Pots Has Given Me A Dose Of Health Anxiety (Heart Disease In Younger Women)

[xRobin]

One of my worst POTS symptoms is chest pressure. It starts in the middle of my chest when I stand up and creeps up to my neck and down my arms, and worsens on exertion. I also get shortness of breath, poor appetite, and dizziness. These have been improving but I still get them.

From speaking to my doctor (and reading the forums) I know these are symptoms of POTS. I've been to see a cardiologist and my echo and ekg are normal.

So, today a study came out saying that younger women are more likely to die from heart attacks because they don't recognize the symptoms and delay treatment:

http://www.npr.org/blogs/health/2015/02/24/388787045/younger-women-hesitate-to-say-theyre-having-a-heart-attack

It really freaks me out because POTS gives me symptoms of a heart attack nearly every day, apparently! If I had a cardiovascular event, how would I know? My cardiologist says a lot of POTS patients go to emergency only to have normal test results. I asked him when I should seek emergency care, and he didn't know ¯\_(ツ)_/¯. Another doctor said, "if the pain is different" which is pretty vague.

I'm not normally prone to worrying about my health but thinking about this is really making me crazy!

I guess all I can do is take care of my general health and try not to think about it.

[bellgirl]

If you have no abnormal EKG or Echocardiogram, you eat healthy and have low cholesterol, you shouldn't worry about this...I have this all the time, too, and I'm as healthy as anyone with dysautonomia is, although I have a mitral valve prolapse, which is probably why I've always been thin, and so does my brother. I figure there isn't much that can be done about it, so I've decided that I will enjoy life the best I can, pray about everything, and leave the rest to God!! Now that I'm on treatment, see my meds below, I'm so much better!! Hydrating yourself is imperative!! That will help immensely. Are you on a beta blocker? That can sometimes make that feeling worse. Do you exercise? That is also very important for cardiac return, (having blood pushed back to your heart) !!

[bethanyh]

xRobin: I am not at all happy that you are feeling this way but I am so glad that someone has posted about this topic.
I feel like I am having a heart attack every single day and it is horrifying! On a daily basis I have severe chest pain, shortness of breath, palpitations (PVC's) with bigeminy, nausea, pain that travels into my back between my shoulder blades, and pain in my jaw...all signs of a heart attack. My BP is so low which means that I cannot tolerate beta-blockers well so I just have to deal with my symptoms. The concern/fear is very real and the physical sensations are a daily issue that I cannot escape from. It gets in my head that this time something is different, something is wrong and that exacerbates my anxiety as well, which of course turns into a vicious cycle. Several doctors have told me the same thing, "Go to the ER if it feels different". That is not helpful because every day is different!

I completely agree with bellgirl, I do A LOT of praying because there is nothing I can do about my situation beyond what I am already doing! I wish you the best of luck!

[Eagle3312]

Hi Cronin. I get these symptoms often. couple of days back I had chest pain in the left, back pain, palpitations, pain in the arm, dizziness etc. I had previously gone to ER a couple of times. This last time I was less anxious because I had a cardio work up done recently with no issues identified.

I am slowly getting used to living with these symptoms, though it's scary at times. Wish all the best.

[gjensen]

Have you guys had an EKG while in severe pain? Is there a pattern, time of day? If the pain occurs with exertion have you had an exercise stress test?

[angelloz]

I have asked my doctor this and like the rest of you , I was told, " if the pain feels different".

Yes it varies quite a bit..even in location. Middle of chest , left side , back spasms, nausea, clammy, my EKG in the ER have been slightly off at times. was told jt could be lead placement etc... My cardiologist looked it over several times and is not concerned. I have laid there many times..cell phone in hand thinking 911 or not.....I try deep breathing staying calm and prayer. Good luck to all!

