Some neurologist are AMAZING inside and out BUT not all neurologists are created equal. They wrote in her notes that she was medication seeking and seizing for attention. When I read that, I was like YOURE JOKING RIGHT.. I went to her page and sure enough, everything she had been through shown in videos. What kind of brain tumor survivor who had to relearn to walk, had diagnosed strokes, focal seizures on an eeg, and more is out here having seizures in the middle of a church (where many people think it could be demonic) for medication?? I wish I could say she was the only one this is happening to. I’ve had positive EEG’s for epileptic seizures and still had normal EEGs when I wasn’t currently having a seizure. That being said, many seizures are caught out an EEG if they’re deep within the brain. You need to intracranial EEG. And focal seizures are notorious for being deeply in the brain. Some of my EEG show the second two seizures, but not the first convulsive seizure because they start so deep within the brain that it doesn’t pick up the first seizure. I have been invalidated and disregarded so many times. So many other epileptics have to. This is why many epileptics and parents of epileptic children bring giant binders of their medical history with them. Her heart was also acting weird in her notes towards these seizures that they are treating as PNES. This is common with epilepsy, but also common in convulsive syncope. My point is, if you’re this doctor, why? Why are we not doing better for the patient? What happened to healthCARE? Why are you in this field? If you can’t care about a patient? Why are we not believing patients? That’s all.
#EpilepsyAwareness #StopTheStigma #BelievePatients #NeurologyNeedsChange
Navigating the healthcare system as an epilepsy patient, especially those diagnosed with focal epilepsy, can be an overwhelming and emotionally taxing journey. Many patients, like brain surgery and stroke survivors, experience seizures that are deeply rooted in the brain. This often results in standard EEGs showing false negatives because traditional EEGs might not detect seizures originating from deeper brain areas. Intracranial EEGs become necessary, but are often underutilized. Moreover, the stigma surrounding epilepsy and seizures continues to affect patients negatively. Misdiagnosis, including dismissing seizures as psychogenic non-epileptic seizures (PNES), leads to inappropriate treatments and lack of proper care. Some neurologists may underestimate patients' experiences, labeling them as medication seeking or attention-seeking—an approach that can be damaging and invalidating. Many patients and their families carry extensive medical records to advocate for appropriate care due to repeated skepticism from healthcare providers. Additionally, cardiac irregularities can accompany seizures, making diagnosis even more complex. Empathy, thorough investigation, and an open-minded approach are essential from neurologists and healthcare professionals. Improved awareness about focal epilepsy's presentation, including the need for advanced diagnostic tools like intracranial EEGs, can drastically improve patient outcomes. Patient-centered care must focus on listening and believing those living with epilepsy to break the stigma and build trust. Changing how neurology addresses these issues is crucial to providing effective healthCARE that truly supports patients' needs.
After I had my first tonic clonic seizure the ER referred me to a neurologist who never did any bloodwork to check my levels of my medication. She had my medication at the highest daily dose and gave me 2 separate rescue meds that cannot be administered at the same time. She would adjust my medication on a whim without bloodwork. Then be shocked when I was consistently still having seizures. This went on for 2 YEARS. Then tried to put me on anxiety medication and suggested that I have PNES. I left immediately and switched to a new neurologist. Within the first appointment he had scheduled an epilepsy study in hospital without any medication. I left that study with idiopathic generalized epilepsy diagnosis. We also learned that I was having hundreds of seizures that I was functioning through without knowing every single day on top of my tonic chronic seizures I was having every 1-2 months. I am now over a year seizure free and finally able to drive!!