Hi there, reddit!

Last summer, I began to experience sensations of combined déjà vu, nausea and hot flashes. It was a mystery, until August 5th, when I suffered a major tonic-clonic ("grand mal") seizure. I was diagnosed with temporal lobe epilepsy.

From then on, we understood that the episodes I was having were actually seizures themselves, but generally lacked unconsciousness and convulsions.

I got a great doctor at the Cleveland Clinic Epilepsy Center. After a year of unsuccessful treatment by four medications, the department of neurology accepted my request for surgery, and on December 16th this year I had an operation to remove the temporal lobe, amygdala, and hippocampus in the right hemisphere of my brain. I'm going through the recovery period now, but will be several more weeks until I'm back to normal.

So ask me anything! I'm an open book. Fire away!

Proof 1

Proof 2

More info about TLE

EDIT: It's been three days and I've answered countless questions, read countless stories and encouragements, and smiled a lot of smiles!

Thank you for allowing me to share my story.... And have a happy New Year!

Comments: 721 • Responses: 74  • Date: 

Count_Zacula507 karma

Are you excited to crack the" i have half a brain and I'm still smarter than you" line?

beelzeflub273 karma

Yes! Haha!

Timbiat76 karma

This might sound stupid, because I don't know shit about science and medicine, but if you shake your head around do you feel it rattle around now or did they fill it with something to keep a tight fit?

beelzeflub21 karma

The cranium is reattached with strong stuff (tiny plates, screws, etc).

If I shake my head all I feel is dizzy and nauseated lol.

missmisfit251 karma

On the plus side, how do you like your new dope side shave pixie?

beelzeflub404 karma

I love it. I can't wait for my hair to grow more so I can have it really contrasting.

I know a lot of men hate the look, but I don't give a fuck about them. :)

EDIT: lol at the TRPers not able to take a friendly jest

lemon_vampire156 karma

I think most men will see the hardcore skull scar and realize the shaved head was not the result of you trying to be cool.

Unlessss....oh my god you removed part of your brain just so you can be edgy and unique, you poser. It all makes sense now.

beelzeflub101 karma

Aw damn you got me! You'll never catch me alive, fuzz!

LibraryLass9 karma

It seriously is pretty rad though. If I were you I'd keep it. Like, permanently.

beelzeflub44 karma

I can wear it in a glass helmet like mojo-jojo

limited-papertrail53 karma

Is it weird having this now super-visible outside indicator of what was previously a super-invisible "inside" experience?

beelzeflub117 karma

It's super cool as fuck cause now I get to tell an awesome story.

crunkadocious211 karma

Do you feel that your mental capacities have diminished, or stayed the same?

beelzeflub286 karma

I'm pretty much the same, I'm just easily cranky and frustrated about now, so I have to work through that until I feel totally normal again.

ejd711149 karma

Did you get to see the part they removed?

beelzeflub131 karma

Unfortunately no :(

Flabberjackets84 karma

Why not?

beelzeflub153 karma

I donated the tissue to research. And the OR didn't take pictures for me, lol

Mr_Dr_Prof_Derp74 karma

Did you ask? If I ever have a major surgery I'm definitely asking for pics.

beelzeflub101 karma

I did, he said no. Maybe it can be a surgical distraction or something.

william_fontaine43 karma

They might get you the post-surgery MRI pics though - those are pretty cool because they show exactly how large the removed section was.

beelzeflub52 karma

That will be awesome. Brains are awesome as fuck

bostwickenator95 karma

Do you have your brain bits stored in a large glass jar, if not why not?

InvincibleAgent55 karma

She said to another question she wasn't even allowed to see the removed parts.

Jack_Of_Shades69 karma

That sounds... suspicious.

beelzeflub75 karma


Puccolol182 karma

You believe that shit? A piece of brain is a biohazard? You're being cloned, mate.

beelzeflub113 karma

Before I registered for surgery I elected to donate my brain tissue, so they probably had it immediately put in sterile formaldehyde to preserve it.

ACincoProduct79 karma

Do you feel your personality has changed?

beelzeflub97 karma

No. I feel a little irritable from the side effects of the meds, and this persistent headache that won't seem to let go!

