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heal33 (@heal33)

Mesial temporal sclerosis in epilepsy

Epilepsy & Seizures | Last Active: Jul 30, 2020 | Replies (8)

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@jakedduck1

@heal33
I’m not a big fan of Epilepsy surgery although it has helped many patients especially with Temporal Lobe Epilepsy. It has also made some worse. Not to mention complications from Inter-cranial EEG to pinpoint the seizure focus for surgery, including death. Both the RNS & VNS usually perform better over time. The RNS Is a learning device although that’s not to say that it hasn’t helped people in the first year. Like I always say epilepsy is a very personal condition. Just because something works for one person with the same diagnosis doesn’t mean it’s going to work for someone else. I believe epilepsy surgery is a risky gamble it’s one I was unwilling to take. I was told my epilepsy was intractable and my seizures would last till I died. They were wrong. My seizures stopped after 44 years. How frequent are your seizures? Which medications have you tried?
When talking to medical experts you’ll probably hear more of the potential benefits than you will of everything that could go wrong. Just make sure you’re prepared for the good as well as the bad. I am probably overly pessimistic but I have heard from so many family member so many parents I suppose it’s made me more pessimistic than optimistic.
Just be sure to weigh all the facts before proceeding.
Take care and I wish you well,
Jake

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Replies to "@heal33 I’m not a big fan of Epilepsy surgery although it has helped many patients especially..."

I usually have 3 a month, more if I'm stressed about something. I'm sure a lot of people on this site have much worse problems than I do. They only last about 10 to 15 seconds. It does affect my consciousness accompanied by a feeling that is hard to describe. I also feel fear but part of that may be due to the time I had a febrile seizure at 8 years old, waking up in a hospital not knowing what had happened. Sometimes the after affects last for about an hour. They started at the time I was 27. Sometimes I have an (aura?) but sometimes it just comes on suddenly. I also had a concussion when I fell at the age of 3 or 4 where I lost consciousness and was brought to the hospital but that didn't involve a seizure.

I try to say something to myself to help during the seizure (for example, repeating the Lord's Prayer). I seem to have to start that as soon as I feel it coming on. Lately I have been slowing down my breathing which seems to help whenI try to start right away. I think this is the Butyeko or Frolov effect.

I'm curious to know why they said I was born with it. That could be genetic-familial or a problem with the genes. You mentioned before genetic could be something besides a family connection. I think this happened due to an injury or the febrile seizure both in childhood.

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