Epilepsy in PAW, TEOTAWIKI, SHTF

[EricinVirginia]

If there are are other threads about epilepsy on ZS, please PM me or post them here. I couldn't find any. I have epilepsy. It's controlled. It's a bit of a different beast because you're like 90% functional when you're not having a seizure, but when you are and for several hours afterwards, you're basically toast. I've got enough medication to go through a 3 week withdraw in cars, home, work, and BOB. I guess I figure that if I were cut off, I have enough to make it through the initial crisis to survivor/maintenance mode and once I've got food, shelter, and security (at any level), I can begin withdrawing from the meds. With changes in diet, and a more focused approach to life, I feel it's a bit of a crapshoot as to whether I start having seizures again. By that point, I figure I'll have had time to figure out routes for the family and adjust to being epileptic in PAW. I've been lucky/blessed in that my seizures are almost 100% controlled with medication and I've had several times when I've talked with my neurologist about going off them entirely just to see if...

Wouldn't that be nice? It complicates a lot of things. A lot of you seem to be medics... standard approach for someone having a seizure is to treat them as a drug overdose. Not super applicable to PAW; you won't be able to hit me with smelling salts, IV valium, and do a complete drug screen at a hospital before turning to my wife and saying, "Son of a gun, no drugs. It must've just been a seizure. You should take him to see his neurologist."

Can't help but notice that in movies and literature about disasters and zombies, that people with any medical condition at all rarely make it. The only exception was in the Larry Niven book "Lucifer's Hammer", where an asthmatic and overweight nerd was able to use his intelligence to assemble a 1800's style chemistry lab and start making basic chemical weapons, iron smelting, and medical supplies... at least long enough to hold back PAW marauders. Several other people in that book, had different medical conditions too... and somehow made it through. If you haven't read the book... the Hammer is a large asteroid that wipes out enough things to cause major problems everywhere.

If you have any info on chronic seizure disorders in the wild, I'm all ears. Thanks. As it is, if you're like me... I guess it boils down to this. Get a good helmet first, have enough medication that you can survive the crisis at hand and then get to a safe place to start withdrawal. The helmet will help you avoid unneeded head injuries during a seizure. Also, your first priority needs to be doing all the hardest stuff imaginable while you're still good and then quickly finding out how your medical condition changes in PAW, before settling into your new role as a survivor with whatever the chronic medical condition is. How mcuh would it suck to survive everything only to have a seizure and fall, hit your head, and then drown in 1" of water when it starts raining before you recover?

[Ovationman]

Two words say all that is needed Your Fucked.

[charlie505]

Wife had epilepsy since she was 6 years old - sucks - I wish I could offer advice.

We were lucky - she under went experimental surgery - seizure and med free since 1998.

[Vicarious_Lee]

That's a pretty good summary (yours, not necessarily Ovationman's).

I've heard that the tendency to seize decreases with age. I think you've got as good a plan as you're going to have. It's all up to God after that. You'll either get to a state where you only have a few seizures a year and you can manage OK, or you'll have a few a week, which is bad, or you go into status eptilepticus, which is horrible, and fatal.

The question is, how bad are your seizures now, and how bad were they when they were untreated and at their worst? I think the best answer I can give you is, "Your PAW epilepsy status will likely be significantly less severe that back when you were off medication and at your worst when you were younger."

[EricinVirginia]

Well, lack of sleep and stress are the two provokers of seizures... both would be at play in a disaster scenario. At my worst, during 1st marriage's break up, I was having 2 or 3 seizures a day and was completely lethargic. THAT is my fear... that I end up in that type of state when my family needs me most. I've only be in staticus once and it was pretty bad. My wife found chilli burning on the oven, candles lit, house spotlessly clean, and Metallica blasting on the stereo. She found me face down on my bed with snowboard boots on and no shirt. Right now, I only have problems when I'm stressed out to the point I can't sleep well. Days following this I end up having auras but no real seizures for about 3.5 years. It's not worth it to me to go off my meds just to see, but I often fantasize about being med-free.

So, in theory, I was getting ready for a romantic evening with her when I started cleaning (it's kind of an aura for me)... and decided that CHILI was the epitomy of romantic cuisine and that Metallica would set the mood. LOL... what a mess. My only memory was coming to in the ambulance briefly and almost punching the EMT before they restrained me.

