Living with epilepsy - Introduce yourself & meet others

For many years I was experiencing vertigo. As I got older it got more frequent and for longer durations. About three years I went through all sorts of testing to see what is causing it. The final test was an EEG. I was diagnosed with partial complex seizure disorder presenting as Vertiginous Epilepsy. Since then I have been being treated with 150m x2 of Vimpat. I have had two Clonic Tonic seizures that I went to the hospital for. Each EEG I have still presents seizure activity. I have an appointment to see my doctor in two weeks. I’m wondering if I should talk to him about other treatment options? Is this a controllable disorder by diet and other natural methods, such as sleep, etc.? Any experience/ advice?

I understand what you are saying. I have had quite a few LOC due to migraines and now I have a pinched nerve in my neck that I have to be careful with. However, I would definitely ask your neurologist and/or primary care physician regarding a diet that may help as well as meds.

@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

@theshewolf1
Do you have seizures?
Jake

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.

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.”

@debirwin
If your wine tasting or drinking is small amounts I wouldn't worry about it. But if you drink heavily and go through alcohol withdraw you’ll probably have problems.
Jake

My daughter was diagnosed with Absence seizures 10 years ago but 3 years ago she started having grand mal seizures we went two years seizure free and then they returned but this time she ruptured her ear drum and she doesn’t seem to be the same. This is a lot to handle in our family because we miss her having her usual teenager dictator behavior. Now she doesn’t even have the energy to go to school and when she does she comes home and sleeps all afternoon.

@bbr
Welcome to Connect.
I'm sorry to hear your daughter has seizures. I don't understand how a ruptured eardrum could be responsible for the symptoms you mention. Ruptured eardrums usually heal on there own quickly, 2-3 months. Has it been a couple months since it happened and if so has she been back to the doctor to confirm if it's healed? Did the rupture happen as a result of falling during the seizure? If so I wonder if she could have sustained a concussion. How long has this been going on? Could she be having more seizures? If so that could explain the sleeping or perhaps her seizures could have changed, perhaps she could be experiencing nocturnal seizures which would explain daytime fatigue.
People with Epilepsy also have about a 33% higher occurrence rate of sleep apnea, that too might explain the drowsiness. Does she sleep everyday after school? Could she be suffering from depression? Has her medication changed or increased? Here is a link to “Fatigue” from Mayo Clinic.
Best of luck,
Jake

Discussion regarding Epilepsy and Cognition
December 17, 2019 12:00pm - 1:00 EST
Offered by the Epilepsy Foundation

Topics

1️⃣ Making sense of memory and cognitive complaints
2️⃣ Cognitive changes with normal aging
3️⃣ Assessing memory and cognition
4️⃣ Cognition and memory in epilepsy (adults and children)
5️⃣ Maintaining cognitive health
https://www.epilepsy.com/article/2019/11/webinar-epilepsy-and-cognition?ct=t(eNewsletter-11-20-2019)
Jake