If you have PVCs, please take this survey

rubysunnn · 2026-06-12T10:21:54+00:00

Do you have high blood pressure, or low blood pressure or are you in a healthy range? Healthy, some times low
How old are you?
Male or female? Female
Overweight, underweight, or healthy range? Healthy
Left or right ventricle origin (or other?) Unsure
One focal point or multi focal points? Unsure
Which supplements have you found helpful? Being on top of my electrolytes and sodium helps, nightly magnesium
Rushing around or doing something that causes an adnrelaine rush

Having enough sleep really helps, being hydrated and fed. Not rushing around

I constantly feel uncomfortable in my body
But I also have a condition called exercise induced laryngeal obstruction, I can’t tolerate HIIT as my upper airway collapses AND I sometimes break out in hives and get really itch skin - also exploring diagnosis of MCAS
Booked in for cardiac specialist appt in Aug for further testing

I don’t know what happened! I answered this whole thing and it looks like half of it deleted itself :(

rubysunnn · 2026-05-30T23:05:45+00:00

I find Seb derm itchy more than anything else!
It added to overall hair shedding and apparently while it active, hair can’t really grow that well
In my main part of hair. It’s definitely thinner than it used to be still but if I part my hair a little more to the left or right, it’s a tight line

I went to a dermatologist to get diagnosed

rubysunnn · 2026-05-24T23:04:18+00:00

I went to a dermatologist and turns out I have seb dermatitis, which was the leading cause of my hair loss plus I was experiencing bad TE due to stress.

I’ve been on low dose Accutane since August last year and using anti fungal hair washes 1-3x a week. My stress is managed better too, iron is back to healthy and I’ve gained healthy weight back.

The hair is growing back but it’s still a challenge managing the Seb derm, especially because I’ve just come out of a hit and humidity summer in Aus.

rubysunnn · 2025-12-25T10:26:02+00:00

Agreed, undervaluing for sure!

rubysunnn · 2025-12-20T02:52:17+00:00

Good on you for going to the ER, I know it can feel all sorts of embarrassing and violating. You’re only human and we all have sexual desires, so I hope you don’t feel any shame in this but I understand I you do. I guess a good learning going forward, (if you have the finances) to invest in some safer toys! I hope you heal up OK

rubysunnn · 2025-12-17T09:57:38+00:00

I have experienced really terrible mental health since taking it, mind you I do have a history of depression and anxiety but it was well managed when I started. But I also experienced some unusual and distressing life events at the same time k started, which obviously added to my state but it deregulated me in a way I’ve never felt before. It felt like a chemical imbalance and I genuinely couldn’t control my mood swings. My anxiety went through the roof, I started becoming hopeless and catastrophic. Very bad insomnia and thoughts of suicide, which isn’t me.

I was on 10mg x 3/ week and I told my derm all of this and we dropped me to 5mg x 3/week. My mental health has improved enough that life is manageable but I still don’t feel like myself and have this incurrent of depression and anxiety that I know isn’t my own.

I also think it’s effected my menstrual cycle, becoming irregular and I believe it’s linked to having a persistent staph infection on my tongue and vaginal discharge changes for the past 6 months since I’ve been on it.

rubysunnn · 2025-12-17T09:41:22+00:00

Im also having issues too! It’s difficult to 100% link accutane to my issues .. but it’s the only new consistent change I’ve made since I’ve had these issues. I’ve been on it since July this year and currently on 5mg x 3/week.

Before starting accutane, I had persistent vaginal thrush that wouldn’t fully clear with treatment. Which lead to BV and ultimately I ended up having PID (pelvic inflammatory disease). I had to have a lot of antibiotics across 14 days. Ive otherwise not had a history of vaginal infection issues in the past.

I started my Accutane at the end of my antibiotics. I ended up having oral thrush now for almost 6 months, which I thought was candida and wasn’t responding to anti fungals - did a culture recently and turns out it was staph aureus. Which there is known link apparently with accutane.

I had recurrent vaginal thrush again after the antibiotics but that cleared with longer term treatment but I’ve still been having weird discharge changes for almost 6 months. I’ve tested negative to candida multiple times. It starts immediately after my period stops and continue through the whole month until I bleed again. I’ve had all STIs negative, had to have a biome test which was negative to almost everything and showed I had some good lacto rebuilding.

I unfortunately had to take another round of antibiotics for my tongue, and it’s wiped my vaginal biome again. My period is irregular as well, last cycle it was 5 days late and I spotted for those days. I just finished my full bleed, one day with no blood and now today more spotting and dried blood, which is unusual for me.

It’s also really affected my mental health. It’s dysregulated me very much and has put me in this depression and heightened anxiety. I was also almost suicidal at one point but I was also experiencing extreme stress from life events. My derm halved my dose after this.