[bethanyh]

I have had various workups completed, while in pain and without. The ER often has a hard time completing an EKG because of muscle tremors showing up on the EKG but they have never been overly concerned. I have been told by a few doctors that they do not believe the pain is coming from/due to a heart issue. I have a lot of palpitations and bigeminy (14% on a 24 hour Holtor) but even that does not seem to be problematic from the doctors' side of things. No treatment for the PVC's at this point, especially until my BP can come up to a level in which a beta-blocker would be a safe option.

[bellgirl]

I've had a heart scan and exercise EKG with contrast, and my heart rate was irregular, but no blockage. My Echocardiogram showed regurgitation of my Mitral Valve was a third of my blood from the ventricle without a Beta Blocker, and there was thickening with some tricuspid regurgitation, as well, so that was significant. I'm glad that I was able to tolerate Bystolic, because it improved my heart function, so hopefully, I won't have to have valve surgery down the road. I just try not to think about it. Last night I had shortness of breath for about a half hour. I have sleep apnea, too, but this was with my Cpap; it was significant air hunger. They liken it to COPD, which is probably what this felt like. I have a lot of trouble with this in the winter because of vasoconstriction of my blood vessels. I believe I am hyperadenergenic, ( yo yoing B/P), but was diagnosed with Pure Autonomic Failure. I never seem to be symptomatic except for the first time of testing, during my testing, even though for the scan, I held my beta blocker for 3 days; I'm so used to arrhythmias, that most of the time, I don't even feel them anymore; three days wasn't long enough to be off the medication, but it did detected irregularity. If I have a heart rate over 120 resting, I'm symptomatic, but exercising I could go over 200, and sometimes not notice it, which is ridiculous. I never go above 190 anymore, usually 160-180 exercising with the beta blocker. That is still high for someone my age. I'm 58. I was on blood pressure medication, but no beta blocker when I was first evaluated, so my blood pressure did not fluctuate as it would have otherwise. However with my tilt table testing my HR rose 43 beats in 10 minutes. If it's over 30 it is considered POTS. That was when I was first diagnosed, 3 and a half years ago.

[xRobin]

Thanks for all of the replies, I think those of you who pointed out to control what you can (risk factors, diet, etc.) are totally right and it's great advice! We just do the best we can.

Bellgirl, my cholesterol # is borderline at around 200, but my HDL is high, hdl:ldl ratio is very low and triglycerides are always low. I'm told these number are more important than total cholesterol and the cardiologist NP said my risk profile is "boring" and that a statin isn't necessary. I've reduced sugars in my diet and it seems to help with LDL but I need a few more tests to make sure.

GJensen, I've had a few EKGs during chest pain episodes and all have been normal except one I had at urgent care, which other doctors reviewed and later said was normal and that the urgent care people read it wrong (!) They told me I didn't need a stress test so I didn't get one. I know you've been diagnose with spasms in your coranary artery, have you had abnormal results in your cardiac work ups? I'm so sorry you have to deal with that.

bethanyh, I'm sorry you can't take a beta blocker. How low is your BP? I'm on bisoprolol and mine is usually 90something/50something lying down but they don't seem concerned. I get PVCs too and they hurt and are very scary and the BB has helped a lot with those. I also hate living alongside constant pain, doubt and worry! For myself, I think the catecholamines from POTS accentuates the anxiety. I try to do restorative yoga to calm myself.

[bethanyh]

xRobin, thank you, this sounds so ridiculously cliché but I wish this were easier for all of us!
My new cardiologist suggested a BB that would not have as much of a risk of lowering my BP, I think he said it was called Pindolol but I cannot remember the exact name. My BP is usually in the 90's/mid 50's when standing, lying down is probably mid to high 80's/50's. He also suggested starting me on Florinef, right now I am only taking Midodrine 2.5mg 3x daily so maybe adding the Florinef will raise my BP enough. I will just have to try it out and go from there!

[MomtoGiuliana]

I take Pindolol. I have not seen it mentioned here a lot. I believe I remember my dr explaining it contains a beta agonist which protects against severe lowering of bp or heart rate.

