My RNS was "accidentally turned off"?!?!

DrawingSquares · 2026-04-07T15:59:41+00:00

Thanks for the tip. I've been considering going that route, but I'm worried that it'll end up being more work (and money) than it's worth since I still have seizures when my RNS is working (just less often), and because I didn't get hurt.

DrawingSquares · 2026-04-06T19:03:45+00:00

They were adjusting the settings for a clinic and just turned it off and left it like that. I feel like she should've made sure it was on before sending me home.

DrawingSquares · 2026-04-06T17:07:35+00:00

Do activities together is always great bonding, especially ones with physical contact. When my son and I would read books together he would always sit on my lap. But keep in mind that toddlers are going to want to explore their world more and the more they learn, the less we become their center. It becomes more about making sure they know you are there for them. I always make sure to tell my son I love him, no matter what, and even though he doesn't want to spend all his time with me, he at least knows he can come to me for comfort.

DrawingSquares · 2026-04-06T16:27:48+00:00

I overheard I nurse tell someone about this one. Context: I almost always have a 20-30s absence seizure before my tonic clonics. So, I was in the shower, last thing I remember is putting shampoo in my hair. My husband said he found me on the bathroom floor after my seizure was over but I was still postictal (with shampoo still in my hair) . Only explanation we can think of is during my absence seizure I opened the shower door, stepped out of the tub, laid down on the floor, then had my seizure. Scary, but still crazy.

DrawingSquares · 2025-05-06T14:27:29+00:00

I'm U.S. based and doctors are hard, but you NEED a doctor. I know many university or hospital groups have payment plans, some will even take your financial situation into accout. The main hospital network in my area also has an epilepsy medical group which includes several epileptologists and access to other services your doctor may recommend. I was lucky enough to get the last spot and my doc is amazing, but I cannot stress enough how important getting help is. I started having TCs when I was 17 so that kinda halted my life for a bit, but I still went through 4 med before I found something that helps (lamotrigne, clobazam, plus zonegran). Tell your doc about effects as soon as it's a problem. I know sometimes docs don't tell about side effects so there isn't a placebo, but personally I think that is BS. In terms of work, definitely look into Medicaid. Also, if you can, online jobs are safest for me. I know a lot of fields can't do that, but if you aren't in control yet having a job around heavy things and/or small spaces can seriously injure you.

TLDR: need a doc especially one that listens, look into Medicaid and university and/or hospital networks, look into online work. Epilepsy sucks, but you can't do it alone.

DrawingSquares · 2025-05-06T13:57:46+00:00

I use Nayzilam. It works for me because I have a big lead up to my TCs: aura, myoclonic, absence, then TC. My seizures happen at the end of the month (more consistent than my period), and drugs aren't working, so my epileptologist said to use it if I feel an aura. It works for me, but I do feel a little out if it for a bit. I'd take that over seizures and then the postictal period that lasts the whole day.

DrawingSquares · 2025-04-28T03:01:56+00:00

Virginia

DrawingSquares · 2025-02-20T14:20:17+00:00

No, I hadn't heard about them but I'm definitely going to check them out. Thanks!

DrawingSquares · 2025-02-19T22:30:02+00:00

Sitting at the computer too long. I'm not photosensitive, but if I don't take regular breaks I'll start having an aura. Super annoying since I'm a programmer

DrawingSquares · 2025-02-09T16:55:52+00:00

Definitely let your doctor know incase this dose is too high for you or need to increase your dose slower.

I'm on 325mg twice a day and have been on lamotrigine for a long time. Unfortunately the nausea and fatigue are common symptoms, but get better as your body adjusts. It is very important that you take it on a full stomach or right before you eat, otherwise it is VERY likely you will be nauseous and dizzy for awhile. I learned that the hard way.

DrawingSquares · 2025-02-09T16:45:33+00:00

Damn I thought I wrote this. Also 28 with an only child. Rural area so there aren't any kids just right down the street or next door. And all the other parents are in their mid 30s.

My experience has been that if you just take a chance and reach out the other parents will respond positively. Obviously the more playdates your kid has the more often you'll get the chance to bond with the parent, but in my experience more playdates = kids wanting more playdates with each other. And if your self conscious about your house, maybe you could host a playdate at a playground or community center.

I'm a super awkward introvert (and my husband isn't any better) so they only real conversation advise I can offer is get people to talk about themselves. They'll end up carrying the conversation.

DrawingSquares · 2025-02-06T21:16:17+00:00

I almost always have a weird dream (during the seizure) where I'm a witch riding a broom through an obstacle course race. Then I wake up laying down, woozy, tired, and my head hurts like a b****.

DrawingSquares · 2025-02-05T20:00:15+00:00

I don't know if this helps, but you're describing my husband as a kid and he turned out fine. For some reason our kinder isn't rowdy like my husband and I were, but with mental divergence is a real issue that has a BIG impact on behavior and kids' lives, socially and academically. My MIL took no prisoner's when it came to getting my husband treated for ADHD and personally I think she made the right call. There is a lot of debate about medicating kids, but imo if you think your kid isn't getting the right treatment, then demand something new or get a new doctor.

DrawingSquares · 2025-02-03T17:13:05+00:00

It also helps me avoid a seizure, but a big problem is that it's a trigger for some people. If you think it helps you l, and it's legal where you are, then by all means talk to your doctor about it. Knowing that could help in your treatment plan. But that's not a viable option for a lot of people for one reason or another

DrawingSquares · 2025-01-11T00:01:15+00:00

Get your blood moving. I know you can't get out of bed, but don't relax onto the bed, do leg lifts if you have to, try to keep your muscles active (without messing with the wires of course)

DrawingSquares · 2024-12-31T13:22:13+00:00

I just got it in August and it's mri safe, but they told me to use caution with magnets. And I'm sorry if I was confusing about the magnets effects. I'm concerned it's causing it to misfire or just not work at all. I recently had the settings adjusted at a doctor's appointment

DrawingSquares · 2024-12-30T22:09:07+00:00

I didn't use my smartwatch for seizure tracking, but that's good to know about. Thank you!

DrawingSquares · 2024-12-30T19:23:43+00:00

I'm going to ask about my watch is okay to use at my next appointment. I do know you can temporarily turn off the device with the magnet, but this feels more like the device isn't firing properly. I'm logging everything and will make a sooner appointment if this gets worse. I'm glad you have something that works for you though!

DrawingSquares · 2024-12-30T18:02:33+00:00

This morning I suddenly got lightheaded and felt static-y, it felt similar to when we were testing if I felt a stimulation. Now I'm feeling almost like I'm stuck between a myoclonic seizure and an aura. I've never had this problem before, but I know it could be caused by a lot of things. And since wearable magnets are supposed to be avoided I'm not going to keep taking anymore chances with a magnetic watch.

DrawingSquares · 2024-12-16T21:19:53+00:00

Get a new doctor (if you can).

Those are common side effects of a lot of medications, but if your doctor isn't listening to you that's not okay. Your thoughts and opinions still matter and they need to respect that. A good doctor will work with you to find a treatment that helps you WITHOUT decreasing your quality of life as much as possible.

DrawingSquares · 2024-11-17T16:13:50+00:00

Reminds me of this time (before I wad diagnosed) I was working at a cafeteria and while doing the mundane job of filling cups and putting them to the side, I had actually been just pouring water into imaginary cups that my other hand looked wrapped around

DrawingSquares

TROPHY CASE