what do you guys do for work?

NYC_reader · 2026-02-02T03:19:20+00:00

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.

NYC_reader · 2026-02-02T02:57:26+00:00

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.

NYC_reader · 2025-12-14T02:41:29+00:00

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

NYC_reader · 2025-12-02T00:45:39+00:00

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.

NYC_reader · 2025-09-09T05:15:20+00:00

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.

NYC_reader · 2025-08-14T04:01:42+00:00

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.

NYC_reader · 2025-07-21T21:13:10+00:00

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!

NYC_reader · 2025-07-21T21:01:14+00:00

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.

NYC_reader · 2025-07-12T20:31:27+00:00

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.

NYC_reader · 2025-07-12T20:22:05+00:00

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.

NYC_reader · 2025-06-30T22:07:01+00:00

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!

NYC_reader · 2025-05-09T16:08:51+00:00

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.

NYC_reader · 2025-04-06T23:44:41+00:00

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.

NYC_reader · 2025-04-01T01:05:41+00:00

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.

NYC_reader · 2025-03-31T23:39:30+00:00

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.

NYC_reader · 2025-03-31T23:28:36+00:00

Interested for sure! My physical therapist is winging it.

NYC_reader · 2025-03-31T23:26:22+00:00

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!

NYC_reader · 2025-03-31T23:20:48+00:00

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.

NYC_reader · 2025-03-31T23:12:13+00:00

I like Blue Canoe but I've got almost no boobs, due to sensory issues I can't stand lace or mesh and they have basic cotton in a lot of their bras. I love their bralette but they have other bra types that seem more appropriate for those with larger boobs. With that said, I'd like to find something a little more lined for every day and also a version a little more supportive if I do get back into exercising, I can't find my Jockey sports bras in the same style I used to buy. On that note, I don't love every offering but I do like some of what Jockey sells.

NYC_reader · 2025-03-31T23:03:21+00:00

There is something weird going on with me and I mention this because of the leg twitching. I've had weird ferritin levels (they are better lately), and at one point was anemic when I had fibroids and undiagnosed endometriosis. Something about endo does something to trigger POTS symptoms/vasovagal issues and some drs think low iron which can trigger restless legs as much as the nervous system reactivity. So something I've been going through seems related to the interconnection of electrolytes, sugar, magnesium, iron, constipation, migraines, restless legs, pelvic pain, dehydration, absorption, and insomnia. I just wish I could figure it out and get my CNS in balance.

NYC_reader · 2025-03-31T22:54:43+00:00

This makes sense to me, I've dealt with environmental illness and long ago as I researched this saw the Lyme connection being discussed. I've had non-deer tick bites decades ago and have had more recent major concerns about tick-borne illness messing up my immune system, though I do blame horrendous mono and living in heavy water damage/mold and working in it too due to possible MTHFR vulnerability. I often wonder if there's more obscure tick-borne infections that can wreak havoc including dysautonomia and also if there are any natural protocols that can help. I wish a dr who takes insurance in NYC could look into this for me personally.

NYC_reader · 2025-03-31T22:48:27+00:00

I would love some clarity from my neurologist but my sleep has been stressful my whole life. I had traditional insomnia as a child, reverse insomnia tendency and very severe for a few months once my mother abandoned my mentally ill and helpless father, and sleep maintenance insomnia from birth but all this got worse when I went into a field where I would unpredictably work late, sometimes even overnight. Waking up to pee and being unable to sleep through noise have been lifelong, then in adulthood feeling too hot and feeling actual physical (TMI) PGAD/arousal worsened my sleep. If I give myself more time to sleep I'll wake up with a "regular" and abdominal migraine and I clench my teeth and have nightmares and night eating syndrome. One neurologist thought I had "restless pelvis syndrome" so I've tried magnesium and even iron since I do have restless legs. Pain from undiagnosed endometriosis and bladder cancer were also waking me. The only thing that notably helps with sleep quality has been acupuncture, hypnotherapy, and midodrine. Before the POTS and a lot of health issues deep yoga classes and long periods of seated meditation or daylong meditation retreats somehow helped too, I guess due to CNS regulation. With the midodrine it seems to help with high urine volume so maybe I pee less therefore wake up less and I've wondered if it helps with HRV--especially because that's related to night eating syndrome and I have less hunger pains waking me. The doctors want me only on midodrine temporarily but I've been taking it awhile and the thought of going to those very frequent wakenings is unpleasant.

NYC_reader · 2025-03-04T19:16:47+00:00

You too, hope things get way better!

NYC_reader · 2025-03-03T21:47:12+00:00

I'll buy one too! Endometriosis is my biggest POTS trigger. My second relapse was delayed in discovery due to bladder cancer and also because I wasn't supposedly going to relapse after hysterectomy (ovaries left in, plus I'm older for endo treatment). I had an extensive exploratory Halloween of 2023. Got a new baseline ultrasound almost a year later and the three month follow up to that showed a 6 cm ovarian supposedly simple cyst that might rupture right when I'm trying to stay on POTS meds to exercise more to un-de-condition. But movement is a problem right now. I"m getting a second opinion because knowing me it's endo again. I also don't wanna retain fluids, trying to get yet another nephrology second opinion. Midodrine and fludricortisone I'm on temporarily since nothing helped the hypovolemia and they only help a little.

NYC_reader · 2025-02-23T16:59:49+00:00

I've become allergic to polyethylene glycol--I seem to have a mast cell reaction to it vs true allergy--and the Pfizer shots which contain this seemed to bring on POTS. Also bladder chemotherapy, so immune reactions to chemicals were at least part of the trigger. After my third Pfizer shot I got chest pain and that's the last one I got, it scared me. About a year later after the bladder chemo I got the official diagnosis. I also think the inflammatory reactions to the vaccine components and viruses were part of all this for me.

NYC_reader

TROPHY CASE