Epileptic on the playa

Dave_techie · Post by **Dave_techie** » Tue May 05, 2009 8:07 pm

Other than knowing religiously where the medical tent is, camping RELATIVELY near (though not on top of) it bringing my meds, being med compliant, and not taking any stupid drug related risks, (and not doing anything epileptics GENERALLY aren't supposed to do, i.e. you can skip the obvious advice)

any tips for being epileptic and not letting it interfere with ones burning man experience?

Post by **mdmf007** » Tue May 05, 2009 11:33 pm

Dave -

Make your camp mates aware of your condition. Wear a bracelet, so EMS knows your not having a bad trip or OD'ing, The professionals will rule things out of course, but bracelets certainly help point in the right direction.

Aside from that, you probably know when a seizure is coming on and what some triggers are and sound responsible by posting here about it.

have a blast.

theCryptofishist · Post by **theCryptofishist** » Wed May 06, 2009 9:01 am

The event preparation guides do not specifically go into epilepsy. But this is the one for general medical issues. Talk to your doctor--and be sure you know the specifics of the playa, alkalyne, dust not sand, etc. You can email the emergency Services department at 911(dot)burningman(dot) com. They may have more insight to offer.

Ugly Dougly · Post by **Ugly Dougly** » Wed May 06, 2009 9:47 am

I would ask my campmates to screen the various attractions for triggers, especially the stuff at night. (Flashing lights, etc.) Sorry if that's obvious.

misfit · Post by **misfit** » Wed May 06, 2009 10:36 am

strobe lights at the dance clubs,,, not good... also, if your taking dilantin, tegretol,,,, use your sunscreen. don't forget to sleep, keep up a good diet, and no caffine...

Dave_techie · Post by **Dave_techie** » Thu May 07, 2009 2:29 am

thank you for the advice so far, I do appreciate more (should note only 5% of epileptics are sensitive to strobes, despite the media telling you otherwise)

Post by **AntiM** » Thu May 07, 2009 6:22 am

Also, prepare for the worst case scenario if you have to be taken off the playa for medical care. Make sure your campmates know when it would be appropriate to pack up your stuff and where to take it after the event. Of course, hoping this would not happen, but plan for it.

Sail Man · Post by **Sail Man** » Thu May 07, 2009 10:06 am

Good advice so far, also make sure your campmates know who your emergency contacts are so they can pass it off to ESD if you have to be evac'd.

theCryptofishist · Post by **theCryptofishist** » Thu May 07, 2009 10:12 am

And maybe have insurance information handy.

And if you don't have it, look into some sort of medical evacuation insurance--helicopter rides are pricey. Or would he go by ambulance?

misfit · Post by **misfit** » Thu May 07, 2009 10:29 am

a couple of extra points that a fellow burner with a seizure condition brought up,,, try to take your meds the same time eveyday, and she stressed the need for occasional rest. she also said the hardest time she had was late in the week during the evening when stimuli was highest on very little sleep.

EspressoDude · Post by **EspressoDude** » Thu May 07, 2009 11:04 am

Be sure that you use a "pill sorter" one of those box things with the days labelled and your meds day by day. It is very easy to forget which day it is. Also have a spare bottle of meds in a different location (purse vs suitcase) so if one gets lost you are not without. Hopefully you are using Dilantin/Phenytoin which is one of the most forgiving on missing a dose. Keep track of your hydration at home for a few weeks and then get the drug blood level checked. On the playa you will need 3 - 4 liters of water a day, so you may have to increase dosage if your drug is highly water soluble. Keep up on electrolytes and calcium, because so much water will flush those out too. Root beer floats are good therapy. Talk to your Dr. about possible increased dosage for the event.

Have someone else available to drive. If you have a seizure, you legally can't drive for several months. In WA the Dr. tells you; in OR the Dr. takes your license. Don't know about NV... Nearest real hospital is in Reno, about 125 miles

edit to add: when you get your camp set up, walk to the nearest med tent with your meds and introduce yourself and your condition, and location. Hopefully you will never see them again.