ACincoProduct42 karma

:( sorry about the headaches... but i'm glad that your personality hasnt changed! i'm always interested in seeing how brain affects mind (and vice versa), you know? how big of a piece was taken, if you dont mind me asking another? (unless this was answered im replying from my inbox)

beelzeflub55 karma

They removed the first ~3 cm of the right temp lobe, along with the amygdala and hippocampus on that side.

Casemister76 karma

Since the amygdala is partially responsible for the fear response, have you noticed any changes in this particular domain?

I.e.: Do you previously have any fears or phobias that aren't as strong now the operation is over?

I realise this is a very personal question, so feel free to tell me to fuck off if you wish.

beelzeflub100 karma

I don't have any notice of that, but I was never prone to phobia. I am pretty irritable lately but I think it's just the recovery pain.

The surgeon later told me when took them out, the amygdala and hippocampus were hard and rubbery, and he thinks they may not have developed correctly in utero. I had always had some anxious behaviors, and before I was diagnosed I was depressed, and then maybe even bipolar disorder.

I still don't know what the fuck the amygdala and hippocampus are supposed to feel like, and Google hasn't turned up anything, so that's frustrating.

rubiscoisrad28 karma

I actually wanted to know the same thing. On a side note, since you're recovering, I'm assuming you're watching a fair amount of movies. Do you have a different response to horror/thriller films than you did before?

Also, those are some badass staples!

beelzeflub87 karma

I feel more or less fairly normal, though I did have a freak out today because annoying noises make my head hurt worse, and it asked my sister to stop making that noise (tinfoil or something?) and when she didn't stop (she often thinks I'm just faking it/being over dramatic, which I can be) I started to get frustrated... she thinks I like to be bossy and it just escalated to pleading, being told to "calm down" and next thing I knew my pillow was over my head and I was just like, "PLEASE STOP I CANT TAKE IT MY HEAD HURTS SO BAD ITS NOT THAT HARD WHY WONT YOU PLEASE JUST LISTEN TO ME?? ;_; ???"

I'm in recovery for fucks sake... I'm really anxious and sensitive during this time. Now I just make a fucking embarrassment out of myself.

buonacos52 karma

she often thinks I'm just faking it/being over dramatic

Having brain surgery didn't convince her it's real?

beelzeflub35 karma

She hates being told what to do, ngl... She's pretty lazy. She doesn't even brush her teeth on a daily schedule. :X

beelzeflub27 karma

I haven't watched any movies (too much headache and nausea) but I really want to see the force awakens!

Not many fear related emotional changes as of yet. Doctor and I don't expect it to be a huge problem.

rubiscoisrad8 karma

Noice. It's on my to-see list, too. I'm just turning a blind eye to various spoilers.

Glad there's a good outlook on your future mental set. That's really encouraging. :)

P.S. Hope the nausea/headaches don't stick around too long. I'm assuming you're being pumped full of painkillers and antiemetics?

beelzeflub20 karma

Tummyache: Zofran, Zantac

Pain: Norco (not anymore), Percocet and occasional Tylenol. Valium helps as a muscle relaxant.

Miralax for constipation, god damn it.

And my aunt got me done coloring books for grown ups and some nice prismacolour verithin colored pencils. When I finish some up I might share them. So much detail and time consumptiom!

largumboy74 karma

How severe was your déjà vu? Would it be long it be long instances or really short "hey I've seen that before"?

beelzeflub105 karma

It would be very brief sensations of feeling like, "I've seen this in a dream before" even though I couldn't out my finger on it. Then my face and neck would feel hot and flushed... I felt anxious, nauseated... It was. Awful.

gruffity44 karma

I get this roughly 2-3 times a month should I be worried? I don't have any other signs as far as im aware

beelzeflub71 karma

You should go to your doctor ANYTIME something out of the ordinary is happening to your body.

J-01251 karma

Probably should talk to an actual doctor.

beelzeflub59 karma

Definitely. 2-3 times a month though, I wish mine had been like that. I was up to 5 times a day at my worst.

kreugerburns49 karma

Wow thats crazy. Hope for the best in your recovery...Since I have to ask something, whats your favourite meal?

beelzeflub83 karma

Pizza, hands down

I also like flatiron steak, medium rare. And hot boneless wings. With jalapeños. And chicken fingers with fries and spicy buffalo ranch sauce.

gsasquatch48 karma

Would you rather have a bottle in front of you?

beelzeflub34 karma

No, I'm really craving cranberry juice right about now. But getting to keep the water bottle from the hospital is awesome!

revnhoj50 karma


beelzeflub4 karma

Ah! I've never heard that one before. Lol!

