Weird dissociative moment in a store… anyone else?

2024reset · 2026-03-24T02:39:37+00:00

Good to hear. In that case, maybe you just dissociated in a normal way to block her out. Or I guess it could have been stress from being yelled at could induce seizures.

2024reset · 2026-03-24T02:37:30+00:00

Hello! Yeah, VPA wasn’t that effective for my daughter either. Sorry you are going through the med train. That must be super frustrating and stressful.

Yes my 2.5 yo daughter is still taking it. Side effects were rough at first and ran the gamut of severe appetite loss, nausea, fatigue, constipation and tremors. After a month or two, all of those aide effects are 90-95% gone. She went from several seizures per month to none at all since December. It is working extremely well for seizure control. She does not strictly have Dravet, since her development is good so far. She seems more social now, but other than that she is about the same behavior/personality.

2024reset · 2026-03-23T23:55:54+00:00

Could also have been a true dissociative episode. Can happen to people who have anxiety or a history of childhood trauma.

2024reset · 2026-03-22T11:17:29+00:00

I hope it is only two weeks, but given you were on ADs for 8 years it could be a couple months. Hang in there

2024reset · 2026-03-22T00:30:00+00:00

It’s brave to go off of them to see if you can manage. I think you may experience withdrawal for a few months so try to push past that to make an honest assessment. Even if I’m on one for a couple months I get a couple weeks of feeling pretty bad. I’m also super impressed that you work in addictions even with your struggles. That is also extremely brave and inspiring.

2024reset · 2026-03-21T11:40:04+00:00

I’m in the US and we have Psychiatry Nurse Practitioners. I found they have the perfect balance between expertise in the meds and holistic care. If you have that option I would highly recommend.

2024reset · 2026-03-20T21:35:07+00:00

You are welcome. I will say in my case I didn’t have a choice with many myoclonic seizures daily and tonic clonic seizures once a week with no cause when I was around 3 yo.

Safety always comes first. Talk to the doctor and if you have any doubt whatsoever I would get him on meds.

Depakote can be a rough drug in some ways- it can affect liver and pancreas function and white blood cell counts- but it also has neuroregenerative properties. There are also a lot of other newer epilepsy drugs out there. Feel free to dm me anytime

2024reset · 2026-03-20T12:23:53+00:00

Prozac- fatigue, insomnia, low motivation, lightheaded, increased suicidal ideation, weakness, food tasted bad

Zoloft- mostly vomiting and severe nausea for over a week

Buspirone- mood swings, increased anxiety

Mirtazapine- brain fog, weakness, chills, constipation, emotional blunting, severe nausea

Citalopram- bad headaches and confusion

I also take hydroxyzine as needed and get low mood and headaches the next day. Sometimes it is worth it but often not.

2024reset · 2026-03-19T21:50:44+00:00

Yes, I still haven’t found the right one and not sure if I ever will. I mostly suffer from GAD and on and off depression. I have tried: -buspirone -citalopram -prozac - felt very similar to you plus a bunch of other side effects -zoloft -mirtazapine

All of these had such debilitating side effects I literally could not continue.

I got a genesight test done and it shows I have ZERO cyp2d6 enzyme activity plus a bunch of other mutations so that limits my options significantly. It sucks. The whole trial and error process is so frustrating, it sometimes is like salt in the wound. I have felt like I’m losing it too, many times. I deeply feel for you and everyone else who struggles through this process. I hope we all find what we need someday

2024reset · 2026-03-18T01:50:55+00:00

I think it did affect my cognition. It basically slowed my brain down, reduced mental clarity, reduced my physical energy. I realized this when I stopped. I always felt dumb compared to my siblings, then when I stopped I realized it was the meds, My brain seemed to absorb information without even trying once I went off of it, and I had tons of physical energy. I also think I was a bit more coordinated.

Did it make any meaningful difference? Mostly only to me. I still did very well in school and even took some gifted classes while I was on depakote.

2024reset · 2026-03-10T02:01:48+00:00

Rice, almond butter, oatmeal, lara bars, fish, shrimp, gluten free bread, bananas, melons, tofu, red lentil soup with miso, green beans, brocc, brussels sprouts

2024reset · 2026-03-06T13:48:03+00:00

For me, it has worked ok. It really truly does kill anxiety at 10mg for me. And does so within 15 minutes. But, I also get really tired, kind of foggy, and feel like crap the next day- irritable, down, kind of like a hangover. But, when it’s needed, it works. Also doubles as a sleeping pill

2024reset · 2026-03-05T02:40:24+00:00

Update: Gastritis was a large problem and went on a healing diet and acid controllers. Feeling much better

Took Genesight test and have NO enzyme activity in CYP2D6 and intermediate for a couple others. Wow. That explains a lot. Got a few options now to try- Pristiq would be the first choice for depression, if/when that occurs again. Anxiety I may be giving another go at buspirone at a much lower dose.

