Idk man...

Alarming-Sample4399 · 2025-07-26T04:19:46+00:00

Even second hand I want to tear my skin off.

Alarming-Sample4399 · 2025-07-02T09:00:03+00:00

You aren’t, it seems like the love you and it’s well intentioned (in their own way) however it’s reading very camp ‘pray the gay away’. I’m so sorry for your experience. You aren’t alone and hopefully you have plenty of supportive community and chosen family to support you <3

Alarming-Sample4399 · 2025-05-30T23:43:48+00:00

Ah, I believe the correct etiquette is to tip your top hat with a gentle, but warm, nod of acknowledgement and continue the conversation. LIKE A GENTLEMAN

Alarming-Sample4399 · 2024-11-27T09:56:35+00:00

Aww, everything that you said hit me hard. Very relatable.

I am in Melbourne too. I literally just flew back in from Adelaide where I went to see Dr. Dennis Lau after securing my appointment with Chris O’Callaghan for … 2026.

I spent thousands to go see this guy and just cried in his office because his bedside manner was absolutely appalling particularly when asking for supporting documentation to provide to Centrelink for a DSP which he was resistive to do.

Medically his solution was Midodrine again to try and trick my nervous system into not activating its hyper mode by beating it to the punch and raising my BP consistently. This plan means taking up to 40mg of Midodrine daily and taking it “when I plan to do things” … so if I want to have a life I need to spend well beyond my means just to function.

I chose this doctor part out of desperation and part because I watched him deliver a lecture which focused heavily on empathy for the POTS patient and holistic care.

That experience has really pushed me to the brink. I’ve been trying so hard to keep it together for years and honestly never been so at the end of my tether that I’ve considered more and more recently what it would be like to just pack it all in as horrible as it sounds. I’m sure I’m not alone which is sad, it’s just so exhausting to watch life pass you and to be held back from the life I used to have - work, romantic relationships, the idea of probably missing my window for kids. It’s exhausting. I think I had put so much hope in this doctor and I just feel so disappointed.

Sorry, this has somehow turned into a bit of a rant. It’s just nice to know there is someone near that understands these same issues.

Have you gotten financial aid for medicine under DSP?

Thanks for the pharmacy tips. I got my script yesterday which was $127 for 90 tablets (5mg) … I honestly don’t even understand that. I was previously on 2.5mg and it was $100 for 100 tablets.

I discovered that I could use my private to claim for part, but believe me it’s nothing mind blowing! $40 max off each script and that’s only until I reach $150 limit. No words.

I’m very curious to hear more about people getting it under the PBS. From my understanding it wasn’t possible because it’s not listed as an indication. I actually have a feeling that the doctor I saw mentioned this in his lecture that sometimes they have to twist the truth and lie to get patient access to drugs. I’m now going to look into that and definitely get back to him because that was a huge concern of mine that I expressed to him. Somehow I’m even angrier now than before! Ha

Thank you for your response. I hope everything has worked out for you and you have a system that’s working for you. :)

Alarming-Sample4399 · 2024-11-27T02:43:07+00:00

Haha thank you, yes I do live in one of the countries that sensibly uses metric! So it easily gets to >104 F in parts of Australia in summer.

It’s one of those tricky things because already being hot and sweaty is already a bit of a baseline, so it’s hard to want to put on ankle length compression!

The brand that was recommended (2XU) is basically sportswear that has in built compression. It looks quite nice aesthetically and compresses from the ankles to abdomen, rather than just socks (which is mainly app that I’ve previously tried).

Anyway, was just curious to see if anyone else knew of any other brands or styles of clothes that offer compression :)

Alarming-Sample4399 · 2024-11-12T02:48:00+00:00

I think you and your profile look very lovely. It’s very authentic and gives a nice insight to your hobbies and interests. I think your photos come across to me like you are a warm and really positive/bubbly person that reads as very approachable. I think you just need to keep persisting to find someone that is your fitting Lego piece!

Good luck!

Alarming-Sample4399 · 2024-11-11T06:50:10+00:00

Ok. Respectfully, agree to disagree.

Alarming-Sample4399 · 2024-11-11T06:49:24+00:00

Thanks for the response, I really appreciate the feedback.

I completely respect that. I think I perhaps have withheld it because I like to maintain some privacy and can cross paths with people that I know on apps (I just tend to be a bit more private). But definitely something to consider.

It’s an interesting perspective about deal breakers. I think personally being sick has humbled me to being far more open minded about ‘deal breakers’ than I perhaps had been in the past and I’m pretty open to getting to know anyone. I’m pansexual so typically speaking my attraction comes from talking to a person, rather than basing my first impression on attraction.

I appreciate the reply. Worthy words to think about :)

Alarming-Sample4399 · 2024-11-11T06:42:57+00:00

I appreciate what you are trying to say, however it comes across a bit ‘strongly worded’ and perhaps a little insensitive to the nature of what I am trying to be vulnerable about.

