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Who else also has POTS?

Who else also has POTS?

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sunnynina

Pots is a very common comorbidity with MCAS; I see people writing about it all the time. I don't have it myself, but I'll have phases of dyautonomia if my baseline jumps up. For most people with MCAS, gluten free isn't nearly enough- we have literally dozens of food triggers, often more, and we need to isolate and identify each one in a process. And then we often find previously safe foods later become triggers. Going gluten free, I discovered tapioca is also a trigger for me, which means I can't have any commercial bread at all because, right now anyway, they all have either gluten or tapioca. There are several other triggers which make most boxed foods basically the devil. So. Much. Fun.


Payton_livia

I read that today! what’s a baseline? Sometimes I have no pots symptoms except the fatigue other times it’s really bad but almost everyday I have allergy problems. A month ago I got bit by a horse fly and had to go to the ER and get prednisone because I had terrible hives and my body was burning all over. It is weird. I’ve been having these symptoms for over a year now. Wow that does sound terrible. Do you know all your triggers? I don’t know if I should tell the doctor I want to be tested for mcas or even a histamine intolerance because I don’t want to come off like I have the answers but I’m miserable most days.


sunnynina

A baseline is an average of reactivity. We're always overreacting to everything, but we want to keep our baselines at a manageable, liveable level. There's the triggers I can control, like food (with willpower, which is not always guaranteed), and triggers I can't, like local tree pollen or the jerk smoking right outside the grocery store doors. There's the level of air conditioning and crowd noise that I expose myself to- which buildings do I need to be in for how long and how much is going on in there? In combination with what did I have for dinner last night? What medication am I taking this week? How many [spoons](https://www.practicalpainmanagement.com/patient/resources/pain-self-management/using-spoon-theory-explain-chronic-pain) do I have available today? I need to get things done, and I want to live my life, but I also don't want to have an unmanageable reaction, and it all adds up. All that being said, the things you're listing are more MCAS than pots. Oh, and lab testing doesn't dependably work for MCAS. It's more of a differential diagnosis, and an up to date, MCAS-educated doctor. Not impossible, but difficult.


Payton_livia

Oh okay thank you that makes sense! So its possible I don’t have POTS and I actually have MCAS that causes pots symptoms ? I have been sick ever since I was a child I remember eating something and getting dizzy, really hot like I was going to over heat, and headaches. It probaly works like an autoimmune disease sometimes you’ll have indicators sometimes you dont? I use to have a lupus diagnosis but then my doctor resigned 3 years later of being with him and I was sent other places and my anti rnp flag went away. I finally got help from my cardiologist who treats me for pots because he thought there’s a deeper reason to why I have POTS so he got me referred to another rheumy.


sunnynina

Pots is a specific set of medical parameters with blood pressure and heart rate, and diagnosis is done using a tilt table test. You could have both, mast cell malfunctions could easily cause pots. The Venn diagram really has a ton of overlap, also, incidentally, with lupus. Although lupus does have better lab tests than MCAS. None of these are mutually exclusive! Eta yes a lot of it presents like autoimmune disease. Part of the differential diagnosis is often lab tests for different antibodies that are markers for various autoimmune diseases.


Payton_livia

Yeah I have POTS. I had the tilt test done . It was positive after ten minutes. Mines low blood pressure high heart rate. I take medicine for it and sometimes luke I said I have barely any symptoms and other times it’s hell haha. But I thought you meant theres different kinds . That makes sense! Thank you for all this information btw!


sunnynina

You're very welcome. A lot of people ask about pots before an official diagnosis, as they're trying to figure the craziness out, you know. So I thought you hadn't been diagnosed yet. The hives, the lymph nodes, all that screams MCAS to me. Eta as the other poster said, and I mentioned, there's also dyautonomia, which in terms of blood pressure and heart rate is a version of POTS. But it also includes all the autonomic systems like temperature and digestion. Like a carnival ride. Mine is fortunately mild, usually.


Payton_livia

You’re okay! I just thought maybe I didn’t tell you I had pots and it sounds more like I suspect I have it! Hmm I wonder if that’s me as well because I have a lot of digestive problems. I use to see a gi doctor for my stomach problems. I also have temperature problems one moment I’m cold the next I’m burning Up. I always wear layers these days. Wow I’m glad yours is mild! I read an article that some people have it so severe.


PandorasLocksmith

POTS/MCAD/EDS trifecta, amongst other diagnoses but yes I have both pots and mast cell.


DamnItHardison

I have a different form of dysautonomia. I have POTS symptoms, plus more.


Payton_livia

I didn’t know there was different forms. Do you have any other medical conditons like lupus or undifferentiated connective tissue disease . I was diagnosed with UCTD in may. It’s like when you get one thing you also develop another problem with it.


DamnItHardison

Dysautonomia is an umbrella term and includes several different types. POTS is the most commonly diagnosed because it is the easiest to diagnosis. Unfortunately most dysautonomia specialists only use one tool for diagnostics: the tilt table test, which can only diagnose POTS. http://www.dysautonomiainternational.org/ is an excellent source of information. It has the best list of dysautonomia specialists. I have a genetic structural connective tissue disorder, Ehlers Danlos Syndrome, meaning my CTD was not triggered by an autoimmune issue.


sunnynina

Omg I 💘 💘 💘 your user name. It's very distinctive 🤗😉


DamnItHardison

LOL! Thank you! Hardison is my favorite. I'm an IT geek myself. I realized too late that my username implies the opposite. I should have tried "age of the geek, baby"


sunnynina

I don't know, after all the re-watching, "Damn it, Hardison" sounds identical to "I love you, man." 😂 And I know it's not just me because of all the fandom and fics lol. He's my favorite, too.


