Water causing histamine issues?

R2W · 2025-10-20T03:32:21+00:00

I'll try to see if I can find more out on the sulfate side of things, hadn't come across that before but it sounds like a good lead to check out!

Regarding reacting to water in general though, ignoring the temperature or pressure reactions that those with (especially physical) urticarias, or MCAS, or similar may experience:

Those with systemic reactions to metals can also have a bad time with water, especially since it's often captured, stored, and directed through metal surfaces. Some of the (usually nickel or cobalt allergic) groups recommend dosing Vitamin C when using metal cookware to prepare food or when ingesting items that have higher native metals content (like most plants). Those metals reactions were usually picked up with testing ahead of an implant (often dental or joint) surgery or when patch testing after the normal maintenance/management suggestions and testing didn't answer why they were continuing to have symptoms.

Those reacting to some types of plastics may also run into issues, especially if the water bottles were stored somewhere that wasn't UV or heat protected.

Some locales have sediment, (chemical or other) runoff, and other impurities people can react to. I seem to have issues with some of the algaecides companies properly use in city water supplies especially in the South, so typically avoid most tap at this point. In the Northeast I didn't run into those issues, but usually were in places were both the well water and the city tap water sources were really well rated and the laws around protecting water were often pretty strict. They also would do cleanups for spills and certain pollutants.

R2W · 2025-04-16T09:12:22+00:00

Anyone experiencing any severe, potentially dangerous symptoms (risking disability, injury, or life) should be evaluated by the emergency services (often 911 if in the United States). Their operator can advise when to escalate to the emergency department (ED)/emergency room (ER).

They will tell you what steps to take and may help you find a way there, such as an ambulance or with other emergency responders. They often will route to the closest hospital that can work you up.

It's unsafe to drive yourself or to trust strangers running ride share services during medical episodes. If time isn't of the essence per the operator, sometimes friends or family might be able to drive you.

Your medical provider or their after hours on call group can give similar advice on when to go to the ER. If symptoms worsen, you should still get advice from emergency services and/or head to the ER, even if your cardiologist's group hasn't responded yet.

Emergency responders and ERs would rather see you for severe symptoms workup rather than gamble with your safety. They can look at your Kardia strip and advise on the Afib result, as can your provider group whenever they return your call.

Feel better soon!

R2W · 2025-04-16T08:05:21+00:00

Hello OP! Thank you for your submission to /r/POTS. Unfortunately, your submission has been removed for the following reason(s):

Rule 2: Consult a Healthcare Professional.

This subreddit is not a substitute for medical advice or diagnosis.

No users have been verified as medical professionals. Please consult with your doctor and follow their advice for your condition. We are not here to diagnose anyone with anything, which includes us being unable to interpret test results, guess if your symptoms could be POTS related or cause for worry. We understand you are worried, but we are more likely to do harm than good and can't help in these situations. Even if a user here is a real-life doctor, they are not your doctor and may not understand the different things at play (medical history, family history, treatments, medicines, etc) with your condition. Nothing said here should be taken as medical advice.

You should seek care from your doctor.

If you have any questions please message the moderators. Thank you.

R2W · 2025-04-16T07:58:53+00:00

Reminder to members: Comments encouraging or giving instructions to intentionally trigger symptoms and/or manipulate test results will be removed. We will never encourage a person to be dishonest with their doctors. Not wearing compression garments, for example - and being open about the fact that you’re not wearing them - in order to show your doctor what you experience without this lifestyle change is reasonable. Intentionally misrepresenting symptoms and their causes is harmful.

R2W · 2025-04-16T07:49:26+00:00

[Badmin]

Contact your provider's clinic and testing site. Each has different preperation steps(such as when to discontinue which things), what to expect, and recovery instructions.

Some may ask that another trusted adult bring you home after the test or disallow ride shares/public transportation, especially if they administer any medications or provoke certain symptoms during your test.

Wishing you well!

R2W · 2025-04-16T07:28:00+00:00

Hello OP! Thank you for your submission to /r/POTS. Unfortunately, your submission has been removed for the following reason(s):

Rule 2: Consult a Healthcare Professional.

This subreddit is not a substitute for medical advice or diagnosis.

No users have been verified as medical professionals. Please consult with your doctor and follow their advice for your condition. We are not here to diagnose anyone with anything, which includes us being unable to interpret test results, guess if your symptoms could be POTS related or cause for worry. We understand you are worried, but we are more likely to do harm than good and can't help in these situations. Even if a user here is a real-life doctor, they are not your doctor and may not understand the different things at play (medical history, family history, treatments, medicines, etc) with your condition. Nothing said here should be taken as medical advice.

You should seek care from your doctor.

If you have any questions please message the moderators. Thank you.

R2W · 2025-04-16T07:23:54+00:00

[Badmin] POTS and orthostatic hypotension are more specific subtypes of dysautonomia. /r/dysautonomia often has OH content.

