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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
@debirwin
Good morning,
Do you know your seizure trigger? Is it a sound or a certain movement or another trigger? Has your doctor mentioned if you have TLE (Temporal Lobe Epilepsy) or a Reflex Epilepsy? You said your seizures were Complex Partial (Focal Impaired is the new terminology.) Do you remember anything that happened during the seizures?
I knew a man in Canada who was able to control his Epilepsy with vitamins & minerals. The site below was created for children with drug resistant Epilepsy but has some good information.
http://www.thedaisygarland.org.uk/epilepsy-and-vitamins-minerals
A few things that may help.
1️⃣ Lack of sleep is a major trigger.
2️⃣ Don’t consume to11 much alcohol (If any)
3️⃣ Control Anxiety & Depression
4️⃣ Have Vitamin D level checked. Nearly half the people with Epilepsy have low Vitamin D
5️⃣ There are herbs that some believe makes Seizure meds more effective.
6️⃣ Cut out Nicotine
7️⃣ Cut out or lower caffeine, only caffeine I get is from my candy. The one vice I can't shake.
8️⃣ Ketogenic Diet
9️⃣ Extracranial neurostimulators
🔟 Exercise and eat healthy.
11 There are Neurostimulation units that may help. (Neuropace)
Here is a recent video from Mayo Clinic doctors answering some epilepsy questions.
https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/?pg=1#comment-342281
Jake
Replies to "@debirwin Good morning, Do you know your seizure trigger? Is it a sound or a certain..."
I am currently trying to write down what seems to trigger the seizures; however, I tend to lose or misplace my notebook, lol. However, I read to at least educate myself on what not to do and/or things to limit. I appreciate all the help I can get because half the time, it is a crap shoot as to what triggers them and the other half it’s play the game-“lets make a deal.” My team of docs do their best, I think, to keep me from being in the prone position or in a hospital bed. I do, sincerely want to thank each person who replies to my “ramblings.”
Connect
Hi Jake,
I don’t remember the terminology my doctor used (I have a hard time remembering anything anymore) but he did say the activity starts on the left side of my brain and then moves around. All of this is new to me. That’s why I’m here. I’m hoping to educate myself and possibly have some control of the seizures.
I have had two clonic tonic seizures. Both played out exactly the same. I was wine tasting both times. (I am not a “drinker” per say but I love the wine tasting experience). The first time I was in Paso Robles. We tasted on Friday. Saturday morning I got up, had a cup of coffee and suited up to go on a bike ride with a group of friends. Half way through the ride my aura started. I didn’t know what the feeling was. It lasted about an hour before the seizure. During the time i was coherent but not able to articulate. I couldn’t speak but I could hear. I couldn’t make sense out what was being said to me. After about an hour I had a clonic tonic. The second time I was wine tasting in Napa valley. Minus the bike ride, it was pretty much the same scenario. Both times I was not drunk, and woke up fine. I thought the trigger may be the sugar in the wine, dehydration, or the coffee. Although I love wine tasting I am willing to forgo it to eliminate seizures.