Has Anyone Else Had Their Epilepsy Type Diagnosis Changed? | MyEpilepsyTeam

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Has Anyone Else Had Their Epilepsy Type Diagnosis Changed?
A MyEpilepsyTeam Member asked a question 💭

When I was young, I was diagnosed with petite mal based on eeg and symptoms. But in my mid teens, my diagnosis was changed to temporal lobe, again based in a different eeg and symptoms. Has this happened to anyone else? And if anyone has an answer as to why this happened, I would love to hear about it!

posted October 23, 2022
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A MyEpilepsyTeam Member

Our bodies change as we get older I had them all ........ I started having them when I was 6 years of age back than they didn't know what I had & the experimented on me I was a guiniepig ........I was given many different meds & some worked & some didn't......I finally got on the right med when I was married & I had just spent a week n the hospital & I had 2 seizures n one day not back to back but still we had found a neurologist that helped me the drug had just came out on the market ( Depakote) it worked but it had siteffects it caused weight gain & hair loss ....it also could damage my liver so it was very important to make sure that each visit they took labs......... Always check n from time to time with ur neurologist to make sure nothing has changed with ur brain 🧠 it is important......I hope that I have been some help .........enjoy ur day & God Bless 🌹

posted November 5, 2023
A MyEpilepsyTeam Member

Epilepsy is known to change over time, as the brain circuitry changes with age and/or environment (experiencing more triggers, efficacy of meds changes, etc). The brain is always changing over time,, just like the rest of the body. My seizures went from passing minor auras, to partial temporal lobe, to full temporal, and finally grand mal over the course of about 15 years (it went from auras to full TLE in a matter of 5 years). So in my case, epilepsy did and does change over a lifetime. I hope that helps explain it a little…

posted October 24, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member @A MyEpilepsyTeam Member
The seizure I’ve had all my life, where I don’t lose consciousness, I get a weird feeling in my neck area and it used to mess up my speech. I didn’t even know it was a seizure until I was older. After I got an RNS my doctor told me to use the magnet whenever I had one of those feelings so I’ll touch my head with the magnet and write down the day and time. When I go see the doctors I’ll show them the list of when I had the feelings and a lot of times they do find seizure activity where I marked. The big seizures, where I do lose consciousness, started when I was 10 years old. Doctors say the head injury is what caused me to have those, even though it was 8 years prior. Sometimes I will even have a big seizure right after I have one of those feelings.

posted October 23, 2022
A MyEpilepsyTeam Member

I did not have it happen to me but was told they can do that depending on how the electrical impulse, that causes seizure, runs thru other areas of the brain. Such as focal seizures, the most common treated form of seizures, increase into tonic-clonic seizures. When it comes to having it running thru a temporal lobe don't worry about it. I say that because I been having complex partial flowing from 18% of damaged or dead right temporal lobe brain tissue. Had 13% removed since it was dead brain tissue,5% still remains because it's damaged not dead. If removed would increase strength of seizure possibly cause other types of seizures. Removal of dead brain tissue to reduce strength and number of seizures having. What's great to know, which is something I do, if truly wanted. You can still run your own life not let seizures run it for you. Yes, have some help with somethings, as everybody does. If others could do things without help why would we need any electricians, plumbers, dermatologist, therapist, and many many more. I wish you the best at your success!!!

posted December 13, 2023
A MyEpilepsyTeam Member

Yes quite a few times 5 times to be exact each time my seizures got stronger and worse

posted September 30, 2023

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