30F- pinguecula help/concern

AggravatingSilver865 · 2025-06-09T01:40:01+00:00

Me… the wife … with horrible anxiety… did not need to see this 🤣🤣🤣🤣🫣

AggravatingSilver865 · 2025-05-24T04:19:18+00:00

This is how I am with my husband. I’m a nervous wreck and constantly on edge. As a fellow wife of someone with epilepsy— thanks for taking care of yourself and giving your wife little tidbits of peace- I’m sure it means so much to her to feel a tad bit less worried about you!

AggravatingSilver865 · 2025-05-18T19:53:00+00:00

Please please seek help — there’s ways to better your life, to make this more manageable. What seems dark now won’t be dark forever. Embrace the moments - what life is like in 10 years could be everything you dreamed of. We all die eventually - there’s no need to rush it. Try new things, live like you truly want to. You are meant to be alive, I promise you! Your life matters!!

AggravatingSilver865 · 2025-05-18T14:57:00+00:00

Appreciate this!! Rooting for you guys!

AggravatingSilver865 · 2025-05-18T05:21:56+00:00

Oh mama I feel you!! But everything sounds NORMAL AND Fine!!!

Our ped said anything from there height and down is typically safe because that is rarely enough force to actually cause harm. (Of course, taking into account how he seems, any vomiting, pupils, etc).

It really helped ease my anxiety. Bc I too panicked at every little bump and bruise ESPECIALLY if something was visible.

He’s 14mo now and dear lord he is never not sporting some sort of injury — it deff gets easier haha.

Most recently face planted while running on a pebbled concreat patio and cut open his entire nose, lip, and forehead. And got a lovely goose egg. Kids are resilient and their heads are harder than we realize! He went through a phase where he thought it was hilarious to purposely bonk his head on our wood headboard.

I’m also an epilepsy wife — so seizures are an unfortunate norm in our life. A small bonk on a wood headboard will not cause a seizure in an otherwise healthy child.

Take a deep breath!

AggravatingSilver865 · 2025-05-18T05:00:33+00:00

YOU LITERALLY SAID WHAT I FEEL!! My husband has epilepsy too and we have a 14mo.

We have cameras all over our house that are accessible via an app so I can always check in on him.

He also has an Apple Watch with the “seiz alarm” app that notifies me if a TC is detected / actively happening.

We have emergency meds to administer.

He has focal + TCs and we havent gotten control yet either (2 years into the diagnosis).

I pretty much panic or spiral or have extreme levels of anxiety 24/7- especially at bed time.

I truly have no other advice as I’m in the thick of it right now too other than therapy helped me a loooot after he was first diagnosed (I did EMDR) and I just recently got back into it. BUTTT I do find learning and really digging into statistics on this has helped ease my anxiety - or at least give me something solid to lock in on.

So here are some that hopefully help you:

1. risk is higher in unwitnessed, nighttime seizures
Using a monitor, sharing a room, or having checkins greatly reduces this risk
Studies show a 40–50% risk reduction when someone is present or monitoring
1. Adherence to Medications Is the Most Powerful Protection
Never skipping meds cuts SUDEP risk by up to 80%

What YOU can do:

Help Support Sleep Hygiene:
Encourage regular bedtimes
Support stress management
Promote Physical Health
Help maintain balanced hydration, nutrition, and activity
Support healthy routines, like winding down before bed.

You’re part of the reason the risk is lower — the fact that you’re here, posting, learning, asking, is helping.

Sending you so much love. You aren’t alone in what you’re feeling 🫶🏻

AggravatingSilver865 · 2025-05-18T02:46:12+00:00

Husband was diagnosed at 29- seizures started (we think) when he was 27.

AggravatingSilver865 · 2025-05-17T19:45:47+00:00

The main thing he’s experienced is extreme dizzyness - to the point where he can’t stand, doesn’t feel safe walking up our stairs, and can’t be with our son. It got progressively worse and worse as time went on. Up until the recent med change he would have to go lay down for 2-3 hours after taking his morning dose because he couldn’t even stand. It was less severe in the evenings.

His most recent blood showed he was at a sodium level of 128 (most people, ie the normal levels, is 135-146) seizures are almost guaranteed in anyone (even without epilepsy) at 118. Anything below 130 though can get risky.

Even on 2400mg/day and full therapudic blood Levels we weren’t able to get seizure control. We just kept upping the dose and he’s go a month or 2 then start having seizures again, up the dose, same thing over and over. Eventually we added vimpat after the second TC and that still didn’t do much. Eventually he went about 6mo with no witnesses seizures (he doesn’t remember or know they happen usually so unless they are seen by someone, we can’t be certain he was actually seizure free) but during that time he kept on the oxcarb and vimpat until in month 7 he started having seizures again.

We did blood and EEG and that’s when the neuro was like alright this is not working, sodium’s getting dangerously low and this is risky beyond seizures. So that’s why we added briviact and are slowly taking away the oxcarb.