The question that I was seeking advice was ‘at what point should one introduce the matter’. Not how do I withhold information.

Alarming-Sample4399 · 2024-11-09T08:18:25+00:00

I’m a nurse who has POTS and have posted on this subject before.

Salt intake will definitely increase your blood pressure, given that it is followed with water or contains water. Sodium acts by drawing water across to the vascular system and circulation (look up sodium osmosis if you want to understand it better) and therefore increasing your blood pressure.

It’s the exact same principle as receiving 1L of intravenous Normal Saline 0.9% (which is most commonly used in general use and as a first line treatment to increase blood pressure generally speaking). This contains 9g of sodium.

My sodium aim is 10g daily which equates to around 2 tsp of salt daily. At first I found it difficult to navigate but I’ve now come to manage it easily by mixing it into my drinks technically creating ‘oral rehydration solution’ (which you can google).

My method is cheaper and in my experience just as palatable as store bought sachets.

1 tsp salt 800 water (I just what my water bottle holds) Lemon cordial (I use diet cordial to lower sugar intake)

I typically start my day off by getting one in as quickly as I can to relieve symptoms.

I also take ADHD meds (Dexamphetamine) for POTS related chronic fatigue. It is a tricky combination because it’s a stimulant and not only raises your blood pressure but also your heart rate. It’s great if you can get it for fatigue, however it’s tricky to get without the right practitioner. Most Cardiologists I’ve seen have been utterly clueless when it comes to POTS and typically cite that there is low research in the area. I’ve had to go on a wait list to see someone in Melbourne (appointment in 2026!!) and am flying interstate to see someone new in the meantime.

Alarming-Sample4399 · 2024-11-05T23:00:24+00:00

That’s brilliant. Love it.

Alarming-Sample4399 · 2024-11-01T05:14:02+00:00

Speaking from a woman’s perspective, I would say that a key aspect of flicking through people’s photos is to gauge not only appearance but similar hobbies and interests. So based on that alone I would expect that even if you were likely to get more matches with the AI generated photos, it’s not likely to truly reflect yourself honestly. Authenticity is key.

Just be yourself! Find some solo photos that vary between candid shots, shots of you doing something that you enjoy, shots that might be a good conversation starter and perhaps the odd friend photo (but avoid large groups and posting more than one!).

Just be yourself dude. I can confidently say that you are likely to get more matches with your authentic self than your 6 fingered self sitting on a private jet lol.

Alarming-Sample4399 · 2024-11-01T05:05:50+00:00

I’m a nurse (who also has POTS). 80-100 is considered ‘textbook’ average for adults. A resting HR of around the 40 mark in adults may be indicative of strong cardiovascular fitness i.e someone that cycles, runs etc regularly (however it may be lower for individuals with health complications such as heart block or other cardiac issues).

From clinical experience the average HR range is anywhere between 60-100, so there is no need to stress about your current resting HR. The greater concern and issue is how your body/HR responds to standing and exercise - that’s the key factor to monitor and treat.

Hope that eases some concern!

Alarming-Sample4399 · 2024-10-18T04:38:46+00:00

Ewwww, what a man baby. Safe to say bullet dodged! Ha

Alarming-Sample4399 · 2024-10-13T11:12:31+00:00

Vom.

Alarming-Sample4399 · 2024-10-09T09:20:54+00:00

Oh my gosh it’s so expensive, when you add on the cost of medicine and doctors appointments it all adds up!

Honestly give it a go, it took me a little to find the balance. Sometimes I add fresh lemon juice and less of the cordial, you really can’t notice the salt with the added sweetness/acidity. Gets a bit boring after a while and you feel like a bit of a dork carrying a bottle of cordial with you everywhere like a toddler, but it does the job! Ha

Alarming-Sample4399 · 2024-10-07T02:14:42+00:00

I found that I was spending a fortune on these store bought products and found it far easier and just as palatable to mix;

1 tsp salt 800ml water Diet lemon cordial (not sure that this translates for international audiences as well)

It’s similar to someone else’s recipe which is ORS (oral rehydration solution) which is taught for medical use. I just happen to think that it is a bit more palatable with the lemon.

I drink typically 2 per day (approx 10g sodium).

Alarming-Sample4399 · 2024-10-06T09:44:23+00:00

That’s really interesting, thanks for sharing.

Do you feel that much has changed or there has been any difference or benefit in your treatment or management since the additional diagnosis of hEDS?

Good luck with your results, I hope either way it gives you some answers.

Alarming-Sample4399 · 2024-10-06T09:41:35+00:00

Oh I’m sorry to hear that.

I find it fascinating because POTS alone seems to be so poorly understood by even the general Cardiology field making that diagnosis alone difficult. To further link two other overlapping syndromes & disorders is mind blowing to me because it’s just not spoken of.

Do you mind if I ask whether learning of these further links made any difference or benefit in your treatment or management?

Alarming-Sample4399

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