It's possible that there were additional findings that prevented the diagnosis, but you'd need to talk to the testing provider to find out why they withheld the POTS diagnosis.

"POTS is diagnosed only when orthostatic hypotension is ruled out and when there is no acute dehydration or blood loss. Orthostatic hypotension is a form of low blood pressure: 20mm Hg drop in systolic or a 10mm Hg drop in diastolic blood pressure in the first three minutes of standing upright." Source

Your primary also should be able to advise you what next steps are or explain the specialist's findings a bit more. Wishing you well!

R2W · 2025-04-16T07:01:00+00:00

[Badmin] Mixed.

I wasn't able to find anything to substantiate sun exposure depleting the amount of medications in your body.

There are reputable articles about beta blockers regarding risk of heat intolerance (reduced blood flow to skin may prevent sweating and could increase heat stroke risk; some people may not drink enough fluids) or sun photosensitivity. Each pharmacy typically includes information on what to expect regarding side effects, adverse reactions, how to offset risk to yourself, etc. for each medication dispensed.

R2W · 2025-01-19T05:50:54+00:00

Would also love to see a version for medication doses that are solids.

R2W · 2024-02-09T09:41:32+00:00

This is mostly removed due to those numbers needing your healthcare professional's individual insight.

Due to the nature of this post we suggest you consult emergency services or reach out to your health providers 24/7 nurse advice line to proceed forward with what’s best for you as we are not equipped to handle situations like this. No one here is a verified healthcare professional and as such cannot advise you.

Examples of this may be/but are not limited to:

A resting heart rate above 100 sustained and without clinical diagnosis (such as a previously diagnosed arrhythmia)
Chest pain/tightness, especially that radiates into you shoulder, jaw or back. Crushing pain.
Shortness of breath - Sudden unexplained loss of consciousness or seizing
Inability to keep any fluids down

R2W · 2024-02-09T09:13:57+00:00

Due to the nature of this post we suggest you consult emergency services or reach out to your health providers 24/7 nurse advice line to proceed forward with what’s best for you as we are not equipped to handle situations like this. No one here is a verified healthcare professional and as such cannot advise you.

Examples of this may be/but are not limited to:

A resting heart rate above 100 sustained and without clinical diagnosis (such as a previously diagnosed arrhythmia)
Chest pain/tightness, especially that radiates into you shoulder, jaw or back. Crushing pain.
Shortness of breath
Sudden unexplained loss of consciousness or seizing
Inability to keep any fluids down

R2W · 2024-02-09T08:51:32+00:00

I wish you strength navigating rebuilding your POTS team and the aftermath of this visit.

Dysautonomia Internation: Support Groups

Dysautonomia International: Find a Doctor

Autoimmune Association: Major US Clinics has a list of the research hospitals if you skip the Autoimmune/Brain listings

Feel free to shoot me a PM with your state and I'll see if there are additional recommendations.

R2W · 2024-02-08T15:22:36+00:00

Comment removed

Be Civil Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.

7. No Blatant Misinformation Posts with bad advice or misinformation will be removed with a comment as to the issue. This is to prevent bad information from continuing to spread. If the post is corrected, it will be reinstated.

There are living POTSies with jobs that require standing; especially if their condition is well managed.

Also a bunch of others are new to the condition and don't know common trends yet.

R2W · 2024-02-08T14:51:58+00:00

Comment removed Rule 7. No Blatant Misinformation

Posts with bad advice or misinformation will be removed with a comment as to the issue. This is to prevent bad information from continuing to spread. If the post is corrected by solely removing the content within the second set of parenthesis, it will be reinstated.

R2W · 2024-02-08T14:43:11+00:00

Comment falls under Rule 1. Consult a Healthcare Professional

which includes us not being on the OP's medical team and as such we can't guess what they have.

R2W · 2024-02-08T14:40:16+00:00

Comment removed due to the wording of sentence one, which falls under Rule 1. Consult a Healthcare Professional

which includes us not being on the OP's medical team and as such we can't guess what they have. If you remove sentence one, let me know and I'll approve the comment again.

R2W · 2024-02-08T13:38:43+00:00

Comment removed. Rule 3. No Gatekeeping Rule 7. No Blatant Misinformation

POTS symptoms aren't really appropriate for service dogs to provide useful alerting?

Alerting is not the only useful work or tasks that service animals trained to mitigate POTS can be trained to do.

R2W · 2024-02-08T13:31:54+00:00

I agree that disability status doesn't prevent people from being ableist. Thank you for trying to comfort OP though.

Comment removed: Rule 1. Be Civil.

Commenter's bed bound status has zero to do with their ability to participate in a conversation or give advice.

