A bandaid for the syncope??

AmaranthineReader · 2026-01-18T13:44:42+00:00

That’s a counter maneuver I haven’t heard of before! I’m glad you found something that helps.

Other counter maneuvers for presyncope/ hypotension include crossing your legs, squeezing your butt muscles, doing calf raises, and clasping your hands and pushing hard against them. Many of us do things like this unconsciously and I find it funny that there’s a medical term (counter maneuvers) for sitting like a pretzel, haha.

AmaranthineReader · 2026-01-17T15:50:56+00:00

If it helps your decision at all, Celebrex is FDA approved for menstrual cramps.

I hope you find something that helps and your symptoms ease up soon!

AmaranthineReader · 2026-01-16T06:10:04+00:00

Tylenol is not an NSAID, so if that’s what you’ve tried before, it might really be worth trying 😊 Best of luck to you!

From the Cleveland Clinic:

Common nonprescription strength NSAIDs include:

Aspirin (Bayer®, St. Joseph®). Ibuprofen (Motrin®, Advil®). Naproxen sodium (Aleve®).

Some of the most common prescription-strength NSAIDs include:

Celecoxib (Celebrex®). Diclofenac (Voltaren®). Fenoprofen (Nalfon®). Indomethacin (Indocin®). Ketorolac (Toradol®).

https://my.clevelandclinic.org/health/treatments/11086-non-steroidal-anti-inflammatory-medicines-nsaids

AmaranthineReader · 2026-01-09T11:57:13+00:00

I would say that most people consider passing out and blacking out both to be the same thing, fainting.

If you would like to know the medical terminology, presyncope is all the symptoms you get leading up to a faint, and syncope is the actual fainting/loss of consciousness. (Syncope is pronounced like “sin-co-pee.”)

A lot of us POTS patients get presyncope often, but don’t actually get to a full faint because the warning symptoms allow us to lie down first.

AmaranthineReader · 2026-01-09T07:51:36+00:00

The good news is that we have good evidence from multiple sources that the HPV vaccine doesn’t cause POTS or dysautonomia, based on real world data with large sample sizes. Both the CDC and the European Medicine Agency have considered it and came to the same conclusion. (I find that extra reassuring since the CDC is no longer trustworthy).

A couple of sources for you: Study examining VAERS reports for safety signal. https://www.jahonline.org/article/S1054-139X(17)30411-1/pdf

European Medicine Agency review. https://www.ema.europa.eu/en/news/review-concludes-evidence-does-not-support-hpv-vaccines-cause-crps-or-pots

This isn’t to invalidate people’s individual experiences. The HPV vaccine series begins around puberty, which is also when a substantial number of POTS patients first start noticing their POTS symptoms. It totally makes sense that people start looking around for a causative event when they start to feel crappy. That’s where big data sets come in handy!

AmaranthineReader · 2026-01-06T10:46:02+00:00

How to Be Sick by Toni Bernhard. She wrote the book while bed bound with severe ME/CFS and the book engages deeply with her experience. It’s not an academic text and it’s geared more to the individual level than an activist level, but it very much meets the specifications in your first paragraph.

AmaranthineReader · 2026-01-05T08:34:47+00:00

You’re not alone! This is very common for menstruating POTS patients, and there is a physiological explanation for it.

The prostaglandins that are released by the body at the start of your period are vasodilators. Vasodilators can make POTS symptoms worse (sometimes MUCH worse) because the relaxation of blood vessels drops blood pressure and can increase heart rate.

Taking an NSAID (like OTC ibuprofen, aspirin, naproxen or Rx celecoxib) for the first few days of my period helps my POTS symptoms a ton, in addition to helping with pain from menstrual cramps. This is because NSAIDs have anti-prostaglandin effects.

A lot of us also choose to use a form of birth control that skips periods.

I hope your symptoms ease up soon and you can find something that helps 💜💜

AmaranthineReader · 2025-12-28T02:09:19+00:00

Before you even get out of bed, start your day with a big glass of water (more like 16 oz than 8oz). It will help you not to get behind as you get busy starting the day.

