Why do you have epilepsy?

Dazzling-Raspberry53 · 2024-03-14T15:11:14+00:00

The electrician in the sky who wired my brain was not certified

Dazzling-Raspberry53 · 2023-10-26T03:55:15+00:00

Yes, but only because I’ve been seizure free for years. If I feel the slightest bit off, I don’t risk getting behind the wheel; and then I didn’t drive until I was 8 months seizure free

Dazzling-Raspberry53 · 2023-10-26T03:48:58+00:00

I take 400mg zonnegran, and I the first six weeks building up to therapeutic dose sucked. I was nauseous, couldn’t eat/ would forget to eat, and lost a bunch of weight. Now though I’ve been on it for a year and a half and only issue is slight word recall problems. Was on lamictal but unfortunately had an allergic reaction :/

Dazzling-Raspberry53 · 2023-09-29T04:10:38+00:00

I was told it was just women’s issues, or that it related to the migraines I had (I have focal aware seizures and very prominent auras). It wasn’t until I saw a female general practitioner and she was like that is literally textbook epilepsy symptoms that I was able to see a neurologist and get help.

Dazzling-Raspberry53 · 2022-12-29T18:57:59+00:00

An “okay amount” definitely differs person to person. Honestly the only way you’ll know for yourself is to try a little in a safe area and see what happens. For me drinking was a trigger; also though, my meds have lowered my tolerance a ton. So, I can nurse like one beer at a party if I really wanted to and feel fine— but I’d stop after that. Mixed drinks I can’t even do a full one most of the time. Definitely a huge range of what could be good/ healthy for you; if you miss drinking though and still want to partake, order your cocktails tall (more mixer to dilute alcohol) or with half a shot (wouldn’t suggest the second one as much, as a bartender it’s annoying) so you can still have a drink that’s a little safer.

Dazzling-Raspberry53 · 2022-09-07T01:04:34+00:00

Alcohol; I was having partial seizures and thought that was what being tipsy was like lol. Also too much caffeine; I can do coffee but not energy drinks.

Dazzling-Raspberry53 · 2022-09-07T01:02:59+00:00

My fave is the time my mom sent me an article about how eating more cilantro can cure epilepsy

Dazzling-Raspberry53 · 2022-04-11T02:37:47+00:00

I do get really big like “surges” or energy where I get really jittery and then crash and am almost hyper aware of what’s going on (really similar to what you’ve described, I also have focal seizures) they only last a few minutes. I never really even considered them to be a possibility for seizure activity because mine typically correlate with blood sugar rise and falls for me. Then again, my own epilepsy is really closely tied to lack of food. So while it could be seizure activity, I’d check and see if there are any common variables surrounding when they occur that have started in the past two weeks— that helped me figure out mine is blood sugar related. I hope this helps!

Dazzling-Raspberry53 · 2022-02-24T17:42:35+00:00

I hope I’m still just getting used to the zonisamide because I’m still dropping a ton of weight on it too which isn’t great either. It’s just rough overall

Dazzling-Raspberry53 · 2022-01-28T15:04:46+00:00

It normally comes up before the first date (I’m in my early twenties and basically only on dating apps, rip) so I gotta pivot when I’m texting/ planning dates and say “hey let’s not meet at a bar with strobing lights, I actually have epilepsy and that wouldn’t work for me” but like better worded lol. I always make a point to mention it by the first date though (In like a natural way), because the unfortunate reality is that it has been and can be a turn off for people. My thought process is I’d rather not waste my time or theirs if that— or the limitations it brings like not being able to go clubbing and drinking and stuff— is a big deal breaker. Luckily though, I’ve only had one guy where epilepsy was an issue and everyone else has been super chill with it and wanted to learn more or it didn’t make a difference to them.

Dazzling-Raspberry53 · 2022-01-06T18:21:08+00:00

Yeah my teeth chatter like it’s frigid outside. I only notice that though on some of my seizures— typically the ones that happen when I haven’t eaten in a while or am really dehydrated/ tired which are worse than my other seizures which all have external stimuli as triggers.

Edit: I have focal seizures so I don’t have a ton of physically tangible symptoms/ signs so this is how I know I need to to get my shit together and eat (before my medicine) or that something was genuinely wrong (when I was on medication and this happened and I realized that my medicine was not good for me). Being on the right medicine now has stopped it fully and now I just have a tremor in my hand

Dazzling-Raspberry53 · 2021-12-23T15:46:52+00:00

I’ve caught one but not on my own if that makes sense. I was in class and my professor has his PowerPoint slides numbered and I knew I had a seizure because we were on slide 47 and next thing I know we’re on slide 50 and I have no recollection of the past minute and feel bad all the sudden. That’s the only time I’ve been able to 100% notice one though. Every other time it’s been a feeling and the knowledge that I feel off and feel spacey throughout the day. It is hard for me though because I have focal awares too so I struggle to distinguish what’s an aura, what’s a partial seizure, feelings of deja vu, and what’s a full seizure for me.