Since posting this morning, I was thinking that if you had enough people together there'd have to be some level of full disclosure going on for people with chronic medical conditions. But, yeah, we're pretty fucked. I don't see society falling into the Roman era standard of epileptics being "favored by the gods" like Julius Cesar. Poor me... guess I'll have to find some trade skills that would upgrade me from an F6 or F5 (WWZ civillian rating for how useful your skill set is to society in PAW).

[EricinVirginia]

Anyways, since this is the FAK forum... here's my med kit. Wife has an identical one with similar layout.


By ericinmaryland at 2009-09-27

We built these based on the anticipation that if go into PAW armed and armored, you'll be more likely to incur puncture, penetration, and burn related wounds. As such, we prioritized burn, shock, hemmorage, and infection. Because I have epilepsy, we have enough of my meds to make withdrawal from the meds (going on and going off meds is the single most likely trigger for a seizure for anyone, not just epileptics). We have several flavors of antibiotics. The idea behind these med kits is to keep you stable and functioning at the highest %age until you can either get somewhere safe more comprehensive field treatment, or get to someone more knowledgable for the same. These are in a Blackhawk STOMP II Kit. It's a great kit, but the layout leaves a bit to be desired... primarily in that it encourages you to put too much stuff in the middle and then you have wasted volume all around the edges. The kit also is not waterproof, which seems completely odd to me.

I'm not going to list all the stuff, but I will comment on one thing I noticed in reviewing the FAK threads... not many of you put zip ties in your med kits. Given their utility for tying, linking, and holding anything against how cheap, lightweight, and space conscious they are... I would highly recommend these to all of you. I'd also recommend keeping some mechanism for light (glow sticks) and fire (to heat water) in your med kits. We also put temporary dental/cavity filling in our kits. Adventure Medical has these, but if you hunt for them separately you can buy them for like $2 each. This is our go to FAK for when we'll be out for more than a while or with little chance of being around medical personnel. We're going to be putting together smaller, lighter ones for quick incursions and for times when you want more portability. These kits are currently weighing about 4.5 lbs.

[Ovationman]

I simply do not see a good outcome if you have any chronic medical condition needing meds.

On another note I Really hope you know how to use the stuff you have in that kit. Judging by your demonstration earlier I would stick to the basics.

[Apache]

In very simple laymans terms the more seisures you have the more likely further seizures are. It's like driving - everytime you have a seizure electrical connections are made in your brain that make it more likely to happen in future. Untreated seizures get more frequent and longer in duration. It's the same way your brain 'learns' (very simplistically).

Most medications for epilepsy have long half lives and so even if you stop taking them today it may take weeks or months before they are completely out of your system.

When medical help has gone and seizures are getting worse you may be suffering from lead deficiency........... Survival of the fittest I'm afraid.

[charlie505]

Wife's seizures got worse with age - any stress and she was toast. She would have been a basket case in a SHTF.

Wife was supposed to get pacemaker type device to control seizures but a visiting doctor determined another surgery - removal of scare tissue that caused the problem - it worked.

This works for a few other people we knew - they volunteered for the testing - they are either off meds or on smaller doses.

http://www.thenewsroom.com/details/3673260

[Vicarious_Lee]

Well, lack of sleep and stress are the two provokers of seizures... both would be at play in a disaster scenario. At my worst, during 1st marriage's break up, I was having 2 or 3 seizures a day and was completely lethargic. THAT is my fear... that I end up in that type of state when my family needs me most. I've only be in staticus once and it was pretty bad. My wife found chilli burning on the oven, candles lit, house spotlessly clean, and Metallica blasting on the stereo. She found me face down on my bed with snowboard boots on and no shirt. Right now, I only have problems when I'm stressed out to the point I can't sleep well. Days following this I end up having auras but no real seizures for about 3.5 years. It's not worth it to me to go off my meds just to see, but I often fantasize about being med-free.

So, in theory, I was getting ready for a romantic evening with her when I started cleaning (it's kind of an aura for me)... and decided that CHILI was the epitomy of romantic cuisine and that Metallica would set the mood. LOL... what a mess. My only memory was coming to in the ambulance briefly and almost punching the EMT before they restrained me.

