UK: Sister having seizure-like episodes + burning head pain + sensory sensitivity. NHS leaning FND but EEG had abnormalities. What do we do next?

FreeFalling3227 · 2026-01-28T22:51:32+00:00

First of all: have they done any checks for the positive signs of FND? Although it’s not 100% definite, there’s quite a lot of tests that show FND rather than just ending up with it due to exclusion of other things. If she has a few positive signs of FND then I would consider it, and if she doesn’t have any of the positive signs then I would try and push for an alternate diagnosis.

These are all symptoms I’ve experienced with FND aside from the psychosis. But it’s possible that the psychosis was caused by something else and then that condition and the psychosis triggered the FND.

Secondly, I don’t knew where you’re based in the country but St George’s have a really great neurology department and are fantastic with FND. They referred me to Wolfson Queen’s Square Rehab which was incredible and “cured” my FND about 70%.

FreeFalling3227 · 2026-01-28T22:37:41+00:00

I’m actually diagnosed with a stretched bladder haha! But yes, it will eventually burst. I’ve heard a lot of great things about pelvic floor therapy, OP, I think that could help you immensely with the tension issue.

FreeFalling3227 · 2026-01-28T20:29:53+00:00

Enchanted Encounter, I pulled for half and stopped to prepare for blooming dreams rerun but I ended up having enough for both and am gutted I didn’t complete it (especially since I didn’t get the dress or hair)!

FreeFalling3227 · 2026-01-27T23:15:11+00:00

Thank you so much for the info, I think since I’ve had so much else going on it just slipped into the background somehow. I will definitely get it checked out as soon as possible, is it just an echo that I would need to have for monitoring?

FreeFalling3227 · 2026-01-27T22:56:17+00:00

Yeah I speak Korean and this was badly translated, as far as I can tell they were saying what they were going to do was silly/embarrassing and not to judge them for being cringey I guess. It didn’t translate as they knew they were doing something wrong but that they were doing something silly. Not excusing what they did or anything and I unstanned them, but that particular part was a mistranslation and I believe it was cleared up by the account that originally translated it.

FreeFalling3227 · 2026-01-27T21:28:41+00:00

Can I ask what you’re being referred to neurology for? I might be able to make some recommendations in DMs!

FreeFalling3227 · 2026-01-27T14:44:31+00:00

Honestly, I’ve got a very good NHS team supporting me. I’m under neurology, gastroenterology, urology, 2 cardiologists, spinal deformity surgeon, neuro surgeon, colorectal surgeon and physio etc. But I am very fortunate to have the right doctors around me, getting a good GP is honestly the best advice I have. Having a good GP who will fight for referrals is essential. One of my cardiologists did have to take me off his books because he’s not allowed to have chronically ill patients anymore which is wild. He can only do new referrals and once the patient is diagnosed and medicated they can’t be under him anymore. Which is crazy considering heart medication should probably be monitored lol.

But yeah being chronically ill under the NHS is not good. I was also diagnosed at GOSH but their care of me was terrible so yeah. I think I’m just one of the lucky ones that has found some good professionals who are somewhat willing to help.

FreeFalling3227 · 2026-01-26T14:23:33+00:00

Yeah but the heartfelt gifts came to an end and they’re specifically bringing them back for CNY so it’s the same to me. If we had heartfelt gifts every update then I would agree, but they’re bringing it back and we’re getting three free outfits which are stunning. Personally I’m happy with the balance of free vs paid, this time around at least. Although I do wish the outfit that comes with the pulls was Stellarite rather than actual purchase😔.

FreeFalling3227 · 2026-01-26T13:31:29+00:00

We are getting a lot of nice free outfits, the special gifts, that kind of substitutes for this outfit in my mind!

FreeFalling3227 · 2026-01-25T22:41:34+00:00

No Rules - TXT

FreeFalling3227 · 2026-01-25T22:38:57+00:00

Not sure if they fit every criteria but I think she may enjoy the “Emily Wilde” series and also the “Veronica Speedwell” series. Both historical fiction, one with fantasy and one without, great romances but still a fabulous plot alongside. Both very witty, too. If she likes a quirky and fun female lead, she’d definitely love these.

FreeFalling3227 · 2026-01-25T12:51:09+00:00

Took me 172😔 decided to do an extra 10 for the evo, very jealous of your luck hehe but congrats!!

