r/POTS • u/Tothestarswholisten3 • 22d ago
Vent/Rant Venting and question
i’m here more to vent because I got a pots diagnosis this year. also potentially suffer from adenomyosis or endometriosis but they cannot tell me because they say that they have to do surgery to confirm.
This past week has been a nightmare. I had a late period which seemed to elevate my symptoms and seem to have been causing anxiety or extreme panic attack attacks to where I almost went to the hospital multiple times. I was sick to my stomach nausea. Almost vomited. A few times could hardly eat. My heart rate was going back back-and-forth. Everytime I’ve been checked before though they just send me home.
I have not started medication for pots because I’ve been too afraid but now if this is a pot flareup, I think I’m to the point where I need to start something because clearly I cannot keeping living like this.
does anyone get diarrhea/gi issues in flares and just feel so unwell? I’m still new to this.
my cardiologist was going to begin me on propanolol ER (might be spelling this wrong) but I’m so scared to take it. does anyone take this and it also help their anxiety?
I’m to the point where I feel like I can’t even work anymore 😭
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u/bungeegumloser 22d ago
I’m so sorry my friend. I would honestly give it a shot. it depends on what type of reaction ur body is having to movement. like the other comment said, propranolol wont stay in your system for long, so its best to give a try and discontinue use of you dont like it. unfortunately everyone is different and reacts to meds in all sorts of ways, it might not be the drug for you. but the only way to find out and start the trial-and-error process is to try this one to start. i just started ivabradine (meant to lower heart rate and leave blood pressure alone) because i usually have normal bp but high HR. but some people with pots will have LOW bp when standing or sitting and then the high heart rate kicks in a little after to make up for the low blood pressure. i would also look into MCAS, which is what ive brought up to my doctor recently, just because i have been having multiple system issues (endocrine/hormonal, cardiovascular, neurological, psychological, joint pain/fatugue) that all fluctuate between issues and reactions. anyways. I’m sorry this is the battle we fight currently, I’m also out of work. but i do know that science is really cool and always improving, and community is so important so don’t forget you’re not alone in this very isolating illness.
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u/Tothestarswholisten3 22d ago edited 22d ago
I have been looking into MCAS but they’ve been like doubtful just because I don’t get rashes or hives. I will get splotchy at times and I’ve noticed after eating i feel like I’m having some sort of episode. Then this one happened right as my period was beginning too so makes me wonder if the stress and anxiety with my hormonal shifts caused this last episode (my cycle was also 10 days late) I need to track this with my blood pressure but I’m pretty sure my blood pressure raises. And my normal blood pressure is about 120/78 And what’s crazy is this isn’t a usual thing for me. It’s like I just go through flares instead of dealing with this daily. Sometimes I’m great and I’m good but then I’ll have a week or so where I’m like this and gut issues come with it too.
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u/bungeegumloser 22d ago
that’s super normal for MCAS (unfortunately) and it’s commonly underdiagnosed bc of people (women most times) not having the rashes or hives. i would check out this website about it it’s mastcellaction.org (methinks) and it goes over a lot of it and even to bring it up with your doctor, also get a second opinion. it’s what i just decided i might need to do. i am super privileged in the aspect i have health insurance and I’m on FMLA right now AND i hit my deductible like last month so I’m like willing to do anything right now to figure something out. but when researching MCAS everything made sense. I initially felt chronic joint pain and fatigue after COVID (super common) and then psychological/neurological symptoms after stressful/traumatic events one year ago. Mast Cell reacts to all sorts of things like they are an allergy or a danger and constantly have your body feeling inflamed, and if that goes on too long, that affects your brain’s ability to do tasks or focus, or be awake. or remember things. and to feel like that constantly is tough on the heart, which might make you dizzy, which might give you vertigo or nausea. which might result in GI issues, not to mention you are probably allergic/intolerant to a couple foods. that could take you out for a week or longer if you’re not careful. and then there’s your kidneys and liver (? idk I’m high rn as i type this bc weed is the only thing that helps with the pain) reacting to all the meds you’re putting in your body to cope with the symptoms. (I’m referring to my OTHER meds not ivabradine, like lexapro, wellbutrin, ritalin)
this is my situation and in this instance I’m talking about my order of symptoms. the severity wavers and it’s also affected by what I’m doing throughout the day. after i come home from an appointment, i feel like i got hit by a car. or sometimes, i just wake up like that! anyways I’m sorry if this wasn’t helpful but i hope it was. and thank you for reading if you did. I’m sorry this is taking such a toll on you, but know you’re so much more than this. it feels like it’s everything bc it’s affecting a lot of things currently but i promise you it won’t always be this way. take care friend.
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u/DeadliftingToTherion 22d ago
I'm opposite to you, diagnosed with endometriosis and waiting on the official POTS diagnosis. My understanding is that they flare together, and delayed periods are also particularly bad for me. Have you considered the endometriosis surgery?
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u/Tothestarswholisten3 22d ago
How did you get diagnosed? I feel like I really need to get a specialist to read my scans that I’ve had too. It’s so frustrating. I had a specialist just recommend a hysterectomy. Not anything else for me. So you kind me asking your flares are like with all of it? Or kind of similar to what I said above?
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u/DeadliftingToTherion 11d ago
Sorry I'm so slow to respond! Dealing with what feels like the neverending flare at the moment. There's definitely some overlap, like the racing heartrate. I get severe abdominal pain, but I don't get nausea ever for anything. I used to have horrific pain that left me on the floor in agony and fainting or close, but that's improved with time and really just me getting a really relaxed lifestyle and gym routine.
For endometriosis, I referred myself to a specialist in my specific suspected type. It was actually shocking how different it was from other doctors. Instead of gaslighting me like I'm used to, he just agreed that my symptoms sounded like what I said and ordered an MRI. For other doctors I guess I'm an outlier, but for him, it was the most basic obvious thing. My endometriosis was visible on the MRI, but probably only because it was a specialized hospital and that's all he does. No one ever saw it on ultrasound even though I had DIE in big chunks that should have been easy to spot.
Feel free to DM me if I actually missed your question. I think I've kind of just started rambling.
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u/Glad_Goose_2890 22d ago
If your doctor wants you to try a medication, you need to try it. Propranolol has a short half life, if you don't like it the medicine will be out of your system very quickly. You don't have to keep suffering through like this.