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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Nice to meet you, Lisa! Thank you. Hello, all! I am figuring out my way around in here by just going everywhere. lol. First off, the neuro's we have seen have been 4 different ones. We have also seen a few Behavioralists. The Neuro's have done many tests, EEG's, MRI's, blood work etc, over the years to always the same conclusion, they find nothing that causes her seizures. They were no help in suggestions or options for her or me other than meds to control the seizures. Her seizures began in the womb. I knew that the first she had for me to see and hold her at three days old and holding her against me I knew that was the funny feeling I felt in the womb. She is super sensitive to meds and it took a while to get her meds right to stop the seizures. At 2 yrs old they took her off meds to see if the seizures had stopped. They did! Until she was sick and had a fever at 6 yrs old that caused a really long and difficult seizure lasting 30 minutes and then 5 hours for her to come out of her after sleep. Then at 17 yrs old they started again and have not stopped. So she has been on depakote since because it is the only one that works for her. I have hated the side effects, but then she can't have her seizures because of how violent they are. She is on it indefinitely. : ( In the past few weeks she has been getting dizzy spells that are now every day. I called her Primary for an appt. we will probably get in tomorrow. I feel like the dizzy spells are a seizure trying to break through. Is that possible? Is that common? Maybe her meds should be increased some? Thank you for reading this long post.......jb24
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@jb24
Hello,
Welcome to our family,
I have had epilepsy for 52 years I'm quite sure I'm somewhat familiar with what your daughter has been going through. I have heard people mention they felt dizzy preceding a seizure, but usually when they did they would be dizzy and then a seizure would follow, usually a tonic clonic seizure. I wouldn’t say that the dizziness is common, least not from what I’ve heard other people talk about on various forums. I would get the dizziness checked out from your primary care doctor or an ENT or if you have an appointment coming up with your neurologist he should be able to help.
It’s not uncommon for EEG’s, MRIs, bloodwork even spinal taps to come out normal, but that doesn’t rule out epilepsy. Approximately 50% of the people who have normal EEGs actually have epilepsy. Has she ever had a sleep-deprived EEG of an Ambulatory EEG Where are you where are the monitor for a few days to a few weeks. I’m surprised he hasn’t because the dizziness itself can show up as altered brain waves which could aid in his diagnosis. Has she ever been to an epilepsy center and seen by an Epileptologist? They would probably do a VEEG (Video Electroencephalogram) to determine a various things including the seizure type and seizure focus (Where the seizure begins.) Is she having Tonic-Clonic (Old terminology Grand Mal) seizures? If so I’m curious if she bites her tongue and/or cheeks? Has she actually received a diagnosis of epilepsy. I have heard in the past from a number of people who had focal seizures that went from focal to bilateral Tonic-Clonic seizures and many were preceded by dizziness. Is she only taking Depakote? What does is she on? How frequently is she having seizures and what type? Has she been on other medications along with the Depakote? 75% of people diagnosed with epilepsy have idiopathic epilepsy, so I wouldn’t be very concerned if they can’t find a cause, it would be nice but it just doesn’t happen that often. Has any doctor suggested your your daughter may have PNES (Psychogenic Non-Epileptic Seizures?) Does your daughter have any psychological or emotional problems, anxiety, depression or a lot of stress?
”I have hated the side effects, but then she can't have her seizures because of how violent they are.” It sounds as though your daughter may have been in convulsive status epilepticus during that 30 minute seizure episode. Do you remember the doctors mentioning that term? I am Magine your daughter knows not to take baths unless someone is right there with her.
Does she have a medical alert bracelet or something similar? In case not here’s the MedicAlert website, they are the best in my opinion. they’re getting a little pricey but they do offer a lot of services and they also have sponsored memberships if finances are tight.
https://www.medicalert.org/?destination=products/everybody/french-rope-classic-medical-id-bracelet&gclid=EAIaIQobChMI4-Dyu6yW5wIVlsVkCh0ncgbmEAAYASAAEgLGLPD_BwE
Wishing your family the very best of luck,
Jake
Thank you for reading my long post, I hope it was as a little helpful.