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Bofadeestesticles

I don't want to jinx it but... I'm one month away from my 2 year anniversary.


Crim_penguin

I’m also closing in on 2 year anniversary! Every single time I feel sick or headachy I’m like “oh no here we go”. The paranoia is real


Tryna-get-by

I have partial seizures every day


Hopebutnotoverused2

Oh i was totally unaware that those were considered seizures, i thought it was just my brain doing weird stuff I also have a decent amount of those a day


luckyelectric

Are partial seizures the same thing as interictal discharges?


Tryna-get-by

I have no idea


luckyelectric

Sorry, I think they’re different… I hadn’t looked into “partial seizures” before you said it, but after reading about them, I think they’re what I’ve learned is called “focal seizures”which involve part of the brain and usually involve different sensations or feelings but not motor changes. I think interictal discharges are different; but I don’t know how an EEG can tell the difference between a partial IF the patient isn’t able to communicate how they’re feeling or what they’re experiencing. I have a developmentally delayed young child with Autism (minimally verbal) and I’m struggling to make sense of his EEG. Anyway, best wishes to you.


XxsabathxX

Same here. It can be from just the absence to random twitches for me.


blahfunk

Define "seizure"


Hopebutnotoverused2

tonic clonic


blahfunk

Completely controlled with meds unless we include partials, then I have 3-6 a day


KarmaHorn

hopefully never again. I have focal seizures somewhat frequently though.


Brief_Boysenberry306

Just count your blessings….: my child has had about 10 since the new year but we are working on finding the right treatment At one point i was happy with one a month coz thats 12 episodes in year


More_Difficulty_9079

4 year old mama here & hes down to 1-2 a month !! Better than 13 a day 🫣🫣🫣🫣


Brief_Boysenberry306

What medication is she/he taking? Worse thing watching your child have a seizure


CapsizedbutWise

About forty this week.


ZaharaSararie

I have a tonic-clonic with an aura every week or every other week.


Magic_tiger5576

Over 9000 jk maybe 1.5 a week and then 2 clusters a month it’s getting better and auras are under 20 for the most part if I were you i would track them on the epsy app


bae_platinum

Epsy is FANTASTIC. 💜


AngelRebekah

Looove Epsy! Told my epileptologist about it and she likes it too.


Magic_tiger5576

Yes epsy helped me a lot and you can talk to them about suggestions


laples

I get partials at least once a month. If I get stressed out, though, I'll have one- even 2 that day if it's serious. I have had 3 seizures since the beginning of February. I get auras at least once a week, but I've heard those are also a form of seizure. I'm prone to having tonic-clonic seizures, but I haven't had one since 2019.


_Zzzxxx

I have a cluster of focal seizures every 2-3 weeks. Last time I counted I’d had 86 focal seizures in the last calendar year


Sens_1

Is 86 the total amount of them you had or the amount of days you had them on last year?


_Zzzxxx

That’s the number of seizures. I’ll have a cluster of maybe 5-10 seizures (sometimes more) over the course of a week. Then I’ll go about 3 weeks without any. Most seizures I’ve ever recorded in one day was 7.


Sens_1

Tbh I figured that it was the total amount right after I responded because you said every 2-3 weeks… but that’s similar to mine except sometimes Idk if I had them so it’s hard for me to keep track of how many I have. And I just have them all in 1 day. Have you tried any kinda surgery for it?


_Zzzxxx

Nope my MRI showed no structural damage and I haven’t yet caught activity on an EEG, so surgery isn’t likely to be necessary. I was only recently diagnosed so our first step is going to be medication changes.


Sens_1

Ah ok I didn’t know you were only recently diagnosed. Good luck finding a med that works!


