Introduction: Seeking Better Health Outcomes

If you've got particular questions, don't hesitate to send me a DM — or just post them in this thread. Hearing about your friend is genuinely tough; that situation is deeply unfair. From what I understand, there aren't any treatments that actually alter the course of these conditions, which is exactly why I ended up in this community.
 
TxUt777 said:

I want to gain more knowledge on this. A dear friend of mine is in the early stages of figuring out heds/dysautonomia, and she's having a hard time finding any support within the medical system (on top of that, she has a fear of needles), and her life is falling apart.
Click to expand...
Needle fear is no joke! The worry before that initial shot is intense, but after you realize how mild the shot actually feels, you might end up chuckling at yourself. That’s what happened to me, haha—when I was young, I’d duck beneath the chair whenever flu shots or similar things came around.
 
From what I've gathered, avoid 31 gauge syringes. Go for the smaller sizes instead; 28 or 29 gauges. Being shorter means they hurt less and cause less impact! The sole drawback is that drawing up the reconstituted product becomes more difficult, no pun intended.... Still, it's worth it tho, particularly when you're doing multiple pins a day!
 
ThunderBird said:

TxUt777 said:

I want to gain more knowledge on this. A dear friend of mine is in the early stages of figuring out heds/dysautonomia, and she's having a hard time finding any support within the medical system (on top of that, she has a fear of needles), and her life is falling apart.
Click to expand...
Needle fear is no joke! The worry before that initial shot is intense, but after you realize how mild the shot actually feels, you might end up chuckling at yourself. That’s what happened to me, haha—when I was young, I’d duck beneath the chair whenever flu shots or similar things came around.
Click to expand...
Honestly, once I started injecting myself, it hit me that the fear was never about the needle itself — it was about handing control to someone else who might mess it up. 😅 My first time using EasyTouch felt like a breakthrough, like nothing could stop me after that. Still, when that fear has been with you for ages, pushing past it is brutal.
 
dancs said:

From what I've gathered, avoid 31 gauge syringes. Go for the smaller sizes instead; 28 or 29 gauges. Being shorter means they hurt less and cause less impact! The sole drawback is that drawing up the reconstituted product becomes more difficult, no pun intended.... Still, it's worth it tho, particularly when you're doing multiple pins a day!
Click to expand...
There's a misunderstanding here. A 31g needle is thinner than a 29g one. Length has nothing to do with it. Every gauge is available in a range of lengths.
 
Krossceeper said:

If you've got particular questions, don't hesitate to send me a DM — or just post them in this thread. Hearing about your friend is genuinely tough; that situation is deeply unfair. From what I understand, there aren't any treatments that actually alter the course of these conditions, which is exactly why I ended up in this community.
Click to expand...
There's some chatter I've come across regarding Ara 290, and I'm getting a nasal oxytocin product for her to test out. It appears that whenever cortisol spikes hit, her nervous system locks into sympathetic overdrive, yet even when using peptides, symptom control appears to be the ceiling of what we can achieve.
 
TxUt777 said:

Krossceeper said:

If you've got particular questions, don't hesitate to send me a DM — or just post them in this thread. Hearing about your friend is genuinely tough; that situation is deeply unfair. From what I understand, there aren't any treatments that actually alter the course of these conditions, which is exactly why I ended up in this community.
Click to expand...
There's some chatter I've come across regarding Ara 290, and I'm getting a nasal oxytocin product for her to test out. It appears that whenever cortisol spikes hit, her nervous system locks into sympathetic overdrive, yet even when using peptides, symptom control appears to be the ceiling of what we can achieve.
Click to expand...
ARA 290 is on my radar, and if my POTS/dysautonomia symptoms don't improve via other routes, I'll probably try it at some point.

Is there any indication that neuropathy might be behind her symptoms? If that's the case, ARA 290 would seem to be the most mechanistically fitting option.

For sympatholysis, beta blockers work well, but they carry side effects of their own that may exacerbate orthostatic syncope, should that be among her symptoms. In my case, Mestinon has helped by boosting parasympathetic activity, which helped rebalance the sympathetic issues. Given its low side effect profile and the fact that it can be stopped easily with minimal dependence, I'd strongly suggest Mestinon.
 
Krossceeper said:

TxUt777 said:

Krossceeper said:

If you've got particular questions, don't hesitate to send me a DM — or just post them in this thread. Hearing about your friend is genuinely tough; that situation is deeply unfair. From what I understand, there aren't any treatments that actually alter the course of these conditions, which is exactly why I ended up in this community.
Click to expand...
There's some chatter I've come across regarding Ara 290, and I'm getting a nasal oxytocin product for her to test out. It appears that whenever cortisol spikes hit, her nervous system locks into sympathetic overdrive, yet even when using peptides, symptom control appears to be the ceiling of what we can achieve.
Click to expand...
ARA 290 is on my radar, and if my POTS/dysautonomia symptoms don't improve via other routes, I'll probably try it at some point.

Is there any indication that neuropathy might be behind her symptoms? If that's the case, ARA 290 would seem to be the most mechanistically fitting option.

For sympatholysis, beta blockers work well, but they carry side effects of their own that may exacerbate orthostatic syncope, should that be among her symptoms. In my case, Mestinon has helped by boosting parasympathetic activity, which helped rebalance the sympathetic issues. Given its low side effect profile and the fact that it can be stopped easily with minimal dependence, I'd strongly suggest Mestinon.
Click to expand...
I'm going to get her to bring it up with her pcp. Up to now, all she's come away with is a pile of alternative diagnoses (arthritis, fibro, and so on), and getting solid answers about what's causing any of it — or even a clear definition — has been a struggle. That said, we're fairly confident her symptoms line up with heds dysautonomia.... The part that stands out most is the sympathetic nervous system getting "stuck". Propranolol is one of the things she takes, along with a few others, and right now they've got her doing a prednisone cycle for inflammation. She's miserable. I'd come across talk of ara-290 and dysautonomia in cases where it's genuinely a nerve issue, but whether it would do anything for her is anyone's guess. Reddit had some anecdotal stories.
 
Back
Top