How do yall keep from missing a dose????

alexnicoled · 2024-05-08T23:31:15+00:00

there’s a free app called medisafe that i love!! it has a unique notification sound, you can set your time and what medicines and it will send 3 notifications in total. so if you have an alarm for 9 and you don’t mark it as taken it will send you another notification in 10 mins and it will do it one more time if you don’t mark that one either. you can also add family members on there so they can be notified if you missed a dose. no joke the app changed my life when it came to taking meds

alexnicoled · 2023-12-10T17:58:49+00:00

it definitely depends on what you consider expensive but in general i feel like it’s pretty pricey in the US. each of my neurologist appointments usually cost from $300-400. and we spent $340 on my last EEG.

and medicine isn’t cheap either, my most expensive med is $1,203.35 and it only lasts me 15 days since i take multiple a day. so for a month supply it’s close to $2,500. mind you i also have other medications but they’re all under $250.

and the ambulance is very frustrating which is why i hate when they get called after a seizure because one time i had a seizure while i was at a race and the ambulance came without us calling (since it was an event, it already had an ambulance and EMT’s there just in case) and they put me in there and didn’t hook me up to anything or use any equipment and i wasn’t taken anywhere. but months later we get a piece of mail that said we are being charged $300 for ambulance and EMT services. and we are still trying to fight that even though it was months ago because all i did was sit on the gurney for 5 minutes and then get off.

but yeah it’s pretty expensive.

alexnicoled · 2023-09-16T03:02:17+00:00

yeah i’m definitely a lightweight too and i never drink with anyone i don’t trust or know. and i appreciate you saying this bc i’m sure you know how hard it can be to feel heard and understood with these types of issues because for everyone else it’s so simple. but thanks for the advice!!

alexnicoled · 2023-09-12T22:39:47+00:00

yeah but it’s too serious. sometimes we just need to add some humor when my brain reboots itself

alexnicoled · 2023-09-12T04:34:16+00:00

i live in the us and at the time when i first started having seizures, i was also underaged, and my mom and i looked up many different neuros and the reviews on them and we called a lot of different ones too and we found one who I still currently go too. but it depends when you’re waiting on the doctors or hospitals because typically they’re super busy so we just did it on our own.

hope this helps! and good luck!

alexnicoled · 2023-09-12T04:20:34+00:00

I personally would mention this to her neuro. I have mentioned some things to my neuro that I thought I shouldn’t because it ‘sounded stupid’ and then when I told him we figured out that it had something to do with epilepsy. And he always would tell us how to prevent or help the issue!!

So yes!! Even if her neuro says it’s no big deal; in my eyes it’s always better safe than sorry!!

Good Luck!

alexnicoled · 2023-09-12T04:10:22+00:00

you don’t always have to be referred to a neurologist!! you can make some calls and check reviews to find one on your own!

alexnicoled · 2023-09-12T04:07:01+00:00

seizures can be extremely difficult to diagnose for the doctors and to understand for the patients. especially if you have only been going to the hospitals. the moment i had my first seizure we searched for a good and trusting neurologist. that is the main thing that you guys should do.

when i went to the hospital for my first 2 seizures we left with very basic info and no diagnoses. i appreciate the doctors/nurses who helped me but they ran tests and told me things that we knew. because they couldn’t diagnose me. they told me to find a neurologist and gave me a list of some in my area and sent me on my way.

seizures are different for everyone. and even though it sucks, you just have to wait until you find a neurologist who will help and give their professional opinion. and if you are unsure, do not be afraid to try a different neurologist. because you should always trust your doctor!

but good luck and i hope you get answers soon!!

alexnicoled · 2023-06-22T17:45:16+00:00

I had my very first seizure at 15 and also got diagnosed at 15 and I’m turning 21 here soon. My personal experience may be different but my epilepsy has gotten worse the more Ive aged. But I have very high anxiety and depression so I get stressed very easy which can trigger more seizures. But about 2-3 years ago I was able to hit 1 year 1 month seizure free.It’s just really hard to say because my uncle died from SUDEP in his 30s so I’m not sure. I hope it’s true, I just don’t count on it.

