Hello all

[GNR]

I was first diagnosed with epilepsy (TLE) back in 2008 or so. After that I went through quite a large number of medications. It seemed to always be the same story. I would start a new medication, and the seizures would go away for ~6 months give or take, and then the seizures would gradually return. My doctors referred to this as the "honeymoon period" and said that it's pretty common.

My seizures ALWAYS begin with an Aura. The auras seem to almost always play out the same. Usually it will start with just a hint of a feeling that something is wrong. Sometimes it never goes beyond that. Sometimes it progresses to the next stage where it becomes a clearly recognizable aura. In my case it is a déjà vu type of feeling. It's not the exact same as a déjà vu but to this day I've never been able to describe it better than that. Sometimes it stops with the aura, and sometimes it progresses to a more significant seizure.

In 2019 I had the NeuroPace RNS system installed. Amazingly, I went almost 2 years without a seizure after having it installed. My Neurologist actually said I was getting close to breaking a record in that respect. To this day my RNS system has not yet been programmed beyond read-only mode, since I had not had seizures to gather data from. But fairly recently my seizures began again. I'll be going in again in the near future to potentially have the RNS system programmed.

Since being diagnosed, I have always kept things fairly private, but recently I have felt the need to reach out and compare experiences. I'm eager to compare how I have reacted to various medications. I'm curious if any others here also have the RNS system. I'm also eager to brainstorm ideas about what to do during auras. Since my seizures always begin with an Aura, it has served as a small window of opportunity for me to either stop the seizure or put me in a safer spot. It's just been difficult for me, over the years, to understand which actions I've been taking have been successful in stopping seizures at the Aura stage vs. what might simply be placebo or wishful thinking on my part.

I'll probably make separate threads to explore some of that. For now I just wanted to introduce myself. I appreciate communities such as this one and look forward to hopefully becoming a part of it. Thanks!

 

[Heavy Kevy]

Welcome!
This place is great. If it were a dog it would be a mix between a border collie and a golden retriever. Smart with a sunny disposition.
I was never eligible for any kind of RNS system. I’ll leave that up to the many knowledgeable folks here.
For me figuring out what triggers my seizures has determined my actions. I’m not very familiar with my aura. Fortunately the majority have been nocturnal.

Once in a while, you get shown the light
In the strangest of places if you look at it right

 

[XxBlaqkxX]

Hello, and welcome.

It's a nice release to let out feelings on the forums here. I, too, tend to keep fairly private about things and being here helps sometimes.

 

[Sabbo]

Hello & welcome to CWE! This is a great site to learn more epilepsy or just vent when you're having a bad day.
I've had simple partial seizures since I was little but wasn't diagnosed with epilepsy until after I had some tonic-clonics in 1987. Now I have complex partials as well. I, too, have been on countless AEDs with the same thing. My seizures go away for a while (usually 6-8 months max) then it's as if my brain becomes used to the new AED or immune to the dose I'm on, & come back to the same level.

 

[Porkette]

Hi GRN,

Welcome to CWE! I've had TLE for 50 yrs. along with aura sz. that will sometimes lead into a complex partial seizure
or an absence seizure. Years ago back in the late 1970's my neuro taught me the moment I felt an aura sz. beginning
to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it quick enough
it would stop the seizure and it has worked great.
I had brain surgery twice to help reduce my seizures but when the surgeon cut me open they got a surprise they found more
damage deep in the brain that not a single test showed. What happened is I had so many seizures over the yrs. that it caused
the damage to spread from the right temporal lobe to the frontal lobe and over the the left temporal lobe and that's why I
started out just having absence seizures and 2 yrs. later the complex partial seizures started.
Just like you each yr. in the fall and winter I have more seizures than the spring and summer and my Epileptologist told me
they are called "Seasonal Seizures" I have more in the fall and winter because there's a lack of serotonin in the fall and winter
compared to the spring and summer. As my Dr. told me I'm a weird one : )
I also found out I am cell phone sensitive so if I'm at a store or any place where a lot of people are using their cell phones at
the same time it triggers seizures for me. All of this is do the the frequency of the cell phone. That's why I'm into ham radio I
can make phone calls, use the internet and much more all with the radio and it doesn't cost me a cent. I just had to take the radio
exam and buy the radio and so I saved myself some money also.
I've taken over 10 different seizure meds then my Dr. did a DNA test on me and found out I was drug resistant to all seizure
meds out on the market so he told me to start using the cbd oil and that has done wonders reducing my seizures but what has
helped me the most is taking 2 Tablespoons of apple cider vinegar with mother in it in the morning. Now I only have at the most
3 sz. a month compared to 8-10 seizures a month. The mother is a good bacteria and protein and it will help some people with
their seizures because it's getting rid of extra carbs and starches in a persons body. One girl on YOUTUBE stated that it has
stopped her seizures completely.
I wish you the best of luck and May God Bless You,

Sue

 

[Army Vet]

Hi GNR. Welcome!

This site has been very informative. It was nearly impossible for me to describe what I was "feeling" and experiencing. What's an aura??? Finally I did enough searching and found this place. I read many things that I could relate with and was comforted in that I wasn't alone and not knowing what words to use. I was finally able to call these things with known words. Anytime I say seizures to someone I get to know, I immediately tell them that NO! They're not tonic clonic, but I usually say "Hollywood seizures" to put a picture in their heads. People hear seizure and all they know is where someone falls and starts shaking. Before I knew about simple and complex, guilty as charged.