Since posting this morning, I was thinking that if you had enough people together there'd have to be some level of full disclosure going on for people with chronic medical conditions. But, yeah, we're pretty fucked. I don't see society falling into the Roman era standard of epileptics being "favored by the gods" like Julius Cesar. Poor me... guess I'll have to find some trade skills that would upgrade me from an F6 or F5 (WWZ civillian rating for how useful your skill set is to society in PAW).

PM sent. Thanks for the disclosure.

[Broken1]

I was wondering if there is a risk of muzzle flash being enough to set off a seizure? Video games with flashing lights have warnings and such but what about a night engagement? Lot's of flashing all around you then. Just wondering if it had been thought about before.

[EricinVirginia]

Muzzle flash... I was curious when I went to the range the first time after my diagnosis as a 26 year old. It was fine, oddly. Concerts are okay too unless all the stobes are coordinated to go on and off at the same time. As long as the bright flashes are random and spread out, I'm actually just fine. Not having shot a machine gun that would fire/flash consistently, I guess that's the only real question I have at this point. None of my weapons are FA so it's not an issue in my family.

Fireworks, the ones that make the bright strobe flares against a black sky... these are a problem for me. Oddly, parachute flares are too... they flicker just enough and are so bright. Another trigger for me is nitrous (laughing gas).

I'd be happy to field any questions about epilepsy. My wife and I get involved in charity fund raising for the Epilepsy Foundation. I'd imagine that my experience with epilepsy would apply to chronic medical conditions where lack of medication would be at play.

[TAB]

All I know about seizures is that they are fun to fake...just kidding. When I was in college, a guy sitting next to me starting jittering and shaking increasingly worse. He kept looking at me while he was bucking around at his desk and saying "I'm alright! I'm ok! Don't worry! Etc." When he was done, he explained that he was prone to seizures but that he had developed a certain degree of control over them; basically that he was tired of people trying to keep him from biting his tongue off and holding him down. I guess not all seizures are the same. As far as the PAW is concerned, I would suggest that if you are prone to seizures that you adhere to the buddy system (probably good advice for all of us), and maybe focus/meditate on staying somewhat in control of them as they occur if that is at all possible. That guy made me think it might be, you know, mind over matter.

As far as your FAK, why hemostats? I think I would rather apply a pressure bandage than trying to succeed at clamping a severed main vein or artery. Leave the hospital care to the hospitals. In the PAW, a severed main vein or artery probably means death.

[Vicarious_Lee]

HAHAHAHAHA!! that's hilarious. Maybe that guy from college can teach the OP how to consciously control his seizures (hint: fake them)

My buddy is a neurologist that does a lot of work with the prison population. He can make them have seizures on demand by explaining to them that his 256 hz tuning fork is a "Brain wave desynchronizer" that, when struck and held to the ear of someone with true epilelsy, will trigger a tonic-clonic seizure. Then, when restruck and placed on the occiput, it will shut the seizure off. He makes those motherfuckers dance for him. Far as I know, he invented that technique.

Real seizures are awful. Fake seizures are awesome and can provide days of entertainment!

DISCLAIMER: The above posting is completely made up and contains no factual information at all. All parties mentioned are completely nonexistent. It is only written for entertainment purposes and nothing in the above has ever happened in real life to anyone.

[EricinVirginia]

Faking seizures... must be fun for people that don't have actual seizures. I always tell people to drop a hat and tell people I'm break dancing. Would be far better to come to with money than in an ambulance or in a hospital. Fortunately, it's mostly controlled. I've had very few partial seizures. There are some mechanisms for "control" but even in a partial one, like my left arm, there's a severe sense of vertigo and the mother of all brain farts. The ability to talk gets a bit messed up. The only one I can really remember clearly is my left hand from about 7 years ago... it felt like the worse pain you can imagine in a limb but somehow you're disconnected from it. I remember being fascinated by it because I'd never seen my hand do that.