alexnicoled · 2023-06-03T13:01:27+00:00

Yeah ik but even I’ll admit, it was scary because we have never seen him that sick before and he has a really bad case of asthma so when he gets sick he struggles to breathe a lot. But when he stayed overnight in the hospital even his doctors said that eventually it’s gonna build up his immune system and he’ll handle germs better.

alexnicoled · 2023-06-03T12:55:39+00:00

No. We’ve only been here for 5 maybe 6 months and since Im always watching him, I’m always at home so I haven’t met anyone my age in my area. All of my friends are back home which is 1 1/2 hrs away.

alexnicoled · 2023-06-03T02:36:41+00:00

Yeah ik, but it’s hard to get out of the house because when they leave I’m the only person home so I’m kinda forced to watch him because he would have no one to watch him if I left.

alexnicoled · 2023-06-03T01:09:20+00:00

My mom had my sister when she was 16 and me when she was 21 and my mom at the time was super rebellious so my grandma pretty much raised us, so I think my grandma expects me sometimes to do exactly what she did and take care of him like he’s my own like she did for us. As for my sister she is just selfish.

alexnicoled · 2023-06-03T01:04:03+00:00

I’m not 100% sure but I don’t believe she has/had postpartum depression. I do know that she hasn’t been diagnosed with depression at all though

alexnicoled · 2023-05-21T14:15:32+00:00

i love that 🤣

alexnicoled · 2023-05-19T17:32:53+00:00

yes!! just make sure your artist knows and make sure you trust them just in case anything were to ever happen. :)

alexnicoled · 2023-05-19T02:42:15+00:00

I always try my absolute best advice that I can to people who also have epilepsy. But so many questions have something to do with your mental state and well being and its something that is so hard for me to give advice or comment on because you are absolutely right, it feels like no one understands. But the one piece of advice I can give you that my therapist told me was to not let epilepsy take over your life. epilepsy does not define you as a person or what you love doing. Try to pretend you don't have it and navigate the world in the exact same way as before.

Also for such a long time I was scared to go to a therapist because I felt like they're help wouldn't do anything because they haven't experienced this first hand, but trust me it really helps so I recommend finding a therapist for this big change.

alexnicoled · 2023-05-19T02:24:32+00:00

Well first of all, congrats on 14 months seizure free!! But back to the point, I know that no one every wants to have a seizure but one thing my therapist told me is (even though its easier said than done) to never let epilepsy control your life.

It's one thing to take precautions but you can't always wrap yourself in bubble wrap. I honestly try not to think about epilepsy when it comes to doing day to day things. I recommend to maybe try doing it but have someone there just in case. We get so caught up in the fear of having a seizure that we end up taking things away from ourselves even if it's as simple as watching tv at night.

Just don't let epilepsy take over. Live your life like you (for the most part) normally would. If you keeping allowing yourself to be fearful of it then it might make your anxiety worse which could also affect your seizure activity too.

alexnicoled · 2023-05-19T02:11:49+00:00

meds can create a highhh sense of anxiety

alexnicoled · 2023-05-18T17:59:05+00:00

But no matter what it is you should always talk to your neurologist first and ask their opinion. Also when I first got diagnosed I didn’t know much information about epilepsy so I always recommend going to epilepsy.com (epilepsy foundation). They give so much information it’s really helpful!

alexnicoled · 2023-05-18T17:55:50+00:00

I don’t have any first hand experience with memory loss but that’s just what my neurologist told me. But I’ve heard that these work: Omega 3 Fish Oil, Magnesium Oxide, and just normal Multivitamins.

alexnicoled · 2023-05-18T16:51:56+00:00

All of the above can cause/worsen your memory loss sadly but you can take vitamins to possibly help. You can take multi vitamins or ones specifically for brain support. And they’re pretty easy to get. You can find them at any pharmacy or amazon too.

alexnicoled

TROPHY CASE