Cinderheart45 karma

When you first woke up from the surgery, did you notice anything feeling different?

Asides from the meds of course.

beelzeflub49 karma

No. I was just disoriented and nauseous as fuck.

callmesquirms14 karma

Did your head feel lighter, weight-wise? Or has it since swelling has gone down?

Edit: I see it was answered already. And I'm glad it doesn't! That seems like it would take a lot of getting used to.

beelzeflub11 karma

The swelling has gone down a bit, it's not so lopsided looking and it feels way less like a bowling ball lol. I kinda get motion sick when I walk around but I think it's fluid buildup near my ear (my right ear has been pretty sore too).

satanicwaffles36 karma

Do you like celery more than you used to? Apparently people who have had brain injuries or brain surgery love the stuff for some strange reason.

beelzeflub36 karma

I've always loved celery. Mmmmm ranch veggie dip

Justjack200134 karma

How bad was your epilepsy before the procedure?

beelzeflub68 karma

Enough to make my quality of life suck, I wasn't allowed to drive, and I felt isolated a lot... Tired a lot...

Some people might say "not bad enough to have surgery!!!"

But I was frustrated and depressed about my situation, which is reason enough!

Justjack200115 karma

That's what I was wondering.. My impression was that surgery was reserved for extreme cases only.

beelzeflub31 karma

Depends on your definition of "extreme."

Much of the field of Epilepsy Research is becoming more positive to the idea of surgery as an earlier approach in the course of treatment, especially in the way of patient lifestyle, so to try surgery early on instead of making patients go through up to years of medications and breakthrough seizures.

HurleyDurvursrn26 karma

Can you describe what it feels like to have a seizure?

beelzeflub55 karma

1.) déjà vu, briefly imagining that I'm experiencing something from a dream, but I can't put my finger on it...

...sometimes it's jamais vu, I feel "displaced" in my surroundings, I know where I am but nothing feels "real", like I'm disembodied from the world in a dream.

2.) hot, flushed feeling spreads across my face, neck and chest. My skin is visibly red and hot to the touch.

3.) mild anxiety, I sit down to cool off and feel really out-of-sorts; if at home, I lay down on the carpet just in case I end up having a major convulsive seizure.

4.) nausea, sometimes very intense and I actually vomit.

5.) fatigue... Sometimes I sleep for hours after a particularly bad partial seizure.

Once, I had a simple partial seizure that turned to a complex partial seizure.... I was so hot that I blacked out, started taking off my clothes to cool off. I was making strange movements, repeatedly making rude motions with my hands in my underwear, smacking my lips and mouth in strange ways... then my mom found me naked in my room and dragged me to bed, where I had a full-blown tonic-clonic seizure. This was only the second unconscious convulsive seizure I've ever had. I don't remember taking off my clothes or anything thereafter until the paramedics were above me and I was crying from the worst headache ever. I had been convulsing for almost five minutes, which can be extremely dangerous (status epilepticus). I slept for half a day after that... It was so terrifying, I hadn't had any seizure of that magnitude in a year. I lost my driving privileges for a while after that.

Those are from my experience. It has been so bizarre. Plus, my boss didn't understand when I called off work because of seizures. He thought it was dubious that I was able to consciously call off on a bad seizure day (he assumed all seizures to be grand mal), but once I slipped a pamphlet "All About Temporal Lobe Epilepsy" on his desk I think he finally got the hint that not epilepsy is the same.

ima-kitty19 karma

holy crap! no wonder they cut it out. how is your short term memory?

beelzeflub22 karma

My short term memory is decent right will tell m.

xavyre22 karma

So have you had a re-occurrence any of the issues that caused you to have this done?

beelzeflub28 karma


mcjagga18 karma


beelzeflub112 karma


EDIT: way to edit your question you jerk

TheNotorious2313 karma

I'm curious. What did he originally say and then change it to?

beelzeflub32 karma

Don't remember, but then it was changed:

Something like "do you perform sexual favors for money?"

