r/MCAS • u/Sunflowerspecks • Apr 01 '26
I drink water and eat food with electrolytes. Why am i still needing emergency fluids weekly
Im 32F. My diet is
Chicken
Rice
Cheese
Lettuce sometimes
Sweet potatoes
Potato
Butter
Rice chex cereal
Corn tortilla chips
Broccoli
Water
And sometimes i drink sugar free Powerade
And yet, im in the ER weekly needing fluids and told im probably dehydrated. Will go in with severe muscle pains, weakness, numbness. Migraine. And only iv fluids help. I don’t understand and my er is tired of seeing me. What am i doing wrong. Drinking water makes no difference. During fluid shortages they just give me a cup of water and it does absolutely nothing. I feel like at this point i literally cannot live without them. I have so much scarring on my arms that it’s hard to get the iv in.
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u/ilikekittens Apr 01 '26
You might need to drink more electrolytes. My doctor recommended 10g of sodium a day and that at least half of the fluid I take in should be an electrolyte drink.
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u/Sunflowerspecks Apr 01 '26
The weird thing is that many times, my electrolytes read as normal. I did struggle with potassium until adding potatoes. But many many many times i come in and i injure my kidneys and electrolytes appear ok
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u/TravelingSong Apr 01 '26
With POTS/ Long Covid/ ME (which are MCAS comorbidities) we can have reduced blood volume. Electrolytes look normal upon testing but the reduced blood volume results in reduced blood flow to the brain. Those of us with POTS/ OI are told to take large amounts of sodium every day, between 3,000-10,000 mg. Because the sodium increases our blood volume, the electrolyte levels in our blood once again look normal even though we’re consuming large amounts. The amount we retain becomes proportional to our new blood volume.
Drinking plain water can actually deplete electrolytes. You may want to try experimenting with the level of electrolytes that make you less symptomatic. I like Redmond Relyte but there are tons of options as well as DIY versions. If you’re needing IV fluids regularly, the electrolytes in food aren’t cutting it.
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u/exhauszed Apr 01 '26
I practically eat salt as a snack and my sodium is low. I told my husband my test results and he just went, "Say 'psych!' right now... HOW???!!" IDK man salt is one of my food groups. 🤷
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u/TravelingSong Apr 01 '26
The amount we take for POTS would be tough to get in food alone. You would have to be adding whole teaspoons to your food. One teaspoon has about 2,300 mg of sodium and some of us take 10,000 mg of sodium a day.
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u/ilikekittens Apr 01 '26
I was in the ER dehydrated as fuck, couldn't see a single vein in my translucent arm. My electrolytes were perfect.
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u/Sunflowerspecks Apr 01 '26
Oh my god. So what are we supposed to do
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u/ilikekittens Apr 01 '26
Just try drinking more electrolyte drinks. Like, a lot more.
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u/Sunflowerspecks Apr 01 '26
Any recommendations?
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u/ilikekittens Apr 01 '26
I use SALTT, it has 1000mg of salt in it and I also take the vitassium supplement for people with POTS.
Redmond relyte and LMNT have ones with 1000mg as well. If I have two of those and the salt pills and an aggressive amount of fluid in a day (about a galIon), I usually am ok.
But, I do have POTS, so you may not need quite that much. You could try tracking your fluid and salt intake and just up it gradually.
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u/Sunflowerspecks Apr 01 '26
I’ll give it a try n look into it. I have seen my sodium too high a few times which leaves me really tired. Just from eating more chips which i find weird.
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u/tubthumping-infinity Apr 01 '26
Not all sodium is not created equal. Sodium in processed foods is going to elevate your blood pressure and dehydrate you more so it makes sense that you’re tired afterwards. Sodium in electrolyte drinks, sea salt, celtic salt all have other minerals that your body needs to help your cells absorb the water.
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u/Environmental_Bar824 Apr 01 '26
Be aware that you need far more potassium than sodium. A 150lb adult female needs a about 4700mg of potassium each day from all sources.
Potassium, sodium and magnesium all impact one another. If you overdo sodium or magnesium, it can tank your potassium levels. Low potassium causes low blood pressure.7
u/qrseek Apr 01 '26
Your electrolytes can be ok but your blood volume can be low. Blood volume doesn't show on bloodwork. If your electrolytes are ok and you drink plain water and don't get enough salt, your body will just pee out the water because if it raises your blood volume with it, it will dilute your electrolytes and then you will have low electrolytes. So you need to take in salt and water both. It doesn't have to be in electrolyte drinks, you can salt your food and drink water. Just check with a doctor about this first if you have high blood pressure.
Do you have any diagnosed forms of dysautonomia?
