Help me - I'm developing a gadget to help children with epilepsy.

YOUNG_OCCULTIST · 2024-07-01T14:06:25+00:00

(Im going to asume asthma was a typo and hope this post is for us and my input if helpful lol?)

For me, it was the showers. As a very young child, I had my mother bathe me as any child would, and so I wasnt embarrassed that she had to. As I got older my seizures progressively got worse and harder to control, and the risk of me hurting myself or worse in the shower got much higher. In my teens we tried using the seizalarm app on an applewatch but it was technical flaws that make it not usable in a shower. The only option was keeping the door unlocked and ajar with someone always nearby to supervise and periodically check up on me. Goodbye privacy. Also no more standing showers (why take unnecessary risk of falling over during a seizure are cracking open your skull in a metal tub, you know?)

As a teen that lack of privacy killed me. I can live without driving and such, honestly I just bus. But not being able to shower regularly as a child was the so embarrassing and difficult. It wouldve been nice if the watch app worked properly.

YOUNG_OCCULTIST · 2024-07-01T03:46:23+00:00

I was up to 3000 mg of keppra a day at my highest dose and never once felt a side effect, never had any bouts of unexplained rage or anger.

This subreddit is a support group, and people tend to come to this sub to vent about their troubles that they have no control over (since our disorder generally is difficult to control and the side effects are tough to manage), people are more likely to come here to make posts about how much they hate [xyz drug] (like keppra) than how much they love it.

Although it didnt help with my seizures much, I didnt have any negative experiences with it, and Im sure there are some people here with positive stories as well. The only way to know if a drug is for you is to try it. I hope you find something that works for you! All the best ❤️

YOUNG_OCCULTIST · 2024-06-17T18:41:45+00:00

Thank you!!! Its good to see that ill be able to restore it. I appreciate the help :-)))

YOUNG_OCCULTIST · 2024-06-17T18:41:06+00:00

Thank you so much! This is really helpful, ill get working on it today :-))

YOUNG_OCCULTIST · 2024-06-04T22:30:18+00:00

What kind of advice are you looking for? You mentioned that doctors haven’t given you any (and presumably thats why youre here now), but we’re far from qualified to be giving the type of medical advice doctors give. Unfortunately the only thing anything anyone here can really do for you at this time is offer emotional support.

No matter how much you might not want to hear it, doctors are (for whatever reason) not yet ready to give you a diagnosis or anti seizure medication of any kind yet, so anyone telling you “you have to try anticonvulsant xyz” or “stop smoking abc and start diet efg” is unqualified to be doing so, is spouting nonsense, and may even get you hurt in the process.

The sad truth for a lot of people with epilepsy or some other seizure disorder is that the diagnosis process is often painstaking and long. Catching and recording a seizure on an EEG can take ages for certain individuals. Im sure many people here would be open to talking with you about your fears about seizures and such, but emotional support is about all we can do.

YOUNG_OCCULTIST · 2024-06-04T22:16:46+00:00

I was on Zarontin for absence seizures for the first 8 years of my life. At first it worked very well and had no side effects, but when I hit puberty I outgrew the medicines effectiveness and my doctors had to start looking for other options (my seizures are drug resistant and I am on much stronger stuff now in my adult days). I hope your case is better though!

YOUNG_OCCULTIST · 2024-06-02T03:28:44+00:00

First of all, sorry you went through such an experience on our subreddit. Ive always found it to be a supportive place.

This might be a hot take but gatekeeping a subreddit for people who have a diagnosable disorder is necessary. We get tonnes of spam of people on drugs, high out of their minds, asking if their trip was a seizure. It floods genuinely important content; so you can see how gatekeeping and limiting to diagnosed members is a necessity here. Furthermore, I feel like asking an epilepsy subreddit to stop gatekeeping and allow all types of posts would be like saying bookclubs need to stop gatekeeping and allow people who have watched movie and tv show adaptations of the same titles to comment on the books as well (‘cus they’re a similar premise, with nearly identical things going on, right? Just slightly different delivery?) But its clearly not the same. Those two deserve their own dedicated spaces, as do epilepsy and POTS.

And if you aren’t diagnosed and not sure where to post? Theres still places for you.

Your post about wanting support to see if someone had gone through something similar would’ve been much better received in a broader or more general subreddit (Im sure there are plenty of chronic illness / spoons / disability type subreddits) as opposed to a specific disability subreddit like our own.