Xcosh18 karma

Favorite cheese?

beelzeflub34 karma

White cheddar cheez-its

feniksfe13 karma

What's the last image or sound you remember before passing out for surgery?

Also, what's the first image or sound you remember upon waking up?

beelzeflub18 karma

1.) having the oxygen mask put on my face and being told to breathe normally.

2.) being wheeled into the Neuro Recovery ICU, disoriented and scared as fuck, and heaving over a barf tray from the anesthesia wearing off/morphine kicking in.

Elementi12 karma

Maybe a dumb question but does one side of your head feel "lighter" than the other?

Wishing you a speedy recovery.

beelzeflub17 karma

No. The right side (surgery side) of my head is in an awful state of pain, pulsing throbbing headache... My head feels like a bowling ball honestly, though the first several days after the operation the right side of my face and the temple were all swollen from the excess fluid from the trauma of the craniotomy... I had a pretty badass black eye from it, too, lol.

GoingSom3where10 karma

How long until you can resume normal activities? Surgery recovery blows. I hope it goes by swiftly for you!

beelzeflub17 karma

Up to 6 weeks, I'm on week 2 to the date right now, so in 2 or 3 weeks we'll do a check-up with the doc and she's how it's going. It's not the same time for everyone.

My employer has assured me that I can wait to return until I am fully confident and capable, and I hope they'll still go easy on me at first as I still cope with the minor memory effects.

akhilegends7 karma

Has anything changed about you since a part of your Brain has been removed? Also, has your weight decreased since the brain is one of the heaviest parts of the body?

beelzeflub15 karma

I had such a small amount removed it didn't affect my weight. However, I have lost weight over the past year due to meds and fatigue.... I'm 5'5" (165cm) and I weigh around 100lb (45kg). Borderline underweight. The medications make my appetite so horribly bad... I wish I could gain. I've been trying so hard.... :(

Zachaban7 karma

This might sound weird, but I'm jealous. I'm epilepsic myself and when I was in hospital for a more detailed diagnosis, I was hoping it'd be temporal lobe so it could be operated and the illness just disappear (It wasn't).

So my question is: Are you glad that the operation was a possibility or would you have rather not gone through the experience of brain surgery, given that it could have been kept under control with medication? Must have been pretty worrisome.

beelzeflub11 karma

I'm sorry to hear it didn't go as you planned. Epilepsy is a bitch to be reckoned with!

As for me, I'm thankful for the possibility of surgery, I was on so many medications on top of my other meds, and they made me irritable, took away my appetite, made me exhausted all the time.

Although the surgery might not eventually eliminate ALL my seizures, I still have a good prognosis due to my age and the location of seizure activity.

Epilepsy and major depression (which I had suffered for a long time) are comorbid, and we hypothesized that certain behaviors from my youth might actually have been latent epileptic activity.

I was in the Cleveland Clinic Epilepsy Monitoring Unit for five days, where I was hooked up to an EEG and could be examined by EEG or video 24 hours a day. They took away my primary medication in order to trigger seizures and pinpoint the location of seizure activity. I had 14 seizures in 5 days! And although my seizures were pretty much only simple-partial ("aura"), they still felt awful and sick to my stomach. Even accompanied with facial motor tics, and hallucinations of funny tastes in my mouth.

Surgery sounded scary at first, and at first I wondered "do I really deserve this? Is my condition bad enough, while so many have it so much worse?"

Eventually, after talking with my doctor and parents, I realized: "just because this option exists, and although it is available for people with far more severe cases than mine, does not mean my problems and my desire for surgery are any less valid."

And that's my choice and I don't regret it :)

My_Big_Fat_Kot7 karma

lots of people are one here asking you "what have you noticed thats different then before?" you can't really answer them because you're all duped up on meds, and you've just been out of surgery for just two weeks now.

could you come back in a month or two and tell us then what, if anything, you notice is different?

beelzeflub10 karma

I'll try to remember!

giziz325 karma

Bucket of questions.... Apart from are you hot.... Lol. How was the experience of the surgery... Was it awake or asleep. How long did you consider the surgery for? Have the seizures/episodes now stopped? Did you lose any other faculties as a result of the surgery...... Wow who knew I was so interested.... I'm actually in awe of you posting this. You are brave to ama this...

beelzeflub29 karma

The surgery was done under general anesthesia; I was asleep for about four hours. We had been considering the operation for about five months, especially because the condition had become intractable (aka a relatively high number of meds were not controlling the condition).