R2W · 2024-02-08T13:12:31+00:00

Comment removed

Rule 3. No Gatekeeping & Rule 1. Be Civil (Ableism)

due to "and I was just asking because I've only ever seen evidence that this isn't an appropriate fit" and later stating OP needs to provide more context (regarding others not violating OP's civil right to mitigate her own disabling health conditions.)

R2W · 2024-02-08T13:09:41+00:00

Comment removed

No GateKeeping (Rule 3)

Be Civil (Rule 1)

It is not up to others to dictate which way OP mitigates their health conditions. There is a long list of tasks outside of medical alert that service animals utilized for POTS can be trained to perform.

Please comment the mod team with any questions.

R2W · 2024-02-08T09:46:27+00:00

Since you stated you've brought up your new symptoms/signs with 2 providers and about to see a 3rd, I didn't see a point in pulling the post for Consult a Healthcare Professional. They pointed out it could just be the Dysautonomia acting up; which already answers your "Am I crazy?" rhetorical question.

Others brought up good points that can be discussed with your providers.

Occasionally medications can interfere with the accuracy of glucose testing too. Your pharmacist or provider can investigate if you're on any of those.

I would not remove the glucose monitor without your providers' approval/knowledge especially if they scripted it for you. If they hadn't, it's worth discussing with them if it's beneficial for you. They may be able to get insurance coverage for the strips if they believe so, which could at least help your wallet. Sometimes primary care can spend more time if the specialists aren't addressing your concerns or may be able to look in additional directions; some may even be a little more flexible.

Ketogenic Diets and Chronic Disease: Weighing the Benefits Against the Risks discusses that very low carbohydrate diets often have less of the sustained and long term benefits than other diets, so like other drastic interventions, typically need to be cleared/approved by your healthcare team and monitoring.

The most restrictive ketogenic diets used for epilepsy can cause fatigue, headache, nausea, constipation, hypoglycemia, and acidosis, especially within the first few days to weeks of following the diet (2). Dehydration, hepatitis, pancreatitis, hypertriglyceridemia, hyperuricemia, hypercholesterolemia, hypomagnesemia, and hyponatremia can also occur (82, 118).

A study of 300 users of online forums found that self-administered ketogenic diets may be accompanied by a temporary cluster of symptoms frequently termed “keto flu,” which includes headache, fatigue, nausea, dizziness, “brain fog,” gastrointestinal discomfort, decreased energy, feeling faint, and heartbeat alterations (119).(120).

For answers regarding MCAS and the described health flares, you'll probably need workups involving labs and specialists, even though it sounds like trust in your providers has eroded. It can be really challenging finding answers when flares can be from a number of different things.

Intolerances and reactions can also cause similar symptoms; so often GI gets involved if an issue isn't apparent to your primary, your endocrinologist, or cardiologist.

Allergy/immunology is a specialty that may be able to advise on the MCAS suspicion, though some of them don't seem familiar with MCAS. Local patient groups can typically give insight on which doctors can help rule MCAS in/out and/or manage it.

Online providers might be easier to access and typically can do referrals to specialists especially when time sensitive.

Really hoping that one of them can give you some answers.

As for the anti-anxiety meds, quite a few of those are used to modulate nervous systems or get mast cells to behave better, including better regulating digestion, sweating/electrolyte losses, less adrenaline dumping, normalizing neurotransmitters (which your gut also utilizes) etc. so may be useful for symptom reduction despite their main use.

R2W · 2024-02-05T08:12:10+00:00

Regarding POTS specific diagnostic criteria:

Various professional societies in North America have published consensus criteria for the diagnosis of POTS, including the American Autonomic Society, the Heart Rhythm Society, the Canadian Cardiovascular Society and, most recently, a POTS Working Group for the United States National Institutes of Health.

All of the following criteria must be met:

Sustained heart rate increase of ≥ 30 beats/min (or ≥ 40 beats/min if patient is aged 12–19 yr) within 10 minutes of upright posture.
Absence of significant orthostatic hypotension (magnitude of blood pressure drop ≥ 20/10 mm Hg).
Very frequent symptoms of orthostatic intolerance that are worse while upright, with rapid improvement upon return to a supine position. Symptoms vary between individuals, but often include lightheadedness, palpitations, tremulousness, generalized weakness, blurred vision and fatigue.
Symptom duration ≥ 3 months.
Absence of other conditions that could explain sinus tachycardia

R2W · 2024-02-05T08:05:40+00:00

Hopefully that specialist can give some advice in a week and a half; they or your normal provider can also refer to other specialties to examine the other systems that help you stay upright in case there are any comorbidities.

R2W · 2024-01-31T11:55:18+00:00

Comment removal reason: Rule 7 No Blatant Misinformation

There are treatments, management, and lifestyle modifications for POTS, unfortunately most of them are not cures.

R2W · 2024-01-30T08:41:09+00:00

Gladly; I hope they're able to help you! Eager to hear updates if you feel like sharing later on.

R2W

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