

the paralysis you get is called Todd's Paralysis. It occurs only on one side.

The staring and and fuzziness, and stomach problems, and tiredness, and confused state, and crying and mixed emotions can occur during a complex partial sz

you are not nuts like your doc thinks you are. you are joined by many of us. Migraines and epilepsy go hand in hand with each other so you may have both.

YOu have one doc saying one thing and one saying the other and you need one that will pick up on both at the same time.

you stopping your meds and having more episodes and the back to back stuff can be dangerous. You could find yourself in Status Epilepticus. A serious medical condition that requires an ER visit and rectal drugs to stop it.

I had a car accident as well and was dxd wiwth Epilepsy 8 months later when I had my first sz a grand mal that they later determined was a complex partial that moved so fast that the naked eye only saw the T/C part of it.

I had it the night before my college graduation.

SO the next day was a total washout.

I hit my head on the steering wheel. I wound up with a head injury and whip lash.

THus ending my work and driving for ever.

Nancy


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