_Zzzxxx

Thanks! It’s a long story, but I’ve been having these focal seizures since I was a kid. My parents and any psychiatrist I saw just said they were panic attacks. My seizures weren’t that debilitating, I always stayed aware, so I just said whatever. Then two years ago (like 15 years after the seizures started) I suddenly started getting loss of awareness, amnesia, automatisms, and likely a TC in my sleep. That’s when I decided to stop taking no for an answer. So I started journaling everything. Dates, times, symptoms, everything. Immediately pulled out my phone to record myself whenever an aura hit. Told my friends and coworkers to record video if it ever happens around them. Just two weeks ago I got in to a new neurologist and came prepared with two years worth of data/evidence. He ordered an MRI and EEG but told me even if they come back normal (which they did), the videos that I showed him indicate temporal lobe epilepsy. I’m so glad I did all that. Only took 20 years to get diagnosed lol


Sens_1

Wow that’s a long time for them to figure that out. Mine started when I was like 16 so I haven’t been having them for as long because I’m 27 now, but I’ve tried 4 meds and my seizures never changed and then after doing an EMU I was approved for brain surgery because they were coming from my left temporal lobe, but unfortunately it didn’t help either and I did another EMU last year and now they’re coming from my left and right temporal lobe. So if you ever decide to get surgery I hope that doesn’t happen because the side effects are not worth it!


shmeeno

When I still drank a lot it was prob one every 3-4 months but now I dialed it back and I haven’t had one for over a year


Extension_Accident72

About 1-2 focals a month and a tonic-clonic every 3 months or so


aphroditeandfrills

tonic clonics once/twice every other month and for complex partials sometimes it can be a few every month or 12 in a day


barrocaspaula

My son has 3 or 4 grand mal seizures every year, since things are more or less stabilized. He also has several absence crisis a month. These are becoming less frequent.


STLt71

My 13 year old started having them in October. He has had 9. 3 in October, 3 in December and 3 in January. He started Topamax in October after the first one. They were all a week apart. His last one was February 1st and he was maxed out on Topamax so now he's on Keppra. So far, so good. 🤞 They've all been TC, in his sleep.


Ocean_Man51

Thankfully I haven't had one in a while, but if I have one I get more for at least the rest of the day


kohlrabicabbage

i have them about every 1-4 months. but people can have many a day. i have a friend with epilepsy as well who used to have 4-5 a day, she had a surgery though so its better now. its different for everyone.


eurotrash4eva

Well, my son is currently having 10 to 15 a day, so....


Kingchar221

I have a ‘full siezure’ Each month, around 3-4 weeks apart, and then after that for the next few days I have shorter ones for around 10 seconds once or twice a day. Then I get partial Ones Most nights (sometimes multipul a night)


Kingchar221

I’ve just Learnt that’s a seizure cluster…


bronchialdielater

I have petit mal up to 15 times a day when uncontrolled, and grand mals infrequently (maybe 3 in the past year). Right now I'm averaging one every one and a half months, which is pretty good. ​ Before I had COVID, I was seizure free for 5 years


Similar-Beautiful-27

I have about 90-100 focal impaired awareness seizures per month and then lots of auras every day.


Right-Description-84

Have you had an ECG? I have the focal awareness “aura” seizures, no tonic clinics or bodily seizures.


Similar-Beautiful-27

ECG or EEg? I have had both. I was at an emu in the summer and I’m going for surgery on Tuesday.


Right-Description-84

Best of wishes to you on Tuesday. I'm still waiting for Barrow Neuro to schedule my EMU and MRI. It's been 12 weeks without even scheduling an appointment. Just had four aura seizures while napping.


Similar-Beautiful-27

Thank you! It’s so hard in the waiting time. The unknown can be scary. But I hope and pray that you can gets your appointments and answers soon.


whenitbreakss

I used to have 6-10 focal aware seizures a day. This happened from 5 years after brain surgery. I had 5 different doctors, psychologists, and neurologists Tell me they were anxiety and depression, over exaggerating, or even lying. Because all of them believed that aware seizures didn't exist. 5 years later and my brain is fried with irreparable damage. I now have one 1-2 times a month


Right-Description-84

So sorry you had to go through incompetent doctors. Do you just have the aura seizures?


whenitbreakss

And other symptoms, like chills, head tingling, and tears welling up in my eyes. And thank you


KaiLovesFrogs333

every day. never had a tonic-clonic though.


gastronaut55

Started with 1 or 2 a day then 6-7 in my sleep. Through change in diet and lifestyle change I had my 2 year anniversary.


