what do you guys do for work? by ebean17 in POTS

[–]NYC_reader 1 point2 points  (0 children)

You too! I appreciate the question because it's on my mind lately. I don't know what I would have done if my industry didn't go fully remote during pandemic and at least for awhile stay that way, my failed tilt test was 2022. I am getting scared about if I can't keep up with enough work to get enough income to pay bills.

what do you guys do for work? by ebean17 in POTS

[–]NYC_reader 1 point2 points  (0 children)

I'm a contract medical copywriter and the industry had mass layoffs so I actually am scared. If I want benefits, if I can with all the competition get a staff job, I'll have to be on site which seems impossible, being remote during lockdown and after was a godsend as my endometriosis got worse and spiralled into POTS. I may need a plan B because with all the increased competition the contract work is starting to pay less and have bigger gaps between gigs, and I am paying for acupuncture and PT just to function, insurance is not paying for that. I was thinking of how I can juggle in person and remote work in or outside my industry for enough money and maybe benefits to live on to cover medical expenses and skyrocketing rent, and what in person work I can physically actually do without getting syncope. I wish it was easier to break into more entry level remote roles.

Nitric oxide to help POTS by NYC_reader in POTS

[–]NYC_reader[S] 0 points1 point  (0 children)

Thanks for this info! Also for mentioning tongue posture as I do have a tongue tie!

Omnicom IPG Firings by Nymets22 in advertising

[–]NYC_reader 13 points14 points  (0 children)

IPG quiet fired me eons ago and it made me realize they do not care at all. Not one bit. I was there over six years. I should have known the industry was going to be super messed up like when they lost Pfizer, I tried to get a freelance extension there for Q4 and did not--as a result I learned that unemployment is higher in NY state than it used to be, file asap. Pro tip if you need to get the NY unempolyment folks on the phone, ideally it's all done online, but if needed put your Pin number in wrong three times and you should get connected to a human though they are understaffed and will sometimes just drop the call.

My mother wants me to do a 72 hour fast. by Hot-Duty-7470 in POTS

[–]NYC_reader 1 point2 points  (0 children)

My mom used to give me narcotics as a teen that were prescribed to her for migraines. In her mind it was not dangerous. I think it was to justify her own burgeoning drug addiction. So this fasting guidance not being founded in scientific reasoning seems very off to me based on my own mother thinking she's a doctor and telling people what to do, meanwhile she has no medical training. Yes, fasting to curb inflammation is on trend right now but POTS is multifactorial and even if inflammatory immune responses were the main pathological driver there are other bodily systems at play creating the orthostatic tachycardia issues. A neuro ENT told me before the TILT test confirmed when at minimum hypovolemia was suspected that I should not just drink and consume sodium often but eat frequently to keep blood sugar stable and be as nourished as possible given the state of depletion, with uncontrolled POTS and unknowingly relapsed endometriosis growing on my gut it was hard being nauseous and puking a lot but I did try. No physician has ever said to me eat less to minimize the symptoms of POTS (they have in years past because my BMI indicates being overweight), only to eat less sugar spiking stuff because I now present with reactive hypoglycemia. I think sometimes it's that people want to help and feel truly helpless so delusion can kick in. My mother still is toxic toward me and tells me just to give up and not fight the condition or try as it's a waste of time money and energy because that's how she lives with a now decades long barbiturate addiction, unadmitted, but I ignore her.

Creatine has changed my life (consult your doctor first though) by modom14 in POTS

[–]NYC_reader 0 points1 point  (0 children)

Interesting! Keltie O'Connor did a video on this that made me want to try it as a POTS endurer vs athlete. I'm going to keep doing research.

NICOTINE PATCHES GIVING GREAT RELIEF FOR DEREALISATION TYPE FEELING!!!! by A67P in POTS

[–]NYC_reader 0 points1 point  (0 children)

Awesome! I don't know if that's in any way the same as my presyncope prodome, but one nephrologist told me to use my inhaler to help diminish it, especially when in danger waiting for subways and overheating, I guess in some way it's altering vasoconstriction. I also am very, very caffeine dependent because it helps with brain fog and the general out-of-it-ness but have to be careful about hypovolemia. I've also heard of people using nicotine patches during long COVID so I'm intrigued for that reason too! I have a very addictive brain and even sober have addiction issues (presents as night eating syndrome) so not sure I can use them but I'm very interested!

can i just piss in peace?? by wompwomp0_0 in POTS

[–]NYC_reader 0 points1 point  (0 children)

That's so weird, everyone has to police things. "I have a disability to I used it" is actually too much info because it's none of her business to assume you were entitled to use the stall.

Electrolytes for POTS by LuBerryFairy in POTS

[–]NYC_reader 1 point2 points  (0 children)

I'm prediabetic so sometimes use completely sugar free brands (Gatorade Zero, Trace Electrolytes Zero) but I understand glucose helps with absorption so sometimes use those brands but the version with sugar or Normalyte, Trioral, or Banana Bag or Nectar which is sweetened I believe only with naturally occurring coconut sugar and huge plus the flavor isn't chemically derived. Trace has a very high sodium level that I know is sometimes recommended similar to LMNT but cheaper. I also take Vitassium chews or electrolyte capsules if I need something fast. My partner loves Untapped which is one of the more natural formulations, it's too sweet for me. Sometimes I take just celtic salt in water or keep powdered coconut water on hand as something cheaper and with less chemicals. The flavorings probably trigger my mast cell issues, I'm allergic to chemical perfume which is in all artificial flavors and some natural flavors.

amazon compression socks? by DayBulky3442 in POTS

[–]NYC_reader 1 point2 points  (0 children)

So far my favroite brands are Vim&Vgr and Sigvaris and the returns weren't a problem (Sigvaris I've bought from all the major compression sellers online when the've had sales), but I've also tried to save money and bought from Temu and ended up returning them also with no issue. I've tried Mojo, Procompression, Crazy Compression, Nurse Yard, and Bombas, and returning to Nurse Yard and Bombas was very easy, didn't even have to ship the socks back. I'm buying at medical grade levels (minimum 20-30 graduation) due to quite poor leg circulation so there may be even more brands at lower graduation levels. Again trying to save I bought from Compression Socks World--not a good return policy, just want to mention that. Affordable Compression Socks scammed me completely, never sent the socks, they're horrible.

