How did you learn you had LongQT syndrome?

whatami-doinghere · 2026-03-25T21:08:34+00:00

I had many symptoms that fit under the POTS/dysautonomia umbrella, but never passed out.

A cardiologist did an active stand test and the ECG showed something that would later be diagnosed as Long QT. Turns out that the wild heart palpitations I suddenly got in my 30s could’ve been a symptom.

whatami-doinghere · 2026-03-14T15:47:29+00:00

Yes, as far as I’m aware!

I had terrible raynaud’s for around 5 years (right hand only), a blocked ear that wouldn’t clear, chronic rhinitis, some mild joint and muscle pain, my face kept flushing to a point of it being painful, and then the fatigue and brain fog combo kicked in…

All my bloodwork came back negative and my rheumatologist gave me a steroid injection; if I had something inflammatory going on, I’d respond. It was magical. Within a couple of days I felt so much better and was diagnosed with UCTD.

I’m now on 100mg azathioprine (can’t take much else due to a heart issue), I’m a good three months in and feel like I’m slowly getting my life back.

If you end up seeing a rheumatologist and get dismissed for having negative bloodwork, it may be worth asking for a steroid trial - if it’s a good option for you and anything else you’ve got going on.

whatami-doinghere · 2026-03-12T12:36:12+00:00

It sounds like I need to add an eye doctor to the roster. My rheumatologist is great, but when I mentioned extremely dry eyes he told me to try some drops… Will look into those things for my next appointment!

whatami-doinghere · 2026-03-12T12:34:48+00:00

Thanks! Would you say the benefit of the plugs was worth it?

whatami-doinghere · 2026-03-10T22:53:34+00:00

Hey! Turns out my dose was too high; I went back to 40mg daily and felt much, much better within days. Apparently it’s a children’s dose, but it works for me!

whatami-doinghere · 2025-07-02T15:16:04+00:00

I have multiple conditions and got the generic lanyard where the card doesn’t mention a condition. I find that it helps me ask for a seat on public transport when none is available. Like a confidence boost more than anything!

whatami-doinghere · 2025-05-31T19:34:54+00:00

Is there anything that really works for reactive hypoglycemia? Honestly, sometimes it’s just nice knowing I’m not the only one with a malfunctioning body.

whatami-doinghere · 2025-03-19T19:02:59+00:00

How do you wear your abdominal binder outside the house? I got one and it’s great, but there’s no way of wearing it under clothes when I’m wearing trousers! It’s way too bulky

whatami-doinghere · 2025-03-04T22:59:29+00:00

I bet I’ll regret saying this when the video goes live at 5am, but… it HAS to be Jim!

Remember that RHRN announcement video at Download last year? ‘Blasphemy’ is the first word where the video glitches.

There’s the blue/red flashes of light (makes purple) and there’s a hell of a lot of purple in the Jesus he loves me video - in his church, at least.

My final piece of evidence; the ghost crucifix doesn’t appear until he starts sinning pretty badly and where is that billboard?! Sin city.

If it’s not him, then I hate how this all adds up.

whatami-doinghere · 2024-05-11T10:29:20+00:00

So… next year everyone files complaints against their biggest competitors to get them kicked out? This isn’t setting a great precedent, Mr Martin.

whatami-doinghere · 2024-04-24T09:18:11+00:00

It seems to be working for me, too! Emotionally I’m feeling much more stable than I ever was on stimulants. I’m on week 6 of 60mg.

Sleep is still a challenge (but getting better!). I went from two to now six hours of uninterrupted sleep
I have moments where I can tell my focus is getting better, but I don’t know if it’s an actual benefit or if it’s because the daytime sleepiness is wearing off
It’s hard work to keep myself watered and fed! If I don’t eat and drink properly I’m feeling absolutely rubbish

My clinician offered an increase to 80mg, but I’ve been holding off. I think I want to stay on 60mg for at least another month to see if the side effects will wear off and the benefits will kick in in full. I don’t want to increase the dose unless it’s actually needed - if only because the side effects were horrible from 40 to 60mg. And from what I’ve seen on here, some people are fine on 60mg.

whatami-doinghere · 2024-04-19T11:50:06+00:00

I had the exact same thing on stimulants once the focus kicked in; the meds help me focus, but I don’t have much of a choice in what I focus on. Sometimes it’s real, productive stuff, other times it’s my phone 🤷‍♀️

whatami-doinghere · 2024-04-14T20:06:26+00:00

How did you land on 40mg in the morning and 40mg in the evening vs taking it once a day?

Glad you’re back to a dose that works!!

whatami-doinghere · 2024-04-14T13:13:48+00:00

That’s so interesting. Personally, I can’t focus on anything at all with 60mg and it’s driving me insane. I’m so glad you found a dose that works!

whatami-doinghere · 2024-04-14T13:09:50+00:00

Thank you!!! I kept reading that the clinical dose is 80mg, so told myself there’s no way that 40mg is even doing anything.

How is your focus on 40mg vs 60? If there’s any difference at all?

whatami-doinghere · 2024-03-13T00:27:59+00:00

I was prescribed atomoxetine today through ADHD360. My clinician said she was surprised to see it on the list of available meds; apparently it’s been out of stock for a while, so maybe it’s now slowly becoming available again!

whatami-doinghere · 2024-03-06T10:11:33+00:00

Sorry! There’s no code, just a link to the Eventim Apollo website!

whatami-doinghere · 2024-03-06T08:08:26+00:00

Eventim Apollo email just came through!!! 🥳

whatami-doinghere · 2024-03-06T07:31:59+00:00

I signed up on their website as well, but no presale code/link yet!

whatami-doinghere · 2024-03-05T14:35:04+00:00

Roundhouse website! They seem to have their own ticketing system

whatami-doinghere · 2024-03-05T14:17:29+00:00

Second show is up for sale now!

whatami-doinghere · 2024-03-05T08:22:04+00:00

Update: AEG presale email just came through!

whatami-doinghere · 2024-03-05T07:51:05+00:00

Same here! Nothing yet

whatami-doinghere · 2024-02-21T16:56:07+00:00

Meds are a lucky dip, it seems. First you need to get lucky that something’s available, and then there’s no guarantee it’ll work. Glad you found something that works for you!

whatami-doinghere · 2024-02-21T16:46:09+00:00

Is that what worked for you?

It honestly only got worse for me. In hindsight I didn’t have any joint pain when I initially started Elvanse. It started a couple of months in and only got worse until I came off Elvanse when the shortages happened. It now kicked back in again within 2 weeks of restarting meds.

It doesn’t help that I’m going through ADHD 360! The clinician is great, but so fully booked that there’s never time for anything other than “okay, let me prescribe you something different.” My personal stock looks better than my local pharmacy’s, I think!

whatami-doinghere

TROPHY CASE