I have simple and complex seizures. Sometimes I have an aura and know it and sometimes I don't. Sometimes I don't remember a thing, yet end up somewhere else and know something happened and am fuzzy on things. I've been able to get more familiar with my auras and can usually ask my folks if I had one and they'll say yes. I still have at least 2-4 per month and that's what I know of. I was having many more before I finally found out what was going on. I started off on lamictal. It worked great for two years, but they crept back in. I've since gotten a VNS which has helped some. Also on lamictal, vimpat and keppra. Thankfully I was still in the military and I’m about to have the VA take care of me for the most part. Took me two years to convince them I needed to need to a VNS, but constantly calling 5 days a week paid off.

 

[Sabbo]

I can feel my simple partials "come on", & I'm usually aware of things going on around me during them. I just close my eyes & put head down for a few minutes. The actual feeling that I get is very hard to describe. My complex partials are another story. Without a witness, I have almost no way to know that I have had one--I never have auras. If I suddenly see injuries on my body or see that things around me are suddenly out of place or damaged, then I'm sure a complex partial occurred.

 

[Nakamova]

Hey GNR, I’ll add my welcome to the others.

I don't know if this is bunk or placebo, but it’s easy to try: For stopping seizures at the aura phase, try putting pretty strong focused pressure at these acupressure spots: The fleshy base of the thumb, and/or the spot at the base of your nose above your lip. There's some basis for why they might work (esp. the one under the nose, where there's a significant cranial nerve), but unlikely to work for everyone. I don't really get auras, but if I’m feeling "off’, I sometimes use those pressure points to help keep me focused.

 

[GNR]

Thanks everyone

When it comes to auras, I find that my biggest enemy is fear (I know that sounds cheesy). I've had what seem to be good results when I have an Aura by focusing on something that changes my train of thought as much as absolutely possible. I've had the most success so far by using anger, such as punching a pillow over and over, and trying to let my anger take over (including legitimate frustration about having a seizure), usually resulting in a natural adrenaline rush, etc.

I think that one of the reasons that anger works well for me (as described above) is because it pushes away the fear. But for example, I recently had an aura in the shower. I've never actually had an aura in the shower before. Thinking about how that would be a very bad place to collapse, etc, it was too difficult for me to stop the fear from taking over, and I did end up having a more significant seizure. Thankfully for the me, the seizure in the shower did not turn out nearly as bad as it could have, because my seizures are different now...

In the past when I had a seizure that went beyond the aura stage, it would almost always result in a seizure with full convulsions. Afterward, every muscle in my body would feel so worn out. I would drink as much water as I could to help my kidneys deal with all the torn-down muscle tissue. I was so tired and just wanted to sleep. After going almost 2 years without a seizure on my current medications, the seizures came back.

The seizures now are different than my past seizures. One example is when I had an Aura and tried to go up some stairs to get to where others were before I had a bigger seizure. This actually happened once, years before, and I ended up collapsing and falling down the stairs while having a seizure and put a big hole in the sheet-rock (thankfully I somehow escaped major injury). I should have learned my lesson but I am stubborn and was sure that I could make it up the stairs this time. Well I don't remember anything past about half-way up the stairs. The thing is, I apparently made it all the way up the stairs, turned around, went all the way over to the sink, and stood there (at that point others saw me and wondered what was going on).

In the earlier example I gave, when I had a seizure in the shower, I was actually able to turn off the water, get out of the shower, and get dressed all before my memory started to come back. I was impressed that I did all that but obviously I was still in a very mentally impaired state since I missed a few crucial steps such as finishing to rinse all of the soap off of my body before I got out of the shower, and I put my shorts on backward. This new kind of seizure is still a lot better better than having convulsions, and I don't miss the muscle soreness, but it's weird that they are so consistently different now.

 

[Sabbo]

I've injured myself (especially getting burned) MANY times during complex partials. I'm at the point that I told family members to take me to the ER ONLY if my life depends on it.

I have noticed that stress or tension will trigger my seizures, even if I don't dwell on/worry about things. There are often times when I'll have a complex partial seizure within a few hours of taking my meds.

 

[Plasticmask]

I have instructions on one of my Med bracelets saying "NO AMBULANCE!" after a bad experience with EMTs who stole all of the cash out of my wallet, and nearly emptied my pill bottles (Stupid me, thinking it would be smart to ask the Mrs. to throw them all into my bookbag so that we wouldn't have to remember what I was taking at the time).
Oh, sorry. Was just reminded of that for some reason.
Welcome, GNR!! You'll like it here, VERY much. I haven't been a member for very long but I'm glad that I found this Forum; not a betting man but I'll wager that you'll feel that way too.
THIS Forum is actually moderated, unlike SO many others, and you'll find NO as**- um, horse's butts here. lol
ANY questions, you'll find SOMEBODY who can answer their experience with it here.
Welcome again.

 

[C0urt]

people suck., I had one person who was nice enough to call 911 once. but then they stole my phone and spent time calling my girl and breathing heavy.

today sucked to, I havent noticed the last couple few but the post-tical state was mean. the current girl has known me since before I had epilepsy so she knows what they smell like and have to deal with causing her issues if a seizure just passing by and does nothing. but the bad ones I have issues walking, you all have seen my bad typing. I guess it isnt like the old keppra ones where I was violent or would run down the street naked, but this is still new, worse part is i currently live with a bunch of drug addicts so they could handle it and got me to a bed, they were just jealouse of what ever I was taking

 

[Plasticmask]

I still live by the decree, "TRUST NO ONE". I've been lied to, robbed when I wasn't looking, Doctors in the hospitals lying to just keep me there so they can run up the tab on my medicare, and by women and roommates. Hope you keep your meds locked up, or at the very least are scary enough that they leave your stuff alone. I trust my Wife and personal Doctors (most of the time regarding my personal Docs) and my Family now that my Sister has passed. I agree; people suck. And not only does it hurt, it's enraging.