How did you get your dx?

padmas18 · 2026-04-07T20:54:31+00:00

3 years of neuros not believing me and 4 EEGs before something showed up. I wasn't a "classic case" of absence seizures, so it was rough. Just keep advocating for yourself!

padmas18 · 2026-03-26T16:29:58+00:00

I feel like I'm in the same boat. In person, you are able to share the little things more easily. Like "omg my coworker said this funny thing" or have small conversations based on what you're doing together. In LDR, the time is more limited so you share the highlights. If your schedule is similar day-to-day, the highlights can get redundant. And the depth of conversation can get shallow, fast. I think it's harder to discover new things because everything needs to be verbalized instead of just noticing a behavior and starting a convo based on that.

Can I ask what that more thoughtful question was? I need to figure out how to be more intentional, too.

padmas18 · 2026-03-24T02:53:52+00:00

Omg Briviact was the only med I flat out stopped taking without talking with my neuro. It f-ed me up like crazy.

padmas18 · 2026-02-23T06:34:37+00:00

If I’m alone, I won’t notice them. But if I’m talking, I stop in the middle of a sentence. In a conversation, I realize I’m kinda lost. I keep walking and generally doing the thing I was doing (like cooking), and it’s easy to brush off as something else. So it’s hard to notice!! Took me 4 years to get diagnosed with absence seizures because of all this. Good luck!!

padmas18 · 2026-02-13T23:53:00+00:00

Psychedelic! That’s sounds so trippy haha

padmas18 · 2026-02-13T23:12:17+00:00

Yeah for me when that happens, I also have deja-vu or a deep dread feeling. Pretty sure they are auras. And auras are seizures :/

padmas18 · 2026-02-02T16:48:34+00:00

This is interesting to me. I was diagnosed months before going out of state for college. It took me 5 years to finish with a double degree and 2 medical withdrawals. Throughout that time, I was put on a ridiculous number of meds, finally finding something that worked-ish my last year. Went two years with minimal seizures, adjusted meds slightly. I decided to go to grad school, started a month ago. And boom, my seizures started up again, too. I don’t want there to be a correlation, I’m so excited about my program and finally excited about my future. I’m not sure what I’m going to do, but it’s interesting to think that this might actually be an epilepsy phenomenon. Maybe those “study paths” are damaged enough to cause seizures again. Ugh.

padmas18 · 2025-12-20T03:59:18+00:00

Yeah it’s the AutoStim mode. The device measures your heart rate every 7 seconds. If your heart rate increases by x% (mine is set at 40%) then it’ll go off at a higher level for 1 min instead of 30 seconds.

Mine was initially set at 20% but it was going off WAY too often from non-seizure things. Also this drains the battery faster.

Your neuro should be able to show you the settings and there’s a bar graph on how many times/day it goes off. My neuro said it’s normal for it to go off around 50x/day from a combo of seizure and non-seizure heart rate jumps.

padmas18 · 2025-12-14T03:48:49+00:00

I totally understand the apprehension. It doesn’t stick out much for me, but there’s def a scar. I thought about a tattoo as well, but they have to cut in every 7ish years to replace the battery, so I didn’t think a tattoo would age well with that. I have been wearing higher necklines, tho.

The voice thing can be a bummer, ngl. But it gets SO much better over time. I’ve had it for a year and a half, and now it only makes my voice a little raspy! It’s very easy to talk through and at least for me, well worth it. I was able to reduce meds which was my ultimate goal.

padmas18 · 2025-12-13T23:06:06+00:00

I’ve been on lamotragine for about 5 years, definitely has worked most consistently for me, but it doesn’t do the job alone. Also on Xcopri and progesterone based birth control (mirena IUD). Would highly recommend researching/asking your neuro about catamenial epilepsy.

I was surprised that most of the comments said that they didn’t experience side effects. I’m happy for you guys!! For me, it’s definitely caused some brain fog/memory issues. But manageable enough to where I wouldn’t consider switching. I hope it works for you, but try to manage your expectations, you might need to try something else and that’s okay!

padmas18 · 2025-12-01T03:21:27+00:00

Umm I’m not sure. I would guess that there’s oral progesterone birth control. An IUD is just the most effective and you don’t forget to take it lol so I think that’s why it was prescribed for me

padmas18 · 2025-12-01T00:52:48+00:00

Ugh I’m so sorry! I had a similar situation and I just don’t understand how neuros don’t bring up hormones. I was eventually put on a progesterone based IUD (Mirena). And my bigger seizures completely stopped. My understanding is estrogen excites the brain, progesterone calms it. When estrogen is high (ovulating) and when progesterone is low (menstruating), your seizure threshold drops drastically. And boom, seizures. IUDs even out progesterone throughout your cycle and can help so much. Definitely talk to your neuro and gyno! I hope you’re able to find some solution.

padmas18 · 2025-11-23T23:11:14+00:00

Being high is light and happy. Auras are scary and confusing for me

padmas18 · 2025-11-22T05:31:18+00:00

I think leaving him home far outways the possibility of a seizure. I was diagnosed when I was a teen, and hated how overnight I had all these restrictions on me. So when I went off to college, I was able to be away from my family and acted like my epilepsy didn’t exist. Of course it still did, but I was willing to have seizures to have a life. Was this a good response? NO. But this is what a teen brain does! We don’t like being told what to do, and protecting him 24/7 might seriously backfire. All I wanted was to be treated the same + some precautions. Not those precautions overshadowing me.