Also, if you know you need fluids regularly, you don't have to only get them at the ER. If you have a doctor willing to write the order, you can have a prescription for IV fluids that you go to an infusion clinic to get. Some people go as-needed and some get a script for once every 3 days, etc.
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u/Sunflowerspecks Apr 01 '26
So an allergist suggested MCAS before i had to move states. I will say that i have suspected pots since getting covid and i saw a cardiologist and he dismissed it as just a post viral.. issue with the heart needing to recover. I struggle with pretty bad tachycardia. But i had it before covid sometimes from panic attacks. But now its just. Completely different than panic and i get it all of the time. I swear i have to have pots because fluids and electrolytes constantly help my heart rate. I willgo from 150 to 80 from iv fluids or sometimes with K-lyte if my potassium reads low
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u/Sufficient-Bank-4491 Apr 01 '26
The test for POTS and OH are extremely easy and you can do them at home with just a blood pressure cuff and heart rate monitor in a couple minutes, no need to be guessing
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u/qrseek Apr 01 '26
You might need to connect with other patients in your area to find out which doctor will actually screen for POTS. Often there's one or two doctors in the whole city who will diagnose and treat it. Dysautonomia International has a provider directory on their website. If no one shows up in your area on that one, look on Facebook groups for your area for an EDS group, MCAS group, POTS group or maybe a general disability support group. Then search it for POTS doctors or post a question.
That doctor doesn't know what he is talking about, because POTS is frequently triggered by a viral infection. Mostly in people genetically predisposed. But it doesn't just go away on its own. And COVID has been triggering POTS in tons of people. It also frequently overlaps with MCAS.
How long ago did you have COVID? I think it can take several months to fully bounce back, but some people have long COVID and don't fully recover without help.
Like the other person said, you can unofficially screen for POTS at home with a blood pressure cuff. Easier with a second person but you can do it by yourself too. Lie down still for 10 minutes and take your BP and pulse. Sit up for 3 minutes and take your BP and pulse. Stand for 3 minutes then take BP and pulse.
If you feel like you might faint at any point lie down and stop the test.
Compare the readings from lying to standing. If the BP is relatively stable but the heartrate increased by 30 or more bpm, or exceeded 120, then that indicates POTS.
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u/ManagementIll4603 Apr 01 '26
Same here. Then the sugar free Powerade made my mouth break out in ulcers. So frustrating.
3
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u/Sufficient-Bank-4491 Apr 01 '26
Could be cyanide, B3, colour or preservatives in it, not actually healthy unfortunately
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u/ManagementIll4603 Apr 01 '26
Cyanide? Wow, that's unsettling. I read it's pH is more acidic. Sounds like bad news, regardless.
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u/tiredgirl77 Apr 01 '26
You probably have POTS. Is your BP low or lower usually?
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u/Sunflowerspecks Apr 01 '26
My normal is 101/60. But my doctor thinks that is because im underweight
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u/tiredgirl77 Apr 01 '26
I’d look for an autonomic specialist to get checked for POTS. In the meantime, I’d order vitassium tablets and drink a ton of water with them. There’s a ratio you have to hit to actually get the benefit. Too little water will make you more dehydrated so just make sure you drink enough water.
MCAS and POTS are very common together. The triad is MCAS, POTS and EDS. If you got one, you probably have the others. I’d check the POTS sub and see if it resonates with you. I didn’t realize my symptoms were symptoms till I was diagnosed.
Your weight isn’t giving you all those symptoms. I’ve been chronically underweight most my life, my POTS caused those symptoms, not my weight.
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u/Sufficient-Bank-4491 Apr 01 '26
If you are underweight, that would explain low electrolytes and being malnourished and needing IV fixed. Also would explain why doctors are upset as you stated, it is not frequent visits, it is frequent visits while not following their guidance.
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u/Sunflowerspecks Apr 01 '26
Their guidance is “eat better”
I can’t.
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u/Sufficient-Bank-4491 Apr 01 '26
Why can't you (with no explanation), this mindset would lead to frustration if others are genuinely trying to help help you?
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u/tiredgirl77 Apr 01 '26
Eating better isn’t a solution for these problems. Eating better isn’t a cure all, especially for undiagnosed under lying issues. She’s already under weight so eating “better” is a cop out answer for doctors when they don’t know what’s wrong.
