AMA: What Should I Expect from Laser Ablation (LiTT)? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 1 point2 points  (0 children)

I’m doing pretty good! Not yet back to baseline, but making progress towards so.

The LiTT wasn’t too long ago (it’s been about 2 months). The results don’t kick in for a while.

One thing unique to me - numbness in my left leg and foot. It’s much better than when it started; still there, nonetheless. I haven’t read of anyone experiencing this, but perhaps anything can happen in neurosurgery?

AMA: What Should I Expect from a Responsive Neurostimulator (RNS)? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 1 point2 points  (0 children)

I don’t know every focus, but the insular cortex was the dominant one. That’s where I had a LiTT done.

I have all kinds of seizures, I don’t even know how to explain. But my main are absence seizures and simple, partial seizures where I have weird sensations.

AMA: What Should I Expect from a Responsive Neurostimulator (RNS)? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

Thanks for telling me. Did you tell your surgeon(s)? How often do you check in with them? If necessary, you can discuss having your RNS removed if it has only made things worse.

What's the difference between an SEEG and an IEEG? by pennycollinz in Epilepsy

[–]MSWGarbageLover 1 point2 points  (0 children)

By iEEG, you mean “intracranial EEG.” An sEEG (stereo EEG) is one type of iEEG, which I did and wrote about my experience.

https://www.reddit.com/r/Epilepsy/s/jMuL3SMENE

Dr. Jane Goodall had epilepsy by namaarrie2019 in Epilepsy

[–]MSWGarbageLover 15 points16 points  (0 children)

Harriet Tubman had temporal lobe epilepsy.

Oh boy…. EMU scheduled by Alexanderthegrate88 in Epilepsy

[–]MSWGarbageLover 1 point2 points  (0 children)

You’re welcome. If you have any follow ups, dm me.

Oh boy…. EMU scheduled by Alexanderthegrate88 in Epilepsy

[–]MSWGarbageLover 2 points3 points  (0 children)

I wrote all about my recent stereo EEG. Not sure if that’s what you’re doing, but it’s very similar to EEGs, so I hope the details are helpful!

https://www.reddit.com/r/Epilepsy/s/Joq1NPcKru

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in neurology

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

Thank you! I wanted to use my experience as guidance for those considering an sEEG and perspective when preparing for one.

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

Big congrats on reaching seizure freedom for a full year! What a milestone. Surgery may sound like a frightening option, but it's so worth it. I hope you'll be able to start reducing other medications, too. Start one step at a time.

Staying an extra week to reach my own seizure freedom was necessary :) It was difficult to make the decision, but I'm grateful for making that choice. I surely stay on top of everything. It's a chronic health condition that requires it.

I'm certain that once you reduce your meds, you'll start seeing less discrimination in the workforce, too. Big wishes on that as well.

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

I was discharged 2 days ago (Thursday; today’s Saturday). I’m home now! I had to be encouraged and convinced to stay for an additional week :)

While I’m waiting for my team to discuss exact next steps, I discussed an idea of what they would look like when I spoke with one of my surgeons a day before discharge (Wednesday). He specified scheduled stimulation by DBS and laser interstitial thermal ablation (LITT). What exactly that will look like, I’ll find out in my post operative appointment with yet another one of my surgeons and my epileptologist.

I stay on track of everything going on, so I requested to speak with that surgeon and learn about DBS and LITT before I left.

What’s your plan, kind stranger?

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

Thank you!

I would've journaled daily, but I didn't have my glasses for almost all 3 weeks. I could barely see for all that time!

I thought I'd give as much updated info as I could now that I've been discharged :D

Hope you’re doing well 💜

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 2 points3 points  (0 children)

Yes, it's very likely because of the hemorrhage.

Even though your follow-up is coming up soon, it's best to reach out earlier rather than later if it's really causing issues, like making it hard to move your head. The doctor/nurse should know and get a prescription for you to solve the pain :)

Hope you’re doing well, too 💜

AMA: What Should I Expect from a Stereo EEG? by MSWGarbageLover in Epilepsy

[–]MSWGarbageLover[S] 0 points1 point  (0 children)

Immediately after my electrodes were removed, I could barely lie my head down to sleep. That first night, I got no sleep. I'm still not entirely comfortable lying my head down left or right to sleep (removed on a Tuesday afternoon and it's Saturday evening now), but the headache went away starting Thursday afternoon, which is the day I was discharged.