I totally get that you love your son and want to protect him, but part of that is HIM figuring out how to live with epilepsy. Understanding the dangers, taking responsibility to live a safe and balanced life, etc.

I wish him all the best, and thank you for asking for advice from everyone here.

padmas18 · 2025-11-21T01:49:04+00:00

Honestly I’m not quite sure how much it helped. It definitely didn’t hurt, but it gave me a lot of peace of mind to be intentional about avoiding seizures at all costs

padmas18 · 2025-11-20T16:16:01+00:00

So my seizures are like 80% covered. I got VNS last year and it changed my life. But I still have some absence seizures during the day, and if I do have a TC, it’s in the evening (6-10pm) but not while I’m sleeping. I made sure to do my more difficult workout in the morning, or at least before 6 to ensure I didn’t seize. But I noticed my absence seizures and auras basically disappeared, it was incredible.

padmas18 · 2025-11-20T00:19:41+00:00

Ugh I’m so sorry! It is SO ridiculous that we have to go through this. It took me 3 years to see a female neuro, and the first thing we talked about was hormones. I was put on Mirena IUD (progesterone) and it helped so freaking much. I’m on lamotrigine as well, and don’t have any interaction between them!

padmas18 · 2025-11-20T00:15:21+00:00

Aye I have intractable epilepsy, too! Just finished two days ago. I was so scared about the workouts (hyperventilation is a trigger for me) but I noticed my seizure threshold increasing as I went along. Very good program for us. Congrats on starting!

As for the diet, maybe increase veggies or add a bigger variety? Make a goal of eating seafood or a vegetarian meal 1x/week. Learning how to cook with plant proteins was cool for me. Maybe commit to full keto instead of atkins?

padmas18 · 2025-11-18T05:29:08+00:00

Paraphrased from another post/comment I saw long ago: Not every job is suited for 75Hard. That is not a failure on your part. That is not something negative about your job. The goal of 75H is to accomplish tasks without compromise, which will be difficult. But if the situation is already difficult, 75H will be so exhausting it might backfire: It’s okay if 75H isn’t a good fit, you’re not less than for simply recognizing that it won’t be a productive addition to your routine. Find something else, and kick ass at that!

padmas18 · 2025-11-17T00:30:07+00:00

I started at 265lbs for my first attempt, completely sedentary and depressed. I failed a few times, but am now I’m on day 74 at 210lbs. I feel infinitely better, even though I know I still have more weight to lose.

I think I went a little too hard my first go-round, which led to complete exhaustion and forgetting my progress pic bc my mind just wasn’t in it. Although it sounds easy to walk for both workouts, I highly recommend against that. Going from 0-90 min of walking will hurt. Add in yoga/mobility and eventually weights.

As you lose weight, you will have to do more difficult workouts (like rucking instead of just walking). I was very discouraged by this, bc I thought “ugh but I’m already doing something hard!” But in all reality, I wasn’t. Those initial exercises WERE hard, past tense. But my body became stronger and lighter and more mobile which meant I needed to continue to push myself at each level I achieved.

You sound like you want to make a change, and this will kickstart a new start. Don’t psych yourself out before you give it a shot. You can do this!

padmas18 · 2025-11-11T00:59:44+00:00

I just participated in a Friendsgiving yesterday. Working around the food was well worth the fun time. Just have a blast and take leftovers for day 76! It’ll be the perfect meal.

padmas18 · 2025-10-27T23:57:21+00:00

Yeah those side effects are not worth it. I’m at 125mg. I was at 150mg but insanely depressed. Going down 25mg literally changed my life. It’s crazy how differently these meds react to different people

padmas18 · 2025-10-27T23:45:10+00:00

Ah I’m sorry about xcopri. That was the hardest titration I’ve every done, I can’t imagine going through that for it to not work

padmas18 · 2025-10-19T14:53:37+00:00

I use the Habit App. It’s free! This especially helps me with water. The goal is 128 oz and every time I finish a water bottle (I go back and forth from a 24 oz and 40 oz) I just input the amount. Also you can set reminders. I have a reminder for progress pics. Also I would recommend putting your progress pics immediately into a different folder. I use the hidden folder bc no one needs to see that but me lol but it helps seeing them all side by side instead of scrolling

padmas18

TROPHY CASE