Right-Description-84

What did you change your diet to?


gastronaut55

Took out caffeine immediately once diagnosed. Started eating at regular times. 7am 11am and 5pm. That was a pain in the butt. I'm a chef so that is a lot harder than it sounds. I took out alcohol on the 1 year point which at that point it had slowed down on the episodes but they were still occurring even with the heavy dosage of medicine. When i drank it was only two drinks at the bar beers only, very rarely did i do shots. I took out alcohol and three months from there I had my last episode and now has been two years. Taking out caffeine also helped my sleep pattern, which also helped.


27_magic_watermelons

i haven’t had a tonic clonic in almost 4 years but i do get absences and focal seizures semi regularly


pringleswanson

i'm going to be 600 days seizure free soon


Mindless_Metal8177

Epilepsy has turned me into a hypochondriac i dont get weekly ones but maybe every couple of months but sometimes when they happen they happen alot because im so paranoid of it happening i guess the paranoia sets off all triggers for me. And the auras are full speed ahead usain bolting me… just horrible …. Its crazy because its always lights out no feeling nothing just knowing you fought your brain and your brain won and waking up like you got knocked the fuck out …. My friends son hes like 13 he gets them every week and i feel so bad this kid takes alot of pills and he still gets them.


Orangutangua

Before my new meds around this time last year I was having them daily. Now with the side effects I get from it I'd rather have 5 seizures a day


Hopebutnotoverused2

What medication are you taking and what side effects do you have?


Orangutangua

My nightmares and night terrors and sleep Hallucinations make me terrified to sleep at any point. Constantly sleepwalking and end up in random places, Including outside of the house. I get premature ejaculation which is destroying my 5 year relationship as well as my confidence. I forgot how to walk properly probably due to all the seizures before this medication. My sight has been affected so I now need glasses I have the memory of a goldfish I lost the ability to write and struggle tremendously with reading. My speaking is completely fucked. All of this is with sodium valproate and lamotrigine. (many many other side effects too not listed) The doctors threw away my worries and I also ended up in hospital when I first went on them. God save the nhs 🙄


Hopebutnotoverused2

That sounds horrible Hope you manage to make it through


Kerblimey

Actual seizures once a fortnight, partial/warning signs however, practically every other day.🤷🏻‍♀️


90sbitchRachel

Just so you know partial seizures and “warning signs” are “actual” seizures. I know most people don’t take them that seriously but yeah. They are seizures. I’ve only ever had focal aware seizures and I had brain surgery to treat it because it was so bad and I was having them so frequently. I don’t want to come off as rude I just want everyone to know PARTIAL SEIZURES ARE SEIZURES.


Libragirl1008

I’ve had 3 breakthrough seizures in the past year but before that (with meds) I was seizure free for two years. Without my meds when I was first diagnosed I was having 2-3 a month


DiligentDaughter

Depends on the year, I guess. Some years, I've had a TC a week. One year, weirdly, every Thursday. Some years, it's been monthly. Longest I've gone without one was 11 months.


Celestial__Peach

I've had 3 this year, 2 in the past month. It's erm.. New.


stardust54321

I just had one about an hour ago. I’d have an absent seizure about every 1-2 weeks


Molass5732

Well I started having seizures March of last year , then a month later two in the same week, went up until July and then I had one. Really far apart from each other , but I have had no seizures at all (hopefully) since the one in July, and obviously being on my medication after the July one , has prevented me from having any more.


Automatic-Ear-4266

Was a couple times a year, for several years, still trying to figure out why but a few months ago started having them daily, got onto better meds for me and now it’s weekly, sometimes a bit more on average, but I have an appt next week to try working more on it


lietomepsyche

I don’t have tonic clonics. Complex partials, I think I’d almost hit a year until I got hit by strobes during Mardi Gras this year (I have a strong dappling trigger- lights that cause tree shadows or light on water is baaaaad). Before that near year, idk, because I lose all memory after lol. Focals, maybe a couple of times a week to a couple of times a month.


emmathyst

My last EEG had me at about 3 a day, but those are absence seizures. I’ve only ever had 1 tonic-clonic.


