The Strength of Epilepsy

[Army Vet]

Weird title, I know, but let me explain....

First let me start off by saying that this isn't saying "we're better" or anything like that. Just a "pro" of having Epilepsy (looking at it in a positive way).

We all know the MAJOR problems/headaches that come with Epilepsy.

• Comes out of nowhere (unplanned)
• Can't drive (along with many other restrictions)
• Loss of independence
• Can't work (gets old being home all day, every day; watching the same shows/movies 100 times gets old)
• Money (see previous points above)
• Medical bills (those doctors aren't cheap; also please refer back to the point above)
• Almost everyone else moves on and leaves you behind (ie sucks to be you!)
• Hard on relationships (family and friends)
• Freedom (I am blessed to be able to live with parents, but I'd rather be on my own with my own house, job etc)
• Embarrassment (why is everyone looking at me??)
• Confusion (what happened; did I have an "episode"??)
• Injuries (that ground and those countertops aren't soft!)
• Fear of the unknown (when the hell is the next seizure going to hit)
• No "cure" (everyone is different; infinite "solutions" with a constant condition changing every second; see point above)

And the list just keeps going on and on and on....

Anyway with all of the "basic" CONS of Epilepsy written down (and I’m sure I missed some, but I got tired of typing them lol), let me put it in a positive light.

We all know this disgusting thing called "COVID" that has run amok worldwide. The more I got to thinking about it, the more I saw a correlation. Here are all of these people in the world that had to have their lives come to a screeching halt. Hmmm, sounds VERY similar to us that have Epilepsy.

Look at the list that I made above and see if you can substitute COVID for every one of them (some of them not as specific). Can't go to certain places (ie restaurants; bars; social events; movies). Can't work (no money). No freedom (dictated as to where you can and can't go to and have to wear a mask everywhere). Fear of the unknown (am I going to catch it; will I die?; will someone in my family get it and die?). Causes other medical conditions to worsen (similar to when we fall and get hurt). Is there going to be a cure (sure they have a vaccine now, but when will everyone get it? Might be outdated by then). Relationships are under enormous strain because they are grounded in their houses more than they'd like to be (hey, can't go to that bar and eat out nor flirt with others nor go to work). When my mom stayed home last year (to work) she got more aggravated than usual. Why? She had no place to escape (including work!). Yeah, stinks doesn't mom? Having to get something for someone (my ill father) every time you come out of your room (office). It's easy to not like going to work, but when you're in the house everyday then it gets aggravating as we all know lol.

Anyway, the main point in tying all of this together is that by me having Epilepsy for the past 10+ years, it has been WAY easier for me to live with the situation compared to my brother and others. As demonstrated above, these same hardships hit me 10+ years ago and are still ongoing. I have built calluses (or muscles if you like that comparison) whereas majority of the people have soft baby hands (or small/no muscles) and are filled with uncertainty (similar to me 10+ years ago). I see it (from a military standpoint) as me having gone on deployment and back and I see some enlistees just about to get off the bus and face Drill Sergeants for the first time ever.

Hence my thread title, "The Strength of Epilepsy." Of course having Epilepsy SUCKS! (just like COVID) But it sure has made me mentally stronger.

Again, not laughing at the matter nor calling people weak, but I just found it interesting. Kind of a "I remember when that happened to me" moment.

 

[Porkette]

Hi Army Vet,

Thank you for sharing your points I found it very interesting and I never thought of Epilepsy and Covid like that but
now that you mention it, it does make a lot of sense.
What also concerns me is some people who get the covid may end up with epilepsy after they are recovered from
the virus. I don't want that to happen to anyone.
I wish you only the best of luck and May God Bless You!

Sue

 

[Nakamova]

Along those same lines, one of "benefits" of epilepsy for me has been learning to reach out to others for help, and empathizing more with those who are suffering from health issues, particularly ones that still carry stigma.

 

[billy123]

Please look into Magnesium-L-Threonate. I had focal seizures where I couldn't think or respond for 30 to 60 seconds. I took this over the counter pill and after 3 months, it was completely gone. Magnesium-L-Threonate helps "re-construct the neurons" and allows the brain to "rewire" them back to a normal life. Remember, we only use 35% of our brain so there are many paths to rewire your brain.

I also waited 45 years too long before trying this.