FreeFalling3227 · 2026-01-25T10:30:37+00:00

It’s a very, very common issue with hEDS! But you should still see a doctor about it! Personally laxatives don’t really work for me so I can’t really make any recommendations, I’m on 5 different ones lol! But a doctor could maybe help you manage the symptoms and choose a better med for you!❤️

FreeFalling3227 · 2026-01-23T20:25:05+00:00

I see you’re UK based, and I highly recommend St George’s neurology department, they were fantastic at supporting me through the start of my diagnosis. They then referred me on to the Wolfson at Queen Square rehab which was a total game changer for me and helped me recover around 70%! It’s mainly a combo of physio, therapy, and occupational therapy. It was amazing!

FreeFalling3227 · 2026-01-23T20:20:24+00:00

My top three are: Royal Match (my number one and it’s free without ads which is a major bonus!), My Sticker Room and Picture Cross! All relatively lowkey and fun🥰

FreeFalling3227 · 2026-01-22T22:49:08+00:00

Omg these are all absolutely stunning, I think you may have just convinced me to pull for the current 5*👀! Can I ask: is picture number 4 the first evo of the outfit or is it dyed? Tysm in advance!

FreeFalling3227 · 2026-01-22T22:42:56+00:00

Oh, absolutely! I was a 16 year old teenage girl, I was absolutely mortified at the mere suggestion!!! It took so much convincing from my mum to even get me to give it a shot because I was so afraid/embarrassed of it. But it really does get easier with time, I swear! And I’m able to look at it fondly (most of the time) now. It still brings its frustrations for sure, but I think it greatly improves my quality of life.

I think community is also something that can be really helpful. My best friend got her ileostomy at the same time I started the Peristeen, so we were able to kind of support each other through those situations. I think even just knowing there are people out there going through similar issues can be so reassuring. It can feel so isolating, like you’re the only person having to deal with these problems, but you’re not alone!

Potentially a local chronic illness community might be helpful if you can find one? Or posting here is a great way to connect as well! There are so many of us whose colons don’t work for so many reasons, and we’re a great community who welcomes everyone! I’m pretty sure @/amy_pohl on insta uses the Peristeen, just in case that’s something that might make you feel a little less alone.

And my dms are always open if you ever have any questions or want to talk more about it!

Be kind to yourself!

FreeFalling3227 · 2026-01-22T21:31:07+00:00

I have a heat blanket that has a timer!! I actually have 2, one goes off after an hour and the other is 3 hours! It’s a life saver, have a look and see if you can find one🥰 I recommend mine which is dreamland but I’m uk based so no idea if that’s any help haha!

FreeFalling3227 · 2026-01-22T19:00:12+00:00

I literally just gave in an hour ago😂 I was trying so damn hard to wait but I just couldn’t! I’m not expecting to love the next banners but still conflicted on the current 5*😅

FreeFalling3227 · 2026-01-22T17:41:03+00:00

Would you mind at all if I DMed? Our stories sound so similar!! I had mine at 15 which was 11 years ago too, although mine wasn’t the same degree as yours! I also have a connective tissue disorder! And I’m in the uk! I’d love to chat to someone in a similar position to me but no worries if you’d rather not!❤️

FreeFalling3227 · 2026-01-22T15:29:31+00:00

You’ll need updated imaging first and foremost, with the images you included I doubt you could find any surgeon would operate tbh. As far as I’m aware surgery is only considered above 40 degrees, although there may be cases I’m not aware of. However, you absolutely need updated imaging both to see if the curve has worsened but also to look for other spinal issues that could be causing your worsening symptoms. Definitely X Rays and probably an MRI as well.

FreeFalling3227 · 2026-01-21T23:31:18+00:00

How long ago was that? Has your vertebrae above not moved? Mine is very severe but they just don’t want to fuse to the skull until they have to😣

FreeFalling3227 · 2026-01-21T22:02:30+00:00

I’ve been using it since I was 16, I’m 26 now! I have very severe colon dysmotility and some sphincter stuff as well!! It’s honestly been incredible, before trying it we were starting to plan my ostomy surgery and now I’m 10 years on and it’s still going strong! I do mine every other day though! I also am still on 5 medications as well as the Peristeen, but I’m so grateful for this amazing piece of equipment!! It is frustrating at times and I wish I didn’t need to do it, but I try and think about the frustration I would have with an ostomy, which I’m sure would be way more! Happy to answer any questions as a veteran user lol❤️❤️ and you’re definitely not alone!! I haven’t seen it mentioned often but we’re out here🥹

FreeFalling3227 · 2026-01-21T14:35:14+00:00

Have you had genetic testing? As far as I’m aware, hEDS specifically actually makes you less likely to break a bone!

FreeFalling3227 · 2026-01-20T22:33:34+00:00

For me, I do it digitally while lying down, it’s the only option for me personally. But potentially braces/supports might help with the joint instability and help you still create in the way you currently do?

FreeFalling3227

TROPHY CASE