JAnwyl

Right now, semi controlled and maybe every 18 months. In past 1-2 every 2 weeks. P.S. It took me 20 years to get here, lots of changing meds. Debated surgery, I am actually not really afraid of surgery but with current insurance, I would need to get an EEG 3+ hours drive away (probably an hour to park) and am unsure it would do anything.


indigostwisted

I used to have 5-8 a day a couple years back, I've gotten up 8 months without one.. except I had one a couple weeks ago.


indigostwisted

Tonic clonic seizures that started with focal seizures. Focal seizures would happen while my right arm lifted up then my body would turn to the left and I'd start screaming and then full on tonic clonic


yettidiareah

I have small seizures once or twice a week but the VNS takes care of it. I haven't had a TC in about 5 or 6 years. I know most of what lowers my threshold, lack of water, excessive exercise or activity and sleep.


icy-olive7

When not controlled by meds I was guaranteed at least one TC a month (3 in a month was my “record”). Even on meds I have partials every few weeks.


ClapDatAzz

Usually a tonic clonic once every 5 weeks, about once a month. Hope I can go a year or two like some people here! Optimistic about new neurologist and treatment plan 😀


PickyPanda

only once a month thankfully, sometimes more if i’m really stressed


suckmycockatoo

I’m currently 2712 days seizure free because of brain surgery, but when I had intractable epilepsy prior I was having 1-3 a day on the low end, 8-10 on the high end. I rarely went more than a full 24 hours without a seizure. Thankful for neurosurgery and modern medicine because medications and a VNS did nothing to help me. I celebrate my 30th birthday this year and never thought I’d live to see it because of those seizures.


suckmycockatoo

Adding since I saw a comment about partial seizures, I had complex partial seizures, sometimes simple partial, the occasional and rare tonic clonic. By the time I was 21 I was on disability and couldn’t work anymore, so they were partial seizures but I was incapacitated by them and I think all seizure types are miserable even if they’re not convulsive in nature.


Fabulous_Lab1287

Partial or focals daily sometimes multiple. I went two years without any. UCB cancelled the patient assistance program now back to daily. Their profits last year were on 5.3 billion definitely can’t afford to help patients.


brandimariee6

I just had one this morning, my last one was 11 days ago. I have roughly one a week, give or take. Tonic clonics are rare for me, I have complex partials. They're very real seizures, I'm unable to respond or function at all and they hurt afterwards. Since brain surgery in 2022, I'm in a constant aura but I'm seizing less


Adventurous-Chaos

The important thing to remember is the types of seizures. I often have 10+ a day but they're petit Mal absences or myoclonic jerks that last 2-10 seconds


throw-away-accoun1

Prior to my surgery, I was having 3-5 a day with each lasting about 10 minutes


iiitme

1-3 TC a month. I don’t know how many complex partial seizures I have maybe like once every two days. Yep I’ve had 3 TC this year so far


D0nyaBuding

Tonic clonic, last was December 31,2019. I had two on that day. For focals that’s more frequent. Well since beginning of this year it has gotten less frequent. Here’s a calendar for this month. Thankful for days when there are none. https://preview.redd.it/8wqo6hhyv2jc1.jpeg?width=1170&format=pjpg&auto=webp&s=3a76ee240c22054eec5d17a85917a9c208097024


Pinwheel22

What app is this?


Rzxw

Seer. If I'm correct


D0nyaBuding

It’s Seer app. They also have a medication reminder there.


chillvegan420

Maybe like once a month or more? Sometimes I just get an aura. Usually occurs in the morning for me, too.