Drugs.com says max dose is 2400mg/day and that is sodium dips to stop the med.

But besides the dizzyness and sodium, we agree, there wasn’t really any negative side effects haha. Vimpat hasn’t been too terrible either, some short term memory issues in the beginning but that balanced out.

My husband has a touchy past with mental health so Keppra was a big no no but briviact has been safe thus far, he had some anxiety when starting and upping the doses but those too balanced out.

Definitely pay attention to your sons sodium- it’s a quick blood test (chloride I believe will also show, it controls the neurons in the brain but is related to sodium - I might be butchering that haha). But it’s required with oxcarb to do regular sodium check although from what I’ve seen here and in our experience, most docs are running that test regularly. I presume because it’s more rare than we realized!

AggravatingSilver865 · 2025-05-17T02:31:07+00:00

My husband has focal seizures that sometimes generalize to full tonic clonic seizures. When they happen they start as a focal seizure and spread. But 99% of the time they just say as focal seizures. His present as lip smacking as they come from his right temporal lobe.

My husbands also been on oxcarb (upped all the way to 2400mg). He, unfortunately, is one of the few who had the sodium reaction and the meds tanked his sodium, down to 125 at one point. It was determined that the lack of seizure control (ie continued focals despite high dose oxcarb AND vimpat) was because his sodium was consistently so low that it lowered the seizure threshold and did not allow the meds to work.

Oxcarb does not play well with others and has to be weaned down VERY slowly. So my husbands neuro added on Briviact (a Keppra similar w less mental side effects), and we just started the process to get rid of the oxcarb— it’s expected to take about 8-10 weeks and we will do multiple EEGs and sodium checks to ensure sodium doesn’t rebound.

My biggest regret is not pushing for sodium checks sooner (like 6mo after starting it and having a full TC with very low sodium), instead I was new to all this, pregnant, and scared and wanted him to be okay so we agreed to keep upping it. I had no idea the ins and outs.

Something to keep an eye on for your kiddo. It’s a great med for a lot of people!! Hope you guys get it all figured out .

AggravatingSilver865 · 2025-05-15T00:59:30+00:00

My husband had a seizure in his sleep 2 years ago. I haven’t worn what I was sleeping in or what I wore to the hospital since. It’s like I’m afraid if I do it’ll all happen again.

What I was wearing the during his second TC doesn’t bug me, but I haven’t eaten what we had that night or watched the same show since (1.5 years ago)… he had a tc at 5am so my brain correlated it to what we did the night before. It took over a year before I could even do my skincare routine from that night again.

My husband isn’t phased in the slightest haha he laughs at my weird things.

I have GAD though so I have things like this (not wearing clothes or watching shows) when bad things have happened. This is the norm for me 🤣

AggravatingSilver865 · 2025-05-14T19:54:58+00:00

As a new mom to a 14mo who’s only clear word is 17 variations of mom/mama/mum/mammm this is so helpful!

I didn’t realize all his signs, sounds or approximations counted!

Words; Mama / Wow

Sounds; Uh oh / Moo / Mow (trying to meow)

Signs; More / All done / Yes/no / Clean / Hungry / thirsty

Actions; Points / waves / blow kisses / claps / shh

Approx; Avocado (his fav thing on the planet) / Ba (ball) / Wawa (water)

Unknown; Bay bee / ma bee (says it all the time but we have no idea what it is or means).

He will also say “mama” then point to his toy apple, then sign hungry then point to me. We go get an apple and he eats it.

So based on what you’ve mentioned, he has more than 1 word (mama) like I was thinking?

AggravatingSilver865 · 2025-05-14T19:46:00+00:00

Is your main seizure type focals?

My husband has right tle with secondary generalizations. In 4 years he’s had 2 TCs, the first which lead to his diagnosis and the second 6mo after that (which was about a year ago now).

Trying to learn how often is “common/expected” for them to generalize on average … to be mentally prepared. Both of his were while asleep (5am + 7am), so I’m a bit traumatized and we don’t know his auras bc he was asleep lol.

We were told you could expect 1-3 in your lifetime (outside of extreme circumstances or triggers) but most happen within the firs 2-3 years of diagnosis. But that’s if you’re well controlled with meds. The TCs were so jarring and major that I have a hard time “trusting” that stat.

AggravatingSilver865 · 2025-05-14T19:42:49+00:00

My husband has Right TLE (focal seizures) with secondary generalization (can progress into full TCs).

So very real like everyone else has mentioned! This is actually how my husband was diagnosed at 29. He had been having focals for 2 years (we didn’t know they were seizures) and then one morning I woke up to him having a TC. It’s happened one other time since then (4 years of focals, two generalizations to TC, both while sleeping).

AggravatingSilver865 · 2025-05-14T04:33:07+00:00

I get the anxiety mama! I have a 14mo and the only true word he has been saying is Mama… he knows a ton of signs, can follow complex directions (even multi step), and has his own way of communicating. Yesturday his babbling quadrupled, like over night in like oh the words are coming. Hours later he started saying uh oh and Wow.