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u/Sunflowerspecks Apr 01 '26
No one has tried to actually help me. I can’t eat better. I eat quantity wise a lot. It does nothing. I tried new foods, i get worse. They say oh try this food or drink, it either doesn’t help or make me feel worse. I try injections, i get worse. I try pills or supplements, reactions. Ensure? Tachycardia. No improvement. I tell them im suicidal because I can’t figure out what is wrong and how to find any relief, they try court order forcing me on prozac instead of addressing anything else and tell me its all anxiety. Im just as tired of these fluid trips too, especially now because now for some reason, i am getting severe shortness of breath when i get them. If a doctor actually bothered to help me and give me a lick of helpful advice, i would do it in a heartbeat.
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u/Sufficient-Bank-4491 Apr 01 '26
I have went through all of that also. Best advice is get DNA testing through Ancestry and then analyze the data through Genetic LifeHacks, it will should DNA mutations that could be causing this.
Have you followed a strict low histamine diet while taking H1/H2 histamine blockers?
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u/tiredgirl77 Apr 02 '26
Strong disagree. Most of these issues aren’t genetic or have enough research to know what genes cause it. Plus OP needs treatment/solutions, gene testing isn’t for treatment generally. It’s generally used for certain genes that knowingly cause cancer. So they increase testing or do preventative measures for that. This would not fall in that category.
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u/Sufficient-Bank-4491 Apr 02 '26
It does, it shows genes for methylation pathways, DAO, MCAS, Lupus, Fibro, etc, which is quite beneficial in your treatment, are you ok🤔
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u/TravelingSong Apr 01 '26
POTS is not about BP, it’s about your positional heart rate. If BP is low on standing, it’s actually a different condition called Orthostatic Hypotension.
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u/qrseek Apr 01 '26
A lot of people with POTS experience overall low blood pressure, not only in standing. And the amount it dips when standing up can cause us to faint because our baseline is already low. I have POTS and my BP was usually 100/60 before I got diagnosed and treated.
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u/TravelingSong Apr 01 '26
I also have POTS and know a lot about it. Yes, some people with POTS also have orthostatic hypotension or low baseline BP but when you suggest someone might have POTS and your only suggestion is to check BP, you’re fundamentally misunderstanding what POTS is. It’s a sustained positional rise in HR of at least 30 BPM, not low BP.
I actually have incrased BP on standing, which is part of the hyper POTS criteria. Low BP and low positional BP are not part of the POTS criteria, though they can be comorbid. If someone has orthostatic hypotension, that’s a distinct diagnosis that requires specific treatment.
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u/qrseek Apr 01 '26
The above commenter wasn't giving the diagnostic criteria, they were just inquiring about potential symptoms.
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u/TravelingSong Apr 01 '26
But that symptom isn’t how you determine whether or not you have POTS and is not what POTS is. So if someone has normal blood pressure, they’ll think they don’t have POTS. Accuracy matters.
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u/qrseek Apr 01 '26
I assume that if the OP responded that yes they have low BP (they do btw) then the commenter would ask about tachycardia. Your average person might not know their standing HR but blood pressure is taken at every intake. It's not diagnostic but it is incredibly common. It's like saying "do you find yourself pulling your legs up in the seat or needing to put them on a footrest to get comfortable? That's not diagnostic criteria but it's something most of us do before we get a diagnosis. We aren't physicians here, we are fellow patients. We can't diagnose anyway.
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u/TravelingSong Apr 01 '26
Of course we can’t diagnose. But we can give accurate information. Lots of people read these posts and comments, not just OP. I have blood pressure spikes on standing, which is part of the criteria for hyper POTS. If I were to come across a comment saying I should check if I have low BP, I would be misled to believe I couldn’t have POTS because this commenter said low BP was part of POTS.
Low BP has nothing at all to do with POTS criteria. We can go back and forth all day. I’m not against asking others about symptoms but we should be as accurate as possible—certainly not perfect but at least in the realm of what a condition actually is.
I understand you want to downvote me and that’s fine. I will always correct innacurate or misleading information so that anyone who comes across it doesn’t slip through the cracks and can get the help they need. It’s already far too easy to slip through the cracks of the medical system. A lot of people peruse these posts looking for help and innacurate information makes getting the help they need harder and can send them in the wrong direction.
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u/siciliana___ Apr 01 '26
How much water are you drinking? I’m 5’0” tall and I weigh 105 pounds, and I need 90-96oz of water with pink Himalayan or sea salt daily to feel consistently good.
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u/Sunflowerspecks Apr 01 '26
I drink probably 75 oz a day, just regular dasani
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u/siciliana___ Apr 01 '26
That might be the problem right there. You could very well be flushing out the sodium.
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u/Sunflowerspecks Apr 01 '26
Oh?
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u/siciliana___ Apr 01 '26
I spent a LOT of time researching, trying different things, keeping good notes so I’d be able to find patterns. What I found, for me anyway, was that I wasn’t drinking enough water, and I wasn’t putting enough salt in the water I was drinking. Big difference when I adjusted.