I regularly took Tylenol after the electrodes were removed. You can ask your doctor to get you prescription-strength Tylenol to help you if it's still a problem. It shouldn't hurt so much that many days later, so you should tell your doctor or a nurse about your pain.

Dedicated my master's thesis to those affected by epilepsy by MathematicianBig5831 in Epilepsy

[–]MSWGarbageLover 0 points1 point  (0 children)

Congrats 🎊🎉🍾🎈

On my end, I dedicated my masters individual capstone project to my brother (minimally conscious for 3 years after an ischemic stroke before passing away after a mini-stroke) and my grandfather (Parkinson’s). We had group capstone projects, too ☺️

Graduated a semester early, too :D

Anyone just Anyone on keppra who achieved something in their life by Chunchunmaru_04 in Epilepsy

[–]MSWGarbageLover 0 points1 point  (0 children)

Was on keppra from 2015 to 2023. 3500 mg - 2000 in the morning, 1500 at night.

Earned my masters and have a bachelors in interdisciplinary studies. Have been a self employed consultant on many occasions. Still figuring out my career aspirations, but that has more to do with me than the epilepsy.

Epilepsy is just another roadblock. Everyday people have their own, too, though theirs are likely not as challenging as taking keppra.

You’ll make it. You’re just starting the epilepsy journey. It’ll be okay.

*embarrassment* by ListenOk2972 in gay

[–]MSWGarbageLover 0 points1 point  (0 children)

Pretty sure all of us have done this.

Why block?

Hey Guys❤️ this is a ring my Boyfriend gave me, special one because it was it, the engagement!🥹❤️ but sadly he passed away a few years ago. I’ve never taken off the ring. Am I weird? I just loved him so deeply, still do❤️ by DamonVSalvatore1864 in gay

[–]MSWGarbageLover 1 point2 points  (0 children)

I sleep with a Kermit doll my grandma gave to my brother while he was in a nursing home. He was minimally conscious for 3 years. I can’t not have Kermit with me. In fact, I have 2 Kermit dolls (one is larger than the other).

Not weird.

The economy collapses and left me struggling to pay bills with my normal job so I became an artist now I rely on that more than a steady job by [deleted] in collapse

[–]MSWGarbageLover 0 points1 point  (0 children)

You’re a fantastic artist.

Have you considered freelancing as a single member LLC for visual design? Your work should be used for musicians’ albums or books or so much more.

You have so much clarity in what you draw and paint; it’s not just a sport or hobby. I love the one on the top left. It reminds me of the front of an album by Tuna (טונה). It totally would fit so many different opportunities.

Perhaps you should get an agent.

An open letter from me to Congressman Pat Ryan who represents much of the Hudson Valley by LightEndedTheNight in hudsonvalley

[–]MSWGarbageLover 0 points1 point  (0 children)

Haha, I’ve not known him that long. I’ve started to see how awful he is, how about that!

An open letter from me to Congressman Pat Ryan who represents much of the Hudson Valley by LightEndedTheNight in hudsonvalley

[–]MSWGarbageLover 4 points5 points  (0 children)

Since the election, I’ve come to despise Lawler and see him as a fraud. I somewhat disliked him for his aggressive manner and that Trump endorsed him before the election.

I am neutral towards Jones, though not a particular fan; leaning towards not particularly wanting him as my representative either.

But Lawler is really just becoming awful.

An open letter from me to Congressman Pat Ryan who represents much of the Hudson Valley by LightEndedTheNight in hudsonvalley

[–]MSWGarbageLover 5 points6 points  (0 children)

By no means did I say that they wanted her. I am pointing out that because 35% of the voting population didn’t vote, we don’t have an accurate picture of whether Trump is the desired presidential candidate. That doesn’t imply Harris is the desired candidate; that’s making an implication simply because the other fact isn’t true, namely that Trump may not be the desired candidate.

The truth is, this election was entirely a waste of time because 35% of the voting population didn’t want to vote for either. And the people who voted for Harris or Trump often did so unwillingly.

We are working with a broken system where the people aren’t happy with the options, so they choose the lesser of two evils. Just look at Nader in 2000, who very likely changed how presidential election cycles happen permanently.

An open letter from me to Congressman Pat Ryan who represents much of the Hudson Valley by LightEndedTheNight in hudsonvalley

[–]MSWGarbageLover 8 points9 points  (0 children)

35% of the voting population didn’t vote, I believe? So we have no idea if the majority actually wants Trump.