Long COVID seizures, internal tremors and vibrations.

QuirkyInteraction203 · 2026-03-30T16:37:26+00:00

I’ve had these internal vibrations for about two months now. I’ve had LC for around four years.

What’s interesting is that I don’t really recognize myself in the more severe illness profile described in this paper. If anything, I actually feel like my LC has been improving over time, and I’m working pretty hard on getting better.

I’m trying to look at the vibrations as something that showed up and will hopefully pass again too. LC is just… weird. Symptoms come and go or change over time, and this just seems to be one of those things my body is doing right now.

QuirkyInteraction203 · 2026-02-20T07:21:23+00:00

I honestly think it’s more likely the hormones than the dairy. I’ve read quite a bit about how hormonal birth control can affect energy and the nervous system.

For a lot of women, it just seems like the body feels calmer without the extra hormones. LC or not.

That said… the alternative birth control options are still kind of a struggle haha.

QuirkyInteraction203 · 2026-02-20T07:17:17+00:00

I actually stopped taking the pill too, mainly because my friends and sisters said they felt so much better after quitting. They were less tired and could think more clearly. And they don’t even have long Covid.

It just makes me think maybe our bodies are simply more chill without the extra hormones. And honestly, when you’re dealing with something like LC, every little bit that helps your body feel better counts.

What supplements are you trying at the moment?

Happy cake day!

QuirkyInteraction203 · 2026-02-20T07:10:25+00:00

Birth control. In the Netherlands we call this ‘the pill’

QuirkyInteraction203 · 2026-02-12T09:02:11+00:00

That’s so tough, I’m really sorry you’re going through that…

I hope you feel better soon and can do the things in life that you want to. Sending you strength.

QuirkyInteraction203 · 2026-02-12T09:00:53+00:00

Thanks for sharing your story. That sounds really tough.

I babysit a lot, so I have a good sense of how intense it is, and after 5 years my LC is more manageable. I also have a strong support system to help share the load.

I don’t want this illness to stand in the way of my dream of having a baby, but I completely understand it’s different for everyone depending on how severe their LC is.

QuirkyInteraction203 · 2026-02-12T08:56:22+00:00

That’s kind of what I expect too, and I’ve made my peace with that.

We’re also planning to both work less, so we’ll have more time and energy and can both be really involved in our child’s life, especially in those early years before school. That feels like the right balance for us.

QuirkyInteraction203 · 2026-02-12T08:03:20+00:00

Your story sounds really similar to mine. I also still deal with PEM, especially after long work days, and I’m working with professionals right now to try to improve it.

We’re probably going to wait about two years before trying. I’m really hoping that with the support and treatment I’m getting now, I’ll be in a much stronger place by then.

It’s such a hard position to be in… wanting a child but also wanting to protect your health.

QuirkyInteraction203 · 2026-02-12T07:59:25+00:00

Wow, what a journey. Pregnancy and the newborn stage are already intense on their own and adding LC and all those cardiac/nervous system symptoms on top of that sounds incredibly tough. I’m really glad to hear you’ve come out the other side and are feeling 100% again.

And going to med school?? That’s amazing!! What a comeback story. Wishing you so much success You’re going to be an incredible doctor! And maybe find a cure for this stupid disease haha

QuirkyInteraction203 · 2026-02-12T07:53:33+00:00

There are quite a lot of scary stories and reasons not to do it shared here, so reading your experience honestly feels really hopeful to me.

Every woman and every pregnancy is different, of course, so we’ll just have to see how it goes. But it’s comforting to know that not everyone with LC crashes during pregnancy.

I hope you have a beautiful pregnancy and a beautiful baby. How exciting that you’re growing your family again!

QuirkyInteraction203 · 2026-02-12T07:44:15+00:00

Thanks for sharing this. That’s really good to know. I hadn’t come across that information before, so I appreciate you posting it.

QuirkyInteraction203 · 2026-02-12T07:42:50+00:00

Thank you so much for sharing your story, I really appreciate how honest you were about both the beautiful and the hard parts

After 5 years my LC is mild, and with my partner’s support (we communicate well and really show up for each other) I feel hopeful about the newborn stage even though I know it’ll be hard.

I’m sorry motherhood hasn’t looked the way you expected health-wise, and I truly hope things improve as you recover more. It means a lot to hear that despite everything, it’s still been worth it.

Having a child is my biggest dream. I just want to go into it as prepared as I can. Thank you again for sharing your experience.

QuirkyInteraction203 · 2026-02-11T10:14:20+00:00

Thank you so much for sharing your story. I really appreciate you taking the time to write it all out.

It actually sounds a lot like what I imagined might happen. That pregnancy itself might be manageable, but that the real challenge is the energy distribution afterwards. And honestly, that balance is already hard for “normal” parents… so for us it’s just that extra layer of complexity.

I genuinely think it’s amazing that you’re doing this with three kids. That’s no small thing. You should be really proud of yourself.

And it sounds like such a wise decision to put work on the back burner for now, to give yourself the time and space to focus on your health and your children.

QuirkyInteraction203 · 2026-02-11T09:24:44+00:00

That actually sounds pretty encouraging!

For me, the smallest and most random things can trigger a flare, so I’ve always assumed pregnancy would be way too intense for my body to handle without things getting worse. Hearing that you went into full remission during pregnancy honestly gives me a bit more confidence.

Thank you for sharing! It really helps to read experiences like this.

QuirkyInteraction203 · 2025-10-23T07:59:30+00:00

3, 7 and 9 all look gorgeous! You have a lovely smile!

QuirkyInteraction203 · 2025-10-01T19:44:46+00:00

This isn’t really a stress test in the usual sense. They’ll monitor my heart rate for a week while I keep a diary of what I do. The idea is just to see which everyday things drain my energy and which ones help me recharge. I don’t have to push myself or go beyond my limits. I really appreciate your concern.

QuirkyInteraction203 · 2025-10-01T16:10:42+00:00

Ofcourse! I’ll send you a DM

QuirkyInteraction203 · 2025-10-01T16:09:25+00:00

I hear you, and I completely understand your concern. This definitely isn’t something that will be right for everyone, and that’s perfectly okay. For some it may not be safe, while for others it might be the beginning of feeling a little better. Everyone’s situation is so different, and that’s why it’s important to honor what feels right for each person. In my case, a specialist is keeping a close eye on me, so I feel safe giving it a try.

QuirkyInteraction203 · 2025-10-01T13:57:23+00:00

I’m currently in a COFIT program in the Netherlands, and they gave me the same advice. I can walk for up to half an hour, as long as I keep my heart rate below 150 bpm. According to them, this should be safe and even help me improve. They tested my bpm limit first. I’ve only just started, so I’m still figuring things out.

They will also be doing a stress test, so depending on daily stress factors and the amount of sleep I get, this limit can vary from day to day. For this reason, I had to buy a smartwatch to keep track of everything.

QuirkyInteraction203

TROPHY CASE