 

[Nakamova]

I’m a big fan of Magnesium too. Magnesium Threonate is a variety that’s more likely to cross the "blood-brain barrier" -- i.e. have an impact on brain function. But just to clarify: it can't really re-wire your brain, it's more that, as with some AEDs, it can help to stop or slow down the neurotransmitters that overexcite the brain. For some kinds of seizures (and also in some cases of migraine) it can potentially help, as billy123 reports.

Many people with epilepsy have Magnesium deficiencies, and since Mg plays a major role throughout the body it's worth considering a supplement for that reason alone. Some people take different forms of it at night or for heart or muscle disorders since it can have a relaxing effect. But it’s always good to check with your doctor first, as Mg can have negative health consequences as well.

 

[Fedup]

Army Vet

You are a fair man for one man, I never thought of it like that but it explains a lot and puts a smile on my face as well because you are actually very right, I have just spent the last half hour listening to my sister tell me about her not been able to do some things and my answer to her was "welcome to my world" mind you she still thought I was going to have pity for her, sorry sis not today.

 

[Army Vet]

Hi Fedup,

It's been awhile since our last conversation lol. Thanks for the compliments.

Yeah, that was one of my biggest points in the original post. People might (big might there) listen to us as far as what we live with, but in the end it's just a shrug of the shoulders and a "sucks to be you!" and they walk away and go on living the rest of their lives. No mention of hanging out or providing rides or anything else (just forgotten). Heck, I couldn't even chat with them on FB (how's it going buddy?... no response even though they were online) which is why I haven't been on for 2+ years.

I don't really know how to explain the feeling (ie was it justification?), but I just felt the urge/feeling along the lines of saying, "Yeah, sucks doesn't it!" Basically just like you said, "Welcome to my world!" I wish no ill will on anybody, but it was "interesting" to see how other people handled it. A LOT of people complained about not being able to eat out, going to clubs and going to movies with friends etc.

My brother and SIL called more often once it hit in the first six months compared to the last TWO YEARS COMBINED! I think they were VERY bored. They both are very outgoing people which is great, but with nothing to do, they suddenly started calling more often (you know your brother is bored WHEN....). I even tried to help him laugh it off a little (lower his concern/glass half full etc). He wasn't amused and said it wasn't funny Fine "bro" you won't hear me talking to you about it anymore since you're so serious about it and might explode over my comments (I dunno what'll offend you ).

My mom had her own way. She was much less depressed when she could at least go to work all week long and then only have to take care of my dad on the weekends (with my assistance of course). Plus, she actually got off work around actual quitting time (ie 5 PM). Hmmm... that's interesting mom... you almost NEVER got off until 6:30 PM (always calling to say you'll be late) and that was considered EARLY! Which BTW, we lived five minutes away so no time was really due to her driving. Nope, instead she was texting/talking on her phone to the girls she worked with afterwords... BUSTED! She wondered why I was down a lot, well now you know lol.

To all those who complain: Hey, you can at least still drive. More importantly, at least the WHOLE world has the SAME problem. Could you imagine how much faster/more research would be done if epilepsy was a worldwide problem (ie EVERYBODY had it). Sorry guys, but you have it much easier considering everyone has the same problem and people are working worldwide to get it solved.

Not that I wish epilepsy on anyone, but I'll gladly switch places with you if COVID is your main obstacle in your life

 

[Fedup]

Army Vet

Its been awhile ok, but since my last seizure depression hit me again and this time it kicked me in the teeth as if I was not bad enough already. But what the hell I am still right side up.

 

[CQ:)]

Could you imagine how much faster/more research would be done if epilepsy was a worldwide problem (ie EVERYBODY had it). Sorry guys, but you have it much easier considering everyone has the same problem and people are working worldwide to get it solved.

Not that I wish epilepsy on anyone, but I'll gladly switch places with you if COVID is your main obstacle in your life

I like that Army Vet
I’m sure there are so many people who couldn’t handle epilepsy. If epilepsy was suddenly the word wild problem I would have to prepare myself just to listen to people moaning.

We all know how hard it is to deal with epilepsy, the seizures, the post seizure side effects, medication and ofcourse the restrictions. But the best of us learn to be strong warriors.

