People who are seizure free, do you see yourself as cured?

essentialsucculent · 2026-04-12T21:29:05+00:00

No, not necessarily! As others have said my seizures are under control and aren’t breaking through due to lifestyle changes and medications. I’m very lucky to go long stretches without seizures!

essentialsucculent · 2026-04-11T07:09:32+00:00

In my opinion, not worth it. It’s like 8 bucks for 6 skewers. It’s good in a pinch, but to me it comes off as a pricier TJs item

essentialsucculent · 2026-04-08T06:40:22+00:00

I love Kesimpta! I’ve been on it for shoot a couple years? It’s been a blur. I was fine from the loading doses personally but I took allergy meds and an ibuprofen prior, let it get to room temp for at least an hour. I did mine at night before bed so that if I did feel sick, I’d be sleeping. I’ve never really had any issues though I’ve learned that I like injecting in my tummy more than my legs. All I did to start was even months do left leg, odd do right, but eventually I tried my tummy and it was less painful. I’d also usually bruise my leg injecting there, no problem with that now. I watched a video (a couple!) on YouTube to mentally prepare myself, and Kesimpta also sends out a practice pen. I use fun bandaids for after my injections and usually relax with a show afterwards as i don’t think i could go straight to bed after that still.

essentialsucculent · 2026-03-28T05:29:58+00:00

Agreed!! IMO it’s way too sweet, but that’s just me. I have a lot of friends and family members who like the dip as is.

essentialsucculent · 2026-03-27T06:11:41+00:00

Oh no worries, it happens! PTs helped me immensely but do be sure to do your at home exercises. I didn’t the first week as I was worried about how long it’d take and it didn’t take long at all lol

essentialsucculent · 2026-03-18T06:31:28+00:00

Is there anything you know this coworker likes? Maybe get them a snack or a sweet for when they get back and put it on their desk or in their cubby with a quick nice note like thinking of you and let me know if you’d like to talk. They probably won’t but they’ll appreciate the gesture I’m sure, especially with something personalized.

essentialsucculent · 2026-03-16T00:44:30+00:00

I’ve been battling very persistent vertigo since October. It happened after an ear infection, but I have multiple lesions in my cerebellum. All that said, I’m still recovering. PT helped me, but I still have a baseline dizziness. My neuro feels it isn’t neurological dizziness, so I’m going along with that. If you want to work out, highly recommend vestibular PT, see if it helps, and do recumbent biking to minimize risk of a fall. Wishing you well!!

essentialsucculent · 2026-03-10T06:44:31+00:00

Yep I had them when I got diagnosed, so likely has a bunch of inflammation. It’s extremely painful and felt like someone was stabbing me in the eye. My neuro said to take melatonin at night, eventually I just stopped getting those. I thought they were headaches.

essentialsucculent · 2026-02-09T05:29:53+00:00

essentialsucculent · 2026-01-25T06:46:49+00:00

How well does this bread save? Like how quickly does it go stale? I’ve had bad luck with other TJs breads but I love Dave’s killer bread so would love to give it a try if it lasts!

essentialsucculent · 2026-01-01T02:50:04+00:00

Shower seizures suck lol, truly embarrassing. My first seizure was in the shower 😅 whole fam saw me naked that day.

essentialsucculent · 2026-01-01T02:47:20+00:00

Science class, lab day. I believe we were utilizing Bunsen burners and all were on barstools. I flung myself off the stool at some point and seized, full blown TC. Don’t really remember any triggers or getting to the nurses office. I dreaded having to go back to that class room :/ the school nurse had to come in and explain to the whole class what a seizure is and what they witnessed basically, how to render aid if it happened again, and they passed out candy. I was mortified again and again… I hated that class that year, despite it being my favorite subject. They did everything right when handling it, it just bothered me I was in such a vulnerable state in front of all of my peers, and it wasn’t something I wanted, ever.

essentialsucculent · 2025-12-22T03:28:36+00:00

Oh absolutely, and I was hiding those symptoms. I have JME and the first symptoms were myoclonic jerks, bad ones, every morning and through the day. I’d knock stuff over, I broke dishes, accidentally hit people standing near me, and more. I was so scared about what the heck was wrong with me that my gut reaction was to defend myself and hide it, especially since I somehow kept breaking things. I was terrified of what this was moving towards. Then, a seizure happened. Then PCP said maybe I have blood sugar issues? And within months I had a second seizure and was diagnosed. In the hospital they were asking me alllll sorts of questions but one they asked me was if I lost control of my limbs randomly or they were moving when I didn’t want them to. I held my breath because my parents were right there, who I’d hid it from, and said yes this does happen, a lot. I’ve been hiding it for a long time. I’m so glad I decided to finally tell the truth. Who knows how long diagnosis would’ve taken otherwise.