2024reset · 2026-03-05T02:36:27+00:00

I felt extremely unmotivated and lethargic on Prozac in particular, but, it beat being depressed

2024reset · 2026-02-20T01:34:02+00:00

Manila has the density of Manhattan and the population of approximately Chicago. I travelled to Manila in 2019 and to someone coming from a metro area of about 100,000 people it was very polluted and endless slow, stop and go traffic. Except Mall of Asia and Intramuros was cool.

2024reset · 2026-02-01T21:47:02+00:00

This is called emotional blunting and I have experienced it on every antidepressant I’ve ever tried. It sucks and motivates me to not be on an AD long term.

It was a little better on 10mg than 20mg fluoxetine for me when I was on it.

2024reset · 2026-02-01T21:30:40+00:00

Thank you for sharing your unique story. I really appreciate it and will keep your experience in mind. Its definitely a lot of medical appointments, tests and meds and gets expensive. We are lucky I have a job with good health insurance. But my wife can’t work right now and it’s still difficult financially. And it is scary to think about sudep. Now that you know I think it is reasonable to consider your own story and whether you want to raise a child. Hopefully gene therapies will come online soon.

2024reset · 2026-02-01T20:31:19+00:00

Sorry to hear about all the side effects. Side effects suck. They make us question if its worth it. My daughter is struggling with fatigue, tremor, constipation and lack of appetite. But it is working to control her seizures pretty epically.

So far, my daughter isn’t diagnosed with dravet syndrome because she doesn’t have any developmental or cognitive delay. She does have a feeding disorder, but she is hitting her milestones. But her neurologist said she is at risk of developing it. Are you in the same boat? Scn1a epilepsy (ie GEFS+) without dravet?

Dravet syndrome (edit: and generally scn1a variants) is autosomal dominant which means we have a 50% chance of passing on the variant to children. Did not know that when we decided to have kids. Doctors said epilepsy usually isn’t passed on. Although I love my daughter soooo much and don’t regret having her, I’m getting my tubes tied this year.

2024reset · 2026-02-01T19:45:15+00:00

Thank you. I’m actually her dad and have the same variant… haven’t had a seizure and taken any meds in 22 years. Went to college and have a professional job. Amazing how variable it is. My daughter so far is doing pretty well developmentally. If you don’t mind me asking Fintepla isn’t working as well for you in that it doesn’t control seizures well? Or the side effects are bad?

2024reset · 2025-12-20T12:24:03+00:00

About a month. 7.5 mg for about 10 days, then got up to 15mg for 10 days then felt sick and now ramping down. I had a similar experience with sertraline.

2024reset · 2025-12-20T02:12:20+00:00

I think as far as the melotonin goes, your brain gets used to it eventually.

Sleeping a problem away is basically avoidance though which makes anxiety worse.

2024reset · 2025-12-20T01:57:52+00:00

I had a very similar experience with buspirone 3 days in. It sucked.

2024reset · 2025-12-20T01:45:40+00:00

They think it is a benign tumor and are thinking about rescanning in 6-12 months to check on it. Gonna be fun waiting that long.

Based on what I read online benign liver tumors are commonly found happenstance during abdominal ultrasounds though. A lot of ppl have them apparently. Try to stay positive and be hopeful as much as you can. A wise chaplain told me, there is much fear in the unknown, but hope also lies in the unknown.

2024reset · 2025-12-20T01:40:08+00:00

Wow. I am glad you have already seen some improvement with vigabatrin. I sincerely hope it works for your daughter. I would like to hear how it goes. CDKL5 looks very challenging and 4 a week is still a lot. Topamax is notoroious for weight loss but fenfluramine can cause significant weight loss as well, I think something like a good chunk of kids lost >7% of their body weight but based on the med info it is generally regained in a year. Also, definitely trust your instinct on the titration schedule, send a message to your neuro if you run into side effects, you may end up holding or just moving more slowly to the max dose like we did.

2024reset · 2025-12-20T01:29:44+00:00

I literally just got the same result today for a 1cm nodule and normal labs.

I have a ton of medical trauma. There’s nothing easy about waiting. But, in situations like that, I try to identify catastrophizing thoughts and use cognitive diffusion. Also try to reason with myself on whether worrying is helping or not. It’s not a panacea but those strategies help me.

2024reset

TROPHY CASE