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hi everyone,

i am new to POTS ... I will tell you my whole story a bit later perhaps - it's a long...ish and frustrating one.

i've been diagnosed after a tilt table test 3 weeks ago and have been prescribed midodrine 10 mg 3 times a day, plus tylenol 3 for some excruciating chest pains of undetermined nature (non cardiac i've been told, as i have had a lot of cardio tests done - echo holter, loop, stress test, ekg, blood work etc etc), plus propranolol as a beta blocker.

2 days ago i've taken my 10 mg midodrine in the afternoon, and 1/2 hour later chestpain striikes so i take a tylenol 3. My bp went from 100/60/80 (roughly) to 158/90/67 (roughly) in about an hour. I took 10 mg propranolol hoping to counteract that and only 2 hours later my bp was around 95/65/65. Is this normal? Not to mention that the tylenol 3 did nothing for my chest pain.

is it possible that the chest pain is brought on by the drop in heart rate? (my heart rate - even with the meds- stays in the 80s - 90s all day long, until i take my afternoon midodrine, so around 8 - 9 PM it's in the 60s or so).

yesterday, i've only taken 5 mg midodrine around lunch, and 3 hours later the same story happened again my bp/hr spiked almost the same as the day before.

is this normal?

also, are any of you experiencing excruciating chest pains during rest that come out of nowhere?

forgot to mention the 2-3 liters of fluid i drink a day and the extra salt i am consuming on a daily basis, i still spend lots of time in bed, but i try to exercise as much as i can - at least 15 min (2 miles or so) on my stationary bike, plus, i walk as much as i can around the house and i use a TENS unit to keep my muscles from deconditioning whenever i am unable to exercise.

i only have an appt with a pots specialist in 2 weeks, meanwhile i'm desperate for some answers.

thanks for taking the time to read this (i hope i'm making some sense, as i am scared and worried and frustrated) and for your answers.

alex

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Chest pain is quite a common and unexplained symptom It is my most disabling symptom and no one has given me a satisfactory answer why yet. I have even been told by cardio that it is not pots as on a bad day it continues even when lying down and can go on for hours. I think it may be related to elevated BP sometimes. But in cardio terms there is nothing wrong, thats why it is dismissed. let me know if you get any answers. Good luck.

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I get chest pain with midodrine, or any type of stimulant. My troponin became high when I was on mestinon and developed chest pain, so it's always good to get this checked out, especially if it is new or worsened suddenly. If I'm taking midodrine, I have to take my carvedilol with it (an alpha-beta blocker). I've read someone else on here who takes clonidine with midodrine. It seems counterproductive, but I do get some energy from the midodrine but the carvedilol reduces the chest pain. I don't take either midodrine on a regular basis, and only 2.5mg when I do need it because of the chest pain that results for me.

It may be good to run this new symptom by your prescribing doctor today.

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thank you both for your answers.

in terms of my chest pain - i've been having it since July - shortly after being prescribed bisoprolol for my tachycardia, but none of the drs i mentioned this to have anything to say about it. Bisoprolol gave me a whole bunch of side effects that i no longer have since switching to propranolol (after the pots diagnosis 3 weeks ago).

yesterday i got to the ER due to the bp spike - it really scared me - not before taking an extra dose of propranolol. They kept me on the monitor for about 4 hours and sent me home telling me that i did the right thing by taking the propranolol. By the time i left the hospital my bp and hr were normal.

i'm still looking for answers and i will definitely be talking to my dr about what goes on.

thanks again

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I couldn't take the midodrine - it really rasises your bp. If you already tend to have higher bp's - might not be the best thing for you. I know this is the start of your journey and you will learn allot over the next year or so. You will start to figure out where you fit as far as the different subsets of POTS. What is good for one type, is absolutely wrong for another type. The propranalol is lowering your bp from what the mididorine is doing. The Mididrine constricts your veins - some of us, have over constricted veins and this isn't the right med for us.

Sorry, you had to find us because of this illness. But, welcome!