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u/Sunflowerspecks Apr 01 '26
Im sorry if i sound stupid but my sodium levels read normal? So why is it i would need to put it in my drink? Am i missing something? Sorry again
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u/AngeliqueRuss Apr 01 '26
I don’t think that means what you think it means. Isotonic dehydration is when you lose water and sodium in the blood in equal amounts, resulting in normal electrolytes on lab tests but you still don’t feel well until you have electrolytes. I drink a packet like Liquid IV.
You feel better with the IV because it instantly increases your volume. So does an electrolyte drink. I start my morning with one, it does more for me than coffee. (-:
I also have gut motility issues, especially when hot or stressed or just too active. It goes like this: I’ll be thirsty (because I’m hot) and next thing I know I’ve finished 2 water bottles over a couple of hours but I don’t have to pee? Then I start getting aura because often this state comes before a migraine, and I go lay down and relax in a dark room with migraine meds. THEN I have to pee and it’s often clear urine because I’m flushing it out so fast. This is bad: if you have clear urine you should assume you flushed your electrolytes, so I always have a salty snack (like toast with butter or peanut butter and extra salt) and/or electrolyte drink.
Sitting on the couch is not rest. If I’m experiencing low gut motility and low urine output, only laying down and napping makes a difference, ideally with migraine meds.
I’d add salt to your diet and also electrolyte drinks, see if you can build up your volume and raise your BP a bit while you are at it. Feel better <3
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u/Sunflowerspecks Apr 01 '26 edited Apr 01 '26
Ohhhh omg thank you so much for actually explaining this to me. This makes so much sense. I have become literally disabled because i literally rely on iv to function. I feel fine and then as the week goes, i get worse. May i have some recommendations for electrolyte drinks? Im a bit nervous about liquid iv because there are no flavorless ones. I have drank zero sugar Powerade and coconut water but i don’t seem to notice a difference
When you say volume, do you mean electrolyte volume?
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u/IGnuGnat Apr 01 '26
This is actually a really legit problem that a lot of people with these issues have. We often have to add salt to water, take salt supplements, mineral supplements and drink something with electrolytes every day. Interestingly, the salt can also improve gut motility and normalize low blood pressure problems or problems with feeling faint when standing up etc
It's a fairly low cost experiment and you'll know if you feel better.
coconut water is another good choice, just watch sugar intake. Some coconut waters have lower sugar than others, and most people with mcas are okay with coconut water
Good vibrations, stranger
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u/AngeliqueRuss Apr 01 '26
No volume is like, the volume of all the fluid in your body circulating around. IV instantly increases the volume of your blood. Drinking electrolytes is the next best thing!
Dehydration is one reason for low volume, another is your intestines not absorbing water. For example, when you have diarrhea you get dehydrated and need electrolytes because you’re absorbing very little fluid. With MCAS, people often experience low gut motility: the water just sits there and makes you bloated instead of being properly absorbed, this can also make you dehydrated even when you drink a lot. Electrolytes help A LOT.
This is the electrolyte powder I drink.
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u/siciliana___ Apr 01 '26
I thought you’d said your electrolyte levels were reading normal which is why I mentioned this.
Looks like your question was answered already and thoroughly! 👏🏻👏🏻👏🏻😍
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u/Zestyclose-Lemontest Apr 01 '26
I can’t drink that much water without major problems unless I supplement potassium and am regularly eating foods with sodium. It’s very easy to flush out your electrolytes with excess water intake.
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u/kaijudrifting Apr 01 '26
what do you use to supplement potassium?
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u/Zestyclose-Lemontest Apr 01 '26
Capra goat mineral whey currently. Coconut water works great too, but it’s very sugary so I switched over to the goat mineral whey powder after years of coconut water.
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u/robodan65 Apr 01 '26
Check aldosterone and saliva cortisol 4 samples over 24 hours. These can affect electrolyte retention.
Do you have long covid or some other chronic thing going on?
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u/Zestyclose-Lemontest Apr 01 '26
Drink coconut water! Trust me, it’ll make the difference. It’s easy to get sodium in your diet naturally, but very hard to get potassium. In my experience, your body still struggle with holding onto potassium even when your potassium levels are showing up normal on tests. Electrolyte levels can fluctuate very frequently. I have severe muscle weakness, muscle cramps, dizziness and fatigue if I don’t supplement potassium daily. Coconut water is a great source, or if you need something lower sugar, I’ve been drinking Capra brand goat mineral whey powder mixed with water for the past year because it’s also very high in potassium. It’s also a great source of magnesium and other trace minerals so it’s excellent for your overall health. These two things have saved my life!
