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Did You Know Monday? I Also Have Temporal Lobe Seizures

Yes I am smiling in this pic, but going through these various tests over many years is NOT fun! But all you can do is smile and hope for answers.

So what is Temporal Lobe Epilepsy or sometimes known as Focal Aware or Not Aware Seizures

I have Temporal Lobe seizures in my right and left temporal lobes of my brain. Some people get confused by terms used throughout various neurology studies. This is due to terminology is used differently by neurologist and or researchers throughout the field. That is where the term focal seizures at times people think it is something different. It can also be confusing because you can be aware or unaware during these types of seizures. These seizures in extreme cases can evolve into a generalized tonic-clonic and or known as a grand-man seizure. Thankfully I do not have grand-mal.

These type of seizures process emotions and a vital part of short-term memory. Everyone will experience them differently based on the lobe and how controlled.

Please remember this is by my terminology and not a professional, speak to your neurologist if you feel you might have these types.

Examples of what I feel or known as auras during these type of seizures

At times my family will notice something before I do. I might be staring(I might be sitting or in mid walk just stop and stare), not responding to something they just said to them or doing repetitive movements such as running my hands through my hair for a while/rubbing my leg.

On the flip side I might get a taste in my mouth such as metallic taste, a strong smell but no one else smells it. Hot flashes, but at times I can't tell if it is due to my seizures or just due to my continuos pre-menopausal issues. I may also feel nausea in my stomach like you are on a roller coaster or something that just made me scared. Mild and or severe chest pains, with my head tingling. I could start laughing for no reason at all and can't stop or I swear up and down something just happened but it was just me having deja vu. Shaking/twitching hands which I can't control.

If I am aware during a seizure I will communicate, but if I am not I will not respond.

Post Seizure Feelings are actually the worse part for me

Thankfully my seizures are brief, only about 30 seconds to 2 minutes for me. This is why many people would not even know I am having a seizure. It's the after effect which others would notice. Mostly I am confused on what is going on and asking why I am where I am, if I was having an unaware focal. I will swear up and down whatever they say didn't happen and I wasn't having a seizure. If I was aware, I have trouble finding my words and speaking. In either case I become very tired and just fall asleep but when I do eventually wake up I still feel off for most of the day, if not longer. This at times can bring on more or a different type. A feeling of guilt sets in which all those living with epilepsy understands because most likely plans had to change. At least that's the basics.

How is my treatment for my temporal lobe going

Overall it has improved greatly when I had the RNS with lots of meds when you look at the actual number of seizures stopped by the device compared to years prior. My right temporal lobe is more controlled vs. the left. However; my last Mayo appointment did show a bit increase vs. before on my right side and left staying the same. I have also developed some scar tissue in those areas and my hippocampus has shrunk from these seizures combined with others.

To me with all the medication side effects and how now my short term memory has gotten worse, it is the same compared to quality of life. So my husband has to remind me of what it could still be, and treasure what I have been able to do living with uncontrolled epilepsy.

Next Mayo appointment is October 6th, and we shall see what the changes in the RNS and my meds have shown this time compared to what I write in my seizure log. We have to remember that my RNS won't always detect all temporal lobe seizures and I have more than just this type.

Please reach out anytime! Twitter @RissEKUParmer Thank you to all that continue to share my blog with others! You can comment or message on here or email mmparmer@outlook.com. I love to chat with others either living with or caring for others with epilepsy. As you have read as well I can share your story.

Remember from last Friday, read about Bryan and his Jerseys4Hope.


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