I personally know people who couldn’t cope if they had epilepsy, they moan if they aren’t well with other health issues. My boss for example wasn’t well last year had an issue with a medical condition. He was acting it was the end of the world.
He’s ok now but he’s still dramatic. He was talking to a female client the other day who told him he’s looking well and he told her how he wasn’t well last year then went on in detail as to what was wrong. The condition was actually a private condition so not something I’d discuss with a client but I guess he wanted sympathy because he got it

Geez I think only 3 clients know that I have epilepsy because it may have come up in discussion somehow. A couple may have seen me in a seizure aswell
Otherwise I don’t mention it.

 

[Army Vet]

Army Vet

Its been awhile ok, but since my last seizure depression hit me again and this time it kicked me in the teeth as if I was not bad enough already. But what the hell I am still right side up.

Hey Fedup,

Yikes! Sounds like not such a good time, that's for sure Like you said, you are still on this side of the grass. When people ask me how I am, I usually answer, "Good. Bad. Still here..." They usually laugh and say, well that's true... well I know your statement of "But what the hell I am still right side up" has a little bit more of a sarcastic tone than what most take it as (at least that's how I see it/mean it). Yeah, laugh, but you only know the half of it (ie Titanic laughing at the itty-bitty iceberg).

Hope you get to feeling better.

 

[Army Vet]

Hi CQ,

Yeah, not to see people suffer from epilepsy (ie wish it upon them), but I would like to see how people would handle it as well. I could only imagine how people dealt with it centuries ago. Trying to describe auras and what they felt like. Word getting out and thinking your body was possessed by evil spirits and being killed because of it (AAAHH! This person has an EVIL spirit in him!! KILL HIM BEFORE HE SPREADS IT TO OTHERS!!.... kinda like COVID contamination right now, except for the killing part). Or people looking at you and thinking you're crazy because of what you're saying and/or your actions.

Face it, it's human nature to be scared of the unknown (as it should be; otherwise we wouldn't live as long). However, you don't know how to make it better (fight it) if you never look into it (avoid it).

I would like to be able to see a "what if" scenario. As mentioned before, my brother is VERY outgoing (plays guitar at small places; what, guitar karaoke? I dunno). He went crazy when he got grounded and couldn't leave the house on weekends while in high school. Lucky (somewhat) for me, I’m not as outgoing so I’m kinda used to it. But to complain about not being able to go to bars and whatnot, HA! You haven't seen anything yet. Again, I'll trade places with you if you think you have it bad.

As for people knowing about my seizures, I only tell them if I’m going to be with them for awhile and no one is there who already knows about them. Last thing I wanna do is have this person see me having one (simple/complex) and start freaking out and not know what to do. CALL 911!! And then I come out of it and now I have an ambulance in my face. Otherwise no need to spread the news (although I'm not ashamed if someone asks where I work and I say I don't, I’m on SSDI).

 

[Fedup]

Army Vet

Ya you got it in one, funny no many do see the sarcastic tone part.

 

[CQ:)]

Everyone I work with is aware of my epilepsy, mainly the ones in the office but I may have mentioned it the the young guys in the workshop just in case they walk on me having a seizure or I'm in a bad mood after a seizure.

The seizures I've been having lately I havent been remembering much at all, no strong aura like I used to get but think my boss has seen most of the ones at work and he said I was spaced out. He has usually been able to make an excuse to a client if they were there, once he told someone I was busy concentrating on bookeeping stuff so he handled the situation. He usually lets me know what happens then asks dont you remember bla bla and when I go no hes surprised. Then I have to remind him each time I dont remember anything during the seizure.

 

[resaebiunne]

The OP makes an interesting post, but there is a key difference that I feel I should point out.

If you have epilepsy, those things apply. However, you don't actually have to get COVID for those things to apply.

Epilepsy causes these things. COVID does too, but it's more the safety precautions everyone takes rather than COVID itself that causes the isolation and being holed up in your house or apartment.

 

[Army Vet]

The OP makes an interesting post, but there is a key difference that I feel I should point out.

If you have epilepsy, those things apply. However, you don't actually have to get COVID for those things to apply.

Epilepsy causes these things. COVID does too, but it's more the safety precautions everyone takes rather than COVID itself that causes the isolation and being holed up in your house or apartment.

I guess I’m confused on what you're getting at (scratching head).

I understand your point (at least I think I do ). People don't have to "have COVID" in order for all of these restrictions to apply (ie the restrictions mentioned in the OP), but you MUST if you DO have epilepsy (ie no driving etc).

