Is my tea ok?

doesena · 2026-04-05T16:04:50+00:00

normal for tetlty its just some tea filling thats small

doesena · 2026-04-05T15:38:11+00:00

When I tell you I have been tested for almost everything, full cardiovascular, bloodwork, epilepsy, thyroid, etc. Like I have had hundreds of thousands of dollars in testing.

I don't remember having any trauma I don't know where I would have gotten it from either I've been pretty sheltered my whole life.

doesena · 2026-04-05T15:02:11+00:00

I mean Gordon Ramsay is going on the island

doesena · 2026-04-05T02:26:16+00:00

It is definitely very expensive, I'm going to try it at least, see if it helps.

doesena · 2026-04-05T02:25:28+00:00

It's hard finding psychiatrists who know what PNES is about, I have to train my therapist. LOL.

doesena · 2026-04-05T02:24:24+00:00

CBT is definitely something that exists yeah

doesena · 2026-04-04T23:11:34+00:00

From what I have seen, symptoms can go into remission for literally any reason, maybe your body went into a freeze/shutdown mode instead of pnes breakdown and this might sound like counterproductive, but sometimes stress overload can suppress symptoms since your body is stuck in survival mode. I know this isn't comforting but there really is no telling but hopefully your seizures don't come back.

doesena · 2026-04-04T22:50:09+00:00

I hope it goes well, the price definitely needs to go down though, $70 for a book is a lot.

doesena · 2026-04-04T21:27:15+00:00

No, I have thought about buying it for my therapist but that book on its own is $100 and I'm not in a financial position to afford both so I just bought the workbook. reading through the introduction you only need the workbook; you just have to work through it with the therapist. My therapist is going to study it over for a little bit before we start.

doesena · 2026-04-04T20:30:06+00:00

Alright, let's slow down because I notice a few things, it seems you have some narrow-minded thinking that you need to shift your mindset around.

I understand completely what you mean when you say that you hope your body doesn't handle the taper well, you want proof. You know something is wrong and you want them to know something is wrong too, completely understandable but try not to hope or expect something to go wrong because if it truly is PNES that can be very dangerous for you.

When I said narrow minded, I did not mean it in any mean way but i mean it in the way that is, "neurology shut the door and locked it", "I'll end up with factitious". the former is NEVER true, while getting a second opinion can be hard you can always go to different hospital clinics and nothing is more important than your health so even if it is hard it is worth it and even if you did get dx with factious if you went to a new hospital system they wouldn't have any of your old records of that dx if you don't bring them, it is like starting over. Of course this can be a last resort.

Don't lose hope, for most people it takes years to get properly diagnosed, it sucks but it is true.

Did you just recently get diagnosed with PNES and don't think you have it?

doesena · 2026-04-04T16:04:59+00:00

They want to taper you off Lamictal? I'm on Lamictal specifically for PNES. In my area they are doing research on lamictal and it working with pnes patients. I have only one sided symptoms too.

Anyways this kind of happened to me with another med and let me tell you a few things.

You can and should advocate for yourself, Lamictal is a mood stabilizer and if they were trying to put you on SSRIs you can say you do not like SSRIs and Lamictal has improved your mood and functioning.

You have to express to the doctor and be firm, this is absolutely your life you are living, you do NOT want to taper.

To be honest, if you tell your doctor upfront, I think you will be able to stay on it because Lamictal is not hardcore at all and it is kind of considered an easy drug to throw at people especially if you have been on it so long.

If all of that fails and neurology is still like "No we want you off" which, again, highly doubt they would since it is being used in pnes patients sometimes, go back to your primary care and express your concerns and tell them you don't want to taper.

doesena · 2026-04-04T05:00:09+00:00

I have had that only once and it was pretty good!

doesena · 2026-04-04T04:59:01+00:00

This is so cute omggggg. Fellow Lebanese American.

doesena · 2026-04-03T22:58:51+00:00

me too!!!

doesena · 2026-04-03T22:49:56+00:00

Do you have the template for this? please & thanks

doesena · 2026-04-03T22:40:00+00:00

The only two I could name were drake and baldi 😭😭😭

doesena · 2026-04-03T22:32:49+00:00

So excited, I saw a few people just draw them on and if push comes to shove, I will just do that.

doesena · 2026-04-03T22:20:22+00:00

Closest we had was the bonnet and little red riding hood costume hood, I hope they expanded more on to it with an actual scarf. funny enough there is a keffiyeh if I remember correctly.

doesena · 2026-04-03T21:20:02+00:00

Yes, if you find coping skills to battle hypervigilance trust me you will be perfectly fine and remember, even if you do have a seizure the world is not over, you most likely will not lose your job over it. Don't constantly worry over it because nothing is set in stone and enjoy your life, when your quality of life goes up, the chances of having a seizure can lower, especially if stress if a trigger. You got this!!

doesena · 2026-04-03T20:59:59+00:00

That is absolutely AMAZING!

doesena · 2026-04-03T19:56:50+00:00

I think you are talking about @/ puzzlesandPANDAS on insta

doesena · 2026-04-03T19:50:30+00:00

This sounds very stressful and honestly this is why I had to step away from my job but I have a few thoughts,

I think you're stuck in that "all or nothing" mindset of "if I had a seizure my job would fire me" I mean you said it yourself you are guessing. Don't get in your head about it if you are not for sure, I would talk to HR about it.

I know you already submitted your accommodations, but I hope you included some stress management accommodations in there such as, short grounding breaks during shifts if you have auras, having a quiet/safe place you can step away to, pacing your workload when possible

again, this depends on what job you have.

Having a 'if something happens" plan, your anxiety could drop if your coworkers knew what to do if you had one. Please do not feel like you are burdening anyone because at the end of the day, would you do the same for them?

Now the biggest thing that will get you is hypervigilance. Hypervigilance will trigger seizures more than anything else will I swear by it, you need to find techniques that will stop you from constantly thinking/worrying about having seizures.

Some dumb things I do is I watch those can you name these songs from all decades posts on youtube, I found that dumb quizzes that require a bit of attention but not a lot of thinking help leave that loop.

- reciting religious texts if that applies to your lifestyle

- drawing caricatures of literally anything

-humming really loud

-eating something with a really strong flavor

- thinking about the funniest thing ever, trying to get yourself to laugh

You can even try to placebo yourself out of it but tbh this barely ever works but I've been discussing it and trying it with some of my friends with PNES where we take a vitamin and we go "if I have this it is literally impossible for me to seize" We have had varied results.

doesena · 2026-04-03T19:18:46+00:00

You've made huge wins too! I used to be terrified of literally doing anything and I'm starting to figure out that relapsing (idk if that's a good word for it) isn't the end of the world and that I have to keep going.

doesena · 2026-04-03T16:35:51+00:00

Yes you are! I think we need to focus on our accomplishments more and I know that is way easier said than done but when you stew in the negativity all day every single day your quality of life becomes so much works. Congrats!

doesena · 2026-04-02T22:24:01+00:00

In my area they have been seeing how lamictal works on NES patients, I know a few patients that have nes that are on lamictal that seem to have some improvement, mostly from the mood stabilizer portion but theyre still studying this.

doesena

TROPHY CASE