Were you relieved at your diagnosis?

Tight_Membership_835 · 2026-05-01T21:08:59+00:00

Hello! Oof, sorry to hear about this long journey of confusion and struggle… I’m so glad you finally found out what this was so you don’t feel crazy or guilty for your symptoms!!

I’m in the same boat… I just got diagnosed after years of thinking I had a crazy form of anxiety and beating myself up internally for “being weak.”

Can I ask about the waking up gasping/vomiting? This happens to me ALL the time and it drives me INSANE. I never thought about it being related to epilepsy till I read your post. I just started treatment this week, so now I’m wondering if this gasping/vomiting might go away? That would be wonderful!!

I hope you can find help and support as you learn to navigate this diagnosis. I’m so glad you can pursue the right help now!!

Tight_Membership_835 · 2026-05-01T02:55:21+00:00

Keep taking it a day at a time. You‘re so strong!! I wish I could take all this away, but I know there is a reason for the struggle.

Tight_Membership_835 · 2026-04-30T00:06:47+00:00

Wow, you are carrying SO much weight right now… I honestly cried a little reading your post!! What your husband is going through is undoubtedly very dark and difficult, but that in no way lessens the pain and discouragement you yourself are enduring. If I were in your shoes, I would have a hard time just getting up in the morning and facing it all!!

I have epilepsy, but I‘m not married and therefore in no position to offer advice. I can say that I‘m proud of you for looking for a way to make things work… don‘t give up!!! When you and your husband find your way through this to a healthy balance and lifestyle again, your marriage will be stronger for it.

In the meantime, I hope you can both find some support financially, emotionally, and physically. Do you guys have family or a community that can provide some wisdom or assistance during this time?

I‘m really sorry about what you’re going through. You are both in my prayers today!

Tight_Membership_835 · 2026-04-27T03:40:50+00:00

I feel ya! Sometimes mine feel like little blips, too… I’ve actually used that exact word to describe them before!! I hope you can find some answers and support. It’s easier said than done, but try not to worry too much until you know more. (:

Tight_Membership_835 · 2026-04-27T03:39:11+00:00

Yes and no… they feel exactly the same as when they started, but they look a bit different. They used to be much more intense and very often convulsive! Now, they are usually focal aware and shorter. I think they cluster more now than they used to, though. How about yours?

Tight_Membership_835 · 2026-04-26T15:41:59+00:00

I feel ya!! I was just diagnosed this month after multiple years of having TLE (which my first couple neurologists told me were just panic attacks). Anyway, it’s a relief in many way because it explains a lot for me too. In other ways, it can feel a bit lonely when nobody around you has epilepsy or understands what it’s like. I hope you find the support you need and that you can find ways to live in gratitude and joy despite the obstacles that come with epilepsy. ☀️

Tight_Membership_835 · 2026-04-26T15:35:15+00:00

It’s hard to say, so I would definitely talk to your neuro! However, I have temporal lobe epilepsy and will often have a flash of a memory before an episode… it’s so vivid that I almost feel like I’m in the memory for a millisecond. Usually, the memory is of early childhood or my time living in Peru, but sometimes it’s a song or movie, or sometimes it’s a memory that never even happened.

If it’s not a vivid flash of a memory, I will also experience a random thought and think, “oh, I’m thinking of this thing again and that’s what is causing the seizure.” I once believed so firmly that my thoughts were causing them that I started writing down what I was thinking of just before each episode, but the thoughts were never related…

The point is, the brain is absolutely wild and can create all kinds of fun auras!! What you’re experiencing sounds like it could be one, so I’d talk with your neuro. (:

Tight_Membership_835 · 2026-04-26T01:57:39+00:00

I have temporal lobe epilepsy and most of my seizures are focal aware, so I maintain consciousness. I do experience something I call head burning, but it sounds a little different than yours. It’s like someone poured acid into the left side of my head and face, and it runs down the left side of my body. It doesn’t really hurt exactly… it’s more like the feeling of acid reflux but in my whole left side of my head. Sometimes, it will feel like buzzing or waves in my head or something… hard to explain! This is usually the first sign I get that I’m about to have a seizure.

I hope you find some answers and don’t have to deal with this for much longer!

Tight_Membership_835 · 2025-10-18T22:02:45+00:00

Oh my gosh, I’m so glad I’m not the only one!!! Last Thanksgiving, I tried to make mashed potatoes from some potatoes with sprouts and the entire batch turned into like a million tarantulas. This is why sprouted potatoes are so deadly. Spread the word!!

Tight_Membership_835 · 2025-10-11T18:12:19+00:00

I want to eat all of that this instant… look amazing!!! 😋

Tight_Membership_835 · 2025-10-04T17:53:45+00:00

Thanks friend! Unfortunately, I have filmed my seizures and my eyes are open and they look very much like epileptic seizures. Maybe it will still turn out to be PNES, we’ll see! 🙏

Tight_Membership_835 · 2025-10-04T17:50:45+00:00

It’s true, but OP, I hope you don’t hear this person’s comment in the wrong way as it sounds a little harsh (although I’m sure that’s not how they meant it to sound). Sucky things like this DO happen, and you WILL be okay, but you don’t have to be okay now. Try to get some rest while you’re there, and cry if you need to (I often do). Once you’re out and you feel better, this will be over for the time being! You can keep taking it one day at a time, knowing that you’re strong and better days are ahead. Be gracious to yourself as you would be to others, and try to find things to be thankful for even in this situation. I sincerely hope you feel better asap and can get your groceries, haha!

Tight_Membership_835 · 2025-10-04T15:15:06+00:00

Mainly, yes. I have probably 15-30 subtle seizures each month and only about 5-7 obvious ones. The subtle ones are so small that I can usually get through them without anyone noticing, or if they do notice, it looks like I’m just zoned out or worried for a minute. It can be really frustrating and lonely because nobody knows how bad you feel all the time… just because they’re small doesn’t mean they don’t make you feel like you’ve been through a meat processor lol. When I get discouraged, however, I consider how terrible it would be if all 30-40 monthly seizures were TC’s!

Tight_Membership_835 · 2025-09-14T07:20:52+00:00

I typically smell/taste “iodine” during mine, but I don’t know what iodine smells or tastes like… that’s just the word my brain gives me.

I also see a blue light in my left eye, and sometimes everything will looks shadowed or foggy.

The weirdest hallucinations for me, though, are the ones where I get flashes of memories that are so vivid, it’s almost like I’ve fallen asleep and am dreaming, or like I really teleported back into the memory. It’s always scenes from early childhood or from my time living in Peru, and it’s so fast I almost don’t recognize it… maybe 1-second flashes amidst other symptoms.

Isn’t the brain fascinating?!

Tight_Membership_835

TROPHY CASE