The main thing they have in common: The Unknown
Hence all of the similarities as previously mentioned.

The biggest difference: Age
This COVID is brand new whereas Epilepsy has been around for millennia. Also, this is a major worldwide "crisis." Put half the effort into getting more research and resources in such little time (as was for COVID) into epilepsy and I'd like to see how fast more theories/treatments would evolve. Take away the knowledge about epilepsy (and the way people understand/approve of medicine today) and people would be just as afraid of "getting" Epilepsy as they are of COVID today (DON'T TOUCH ME!)

Point being, if you take away the unknown (main ingredient of knowledge) and it has been around a long time, you won't be as afraid. I mean, who's afraid of falling off of this "flat earth" nowadays? Take away the unknown (ie a cure) for both COVID and Epilepsy and no one is afraid anymore. However, if people just started to fall down (worldwide) and start shaking or getting zoned out and not responding and/or making "weird" movements (getting up and randomly walking around), then I believe a huge scare would come about the world for awhile (ie what are seizures?!?!) Something in the food? Water? Air? Something must be causing these side-effects! What is it?!? Hence.... restrictions.

 

[resaebiunne]

I think you missed what I said here. The key point was this:

If you have epilepsy, those things [can] apply. However, you don't actually have to get COVID for those things to apply.

Point being, most people with a seizure disorder can't drive. With COVID, I never said you have to have had it to be forced to wear a mask and social distance, wash your hands, etc. You may do all of that and still get COVID.

 

[Heavy Kevy]

Good. Bad. Still here..."

Great response to the. How RU doing question.

I congratulate myself and say Good Job when I wake up

 

[Army Vet]

Great response to the. How RU doing question.

I started saying that when I was in the military in basic. Something as simple as a phone call was HUGE in basic. Once a week (Sunday) you MIGHT get to call home. Even then it might be for three minutes. Drill Sergeants would put out impossible tasks (ie dare us) and use something as rewarding like giving that person a ten minute phone call home, no interruptions (WOW!). Others they promised to do ten pushups themselves if someone could do something they said was impossible. Most failed as predicted, sometimes there was one person. The DS was a man of his word and sounded off loud and proud (ONE! TWO! THREE!…..). Some even added claps after pushing up into the air after each push-up. Much harder.

Whether it was basic training or being deployed, I’d call home and say hello etc. and of course the “how are you doing” question always came in. Instead of filtering through it all I just started saying that. Especially overseas I had to say it. If one iota of something BAD was being talked about my mom would get upset (like moms do ) and it would take me 10 minutes to calm her down so I could tell her the good stuff Also as mentioned earlier, I say it to make people laugh, but they don’t even understand the extremities (iceberg meet Titanic).

 

[Plasticmask]

The only thing that immediately comes to mind regarding a *positive* with this Condition, is that due to all of the broken bones, the thrice cracked skull, all of the ground-out teeth, the bruising, et al... it has most certainly raised my Pain Threshold to limits I'd never have thought possible when I was a young adult, considering that the Doctors refuse to issue pain relief any more because they fear for their licenses.

 

[Peggy]

Everyone I work with is aware of my epilepsy, mainly the ones in the office but I may have mentioned it the the young guys in the workshop just in case they walk on me having a seizure or I'm in a bad mood after a seizure.

The seizures I've been having lately I havent been remembering much at all, no strong aura like I used to get but think my boss has seen most of the ones at work and he said I was spaced out. He has usually been able to make an excuse to a client if they were there, once he told someone I was busy concentrating on bookeeping stuff so he handled the situation. He usually lets me know what happens then asks dont you remember bla bla and when I go no hes surprised. Then I have to remind him each time I dont remember anything during the seizure.

Hi,

I am new to this site and epilepsy and full of questions. Can you tell me if you take medication? I am only asking because you said: "no strong aura like you used to have". Do seizures change as we get older? I have been told mine are focal seizures and I am on Keppra and Celexa because the Keppra makes me so depressed. I am now decreasing the Keppra because of the side effects but from what I have been reading on this site, the other medications have unpleasant side effects also. I would rather stay on the Keppra on a lower dose, deal with the breakthrough seizures and stay on the Celexa at the high dose because maybe then the breakthroughs won't happen.

What do you think?
Thank you!
Peggy