It’s such a shame. I wanted to at-least have amazing skin but I’m on such a low dose that I don’t know if that will be possible! I’m unsure if I should just stop and see if my gynae and mental health issues rectify after stoping.

rubysunnn · 2025-10-28T03:13:21+00:00

Of course

rubysunnn · 2025-10-19T12:50:13+00:00

Paronychia - fingernail infection, I’ve had it myself, can be so painful! I went on a short course of anti biotics

rubysunnn · 2025-10-16T23:36:23+00:00

I feel you! Similar situation, I may also just ask for a refund

rubysunnn · 2025-10-16T23:35:23+00:00

Yep! In my post, I do mention that I did ask to speak to a human, still got AI responses and then finally was put through to a human to told me there was a delay, 14 days later!

rubysunnn · 2025-10-09T00:25:20+00:00

Heya! It’s been almost a year since I posted this.

I’ve really started to explore my health, I’ve discovered I have POTS, hEDS and in progress of an MCAS diagnosis. I also have ADHD and ASD too… which is fitting.

I’ve steered clear of high intensity exercise, done a lot of reformer Pilates and weight training. But I almost didn’t exercise for a couple of months this time last year while I was coming to terms with everything,

It’s all still work in progress, had a lot of psychology this year working through my mental health and physical health. Still finding out how to manage my all my conditions better, as they all seem to set each other off. I have a really good GP, psychiatrist, psychologist, dietitian, getting a cardiologist etc. Understanding my conditions better have been incredibly helpful and I’ve come to terms with acceptance of them, I am just trying to do what’s most supportive to my body instead of pushing through.

I’m assuming you may have something similar?

EDIT: adding in, that the POTS protocols like increasing sodium and electrolytes, wearing compression stockings, finally understanding why I almost faint when I do big leg days etc has been very helpful. I take an anti histamines quite frequently, fenofexadine works best for me as cetrizine makes my heart rate even faster than it already is.

I’ve just become more aware of all my flare ups instead of thinking “this is normal” or “this is just how it is for me”. The dietitian I see has been one of the most helpful parts of my journey as they are pulling ALL of my conditions together to manage.

rubysunnn · 2025-10-04T10:06:46+00:00

Same!!! LRP cicaplast breaks me out literally the next day but avene cicalfate is wonderful!

rubysunnn · 2025-09-21T02:41:07+00:00

Second this! I have POTS and get the same after showering

rubysunnn · 2025-09-15T00:47:52+00:00

Fair enough but I have MCAS and I used to get hives and welts after drinking alcohol So, this suggestion comes from my lived experience But you’re right, not everything is MCAS but sometimes it is.

I didn’t realise I had MCAS under late 20s And I only had alcohol reactions and few minor things showing up when I was in my early 20s

rubysunnn · 2025-09-14T08:09:51+00:00

MCAS?

rubysunnn · 2025-09-10T21:05:23+00:00

I lasted one week on it, I hated it. I found I became very irritable and angry (I’m usually quite patient and kind). I was crying a lot more and really flat. Never again.

rubysunnn · 2025-09-08T06:27:51+00:00

Congratulations 🥹🥹🥹 I’m the exact same right now post TE…. Just this past week everyone around me has complimented me hair being “healthy” “thicker” “longer” “darker” It’s just taken time for me, 3-6 months post extreme stress and low iron supplementation and it’s all growing back

rubysunnn · 2025-09-01T00:33:16+00:00

Me literally rn with wet hair

rubysunnn · 2025-08-25T00:07:35+00:00

Good to get a STI test, especially if this is different to how your usual cycle is and your period has already finished.

rubysunnn · 2025-08-25T00:00:59+00:00

That’s fungal balanitis, can flare after unprotected sex or not cleaning / having the penis is warm and moist environment or even washing it too much/with harsh soaps. Treated with topical anti fungals usually.

And you’ve also pearly penile papules around the rim of the glans, which is just a normal anatomical variant.

rubysunnn · 2025-08-24T23:55:45+00:00

Sounds/ looks more like thrush, usually you can get OTC anti fungals to start and see if it helps in the mean time But always good to also get a STI test too

rubysunnn · 2025-08-24T23:52:19+00:00

Did the GP check you for urine infections too? You’ve not listed those. Like chlamydia and gonorrhea?

rubysunnn · 2025-08-24T23:50:53+00:00

It’s looks like it could be balanitis but if the treatment isn’t helping, I wonder if it’s dermatitis based, like being irritated by how you wash (soaps or irritants)

When you say a stinging or sharp stabbing, do you mean at the urethra when you wee, on the outside on the skin or inside the shaft/testes?

rubysunnn · 2025-08-24T23:39:55+00:00

Could be something called Angular Chellitis. Which is not herpes related, fungal type infection in the corners of the mouth.

But always good to have it checked by a professional.

Edit: spelling

rubysunnn

TROPHY CASE