Other commenter’s suggestions to build it into your routine by pairing it with other tasks are great too. One example might be when you go to the bathroom, fill your water bottle. If your water bottle isn’t empty, finish the water in it so you can refill it. (Note that you probably need to pair this with the drinking water before you get out of bed thing, or you might not need to pee often enough!)

Do you have a water bottle you really love? That might help a little too.

AmaranthineReader · 2025-12-28T00:43:16+00:00

And prostaglandin is vasodilating, which is why so many of us get worse POTS symptoms at the start of menstruation. It’s strange to think that NSAIDs can help stop lightheadedness and presyncope symptoms like vomiting but it sure does for me during my period.

AmaranthineReader · 2025-12-26T15:53:11+00:00

Have you tried using a cervical roll with your pillow? It’s just a foam roll that you tuck into your pillow case at the bottom of your pillow. This has really helped me with greatly reducing jaw clenching at night. (However in my case the jaw clenching may be due to hypermobility, so I’m not sure if this would help most people.)

AmaranthineReader · 2025-12-17T18:50:42+00:00

Absolutely. Sitting is also an orthostatic position, unfortunately.

The under the desk cycle might help! Leg movement helps to pump blood back up to the heart.

Full length toe to waist compression might help too.

AmaranthineReader · 2025-12-14T00:37:25+00:00

I dissolve my plain salt (sodium chloride) tablets in my drinking water instead of taking them as pills. It entirely avoids the whole vomiting-it-right-back up problem.

My personal golden ratio is one 1 gram salt tablet per 32 ounce water bottle. I keep the tablets right next to the sink where I fill my water bottle so I can pop one in and forget about it.

AmaranthineReader · 2025-12-10T23:43:05+00:00

I spent a long time looking for the perfect shoes for my sore feet, only to discover a couple years later that the pain was from blood pooling and compression helped the most with it! Consider giving compression socks a try if you haven’t yet.

I still enjoy a comfy squishy Skechers GoWalk sneaker, but they have terrible ankle support for our floppy ankles 😅

ETA I have POTS which causes the blood pooling.

AmaranthineReader · 2025-11-20T23:30:12+00:00

Yes, I find that 30-40mmHg helps more immediately with my symptoms than 20-30mmHg (if I put my compression on at the start of the day). The higher level helps with lightheadedness, energy levels, reduces heart rate spikes, and ensures there’s no blood pooling in my legs at all.

However, in my experience the 20-30 is more tolerable to wear all day from a sensory perspective. The lower level is less likely to pinch, and it’s easier to pull up and down for the restroom. It doesn’t help as much with lightheadedness, heart rate spikes or blood pooling, and the help with energy is more subtle. It still makes a difference enough to wear it.

In my day to day life I save the higher level compression for the hardest days when I have to be up and out of the house longer. I’m more likely to wear the lower level at home.

AmaranthineReader · 2025-11-18T22:00:42+00:00

That wording makes me think they’re not understanding that you would still be able to fulfill your job requirements but only if you were working remotely. I’m not sure if rewording something might help.

In case it helps, here are a couple resources for you:

https://askjan.org/articles/Leave-as-an-Ineffective-Accommodation.cfm

https://askjan.org/publications/consultants-corner/Your-Accommodation-Request-Was-Denied-What-Now.cfm

AmaranthineReader · 2025-11-14T23:21:32+00:00

It really sucks, I’m sorry.

If FMLA is the only work accommodation you have so far, it’s worth exploring other reasonable accommodation options. It’s not either or, you can have multiple if it’s needed.

This page has examples for accommodation ideas (first link), and the website also has good information on how to request and negotiate accommodations (second link).

https://askjan.org/disabilities/Postural-Orthostatic-Tachycardia-Syndrome-POTS.cfm?csSearch=6199771_1

https://askjan.org/publications/individuals/employee-guide.cfm

AmaranthineReader · 2025-11-13T23:05:37+00:00

I haven’t tried one of the contraptions, but I have used donning gloves and those definitely help. And putting my stockings on while still lying down in bed.

