03/14/2026
Do you have an undiagnosed and untreated health condition?
Do you suffer from headaches?
Do you have unexplained symptoms such as "brain fog, zoning out, forgetting things?"
Focal Aware Seizures (Patient is conscious):
Motor: Jerking or stiffening of a specific limb, face, or body part.
Sensory: Unusual smells (e.g., burning rubber), tastes (e.g., metallic), or strange sensations like tingling or numbness.
Visual/Auditory: Seeing flashing lights, hallucinations, or hearing ringing/sounds.
Psychological/Autonomic: Sudden intense fear, joy, déjà vu, or a "rising" feeling in the stomach.
Focal Impaired Awareness Seizures (Consciousness is affected):
Automatisms: Repetitive, non-purposeful behaviors like lip-smacking, chewing, hand-wringing, or picking at clothes.
Behavioral: Aimless wandering, running, laughing, or screaming.
Cognitive: Staring blankly into space and inability to respond to others.
Post-Seizure Symptoms (Postictal Phase)
Confusion, fatigue, or tiredness.
Temporary weakness in the affected body part.
Speech difficulties.
Do you have ANY unexplained symptoms doctors can't seem to figure out?
Maybe it's seizures too deep within the brain that traditional EEG can not pick up?
Most doctors are not aware checking the prolactin can help differentiate seizures from other conditions. The trick is having the lab drawn 10-15 minutes after onset of symptoms. Thankfully now there are labs where we can pay out of pocket for such testing.
Mitochondrial Disease causes Encephalopathy. Encephalopathy can cause seizures.
In the past When I had an illness I would have headaches. My headaches are in the left temporal lobe. They are not classic migraine headaches. My hearing would become amplified. I would smell skunk or smoke. I would panic looking around the house for an outlet that was on fire. I would have terrible anxiety. I developed episodes of tongue biting in 2017. I don't have sleep apnea.
I went to neurology in 2012 concerned I was having seizures. I had Intracranial Hypertension. My EEG was normal. They didn't care what caused the swelling on my brain. With my health journey I have learned seizures can cause Intracranial hypertension. Doctors call it ideopathic because they "don't know what caused the Intracranial hypertension"
I had febrile seizures as a child. New research, at that time, showed febrile seizures as a child increases the risk of seizures in your 20's. I was told I was not having seizures because my testing was normal with the exception of mild Intracranial hypertension. I was given oral steroids which caused cardiac symptoms. This led to a cardiac work up and more medications which made my symptoms even worse. My history was not considered. I stopped everything , started on supplements, and headed down the path of holistic medicine. They refused to start me on seizure medication.
Mitochondrial Disease wasn't a word I had ever heard of until this past year. What I have learned with my most recent flare is that the medications I was prescribed back then are on the DO NOT take list for Mitochondrial Disease.
In 2017 I started having episodes of blurry vision. I was told I needed glasses. The problem is I didn't always need them. In hindsight the vision issues I had are consistent with visual changes from focal seizures.
My life fell apart in 2018 (6 years later). Thankfully God made me a nurse practitioner, nursing educator, and pulled me into Holistic Medicine in 2012. I was able to find answers on my own. The hard part was finding a doctor who would listen to me.
Neurology, Endocrinology, and Primary Care monitor my seizures by monitoring my prolactin. My prolactin was in the 200's when I suffered a brain injury from undiagnosed and untreated epilepsy in 2018. Neuropsych testing allowed me to find ONE doctor who listened and believed the story I presented with. He helped me get the right treatment.
Today I know I have Mitochondrial Disease. The exact variant remains unknown. My history is consistent with MNGIE and MELAS. It could be a metabolic myopathy. As for the exact variant I no longer care. I have control of this for the fifth time. That is all that matters until another flare occurs.
Vimpat is the seizure medication I take for focal awareness seizures.
I share my story in hopes it helps one of you. When traditional medicine says, "I'm sorry there is no cure. There is no treatment. There is nothing we can do except manage symptoms and watch this progress. Holistic Medicine says, I've got something we can try. I can't guarantee it will work but there is hope. Genetic medicine shows we can turn on and turn off our genes by changing certain things on our life."
It's Your Health and we have to create our own healthcare teams both inside and outside of traditional medicine.
I have added a couple articles below. A lot of doctors don't listen to their patients. If you take the research with you then they take interest.
In 2018 My prolactin was so high it didn't have to be performed 10-20 minutes after an event. My seizures occur during the night. My oxygen drops. My heart rate spikes more than double my baseline sleeping heart rate. The Oura Ring helped me document my heart rate and oxygen levels which lead to neurology starting me on seizure medication. My son is also on Vimpat for Pyroxidine Dependent Epilepsy and does well.
Checking the prolactin is not standard of care. You may have to fight with your doctor to get the test ordered. Fight if you must.
Seizure medication lowered my prolactin from 200's to 50's. Normal is less than 30. A year after starting on seizure medication I had to start on cabergoline for a suspected prolactinoma. Endocrinology said My pituitary is squished (empty sella syndrome). She suspects I have a small brain tumor (prolactinoma) since seizure medication alone did not lead to my high prolactin returning to normal baseline despite two seizure medications.
The second seizure medication we added was Lamictal. This was short term management. Today I know Lamictal provides Mitochondrial protection. I have tried to come off of the cabergoline. My prolactin rises back to the 50's as soon as we stop it. I was able to discontinue the Lamictal in 2020. With this last flare I had to add the Lamictal back to my cocktail this time not for seizures but for Mitochondrial protection.
Having my seizures controlled changed everything.
My most recent flare was caused by neurology discontinuing my Vimpat (seizure medication). This was the WORST decision EVER.
God gave me multiple health stories, made me a nurse practitioner, nursing educator and lead me into holistic and functional medicine so I can use the knowledge he has provided me to help others suffering as I once did
Check out my website at learningtolivehealthier.com
Check out the articles related to my post below....
Seizures and Hyperprolactinemia
https://publications.aap.org/aapgrandrounds/article-abstract/15/1/8/89918/Serum-Prolactin-Predictive-in-Epileptic-Seizure?redirectedFrom=fulltext
https://www.neurology.org/doi/10.1212/01.wnl.0000178391.96957.d0 #:~:text=Recommendations:%20Elevated%20serum%20prolactin%20assay,adults%20and%20older%20children%20
Seizures and Encephalopathy
https://pubmed.ncbi.nlm.nih.gov/21590624/
Seizures and Intracranial Hypertension
https://www.neurology.org/doi/10.1212/WNL.0000000000202518
Learning to Live Healthier