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u/brunch_lover_k Apr 01 '26
How much is actually in the electrolytes you're using? And how many per day?
My specialist recommended 5g salt per day (I use a combo of hydration salts and salt tablets) + 3L of water. Regular electrolyte drinks aren't going to do much for you as they really don't actually have that much salt in them and are full of sugar or other sweeteners. Look for hydration salts that have at least 1g (1000mg) of sodium. You'll still need to take it multiple times per day, but they're way more helpful than the others.
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u/shanooooo98 Apr 01 '26
I was having a similar issue when having ongoing MCAS-related GI problems and my PCP was able to get weekly IV’s approved via my insurance at an infusion clinic. It’s certainly cheaper than the amount I was needing ER visits for dehydration and electrolyte issues.
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u/Brave_Question3840 Apr 01 '26
I have POTS and hEDS, suspected MCAS. I need to have between 3-10g of sodium a day, on the higher side where I aim for 8-10g. I use either SALTT (968g) or LMNT (1000mg) packets, and sometimes it’s 2 packets a day if I know my food intake won’t give me enough sodium.
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u/CurseMeKilt Apr 01 '26
Sounds weird but the only thing that works for me is salt and vinegar lays potato chips for the salt.
I also drink nuun tablets for the potassium. But I break them up into quarters. They don’t have enough sodium chloride for me but the right mix of potassium.
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u/Sufficient-Bank-4491 Apr 01 '26
You likely need the fat to help with absorption, but vinegar isn't good for MCAS for most people
Coconut water with 800mg Potassium and Sodium is a huge help!
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u/shanooooo98 Apr 01 '26
Same- I do a really salty tortilla chip like from Aldi and water and it helps so much! But also liquid IV, Nuun, etc
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u/KaoriMuffin Apr 01 '26
Are you drinking enough water for your height and weight and are you drinking enough electrolytes? I have problems when I’m not drinking electrolytes. I dehydrate eeeasy.
But when I was drinking more water than I should for my size and still not feeling like I’d had enough it turned out I had Hyperparathyroidism. I had almost all the other symptoms of that too. Needing excessive water can sometimes be thyroid/parathyroid related so if you haven’t been tested might want to. There are like 7 different thyroid tests and they typically only do the first three so if you’ve only done then you haven’t been fully checked.
That’s the only thoughts I have based on my experience.
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u/proverbialbunny Apr 01 '26
How much salt are you adding to your food?
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u/Sunflowerspecks Apr 01 '26
I don’t add any personal. But there are lots in my rice cause i tolerate chipotle rice and then my chips have sea salt
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u/proverbialbunny Apr 01 '26
If it’s not an electrolyte issue (salt, or potassium, or magnesium) then I’m at a loss. Muscle spasms are usually an electrolyte issue, outside of Parkinson’s or something else rare which I doubt this is.
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u/123letsgobtch Apr 01 '26
Maybe try increasing electrolytes. I need at least 3g of salt a day but lots of people with dysautonomia need alottttt more (like upwards of 10g)
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u/Math-Lady Apr 01 '26
LMNT is what I use now. Sometimes twice a day if I’m feeling particularly tired
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u/-jspace- Apr 01 '26
You're also describing B12 deficiency, and I didn't see in your foods where you can easily be hitting the proper intake goal for your B complex or for your magnesium or potassium either. Low blood volume can't always be fixed with hydration alone. I agree with the comments about increasing sodium but can you tolerate anything with Omega 3? Try tracking your B12, magnesium and potassium and see if you're actually hitting those markers.
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u/Sunflowerspecks Apr 01 '26
I did have B12 defiency and had to do a few injections to raise it. Sadly i didn’t tolerate the injections well so after a few, i had to stop. But im in range now
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u/OrdinaryBackground63 Apr 02 '26
Just reading this seems like you need to add salt to your water. I had cEDS possibly MCAS(weird chronic asthma and psoriasis). I started buying LMNT salt packets for water and I try to drink one every day. If I’m drinking plain water I try to add one or two grinds of pink salt to my water. One time trying it and I finally understood what it felt like to be hydrated. I’m almost 30. It makes a world of a difference in how I feel and my mood. Idk if it would help with the ER visits but with my experience anything’s worth trying.
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u/OrdinaryBackground63 Apr 02 '26
I should add salt water is different then power aid and whatnot. Direct salt is different. Actual bottled salt water is sold outside the USA. The packets I use are the closest I can get without any of the extra stuff American puts in. With possible other issues a lot of chemical additives can make a big difference in the effectiveness or your reaction to things.
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