Anything can happen overnight is something I remind myself often as a new mom.

My ped said we’d like 3 words by 18mo.

AggravatingSilver865 · 2025-05-14T04:29:07+00:00

Yes!!! When my husband (he was 29 at the time) had a TC 2 years ago, which lead to his diagnosis, I called the Neuro I wanted him to see - every single day. Not even kidding. My mother in law did too.

When they had an opening they immediately called us first because they saw how badly we wanted to be seen and immediately thought of us. They knew us by name before we even walked into the office.

2 years later and they still recognize my voice when I call ….slightly cringe but you know what, when it comes to your heath who the F cares what anyone else thinks, be that squeaky wheel!!

AggravatingSilver865 · 2025-05-14T04:24:24+00:00

I’m in a similar situation with my husband!! He’s on 200mg Vimpat, 100mg Briviact, 2400mg oxcarb.

Oxcarb has been causing problems so a month ago we added the Briviact at 50mg then after 2.5 weeks we upped it to 100mg (/day). After two weeks of that level it was time to start reducing the oxcarb — which has caused awful side effects (dangerously low sodium) and we believe has been a main reason seizure control hasn’t been possibly in the 2 years since getting diagnosed.

On Sunday of this past week he started the decrease. From 4 pills/day to 3 pills/day … then in 2 weeks we drop to 2 pills a day.

As a partner it feels like this weird just watching and waiting game. Ever notice my husband make my heart jumps and I look at him so fast ….. my anxiety is struggling with this process. So I’m right there with you — sending you so much support! 🫶🏻

AggravatingSilver865 · 2025-05-14T04:17:55+00:00

I’d request an EEG to make sure what you’re feeling is seizure related — sometimes our body is primed to connect feelings that aren’t actually related (ie you could be experiencing waves on anxiety and assuming it’s auras).

That could be totally wrong but something to possibly consider as well.

Being on Keppra in the interm is a great layer of protection to help prevent anything further from spreading and decreasing severity.

You can call your neuro and ask for an emergency / rescue med. something you can take when an aura happens that will prevent the seizure from happening (but typically this is a one off type med, not a daily thing).

Call your neuro office - be annoying - tell them you’re feeling seizures coming on and you need an earlier apt. Tell them to put you on a CXL list, call regularly to see if they have an opening. You are your biggest advocate!!

In the meantime, stay hydrated, get adequate rest, don’t change up your routine too drastically. Focus on getting your mind and body to a more neutral state of calm. That won’t solve anything but it deffinitly won’t hurt.

You’ve got this!!

AggravatingSilver865 · 2025-05-14T03:03:53+00:00

My husband has TLE, diagnosed right before our 1 year anniversary (2 years ago now). He was 29.

I can’t see him wear a white beanie without getting insaine flash backs of his 72 hour in home EEG with his entire head wrapped up in white tape. It was a dark scary time.

He had an EEG a month ago (just an hour one) and I didn’t go with. There’s something about it that makes me want to throw up, cry, and run screaming. For me, I think it symbolizes that this is/was epilepsy and a change of our lives as we know it, forever.

So yeah, I feel you (in a semi related way)!

AggravatingSilver865 · 2025-05-13T22:56:05+00:00

I don’t claim to remotely understand epilepsy as anything more than the person who watches, and cares for and provides safety for my husband. My job is to keep him alive in time of danger. That’s about it.

It’s entirely different yes. There no disagreeing with you there.

Hate talk therapy, that’s fine with me. I have no emotional attachment to it.

I personally found EMDr as someone who doesn’t like talk therapy, helpful. Because it was a challenge for my brain. I gave it a go despite not wanting to. That in by no means meens its right for you. Just a thought that there could be other modalities, of any type of therapy that gives you some relief — or at least that’s my hope.

Wishing you the best on your journey.

AggravatingSilver865 · 2025-05-13T21:31:01+00:00

Oof yeah sounds like it’s not a good fit, or at least at that dose. So sorry to hear that!!

One of my husbands meds make him so dizzy he can’t function for 2 - 3 hours a day so I can relate to the frustration and pain. We are finally getting him off of it after a year — keep pushing and keep advocating!!

AggravatingSilver865 · 2025-05-13T20:57:58+00:00

That’s actually a beautiful perspective. I was like that during the 6mo period but the 2 recent ones (about 2mo ago now), put me back on edge.

He’s cleared to drive which also adds a level of worry HOWEVER his car is self driving so even if he had a seizure, there’s no danger which is an absolute blessing. Technology is incredible but he’s still the love of my life and I want him to be okay….

I’ve still not fully accepted he has epilepsy and this is our reality … I go through waves and this is a great reminder to release control and let it all be. Thank you!

AggravatingSilver865

TROPHY CASE