Oldguy · Post by **Oldguy** » Thu May 07, 2009 2:13 pm

Ask your doc about meds and carry a pill locket on your necklase.

My little brother had petit mal seizures. He would go into a fog just before he started shaking. He could feel it coming and he'd put a quarter grain tablet of phenobarbital under his tongue. Most of the time he could catch it in time. Sometimes he didn't and he would faint away. It was scary to us kids...

------------
edited to look up medication name

Dave_techie · Post by **Dave_techie** » Thu May 07, 2009 2:36 pm

well, I am on zonegran, so no phenytoin/dilantin, (dilantin actually was REALLY hard on me when I missed a dose) (all kinds of stuff went wrong, but everyones brain is different)

my worst case scenario drug mix is a depakote ER in the morning (250 mg) 400 mg of zonegran at night, and sometimes a benzo is thrown in (ussually 1 mg of lorazepam) there is I have some smaller activity I do have the "Rescue valium gel" for if I have a bad grand mal\tonic clonic, but, fingers crossed, I've never had to use it

nevada is three months after the seizure (loss of consciousness seizure, don't nail you for the blips on radar) no driving, so, yeah, I'll have to have a second driver, I'll be a virgin this year, so I still haven't decided who to camp with, I do know people who will be there, and I am going with someone, so I will have an in place support network

I've never had a seizure severe enough that I've needed hospitalization, so medivac shouldn't really be a huge issue, I'll just need to be turned on my side during, to vomit up the blood after, and to make sure no one lets me walk in front of any mutant vehicles when I am post ictal and don't know which way is up.

I was a little concerned about the pill sorter, because I didn't know how anal LEO's got about that sort of thing, I WILL introduce myself to the medical tent nearest the spot I camp and hope not to see them again (unless maybe I just visit them to chill, medical volunteers and staff need to have friends at the burn too)

Also thinking I should find something nice to gift the medical tent with :P

ourania · Post by **ourania** » Thu May 07, 2009 3:44 pm

Hey Dave,
I don't know what your triggers are. You mentioned that it's not blinky lights ( a lot of people DO think that's the only one). I would watch your body temp. I say this knowing how hot it's going to get out there, but nothing seems to bring on my daughter's seizures more than over-heating. I'd spend the hottest part of the day in some good shade with cool fluids taking it easy. Good advice for anyone but especially if over-heating is a trigger for you.

Dave_techie · Post by **Dave_techie** » Thu May 07, 2009 6:55 pm

mostly it's sleep deprivation, and waking up "wrong" I'm not sure what catalyzes waking up wrong, but there is something materially different between it and waking up properly i.e. I can run all day, seizure free on a half hour of sleep, or go 72 hours with no sleep, and have, not that it is wise, or I try to, ever, I am VERY apprehensive is I don't get in my 8 hours if I wake up properly. but waking up improperly becomes more and more probable as certain factors increase (i.e. neurological stress) and so I want to keep those down a whole lot

I've only ever had a seizure after running a long distance (knew I was having an asthma attack, knew there was stuff going wrong in my brain, but I had not properly run a mile in a VERY long time, and NEEDED to do it for me, fell down twitching 16 feet from the finish line, in retrospect, kinda funny)

and within a half hour of waking up,

so as long as I don't do anything stupid on the playa (am a native nevadan, know what constitutes stupid in 100+ weather) and stay clear for that half hour each time I wake up (not safe after cat naps unfortunately, which is mad gay, but what are you to do?) it sounds like I will be basically okay.

maybe I should paint proper seizure first aid on myself :P

dr.placebo · Post by **dr.placebo** » Thu May 07, 2009 7:20 pm

So far the advice has been quite good: keep your meds up, keep your stress down, be aware of the resources around you, and be prepared for med evac (worst case).

The one thing I'd stress in addition is NEVER be alone in the middle of the playa. It would all too easy to be injured by a vehicle (even a bike) if you were down and not visible due to dust or darkness. Being alone is risky enough even for those who are in good shape, and sober, and not likely to go unconscious. Use the buddy system.