The buddy system makes a lot of sense, for anyone with a chronic condition. Hemostats are handy for grabbing things and retrieving fishing hooks, and were I in a bad way, I like to have things that better trained and more knowledgeable people would find useful. It'd be nice to think that when Mr. MegaEMTman or Uberdoc shows up, that they have everything they need AND are willing to share and help out. Somehow, my working theory at least is that they won't. Current medical theory when you see someone seizing is a drug OD. How many of you, in PAW, are going to help or risk your BOB supplies for some narc'd out vagabond? I'd bet that most of you would:
- Assume it's a trick for an ambush or whatever and steer wide and clear.
- Assume I OD'd and because of that conclude I must have no common sense to be doing narcotics in a dangerous area... and alone.
- What are the odds that I'm alone... see first point on ambush.

It'd take a rare samaritan to risk their life and disaster supplies for someone that appears to have been stupid enough to OD in the PAW, alone. As my favorite troll Ovationman said, "I'm fucked." Even supposing that you were looking for a buddy for added security, I don't know that I'd pick myself if all I knew was that there's a person over there having a seizure. I'd make a great buddy. Very loyal. Very willing to seize the initiative and had I have a high tolerance to pain.

[airballrad]

My 21-month-old has epilepsy as well. Her seizures are controlled by meds, and the only one she has had in the last 12 months was when she had the flu and was too sick to keep down any fluids (including meds) for two days.

We keep about a 60-day supply of her meds on hand, but if a situation were to come up that puts us beyond 60 days we'd be in trouble. I am hoping that age helps with this, and maybe even gets her off the meds entirely, but time will have to tell.

[callista]

airballrad--You did get the docs to check she didn't just have febrile seizures? I got those, and they're not true epilepsy... just making sure, you said it happened while she had the flu, and a temp of 103, 104 can set them off in some people...

OP--
How come you aren't wearing a medicalert bracelet? Even now, people need to know you have epilepsy. It'll be even more important in a PAW, where it'll prevent "leave the druggie behind" scenarios. In anything but absolutely choosing between saving their own lives and risking it to drag you out, people most likely won't see your epilepsy as a huge problem, especially if you're willing to pitch in like anybody else does. But they really need to know you're not a druggie. A bracelet could go a long way. For that matter, if you won't wear one now, keep one for when people really need to know.

[airballrad]

airballrad--You did get the docs to check she didn't just have febrile seizures? I got those, and they're not true epilepsy... just making sure, you said it happened while she had the flu, and a temp of 103, 104 can set them off in some people...

Unfortunately, yes. She has had several different episodes, and we checked for fevers for the first several before going any further. The episode she had during a flu bout was 6 months after all this had begun, and was because her body couldn't process the meds when dehydrated.

Regarding MedicAlert (I know that was directed at the OP), we jumped on that with both feet. Not only does it contain all the information a first responder would need, and a means to get more details, it also make it very easy for someone to find out who she is and how to get her back to us if she manages to wander off. Being a little girl, she loves to have some jewelry to wear too.

[charlie505]

my wife - girlfriend at the time - did not wear a med alert bracelet - she came too in ambulances quite often. Her grand mals were scary - her petite mals i was able to deal with

[colinz]

Two words say all that is needed. Your Fucked.

Well, thats me Fucked too then.

Chronic Asthmatic.

At least I am able to somewhat more easily 'stockpile' the meds I need. OP, I feel for you man.

[the_alias]

Two words say all that is needed Your Fucked.

What? Like your understanding of grammar?
ZING!

[chupacabra]

Coming off of seizure meds can increase seizure activity...
I don't think that surgery for intractable seizures is experimental. If it were then we'd have to get IRB consent in addition to regular surgical consent prior to doing it. We don't. Guess it's proven its worth many times over.
Funny how the epicenter of seizure activity often looks different from the surrounding "normal" brain to me, and I don't think I'm the only one who has made comments about that at times...
Just good wiring gone bad, I guess you could say...or wiring which was installed incorrectly, whichever the case might be...kinda like labeling a breaker "Kitchen Lights" when it in fact controls the stereo and the porch light.

[EricinVirginia]

I had the best post ever in response to the family with the child and bracelets. But internet hiccup'd. I'll repost later.

[callista]

Yeah, but surgery isn't going to work for everybody with epilepsy, and can like any brain surgery give you aftereffects that can range from very mild to severe. They usually just do the surgery when they know the seizures are worse than any effect you could get from them poking holes in the affected area. It's not like LASIK for people who aren't happy with eyeglasses...