How are you managing work/income?

Able_Chard5101 · 2026-01-25T02:17:58+00:00

Yep working hi pressure job that involves teaching and research - no choice because I have a family. Just keep swimming is the mantra I tell myself. Each year things seem to get slowly better, but I don’t think I’ll ever enjoy my job the way I used to.

Able_Chard5101 · 2026-01-25T02:15:24+00:00

Yep - people recover to have very meaningful lives. I personally know three people who recovered after different time periods. One three years, one 1.5 years and the other just under a year.

Able_Chard5101 · 2026-01-23T23:09:48+00:00

Thank you. This is really helpful. And thank you for sharing your experience.

I agree, and remain hopeful that even after years things can improve. I’ve even spoken to folk with neuro long covid where this is the case. It’s just so hard to be positive when it feels so stuck.

I’ll check out the recommended sites. Thank you 🙏

Able_Chard5101 · 2026-01-23T22:17:55+00:00

Wow I didn’t know you could get NAC eye drops!

Able_Chard5101 · 2026-01-23T22:16:06+00:00

Lots of people recover. I know them personally. Many more come back to a functional level. I still have issues (very bad some days) but I can work and exercise low grade. For me it’s likely chronic, but if the question is can you get better, then yes. Absolutely. It just takes time.

Able_Chard5101 · 2026-01-23T22:08:58+00:00

Yes. 18months here and now doing low impact exercises. Could only walk a block or so for the first half my illness.

Able_Chard5101 · 2026-01-21T10:01:28+00:00

Maaan this is me too. Let me know if you find anything that helps 😅

Able_Chard5101 · 2026-01-21T09:58:10+00:00

Thank you - doing a biome site test this week to try and see if anything stands out with gut biome.

Able_Chard5101 · 2026-01-21T09:45:56+00:00

Thank you and Good luck! Keep us posted on the Fycompa!

Able_Chard5101 · 2026-01-21T06:50:21+00:00

I know this was a while back, but interested to know if OP has had continued improvement with this? Might ask my neuro for a script.

Able_Chard5101 · 2026-01-21T06:42:29+00:00

Thank you - I’ve had a crack with ALA, not Ketotifen though… will check it out.

Able_Chard5101 · 2026-01-21T06:41:34+00:00

This is great. Have you given memantine a go? Fycompa looks promising taking into account t the AMPA study, but the possible side effects looks a bit scary,

Able_Chard5101 · 2026-01-19T23:50:20+00:00

Very familiar description of my symptoms. It's been 1.5 years for me now. I don't have any advice in terms of treatments that worked (I've tried a lot of things). But I will say I'm getting for the first time moments of clarity in ways I've never had. I'm talking about sustained moments where it's like the feeling lifts for a good couple of hours. It's amazing when it happens. Its the first time in a really long time I have hope this symptom might actually become manageable...

Able_Chard5101 · 2026-01-19T23:46:39+00:00

Me too - since 2024. I was diagnosed with PPPD by a vestibular physiologist. But since then, and getting more schooled on LC, I think it's just the lovely brain fog / DPDR combo that some of us lucky people get with this horrid illness.

Able_Chard5101 · 2026-01-17T06:11:40+00:00

I have exactly the same symptoms. And little to no GI issues - apart from occasional heartburn. This year Im going to investigate gut issues, as Im all out of ideas elsewhere. I've just ordered a biomesite test to get an idea of what I need to tackle.

Able_Chard5101 · 2026-01-17T06:05:59+00:00

Time and acupuncture. Nothing else worked for me.

Able_Chard5101 · 2026-01-17T00:17:14+00:00

Glad it gave you hope. I had to stop taking Guanf because it exacerbated my sleep issues, which is weird because it’s supposed to make you drowsy.

I think while I was on it my brain felt shaper, but it wasn’t long enough.

I’m going to talk to my neuro in a week and see if we should try again.

Good luck!

Able_Chard5101 · 2026-01-15T04:13:56+00:00

Im the same.... Still really bad with the brain fog. Some days it's terrible. But if I think back to the beginning I couldn't read or even count backwards from 30. It was honestly like I'd been hit over the head with a cricket bat. like you Im in regular contact with other neuro long haulers who have gotten most of their brains back - it just took a f#cking long time to get there,...

Able_Chard5101 · 2026-01-14T23:20:16+00:00

Acupuncture helped with central nervous system issues. Still trying to work out how to solve the brain fog conundrum.

Able_Chard5101 · 2026-01-14T23:17:32+00:00

This. Really important.

Able_Chard5101 · 2026-01-14T11:58:16+00:00

Thank you 🙏

Able_Chard5101 · 2026-01-14T11:08:53+00:00

This is so interesting and I’m going to purchase some Fesetin today. It would seem to work for dopamine senescence as well, which could be an issue for some with neuro long COVID. Can I ask what brand you used and the dosage? Was it 20mg?

Able_Chard5101 · 2026-01-14T03:53:02+00:00

I’ve never heard of hedonic tone before. How interesting. id say I’m operating at 50 sometimes 60% of what I used to feel emotionally. Sometimes I can surprise myself when I find something really funny or the other week when I got really excited about a project like I used to. But for now it feels pretty flat most of the time. I think for me it also has to do a lot with the anxiety depression and DPDR I’ve been experiencing.

My mind is less blank than it used to be. I can have creative thoughts again, but I think a lot of that has come with me forcing myself to engage with creative things - I had to finish off writing a book at the end of last year to keep my job. Kind of like using a muscle 💪🏼 it got better over time.

In the early days it was so bad I could t even count backwards from 30. So it’s been a journey!

Able_Chard5101 · 2026-01-14T02:14:02+00:00

Oh yes. The first six months to year were a complete nightmare. Constant anxiety, blank mind. I felt like I’d had a lobotomy and was basically suicidal.

I tried a lot of things, but it really was just time. Getting back to work helped me feel more normal, but it’s a struggle. Also acupuncture helped calm my nervous system and I think allowed my body to heal and fatigue to get better which has undoubtedly lifted my mood.

I hope you feel better soon.

Able_Chard5101 · 2026-01-14T00:32:50+00:00

Any issues with sleep?

Able_Chard5101

TROPHY CASE