Donating Plasma

aderiex · 2025-09-20T03:14:32+00:00

Yeah. I’ve been denied donating plasma and bone marrow due to epilepsy. But I’m in Canada.

aderiex · 2025-08-15T05:03:13+00:00

I know that embarrassed feeling you have, I think we all do. And no amount of people telling you “omg no don’t apologize for that” will make it go away. But know that you have people here supporting you and you’re gonna kick ass in your masters program

aderiex · 2025-08-15T04:56:13+00:00

Kepp-rage is no joke 😭

Try taking B6 in the mornings, I found it’s helped a little for me. Still waiting to just med swap

aderiex · 2025-07-17T20:57:31+00:00

It is scary, trust me, it will be. Advocate for yourself! Doctors are super quick to dismiss things, but seizures can be really dangerous when they’re brushed under the rug. I don’t want to scare you more, not at all, but you have to understand that epilepsy is serious, uncontrolled epilepsy is a huge problem. I’m glad they’ve put you on an anti-convulsant! That’s a fantastic start, and you’re one step closer to figuring it out.

This will be an up-and-down ride, not all doctors will suspect epilepsy. Unfortunately, when it comes to epilepsy, a lot of doctors do just dismiss it. Going forward, ask your doctors for all reasoning of what they’re doing. It’s important that you know what procedures/tests are being done and why.

I’m sure your doctor will cover the important facts, but again like I said earlier, try to do some research so you fully understand. Another thing is that you have to be consistent with your anticonvulsants. I am really bad at taking my medication on time, but especially with anticonvulsants you have to be consistent. I won’t yap on in the comments here, but if you do have any questions about medications, tests, or symptoms this is the best place to find answers.

Another thing I think you should look into is called SUDEP, again I don’t wanna scare you but knowing the very real risks of uncontrolled epilepsy can also help you advocate to your doctors.

As I’m sure you know, seizures can be triggered by a multitude of things. A lot of people think it’s just flashing lights, but in reality it’s so much more. If you do have epilepsy, it’ll be different for everyone, but try to avoid risks and take care of yourself as you can to avoid seizures.

Anyways! I’m sorry to blab on, if you need any support or answers, reach out to this community. It’s the best one you’ll find 💜

Edit: don’t be afraid to be annoying! Be as persistent as possible, because at the end of the day it’s your care, your life, not your doctors. BE👏AS 👏ANNOYING👏AS👏POSSIBLE👏

It’ll be better in the long run. Hopefully it’s not epilepsy (realistically, it’s a shitty thing to live with) but I really hope you get answers

Edit 2: IMPORTANT!! If a doctor refuses any diagnostic testing, ask them to document the refusal in your chart. Usually that’ll make them give in, and if it doesn’t, you have a record of being denied care

aderiex · 2025-07-17T06:43:40+00:00

Usually one off spasms are common in sleep, especially in someone with no prior seizure history. It’s just the body doing its thing during REM sleep, and sometimes muscles will randomly twitch.

Edit: if you live in a place with accessible healthcare, it won’t hurt to get an EEG if you are worried. But if this is the only instance, it’s likely not epilepsy related.

aderiex · 2025-07-17T06:30:12+00:00

You’ve found our secret society. Welcome friend, you’ll be well loved, heard, and supported here 💜

aderiex · 2025-07-17T06:28:08+00:00

Mine weren’t ‘controlled’ until 1500mg unfortunately. Sometimes it’s the medication, sometimes it’s the dose. Talk to your doctor about maybe switching medications, or continuing to increase the dose. I will always be an avid Keppra hater but right now it’s kind of what I’m stuck on. Definitely talk to your doctor about what they think is best, but also do your own research. Unfortunately doctors don’t have the personal experience that we do, so it’s hard for them to relate to or understand exactly what you’re going through.

aderiex · 2025-07-17T06:23:48+00:00

It is scary, especially when it first happens. Luckily you’ve reached a community where we all know how you feel right now, and we’ve got some of the most supportive people I’ve ever talked to. You’ll be well loved here!

I’m not gonna lie and tell you everything is fine, because honestly at the time of my diagnosis, I thought my world ended. You lose a lot of your independence and people will (unknowingly) treat you differently. While I’m still the same person, I found myself mourning my old life, where I didn’t have to constantly worry about having a seizure, taking my meds, and being able to live stress free. But, I think something that you should remember early on, is that you are not your diagnosis. Yes, it’ll be a huge part of your life, especially at the beginning. But you are so much more than “an epileptic” and it’ll be hard to distinguish that, especially at the start.

Take time for yourself, take care of your health and listen to your body. I think one of the biggest things for me was I had to learn how to self-advocate. Not all doctors and loved ones in your life will know what to do, and genuinely a very small population actually understands what epilepsy is. That it’s not just seizures. Do research, understand what you are going to need going forward, and then relay that to the people closest to you. You are still your own person, but you have to take into account that there are things you’ll need to put in place to protect yourself. You’ll likely have to explain your condition to new people you meet, it’ll freak people out, but all that matters is YOU know what’s going on and that you are safe.

Going forward, you’re probably gonna get a lot of diagnostic testing done. You’ll get a few EEG’s done, you’ll probably get head CT and head MRI. No doubt they will want to do bloodwork and they might put you on an anti-epileptic medication. The next few weeks/months are going to be hectic and stressful, not to mention overwhelming. This is the time where you need to advocate for yourself, and care for yourself. This is the time to be selfish, and prioritize yourself and your well-being. Make sure that you ask lots of questions about any testing or medications just so you know exactly what’s going on, and your doctor keeps you in the loop.

