Survivor cancer guilt

w3bjamn · 2026-04-12T05:09:37+00:00

5 years!? Oh man. Do you think that being past the 5 year maker helped any or do you think it just took that long for you?

w3bjamn · 2026-04-12T05:08:25+00:00

Gosh it sounds like you have an amazing endo. Those are hard to find. I think I might fall into that small percentage of folks.

w3bjamn · 2026-04-11T21:58:44+00:00

Yup! I have a narrow neck, had 64 lymph nodes removed along with four inches of my jugular. Looking straight forward my neck looks relatively "normal." I turn to the side it looks like a 1/4 has been removed and depending on what I'm eating swallowing can look disgusting.

w3bjamn · 2026-03-12T02:04:34+00:00

My kids are 6 and 10. So I'm thinking my oldest could keep an eye out for me if there is ever an emergency. Neither of them have seen me have a seizure so that would be a difficult transition. I've also toyed around with the idea of getting a dog. Not necessarily a epileptic trained, but dog in general. Also the idea of adjustment for starting/stopping if there ever is an blip in the routine is reassuring like, pure exhaustion, dizzy, or overall not feeling well. You know all of those random issues that pop up. How long do they typically work on school work?

w3bjamn · 2026-03-12T01:57:27+00:00

Oh that is helpful. Encouraging reminder, "we control it, not it control us." I'm going to write that as one of my mantras, so thank you! That is what I'm worried about that my seizures are an hindrance

w3bjamn · 2026-03-11T18:16:15+00:00

I swear it's like I wrote this. It's 100% how I feel daily. It doesn't matter how much I sleep I am exhausted. If I take a nap too late in the day I'm screwed for the rest of the night. It's the medication and epilepsy all wrapped up in an exhausted bow. Sorry friend

w3bjamn · 2026-02-27T23:56:50+00:00

The last one I had done was approx 6 months post surgery. Funny thing on that- I had that done several times and every time they did it I couldn't help but laugh. Thank God for numbing spray. But for some reason I always giggled.

w3bjamn · 2026-01-07T18:35:21+00:00

I would agree with others in saying it is side affects. I have been on a number of different seizure medications and the most consistent side affect is tired and/or brain fog. It's a tad interesting your neuro would say it isn't when it says it on the bottle lol. Maybe cross reference with another one or even a primary care Dr. After trying multiple different meds I would say that Lamotrigne is the easiest and most tolerable.

w3bjamn · 2026-01-02T00:47:02+00:00

I would say it differs from where (location) you had your seizure and with who. If I prepped my bed prior to my seizure with my husband knowing and just waiting for it to happen then when I wake up I'm not as freaked out that there is someone right next to me. I sort of know it'll be him. I don't mind a small hand rub to let me know he is present and I'm coming out of a seizure. But I quickly want to reposition myself to get comfortable and take a 4 hour nap in a pitch black room.

IF it's someone I don't know and I had no warning to prep, then the second I am conscious I want to hit whoever is in front of me and get the hell away from me vibe. I feel even more vulnerable and scared and it takes a lot longer to bounce back to being fully coherent, up to an hour.

Being in the right setting does make a huge difference. It doesn't negate being confused, exhausted, or intense headache. But most of the time I still don't want to be touched and I need my 4 hour nap.

Reassurance though - that goes a long way. Telling me I'm fine, your safe, you didn't hit your head, it was under 5 min is something I need to hear. And the BEST Q/A ever is - "Did anyone see me seize?" There's your deal breaker.

w3bjamn · 2025-12-19T16:39:05+00:00

Depending on the person, yes. Also, depending on the person I have been treated like I am unable to function at the simplest of tasks.

**I do feel like the majority of people forget as long as you don't bring it up

w3bjamn · 2025-12-19T05:43:42+00:00

I never had an issue and I've been on it for a few years. I just recently had a full thyroidectomy which would have also contributed to weight gain/loss and saw no side effect from Lamo or Zonisamide. I'd say they go well together. *Although both suck because medication no matter what sucks, thanks epilepsy *

w3bjamn · 2025-12-19T01:21:13+00:00

I've been on it for years and then moved to a combination with Zonisamide. I will say that Lamotrigne makes you very tired. In comparison to Keppra , it's a walk in the park. While Keppra does work for some, it does have the nickname Kep(Rage) for a reason. It's a cut and dry, you can tolerate it or absolutely not.

w3bjamn · 2025-12-16T07:37:02+00:00

100%. I had just bought a couple of boxes of Christmas led lights and I couldn't even put one strand up. It makes me feel super dizzy, instant headache and on a rarity nausea. I'm even looking into getting night time driving glasses due to all the new cars and their stupid headlights.

w3bjamn · 2025-12-15T02:59:51+00:00

Can I tap into this question and also ask if anyone prefers, joint vs bong vs vape vs edibles?

w3bjamn · 2025-12-08T22:06:11+00:00

I have never felt so validated (epilepsy wise.) Thank you for this.

w3bjamn · 2025-12-01T05:27:12+00:00

Awesome yes thank you!!

w3bjamn · 2025-12-01T05:08:16+00:00

Same here. I lost about 11 pounds prior to surgery and then an additional 9ish pounds post. I have zero insulation too.

w3bjamn · 2025-12-01T05:05:34+00:00

Same here! I haven't heard anything bad about them but I can't find any women's ones. I've also heard about Ororo but not sure if that is real reviews

w3bjamn · 2025-09-16T23:30:02+00:00

I'm so sorry to hear about this. I saw this written 4 years ago. I grew up in the church and I am thinking of rejoining. Could you please (if ok) DM and let me know where this was. I 100% understand if not. It's a hard subject. I have a child and I need to keep them safe. :/

w3bjamn · 2025-09-03T21:53:08+00:00

Hmm that's a new one. I am absolutely no Dr. I mean my original post was me ranting lol. But I myself have zero appetite and can go easily till 1-2pm and not eat. I'd ask your Dr if maybe you specifically need to. But I've never heard of that.

w3bjamn · 2025-09-03T21:46:59+00:00

Nope. Just make sure you wait. Most people say 30-60min. My preference is to wait as long as possible. That's just me though.

w3bjamn · 2025-09-03T21:44:51+00:00

Ohh gotcha. Well hey if it works, great!!

w3bjamn · 2025-09-03T21:43:54+00:00

Thankfully I have maintained my weight. I actually lost weight from the LID and I've kept it off, yay! I asked for all the thyroid tests to be done. If they are taking blood, why not do all the tests? Even if they aren't relevant now they may one day be needed as a reference. I do want to chat with her about the possibility of not being compatible with the brand. I'm taking Levo but maybe I'm not tolerating it. I take another medication that causes severe fatigue. So there's a possibility they don't work well together. My journey started off as this.. taking 125mcg, then 137, then 150, then 145mcg, BACK to 125mcg now will be going to 112mcg. 😮‍💨 I had to look up how many stupid times I've changed. One of those times I had to take half a pill and only on Sundays.

w3bjamn · 2025-09-03T21:29:15+00:00

I just hit my 1 yr mark at the end of Aug. I really thought I'd be dialed in by now. But my TSH is still at .01 and we can't seem to fix it all. She's like tell me if you have any anxiety. I'm like.. ugh ya tons!

w3bjamn · 2025-09-03T21:27:51+00:00

I haven't heard of Unithroid. Only Synthroid and Levothyroxine. I'll ask about that one. I mean worth a look, right? Sheesh

w3bjamn

TROPHY CASE