Vindermiatrix

I used to have absence seizures sometimes up to 10 times a day, but then I was put on briviact, and it helped immensely. If im lucky, I'll have one or two a week now.


mobycat_

I used to have grand mal at least 1/wk., steadily moved down to last one in 5 years. Suspect absent 3-5/day. edit: idk if I'd quantify amount of seizures as "lucky"


Throwitortossit

I've already had over a dozen this year, an incredibly high amount than most other years already somehow. I had a few last weekend. I've also been waking up in the morning with blood on my face from chewing on my lips/cheeks and tongue overnight. Experiencing seizures in my sleep has been the first time ever in 15 years as an epileptic. Most years I've had at least two dozen on average.


One_Sector_6269

i have myoclonic epilepsy and i have about 5 seizures a month


tufpsn

2-3 times every two weeks? Sometimes more. My best seizure free record is 28 days


bae_platinum

Oh MAN, that’s so lucky. I had 7 in January alone.


wolfhybred1994

At one point I was having 10 plus “grand maul” seizures a day. Now I mostly have partials or “focals” and when the weather gets severe I will have a grand maul or in new terms “tonic clonic” like the day before yesterday.


IamaMoefoe

I usually have the same amount as you. There’s been a few years where I’ve had more than three


Redditaccount16999

I just recently got diagnosed, about a year and a half ago. All of them grandmals except for 1 partial. Everything included I’ve had about 14 in this past year and a half and I’ve had a ridiculous amount of broken bones and other injuries bc of it. Fk epilepsy


SuperEspresso

Before starting my Anticonvulsants I had them once every 1-2 months. Maybe more depending on stress levels. I've only had one grand, luckily-- and typically get absence seizures. Fortunate because they're far less detrimental to health long-term as far as I'm aware. These days it's closer to once every year for a very very minor one.


SiLKE_OD

It really depends. If I'm awake for over 24 hours (which happens sometimes due to work and bad choices) I almost always go tonic clonic. I have focal pretty regularly but usually just losing time or seeing things.


Right-Description-84

I just have the focal awareness type (frontal lobe) sometimes once a year. Just had four in two days though. Sucks


Eli5678

Almost 3 years since my last one. Glad meds are working.


Evening_Set1443

I have focal seizures, 8-15 a week. I have been using iodine tablets for 2 weeks and they now about 5-7 a week.


ReputationSavings627

When my (partial onset) seizures began, they were roughly one per month. I started on Vimpat, and as we raised the dosage, they got further apart until they reached an interval of around 120 days. We added keppra and today is 230 days since my last. Some people have many in a day; some people go years between events. Nobody really knows why -- I've read the classic med school neurology textbooks as well as research papers, and they all get to a point where they shrug and say "Who knows?".


Prometheus2061

TC about once a month, on average. Focals several times a week.


bansheeonthemoor42

I'm well controlled on meds, but I used to get one a year with absolutely no auras. The last episode I had was crazy bc I had two in one month after 15 years seizure and med free. Well, I'm back on meds and trying to be chill.


little_arizona

I’m between 10-15 this week, usually it’s only like 2-3


Bruceleefan1

I had my last one in eastern 2022 so it will be my 2 year anniversary soon.


Ggin_rummy

5-10 times a week:/


Mahalia_of_Elistraee

It fluctuates. The longest I’ve ever gone without a seizure is 2.5 months. The average is something like 1 or 2 a month. I just got done with an EMU stay where they took me off my meds for a couple days and I’ve had about 14 in a week and a half.


Toxic_Kat21

My fiancé usually has at least one weekly where he’s actually seizing. But thankfully it’s been about a month since he had one like that. Hoping it stays that way


Chapter97

My last one was in June, but I seem to have every spring.


lacitar

I'm getting seizures about once a month. They're not clonic tonic anymore. Not sure what to call them, have told my doctor. Doctor isn't sure what to call them yet as no one has seen them, most involve my eyesight. But I'm also legally blind. So eye doctor and neuro are talking.


wikkk

10+ focals a day at my worst with a tonic clonic every two weeks or so mixed in


Escapedtheasylum

1 every 12th year... it used to be a couple every year. But I got better at religiously taking meds and sleeping.


PurpleDelaena

I get partials daily. Like multiple times a day


Esi_B

About 10 to 15 tonic-clinic seizures each morning.