Seizures mistaken for drug abuse

Welcome to Mayo Clinic Connect, @mmdl. I'm truly sorry to hear that your daughter had seizures 5 days in a row. I would have called the EMS for one of my children, too.

Confusing that they said it looked like withdrawal and it was a seizure. Tagging a few members who may know of situations like this such as @jakedduck1 @santosha @kelspal @adoptivemother @methel for their input.

What ultimately happened with your daughter? Did she get taken to a hospital or was she given any instructions?

Hi @mmdl
I am truly sorry to hear about what you went through. My heart goes out to you and your daughter.
This is the first time I've heard of epilepsy being mistaken for drug withdrawal - what a frightening misdiagnosis that must have been.
How is your daughter doing now? Have her seizures stopped? I really hope so. Were you able to get her to a neurologist for proper diagnosis and treatment?
Chris

Hello,

My daughter is a young adult and I was not present for most of her seizures that initially happened at college. When she moved in with me, she was threatening to kill herself, so when I found her having a grand mal (my first time experiencing it), I called 911 and they assumed it was drug induced. Drugs and alcohol can absolutely be a primary or secondary cause of seizures. https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/drug-abuse
https://epilepsysociety.org.uk/about-epilepsy/epileptic-seizures/seizure-triggers/alcohol-drugs-and-epilepsy
In my daughter's case, she has epilepsy which is caused by an encephalocele (brain leaking out of a hole in her skull that never closed in utero). However, using drugs, especially alcohol, brings them on. Sometimes, if she drinks a lot, she will have a seizure a day or two later. Part of the issue is also that when she is super high or drunk, she forgets to take her meds and that causes seizures.

If you are at the beginning of your journey, the first step is to find a neurologist or epilepsy specialist who can order an EEG to measure her brain waves and catch a seizure. Sometimes, they deprive patients of sleep or have them participate in their triggers to bring one on, and ironically, they can even order alcohol be given! It is common to have an EEG but not catch a seizure. They then might order a longer running EEG or analyze the waves to look for abnormalities that occur in between seizures.

On your end, keeping a specific journal will help diagnosis and add credibility. Record date, time, what she was doing before hand, exactly what happened during, what she was like after, and get used to timing the length. There is a point where rescue meds should be administered. Try to identify triggers. Most people with epilepsy find lifestyle changes can improve their frequency, like getting enough sleep.

Was your daughter having a grand mal or partial seizure? Was she aware during it?

It is super important she doesn't drive if she is driving age until things get sorted. My daughter began having partial seizures that were hardly noticeable. She also had strong auras that told her they were coming so she refused to stop driving. She had her first grand mal while driving and that began her demise. It is hard to stay strong as a parent when they oppose you but I wish I had taken more drastic measures to keep her from driving.

Heather