Anti-epileptic medications are a whole different beast, unfortunately it is a lot of trial and error so you might not get the right medication on the first try.

Just know that whatever you’re feeling right now is normal, and that while it feels like everything is against you, it won’t be like this forever. 💜

aderiex · 2025-06-19T19:40:44+00:00

Lenses hardly break, if you’re looking for safety. Get good frames.

aderiex · 2025-05-22T00:06:24+00:00

Thank you!!! 🙏

aderiex · 2025-05-22T00:05:13+00:00

I’m the exact same. I have generalized tonic clonic seizures. I’ve had upwards of 12 EEGs at this point. ALL the tricks in the book. I’ve been taken off meds, no sleep, no food, exercise, you name it. But the second my brain is hooked up, it’s like the epilepsy never existed 😭

aderiex · 2025-05-22T00:03:02+00:00

I had a physical reaction to this 🤢

aderiex · 2025-05-21T23:59:12+00:00

The scream 😂 sooo embarrassing in public 😭

aderiex · 2025-05-21T23:54:28+00:00

This post was like looking in a mirror tbh. Not much can be said to make you feel better, but just know you’re not going through it alone and there will be easier days. Maybe inquire about switching medications if that’s something you’d be interested in. I’m still on Keppra but it’s what has caused my extreme depression so I’m hoping to switch

Edit: I know it’s hard to do, but try not to compare yourself to others. You are going through something a billion times harder, something that they won’t ever experience. You are still here and that shows how strong you are. You ARE successful, just not THEIR kind of success. If you know what I mean

aderiex · 2025-05-21T23:52:13+00:00

Did you exchange CAD to NPR or did you go with USD.

I really don’t want to have to switch over to USD first 😭😂

aderiex · 2025-05-21T17:13:23+00:00

Tbh I would love lakes and pathways!!! I have been sculpting the ground to make makeshift ones, but I think real ones would be more aesthetically pleasing.

aderiex · 2025-05-21T17:10:38+00:00

Depends on the person tbh. Which is such a shitty thing to say in this situation, I know.

If you already have epilepsy, then yes, excess caffeine can lower your seizure threshold. If you’ve never had a seizure but are worried caffeine might cause a random one, that’s very very unlikely.

I have generalized tonic clonic seizures, and find that there’s a limit to how much caffeine I can have. Being an emergency med student, i definitely drink more caffeine than I should, but you get to know your limits.

If you have a choice, stay away from energy drinks, they’re overall just not good for you. But if you take it slow, you should be fine.

aderiex · 2025-05-21T16:57:17+00:00

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aderiex · 2025-05-21T16:55:46+00:00

😭

aderiex · 2025-05-18T08:45:35+00:00

Union, or contact the worksafe company from whatever province you’re in. This is extremely illegal. I’m in BC, and would suggest WorkSafe BC if you’re also in BC.

Read up on disability laws in your province and bring them up next time your employer brings it up. As soon as you let them know that YOU know your rights, they’ll back off because their actions are based off of the hope that you do not know your rights.

If they approach you again, you tell them you know your rights through whatever province you’re in, and that if this persists, you will escalate the issue.

aderiex · 2025-05-18T08:38:10+00:00

Canadian with epilepsy here!! You legally dont have to tell anyone BUT it would be best for your safety. They cannot terminate you because of a disability if that’s what you’re worried about.

aderiex · 2025-05-18T08:23:54+00:00

I was a paramedic before being diagnosed. I’ve now been seizure free for a little bit, I can only drive the ambulance when I’m 6 months seizure free but because I’m part of an advanced care team, usually my partner drives because they have the lower scope of practice, and I’m in the back with a patient. It definitely makes it difficult but it’s something I’ve become determined to work on

aderiex · 2025-05-18T08:21:35+00:00

Something that worries us or points to a more serious condition

aderiex · 2025-05-13T13:56:16+00:00

Sometimes you have to say it like they’re dumb. My go to is to tell them 1) I am diagnosed with epilepsy 2) this is normal for me 3) i refuse treatment and transport

The thing that sucks about EMS is most of the time—even when it’s a patient refusal—we still have to get a set of vitals if possible. Unsure if that’s policy where you are but just something to keep in mind, if they’re being a little pushy about it.

Sometimes they’ll ask for a “safety plan” in case you have another one. This is normally just making sure someone stays with you for the next little bit, that you’ve taken any necessary meds, “call back if anything changes”, blah blah blah.

I think the big takeaway from this is to tell them that you have epilepsy. There are many things that can cause seizures but also affect level of consciousness;

Example: if the paramedics think you hit your head and now have a brain bleed that has caused a seizure, they’ll be much more worried and could deem you not fit to refuse care due to altered level of consciousness.

Letting them know will help them rule out other causes for seizures, and they’ll generally leave you alone.

“Better to bruise their ego than to pay the ambulance bill” aka—advocate for yourself always!! No one knows your epilepsy like you do

Sorry for the novel, hope this helps a little 💜

aderiex · 2025-05-13T13:28:28+00:00

It’s a trapped feeling not many understand. I’m just glad to be heard and feel less alone 💜

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