The surgeon who performed the operation is one of the premiere epilepsy surgeons in the country. He has even performed surgery on children as young as 6 months old, and he visited my room every day after my surgery. He is a very genuine, friendly guy.

My seizures have more or less ceased, and I'm not allowed to stop taking the seizure medication for 6-12 months just as a precaution.

As for aftereffects, I had some severe leg and lumbar pain to the point I couldn't walk for a few days... It was agony. But it turns out it was just some extra cerebrospinal fluid accumulated at the bottom of my lumbar spine, and it eventually went away on its own (and thank god for Vicodin, and Percocet, even though they make me bit queasy), I'm able to walk normally again which is great!

I've still got some awful pressure headaches mostly on the surgery side of my head, but that is to be expected with any brain surgery, of course :P

I've been kind of irritable because of the pain, and a little clumsy when I walk, and I can't open my jaw all the way due to the slight trauma to the mandibular join when they sawed open the hole in my skull for the operation. Gave me a pretty intense black eye, too. I looked like Sylvester Stallone, lol.

As for the long term, I can expect to have some mild short-term memory issues, but those are easy to cope with by making lists and doing activities to help regain my memory. Plus, my brain is still young and malleable so it will probably be able to regain proper working order in time.

I'm sleeping a lot, which is also understandable, I don't want to overwork my brain while I recuperate!

Right now, I'm just enjoying the time to be laying around (though I do try to be active if I'm not on the verge of sleeping) and doing some grown-up coloring books I got as get-well gifts. They're very relaxing!

Thanks for the awesome questions and encouragement. Epilepsy is a hell of a beast, comes in many forms and is not fully understood. It's not an illness, not a disease, and its reason for occurrence is not fully known.

But there are many options to help. Like donate to the epilepsy foundation!

qroosra5 karma

i had only a 3-hour operation a week ago and have been sleeping a LOT also. :) i think it comes with the territory. heal well!

how is your throat after all that time under? i found halls cough drops to help the soreness.

beelzeflub5 karma

Woo surgery recovery pals!

My throat doesn't feel too different at all, thanks to the expert anesthesiologists at the Cleveland Clinic :)


Did you try Marijuana at any time to mitigate your seizures. If so, did it have any effect?

beelzeflub4 karma

No, it's still illegal in ohio. And I live my parents who are very conservative.

Trojan_Man683 karma

Do you experience any physical pain on the stitches usually?

beelzeflub4 karma

A bit, they would snag on my pillow lol. It hurt get them out

Setsu-san2 karma

Woah, that is one huge scar O_O

What were the risks of the surgery? Do they have any idea why the other treatment was unsuccessful? Is that a common thing?

Anyway, I hope your headache will get better soon!

beelzeflub3 karma

The surgery has an extremely low mortality rate especially by my surgeon.

People need to click the damn link, but temporal lobe epilepsy does not respond to drug treatment very well, I had been on four different medications with no success, the seizures just kept returning.

Nowadays, the medical community is far more open to the use of elective surgery as a front line option to treat epilepsy, if the patient wishes it, instead of forcing patients to go through dozens of drug treatments without success.

SlapYoMomma2 karma

Malik's you have preferred the surgery take place anywhere else? Or is Cleveland the city?

beelzeflub2 karma

Cleveland Clinic is one of the best hospitals in the world. It's so big it has its own area code.

wedemboysnsb1 karma

Do you have medical insurance? If so, what kind?

beelzeflub1 karma

If I didn't have insurance I never would've had this done.

Medical Mutual.

mooseschwitz-1 karma


beelzeflub2 karma

I don't speak that language. Please resubmit your question in English.

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beelzeflub9 karma

I am genuine as fuck brah

SpecialEdJedi-15 karma


beelzeflub4 karma

No, actually it's rather cold here.

SpecialEdJedi-12 karma

Then put on a bra?

beelzeflub4 karma

No. I'm sick at home and it's not your bees wax. :)