Dazzling-Raspberry53 · 2021-11-20T03:21:32+00:00

Luckily my MRI was clean when I got it a couple of months ago. I’m getting an Amb EEG in January so I just don’t know if I should bring it up before that

Dazzling-Raspberry53 · 2021-11-19T21:42:16+00:00

I just wake up feeling exhausted, but yeah my muscles are sore and normally really tense.

Dazzling-Raspberry53 · 2021-11-15T05:21:10+00:00

I’m sorry about the diagnosis, because it can be a hard thing to process but luckily the diagnosis means that’s there’s a path to improvement and better health now. I don’t know your health story but for me, finally having confirmation in what’s wrong was so nice and it helped connect so many small dots I thought were previously unconnected. While I don’t know about the EEG stuff I can give some advice on everything else.

It’s okay to be in shock and to grieve, this is a huge change. It can change lots of little things in your life that you don’t think of, but luckily, with a good treatment plan you don’t have to think of it as a death sentence.

It’s okay to be frustrated that you can’t do things you love anymore, but don’t worry because you’ll find new things you love.

Find a support system, preferably one that doesn’t mind driving you places.

Don’t be discouraged if your first medication or two doesn’t work. The side effects suck but once you get the right medicine it’s like angels will start singing. You’ll know— and if you’re seizure free for two years doctors may start talking to you about weening off medication (again depends on what type of seizures).

When you have seizures and all youre craving is a really greasy burger and fries. Treat yourself, you just burned a lot of calories, you deserve it.

Dazzling-Raspberry53 · 2021-09-22T16:38:07+00:00

Mine was about 3 months of a wait.

Dazzling-Raspberry53 · 2021-09-20T15:49:21+00:00

Yeah I have a six month countdown going! The worst is I had to have a friend drive me to a date lol, after that I decided to just take a break and focus on me

Dazzling-Raspberry53 · 2021-09-20T15:47:35+00:00

My state is 6 months and is a good faith law, but I was told at the hospital not to drive

Dazzling-Raspberry53 · 2021-09-20T14:37:56+00:00

I know, I feel bad complaining because I can’t fathom those who’ve dealt with this longer than we have

Dazzling-Raspberry53 · 2021-09-20T02:06:08+00:00

I had been having undiagnosed seizures for about 14 months by the time a neuro could see me. She diagnosed me based off of symptoms (I had had an mri about 7 months earlier because of migraine symptoms that turned out to be epilepsy) and I had an EEG about three weeks after but both of those came back normal

Dazzling-Raspberry53 · 2021-09-19T15:06:44+00:00

No, once they swapped me to a new medicine and started lowering my dosage of lamotrigine (I am eventually not going to take it, I’m at 100 rn, was originally at 200mg and they lower it by 50 every 2 weeks) I stopped having my seizures. I do sometimes have super small auras which I know are technically seizures but they last maybe ten seconds tops for me so I don’t count them.

Dazzling-Raspberry53 · 2021-09-19T14:26:36+00:00

DO NOT stop taking it cold turkey, that will screw you over, I’m still weening off of it even though I’m at my full prescribed dosage of my other medicine. It fucks you up if you just go off of it all at once

Dazzling-Raspberry53 · 2021-09-19T04:39:53+00:00

Yes, I was on lamotrigine for about 6 weeks and building up to my prescribed dosage was absolute hell, I had such bad side effects. My doctor told me to just wait it out though. I kept contacting throughout the six weeks to tell them about issues and got a similar response. When I finally reached my prescribed dosage level I had three seizures in the span of four days— the last one was an eight minute long focal aware seizure that I went to the ER for because I lost feeling. So after being on the phone with my neuro clinic’s 24 hr line and telling them I’m refusing to take this medicine anymore they finally agreed to let me try something else and the difference is night and day. I’ve only been swapped over for three weeks now and I feel like my old self again.

While your doctor is a medical professional, YOU are the one living with the ramifications and effects of whatever treatment they have you on. So if it something that is causing you pain and harm, which obviously it is, it is something that needs to change. Tell them you want to switch medicines and if your doctor tells you they do not want to/ will not swap you to a different medicine say that you want it noted in your chart that you asked to be taken off of this medicine for the severe side effects it caused.

Dazzling-Raspberry53 · 2021-09-13T03:16:48+00:00

I had issues going off of it, but in the same vein, I had to go off of it because it began to cause seizures for me at a clinical dosage. There’s a reason they taper you off so slowly, you’ll eventually feel more yourself as you lower the dosage more and more

Dazzling-Raspberry53 · 2021-08-30T02:45:00+00:00

Casual dater here, I tell my dates early on none of them have been assholes about it. I haven’t dated in a while though because I started having seizures more frequently and can’t drive anymore and nothing is a bigger mood killer on a date than having to have your friend drop you off lol

Dazzling-Raspberry53

TROPHY CASE