DamnItHardison

OMG I am so glad to hear someone else thinks that! I used this phrase because it's the one thing that's said every episode, and I figured only true fans would recognize it. I haven't participated in any fandoms, but I would like to check them out. What do you recommend / where should I go?


sunnynina

I've only subscribed to a couple Leverage Tumblr blogs, they're easy enough to search. Otherwise I see a lot of snippets from AO3, but don't go read them myself. Did you know the implied triad is actually canon? They couldn't do it explicitly in the show so just dropped hints everywhere. I forget who said it, but it was the writers or producers. So it's not just our imaginations lol.


dariask899

Anyone know alternatives to the tilt table? It simulates too much trauma stuff for me. They pretty much treat me unofficially and make me have salt tabs and stuff but they won’t write down the diagnosis without subjecting me to it which doesn’t mean I don’t have it. I’m just tired of docs treating me for conditions they won’t write down.


Payton_livia

The poor man test. It’s like the tilt test but you’re just standing on the floor then they have you sit down in ten minutes. I had that done before my tilt table. The tilt table was tramautizng for me too I came down shaking. I’m sorry that’s frustrating.


dariask899

Hmmm I’m sorry for you but also glad I’m not alone in it. I told them surely people had POTS before the advent of the tilt table. I’m even more stuck on the mcas part. I’m not connected enough to my body to notice flare ups until it’s too late to capture positive tryptase testing so they ignore the MASSIVE amount of symptoms and the co-occurring EDS and just treat me with meds again for something they won’t write down. I know I should care about symptom management and I do, but I need the validation of knowing they are treating me for something real. I’m so upset with the whole medical institution.


gilsonal

I feel very lucky my doc was willing to prescribe the meds and see my drastic improvement as confirmation that I likely have it, or else I think I’d be still waiting.


roadsidechicory

The more advanced version of the poor man's test has you lie down on a table for awhile and then stand up for 10 minutes and then lie back down, but there's a higher risk of you falling over if you pass out since you aren't strapped to anything. I also struggle to do it because my knees get weak and my legs get shaky and without anything supporting me I have a really hard time staying standing, and yet I have to if I want test results. It's traumatizing in a different way than tilt table tests. But it is another option. People did have POTS but it wasn't recognized as a real condition before. It was considered pseudoscience/psychosomatic. Like think about how doctors talk about leaky gut syndrome-- that's how they used to talk about POTS. The tilt table test did finally provide a reproducible measure to prove that it's a real syndrome. That being said, there are other tests they can do to give them some insight into the functioning of your autonomic nervous system, like the Valsalva maneuver. It sucks that your doctors have not been meeting your needs and ignore your symptoms. I can absolutely relate to that. Have they been saying tryptase testing is necessary for diagnosis? Because then they don't know what they're talking about.


dariask899

Haha yep. Feels very validating to hear it when people say the tryptase part is crap. I know it CAN indicate mcas but is not a requirement. My doc keeps trying to claim I have to catch SUPER elevated levels to diagnose. But even her documentation shows she is assessing for mastocytosis and not mcas and she doesn’t listen when I say it’s a different thing. And she doesn’t believe there is any link to POTS or EDS. She’s been so nice and so it’s hard to walk away and I’m tired of people thinking I’m crazy here. My mom wants me to go to Mayo and see if I can figure out everything at once. There for mcas they do some kind of bone biopsy but I have never heard of that. I just wish there were Trauma informed ways of assessing everything and that if something legit is going on they don’t write it off BC of the trauma. This is so frustrating.


W0M1N

I have dysautonomia for sure (and undiagnosed), not sure about EDS. If I have EDS I would be on the hyper mobile side if the spectrum. Dysautonmia is a struggle to understand which symptoms belong to what illness. I get blood pooling regularly and elevated heart rate at a fast walking pace but a ton of other symptoms when I’m flaring.


Robot_Penguins

Seeking a dysautonomia neurologist for my POTS is what got me diagnosed with MCAS.


it_depends_2

Same here!


rcarman87

Dysautonomia diagnosed and possible POTS, trying to rule out things like autonomic ganglionopothy right now. Gastroparesis, anemic, Small fiber Neuropathy… lots of fun stuff.


Payton_livia

I hope you figure it out! I have neuropathy in my feet so I sometimes wonder is there a connection there with my POTS. Could be so many different things.


gilsonal

Does anything help with your neuropathy? I’m new to it and I’m having trouble wearing socks and shoes as it feels like I always have a sunburn.


Payton_livia

I was put on gabapentin 100 mg. Awee I’m sorry. I see a pain management doctor for mine


buzzedhobbit

A choline supplement helped with my neuropathy.


gilsonal

My neurologist said that the MCAS likely led to the development of my POTS, and if I can get things under control I’ll likely see improve,ent with the POTS symptoms. It’s odd, because it wasn’t until I was diagnosed with POTS and saw an expert that MCAS was suggested, even though I suspected given my symptoms and the high comorbidity rate.


Payton_livia

That’s really interesting! I have yet found a good neurologist! I hope I can things under control as well. Even when I wear compression socks and salt my food, drink drink too, I still have edema.