[bethanyh]

This is good to know. I just hope if I start on the Pindolol I can tolerate it!

[xRobin]

Best of luck with the Pindolol! I hope you can handle it too!

[SarahA33]

I've been told the fact that I can feel PVCs and PACs is odd, and then when the results of my 30 day holter came back and I had pushed the button during them my EP had said "Its called increased cardiac awareness if you can feel those." I also felt some chest pressure/squeezing. I wonder if we have all a bit of "increased cardiac awareness.."

I get some tightness when I'm trying to relax, it's around my heart, but I haven't gone through what you and some other members describe. So sorry everyone! It sounds so uncomfortable.

[andybonse]

I get angina, yep from lack of blood to my heart, im 23 and I've had Cardiac MRI & MRA, Echocardiogram, ECG, 24 hours ECG, 24 hour bp monitor, Stress ECG, all perfectly normal.

Here's the thing, I get it at HR 130-140 standing up exercise or walking particularly when I get hot.

When I lay down, I can exercise, get my HR to 190, no angina.

It's all POTS with me, my hearts fine just POTS stopping the correct distribution of blood flow as per usual, *****.

[jackiemxoxo]

I worry about the long term effects of my heart working so hard. I think most people with dysautonomia do though. Like you said though, I think the best thing you can do is take care of your health and hopefully more treatments will be made in the future.

[JenniferInOhio]

This happens to me as well. I can't tell you how many times I've been to the ER for chest pain, dizziness, pain in my left arm, pain in my jaw. I always think I'm having a heart attack. I mean, those are the symptoms they tell you not to ignore. I do tend to ignore them now though. I still worry that I'm having a heart attack, but I don't go to the ER anymore. I've had countless holter monitors - 24 hour ones, 48 hour ones and one for 3 weeks. I've had a cardiac MRI, stress tests, stress echos, ekgs. All normal. I can't give you any answers, but I'm right there with you!

[gjensen]

Is there any rhyme or reason to the chest pain that you guys get?

I get what I call POTS chest pain all of the time, and at any time. My severe episodes come at night, especially when I relax to sleep. Also when I wake up. Especially if I am woke up early or abruptly.

Occasionally these more severe spells occur with dizziness, shortness of breath, sweating etc.

I also get the arm and jaw pain, and occasionally in the back. All of my pain is centered directly over the heart. What I mean by centered, is that is where it is the most severe. On occasion it is sub sternal.

Also if I do too much. Then it is not in the doing, but after when I become supine.

[bethanyh]

I have my pain all day, every day with no rhyme or reason. It starts from the moment I wake up in the morning until I go to sleep at night. I often wake in the night with the pain. It is mostly in the center of my chest and left sided but it NEVER goes away. I have talked to every one of my doctors about it but they don't have any explanation for the pain.
I have been seeing a pain management doctor for about three months now and no treatments he has suggested have worked, or I have not been able to tolerate the meds. he has suggested. I am planning to ask him about pain patches during my next appointment, I have heard they can be a good option.
At times it is worse when I try to do too much or sometimes even move my body a certain way. My pain is coupled with shortness of breath on a daily basis and typically left arm tingling/numbness, jaw pain, back pain is included.

[gjensen]

I cannot experience what you do experience. I am guessing by the way it sounds is it is what I call my POTS chest pain. I do think that for me, the root cause is the same though. I wish there was a better way to quantify it, and understand it certainly. I struggle with describing the differences.

I wish that I had an answer or suggestion that would be helpful. What helped me the most, I am no longer able to take. Nitro helped the severe and acute episodes, but does nothing to the day to day, all day pain. I am having two things happening, or the progression of a single thing, but I experience a change. A different pain and sensation as I relax to sleep, or upon waking up. Mostly, once I am asleep, I am ok.

In my worst spells, being supine is the worst, and I get relief after sitting up for a spell. Then it returns upon being supine again.

I have this all of the time, but I get flares that are especially bad.

Crazy stuff.