Besides, it's usually more fun that way.

theCryptofishist · Post by **theCryptofishist** » Sun May 10, 2009 1:12 am

If you don't have a medic-alert or simlier jewelry, you might want to prepare on or more cards with pertinant information. you can do the poor man's laminate with packing tape. Anyway, condition, medications, off[playa contact, insurance, ect. Make sure campmates know where it is. Then if something does happen the information is right there, and your friend doesn't have to worry about remembering it, just telling the medics where it is.

brcprincess · Post by **brcprincess** » Mon May 11, 2009 1:40 am

I would not recommend going to Roots Society.

Our camp dubbed it the "Seizure Dome".

Simon of the Playa · Post by **Simon of the Playa** » Mon May 18, 2009 6:26 am

it was'nt the rapid fire strobes or the gut wrenching sub-woofers, it's the Ultra low frequencies we've been mixing in that we havent quite perfected, so yeah, stay far away from 10:00 and 'Splade.

ygmir · Post by **ygmir** » Mon May 18, 2009 6:57 am

Simon of the Playa wrote:it was'nt the rapid fire strobes or the gut wrenching sub-woofers, it's the Ultra low frequencies we've been mixing in that we havent quite perfected, so yeah, stay far away from 10:00 and 'Splade.

I would think (not well, not often) that, "Root Society" would be like a homeopathic remedy..............

ygmir · Post by **ygmir** » Mon May 18, 2009 7:11 am

ygmir wrote:
Simon of the Playa wrote:it was'nt the rapid fire strobes or the gut wrenching sub-woofers, it's the Ultra low frequencies we've been mixing in that we havent quite perfected, so yeah, stay far away from 10:00 and 'Splade.
I would think (not well, not often) that, "Root Society" would be like a homeopathic remedy..............

on a side note:
Do you at "Root Society" keep pencils, just in case of "oompah/oontz" inspired seizure?

Simon of the Playa · Post by **Simon of the Playa** » Mon May 18, 2009 7:22 am

aversion therapy for Juilliard students.

ygmir · Post by **ygmir** » Mon May 18, 2009 7:25 am

Simon of the Playa wrote:aversion therapy for Juilliard students.

I wouldn't have thought they'd swallow their own tongues..........

theCryptofishist · Post by **theCryptofishist** » Mon May 18, 2009 9:23 am

ygmir wrote:
Simon of the Playa wrote:aversion therapy for Juilliard students.
I wouldn't have thought they'd swallow their own tongues..........

That whole swallowing or biting their tongues doesn't actually happen (0r if it does it's vanishingly rare.) Even in the midst of an electrical storm in the brain, the body looks after itself to the best of its ability.

(Is is even possible to swallow one's own toungue?)

oneeyeddick · Post by **oneeyeddick** » Mon May 18, 2009 10:17 am

If you bite it off it is.

Had to place a wallet or something like that in my mom's mouth because her grandmals made her chew up her tongue.

theCryptofishist · Post by **theCryptofishist** » Mon May 18, 2009 2:31 pm

Okay, it does happen. I thought that was an urban legend.

oneeyeddick · Post by **oneeyeddick** » Mon May 18, 2009 2:53 pm

some people can 'swallow' thier toungue by choking during seizure, thier muscles in thier throat constrict, bringing the base of the tongue down onto thier throat(source of the urban lengend) the pencil could be used for clearing a passage, or for keeping them from biting themselves...it depends on the individuals type of seizure the person has.

it is never a good idea to use your finger in either case.

misfit · Post by **misfit** » Mon May 18, 2009 3:04 pm

bud abbott, (abbott and costello), would keep unsharpened pencils in his pocket that where used as bite sticks. bite sticks should not be used to clear or open an airway. bite sticks are used to hold the tongue down and prevent biting of the mouth and tongue....

ygmir · Post by **ygmir** » Mon May 18, 2009 10:18 pm

boy howdy, sure shows you can learn something new...........or I can anyway.
I thought you drove the pencil through their tongues, and pulled them out so they wouldn't swallow them..............

Sensei · Post by **Sensei** » Mon May 18, 2009 10:54 pm

That is SO not funny.