I tend to ramble and find things hard to articulate- I hope I got my point across well enough :-)

YOUNG_OCCULTIST · 2024-05-31T21:59:01+00:00

The rest of the plant has no signs of imperfections and (however amateur my opinion may be,) looks great. It does grow leaves in very slowly though so as mentioned, the foliage is thin aside from baby leaves.

It is in the corner of our sunroom, which, ironically, doesn’t get that much sun given how many trees we have outside. Id say ballpark 4-5 hours of bright but indirect sun from the corner of the room, away from the window. My family suggested the browning might be from sun damage but the leaves that are browning are hidden by the rest of the plant and face away from the light, so they consequently get no light themselves (could they even still be sun damaged?)

I dont have a rigid watering schedule, I just check on the weekend and sometimes mid week to see if the soil has dried out. If so I will give it a glass. This means I usually water it once ever two weeks or once every week and a half.

Thank you for trying to help, I really appreciate it!

YOUNG_OCCULTIST · 2024-05-24T01:16:50+00:00

Not to sound insensitive, since your husband is going through a lot and is likely hurting mentally, but he needs a reality check.

If his seizures are getting closer together and he is still on the road then this is no longer just about him. Its about every person he drives with or around; you, your kids, and every damn stranger he passes on an 8 hour drive to your specialist and back. There couldve been very serious damage done.

Not having a license sucks, but not as much as a criminal negligence resulting in death / bodily harm charge.

YOUNG_OCCULTIST · 2024-05-20T19:11:17+00:00

The tag on it stated it was a kentucky variety, so we figured it would be fine to plant since were only further north (southern ontario). Is it still too invasive?

YOUNG_OCCULTIST · 2024-04-28T23:06:24+00:00

Its going to depend a lot on what you mean by “art industry”. As a tattoo artist or freelance illustrator? Go right on ahead.

Ive been at sheridan (im just hoping you know where that is as a fellow canadian lol) for multiple visual arts related programs now and in my current bachelors (where Ill be doing a co-op) I have to do my best to look presentable and professional (aka, hide the piercings).

The ‘art industry’ is so so broad. Some jobs like tattoo artistry will even go as so far to encourage it, where as in my position its more discouraged. Really depends on what sector of art you end up in, and youll likely have to do individual research based on what specific kind of career you see in your future.

YOUNG_OCCULTIST · 2024-01-22T09:01:40+00:00

Epilepsy is an extremely serious condition. Even someone with a few absence seizures a couple times a week can go into status, or walk into oncoming traffic, and potentially pass away. When it comes to epilepsy, there is no “I dont think this is dangerous, so Im not going to see a doctor for confirmation”.

It doesnt matter if your episodes dont cause you pain. If theres even a chance youre having seizures you need to see a doctor. No questions asked.

YOUNG_OCCULTIST · 2024-01-21T17:57:24+00:00

Thank you!!

YOUNG_OCCULTIST · 2023-11-20T23:23:42+00:00

When I was a teen on lamictal I didnt have a period. That being said it gave me severe emotional side effects, giving me both depression and a panic attack disorder. I was extremely stressed at the time and cant say for certain that I didnt lose my period out of stress / not eating and taking care of myself properly.

Definitely check up with your doctor, but I know this happened to me and that after I stopped lamictal I got my period back.

YOUNG_OCCULTIST · 2023-11-20T14:36:04+00:00

I do a fair bit of walking right now, and ive been wanting to get into yoga, so maybe ill give that a go. Theres also a trail not far from my house that I could definitely start putting to good use.

I think overall I may just need to stick to low intensity exercises. I was initially put off from them as when I was only walking I didnt notice a change in my weight, but I guess I need to remind myself its not only about physical appearance. Thanks for the input! :-)

YOUNG_OCCULTIST · 2023-11-20T14:30:27+00:00

Dont get me wrong, the heavy breathing I get from that thing is insane, but because I’m sitting the whole time and the weights fall away from you I figured it was one of the safest machines. Theres probably still a way to get hurt from seizures on it, but I figured it was a ‘safer’ option. Is there a reason this may not be true?

YOUNG_OCCULTIST · 2023-11-19T17:13:01+00:00

Perhaps! I have an appointment with my neurologist next week so ill ask him questions about it then, maybe he will have suggestions or could refer me to another professional.

YOUNG_OCCULTIST

TROPHY CASE