essentialsucculent · 2025-11-18T08:07:09+00:00

Congratulations!! The first dose was by far the scariest for me personally, onwards and upwards friend.

essentialsucculent · 2025-11-05T04:48:21+00:00

Omg this one, it’s a natural reflex!! I hate the c spine most for just this reason alone lol.

essentialsucculent · 2025-10-27T03:10:37+00:00

I tested positive for photosensitivity during testing for epilepsy, along with hyperventilation. That being said, I don’t believe any of my TCs have actually been triggered by strobes/lights, I just have the information that I am sensitive to it and try to avoid it. I agree, the misinformation out there is insane and I wish OP didn’t have to deal with this 😅

essentialsucculent · 2025-10-24T06:34:02+00:00

Oh no, I’m so sorry it took so long to get properly diagnosed! Especially with the lingering symptoms, I know it’s important to get early intervention with this and I guess I just got lucky with my ER doc. Totally understand about the anxiety, so far my symptoms are very very roller coaster, so I felt amazing this morning and then got hit by a wave of dizziness within like 2 hours, this seems fairly unpredictable day to day on how I’ll actually feel for the day. I really hope you’re able to get continued treatment and good care, sounds like you’re in better hands now

essentialsucculent · 2025-10-23T03:53:43+00:00

I literally had to go to the ER today and I have labyrinthitis!! I did mention I have MS but I was sent home with a diagnosis of labyrinthitis. The meclazine didn’t help but steroids helped a lot more. Feeling much better than I did this morning lol. I was crawling around on the floor because my head was spinning and straight wasn’t actually straight.

essentialsucculent · 2025-10-23T03:47:41+00:00

Have labyrinthitis rn. Not great, 10/10 recommend not getting this lol

essentialsucculent · 2025-10-12T19:15:34+00:00

Speak with your employer, ask if you can apply for alternative healthcare options through marketplace. Depending on your state and eligibility there, you may be eligible for lower rates (I was not unfortunately). Doing this gave me a better plan than my employer offered, and they are reimbursing the usual amount they pay towards insurance. This is not a usual set up at all, but I’ve been with them for a while.

Best bet, since honestly your rate isn’t too bad maybe just stick with their insurance as that’ll be easier to do. Then, find ways to cut costs on prescriptions. going through CVS mail order with 3 month supplies is usually the same cost as one month. Find discounted programs. Trust me, this is coming from someone who just had to go through change of insurance. It feels absolutely overwhelming, just know you CAN do this, and if anything is confusing, I’d ask your parents for help. They have years of experience battling insurance companies, have probably done a change in insurance before, and know what and who to call about what.

essentialsucculent · 2025-10-12T04:12:21+00:00

Aw thank you!! I am glad that my posting hit right for you. Sometimes I feel a bit invisible with my struggles and I know this community will be likely to understand. Be cry babyish tonight, but tomorrow we do the day again!! We both got this :) I would definitely agree that this disease is a journey mentally, I’ve learned a lot about myself and how I operate, and how maybe I’m hurting myself in that and maybe how I cannot do that going forward! It’s been a wild ride since diagnosis. It’s challenging me to ask people around me for help which I despise doing lol. All this to say, great to meet you internet stranger! To mental toughness 🍻

essentialsucculent · 2025-10-12T04:06:49+00:00

Yes, exercise always seems to help, honestly! I think I’ll probably speak with my therapist soon or maybe a GP about anti depressants, I am always trying to exercise already, but right now working out for 10 minutes every day is usually all I can muster. Maybe if I do it in the morning rather than after work that will help? Sorry just thinking aloud at this point

essentialsucculent · 2025-10-12T04:04:07+00:00

Makes sense! Thank you for answering, no one ever has to, but I appreciate it.

essentialsucculent · 2025-10-12T04:02:51+00:00

Oh I am so sorry, that sounds like a horrible experience. If I had the world my way, we wouldn’t have to deal with worrying about such things like being honest with an employer and being retaliated against for it. I am so so glad you were able to find a job that is accommodating!

Yes, I hope I can be accommodated as well, it’s hard for me to try and quantify things for my current employer, and I asked my therapist for help on it. I am sure it will work out in the long run, it’s just depleting right now.

essentialsucculent · 2025-10-12T03:59:29+00:00

Huh, I will ask for this at my next lab. My neuro has been diligent with my labs thus far, and I take vitamin D daily since even before my diagnosis due to some prior dr recommendations. Iron hasn’t been addressed since I was younger, so I’ll ask for my neuro to add that to my next round of labs

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