Issie

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hi Issie,

thanks for your answer.

i'm starting to learn already, i already have tons of questions for my dr, and you can count on me posting a bunch of my questions here as well.

I'm not even 100% sure I have pots but i'll go with the dr for now.

my symptoms in a nutshell:

-increase in heart rate from supine to sitting to standing of 20-30 bpm (50 bpm during the tilt table test done at 3:00 PM after spending the first part of the day undergoing a bunch of other stressful tests and not eating or drinking anything; i fainted 6 min into the test)

-occasional palpitations

- occasional mild headaches

-used to be lightheaded because of meds i was taking (or so i think, as i no longer have that symptom)

-panic attacks

- chest pain ranging from mild discomfort to excruciating

- some diffuse pain in my arms and legs (not sure if it's the muscles or the joints)

- deconditioning (spent 3 or so months in bed because of chest pain, tachycardia, lightheadedness)

- occasional shortness of breath (if i exercise too much or i simply try to do too much - might be the deconditioning though).

what makes things a bit more complicated is that not too many people (medical professionals included) know too much about this condition, and even the research is "fuzzy". That makes me even more grateful for this site and for the people i hope to meet and connect with.

:-) Alex

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Alex,

Pretty much sounds like POTS to me. You're positive for it with your tilt. And all the other symptoms are connected to that DX.

I'm glad you found us. There's so much to learn and we are all researching to the best of our abilities to try to find solutions. This place makes you not feel alone - when others don't understand. It's a really big comfort to all of us. Keep in mind that most of us here, are here because we haven't found good enough solutions - for us. But, there have been many that have been here and no longer are --they found answers. So, those with the hardest cases are the ones that have been here the longest and still are . . .there are others (like you) who are new to it all and just trying to learn.

Whether you're deconditioned or not . . .it still appears you have POTS - regardless of the reason.

Issie

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I used to have terrible chest pain attacks. I always worried I was having a heart attack, since I have heart troubles, but after seeing my cardiologist about it I was informed that I wasn't having heart attacks and my heart is the same as always. It just so happens that the same visit concluded with my diagnosis of dysautonomia.

What I always did, before the pains stopped happening, is I'd go draw myself a hot bath. As soon as I hit the water, the pain would go away. I don't know why it helped, but I suppose it couldn't hurt for you to try.

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Issie,

thank you once again. As you said, this is all new to me and ... I am learning on a lot of levels, looking for answers, while trying to stay positive. Needles to say that i believe this forum and the people contributing here absolutely amazing.

Allene,

thank you for your answer. I've also had extensive cardio testing: blood work, ecg's x-rays, echocardiograms, holter 24h, loop monitor, stress test, you name it, I've had it, my cardiologist kept reassuring me that my heart is fine. I also know that at my age (I'm 37) it's very rare to get heart disease. Even more, there is no history of heart conditions in my family. Yet when my heart rate goes from 90 to 168 in a matter of minutes while I'm just lying in bed doing nothing, or when my bp spikes from 100/60 to 150-160/90-100, I tend to forget about all the test results. Then there is the chest pain that no one seems to be able to explain or to help me alleviate which only makes things worse.

I've been trying to use my electrical blankie at times for the pain, but it's hard to breath with that on my chest as I have to crank it up to max to feel a difference (i did get burns on my chest because of that and I remember one of the ER nurses looking quite suspiciously at my burn marks ;-) - little did she know).

I'll definitely try hot baths but I have to have someone standing by as with all the fluctuations in bp and hr I had lately, I'm afraid of my own shadow at times. Thank you for the tip.

Alex

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You may want to be careful with the hot baths because the heat can cause vasodilation, which can further lower BP or raise HR.

Some of us need to vasodilate - that's probably why the heat helps you. Think about what your meds do and see what works best for you. Some of us have too high bp's and need them lowered.

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my bp has always been on the low side, and I've been quite comfortable with it - I've only fainted a couple of times and that was years ago (except for the TTT).

I'll probably check with my dr to see what his opinion is about the hot baths.

thank you everyone for your input so far, you are an amazing group.

Alex

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