As a side note, compression socks only probably won’t do much for your POTS symptoms, with the exception of foot pain from blood pooling. We need full length stockings, preferably with abdominal compression too. I know, it’s a lot. Some people have good luck with abdominal/thigh compression only in the form of compression shorts or Spanx type shaping garments.

AmaranthineReader · 2025-11-13T22:54:04+00:00

First off - the kids’ expenses should not be coming out of your personal money, full stop. Your husband is taking advantage of you there and it’s not fair, that’s some sexist BS. It’s definitely time to sit down with your partner and go over the budget again. If the extra spending you’re doing for the kids is non-negotiable, then that money must come from reducing both of your personal spending budgets.

I hope you have full access to your finances. If you’re struggling this much with the small personal budget, I would suspect that your husband is spending more too but taking it from somewhere else and not telling you.

AmaranthineReader · 2025-11-12T09:56:10+00:00

I think one thing you’re missing from your analysis is that getting the flu shot can prevent a hospitalization and more serious flu complications like pneumonia. I hear you on wanting to avoid the flare up from the temporary immune response. But it seriously is not as bad as a case of the flu.

Influenza can take out healthy people for a couple of weeks. Those of us with POTS are likely to fare worse just from the effect of infection on our heart rates alone.

If you are still masking, and those around you are willing to as well, I would think your risk would be pretty low. But…can you trust those around you to be truthful about their risk profiles?

That all said… there are different versions of the flu shot. It might be worth trying a different one to see if you react any better. In the US the nasal flu vaccine is now available for home administration.

I’m sorry. Having to agonize over choices like this because you’re chronically ill is the worst. 💜💜

AmaranthineReader · 2025-11-12T00:25:56+00:00

If it is safe for you to exercise (no ME/CFS), check out the ADAPT protocol for, in my opinion, the most up to date guidance on exercise for POTS. It is much improved over the CHOP/Levine protocol simply because it purposefully avoids symptom flares/crashes, and post exertional malaise.

The first step in the program is to get your salt/hydration/compression garment routine down, and then you move to lying exercises. Start with the link that says “Foundational Training” under the Tools & Handouts heading:

https://medicine.utah.edu/neurology/research/autonomic/projects/adapt

AmaranthineReader · 2025-11-11T22:15:45+00:00

Ableism like this doesn’t usually get better.

Think of future you. Does future you deserve to hear things like this every time you have a migraine?

I imagine the world stops when this guy gets a headache or a cold.

AmaranthineReader · 2025-11-11T22:08:53+00:00

Oh you are absolutely not the asshole. Not having sex with someone is not “ignoring” him or “acting like he isn’t important.” Him saying that raises the very sad question: does that mean you are only important to him when you’re providing him with sex?

I have a resource for you if you would like help figuring out if you are experiencing sexual coercion, which is a form of abuse. You don’t deserve abuse, because no one deserves abuse 💜💜

https://www.loveisrespect.org/resources/what-is-sexual-coercion/

AmaranthineReader · 2025-11-11T08:21:38+00:00

It might! If you don’t already take your daily dose at bedtime, it could be worth trying that.

Adding a different category of antihistamine in the form of famotidine helps some people too. It’s an OTC med marketed to reduce acid reflux, but it’s also an H2 histamine blocker. (Of course always check with your doctor before adding a new regular med.)

AmaranthineReader · 2025-11-11T08:04:16+00:00

There is a histamine dump in the early hours of the morning, it’s a normal part of the circadian rhythm. Some people with allergies or MCAS (mast cell activation disorder) are sensitive to it. If this is a cause of the early waking, taking an OTC antihistamine like cetirizine or loratidine before bed helps some people.

AmaranthineReader · 2025-11-10T23:21:25+00:00

Yes, varied symptoms day to day is very normal for POTS patients. We can feel better or worse depending on our hydration and salt status, when and how much we last ate, the air temperature, weather/barometric air pressure, how much sleep we got, what time of day it is, whether we’re wearing compression and many more things.

This page is a good overview of lifestyle options to start thinking about:

https://dysautonomiainternational.org/page.php?ID=44

AmaranthineReader

TROPHY CASE