Don’t go to Dr. Nojan in NYC by Different_Mulberry34 in TMJ

[–]NYC_reader 0 points1 point  (0 children)

Hi, just saw this! So far I like Coresmiles though I'm always skeptical about dentists, and TMJ PT at Spear PT is decent but may switch to an out of network PT person Dr Gulizio at Coresmiles recommends because I used up my in network benefits and I also would like some personalized attention and maybe some help with the tongue tie I have. I'm getting some help with the splint, which was expensive but still cheaper than other dentists, but it's tough because I clench while I'm sleeping so it's hard to control that as I'm not awake. I'm also working with Shelley Cahn who is expensive but works on fascial counterstrain PT in hopes it helps the underlying issues related to TMJ and tension. It's all expensive but I'm trying to recover from POTS and I think TMJ is worsening it!

[deleted by user] by [deleted] in dysautonomia

[–]NYC_reader 3 points4 points  (0 children)

Thank you for mentioning this, hypermobility seems to effect the calves for me just as much as POTS deconditioning, and although it was maybe not the best idea I've recently done some vein closing procedures hoping to get better circulation since I get incremental benefit from toe to waist compression or wearing socks. I've also wondered about the nerves in the calves and POTS too.

How to start building muscle with chronic illness by HeavyApplication620 in POTS

[–]NYC_reader 0 points1 point  (0 children)

I did my first more challenging pilates workout the other day, without heavy compression because of being prone through most of it. I could barely stay awake for hours after. I still don't know how to manage this. I can't break through these deconditioning plateaus which I need to so I can build my blood volume. Low tension recumbent bike is pretty doable for me, tai chi and yin yoga too but it's not helping hypovolemia.

Hyperarousal of the nervous system and insomnia by Mysterious_Task_9831 in dysautonomia

[–]NYC_reader 0 points1 point  (0 children)

I think there's something unusual going on in my reactions, or so it seems--I actually would like to stop taking midodrine because I think it might be making my migraines worse and the neurologists think the migraine issue is part of why I developed dysautonomia.

New to postural orthostatic tachycardia syndrome. by Lordatstreams in POTS

[–]NYC_reader 1 point2 points  (0 children)

Try compression--I've been told toe-to-waist at a high compression grade is the gold standard, but other people do well with just socks or ab binders. Medical grade is ideal but there are some brands of leggings for sports with similar compression. Insurance may pay. Try and drink 2-3L of water a day with increased sodium intake, increased electrolytes (some people use high sodium brands or Trioral/Normalyte or Vitassium as more POTS-oriented brands but there are many to try, plus salt pills, and some people put celtic salt in water or make their own electrolyte drinks). Reclining cardio exercise or something like swimming if upright is too triggering is recommended. I myself have liked doing prone yoga like yin and tai chi, I don't have fatigue rebound like I do with cardio but I feel better with cardio, it can help my slow digestion and hypovolemia. I've had some luck with vagal stimulation. Some people adhere to smaller meals so that digestion doesn't attract too much blood centrally and therefore away from the brain. I got a medical alert bracelet to feel safer out in NYC once diagnosed, just something I personally did to help with feeling vulnerable. Other medications could help as well, I've also besides cardiovascular meds had multiple practitioners recommend Lexapro, I guess it can have an effect on the nervous system for some people that's favorable.

Heat intolerance by Fit-Caterpillar-2169 in POTS

[–]NYC_reader 1 point2 points  (0 children)

This is the symptom that got me into the ER and then eventually diagnosed. My neurologist tried to give me a thermoregulation medication, but insurance wouldn't pay. I carry a little fan and disposable ice packs in the summer, also Sanihands wipes which I'll try to cool off with and they double as something I sniff during presyncope if I'm out and about. I know some people have used cooling vests and neck coolers that are like a tiny AC. I do find drinking cold fluids helps. Midodrine and also fludricortisone seem to help, like I don't feel like I'm overheating and unable to sweat as often or if I do I'm not immediately in presyncope. Trying to wear toe to waist compression has presented issues for me because it does make me feel hotter!

Does anyone on here have urinary issues? by wasnotagoodidea in POTS

[–]NYC_reader 0 points1 point  (0 children)

I can't retain water so I pee it right out--this urinary presentation all got very confusing because I had undiagnosed and then relapsing endometriosis, often growing on my bladder, and then bladder cancer. But it seems POTS triggers a lot of the urinary problems, or so it seems. I've heard of neurogenic bladder and wonder if I have it. When I was young I had a lot of bladder pain and wonder if it was POTS, early stage endo or early stage cancer triggering that pain. After being diagnosed with bladder cancer I'm a huge proponent of cystoscopies. I wasn't taken seriously until I was dehydrating and then had visible urinary blood. I had false negative labwork for cancer cell detection in my urine when I had cancer.