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Has anyone been diagnosed with this? Mayo is calling my severe chest pains this. What I experience does match the description.

They gave me a CCB. I just started it, but so far, no relief. When they get bad, they are triggering SVTs.

What I am experiencing now is not general chest discomfort. This is not the "POTS" chest pains that at one point I had grown accustomed to.

This is no fun.

I was hoping to find someone that experienced this, and had some tips.

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Hi! I'm so sorry you're going through this. I would be very frightened and alone feeling during symptoms. Do you have a local cardiologist?

I've had a lot of different types of chest pain, both now with POTS and before, which was diagnosed as costochondritis, but neither my doctor or cardiologist has brought up coronary spasms. Could you describe the pain you're experiencing - how does it differ from POTS pain? How long does it last and where is it? Do you get short of breath?

I'm sorry the calcium channel blocker isn't working, but, I hope there's something else. Did they mention nitrates? That would be horrible with POTS but I think having a spasm like that needs to be treated.

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Hi gjensen,

I might give the ccb a bit to work. I remember the first time I used it for migraine I had to titrate up to a higher level which usually means there will be a build up. I also found the link below. I can't remember if you've ever mentioned if your on meds but it does list some meds that are sometimes used in POTS patients that can cause coronary vasospasms as well as listing some other reasons why a person might have them. Hope the ccb kick in.

http://emedicine.medscape.com/article/153943-overview#2

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  • 3 weeks later...

i have this diagnosis as well. I causes intense chest pain ( inverted t waves on EKG) and I have also had episodes where I felt like my heart and throat were being squeezed and a intense burning sensation along with it - my dx came from a tilt table at cleveland clinic when I was there for testing and acute EKG changes caused them to stop test and call a cardiac rapid response.... talk about embarrassing! in any case, i started on norvasc after that and it helps a bit but it does not prevent all episodes. I find the more stress I am under the more likely this is to happen. The cardiologist i see brow beat me until I quit taking midodrine - she insisted that the moddrine and norvasc where at odds. My understanding of midodrine is that is acts on peripheral vessels - ( I have considerable blood pooling) - in any case, even not taking midodrine I still get CP on and off - I have rx for nitro just in case... you should be as proactive as possible to avoid stress - careful with exercise - drink enough fluids etc...

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Hoop311, thank you for sharing that. This is a growing problem for me. I am on Diltiazam. I am seeing Norvasc more and more often. Diltiazam seams to help, but not enough. I do not think I can go to a higher dose.

I need to get some nitro. I keep getting some severe episodes. I want it for a rescue option. How much are you prescribed?

Is midodrine an alpha agonist? If so, I could see why. I have been wondering if calming the system down would help. Similar to what you mentioned concerning stress. I think we are dealing with the same receptors.

I have had some very bad episodes where I pushed exercise too far. Your comment causes me to think back to those spells. That "too far" seams to be a moving target.

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I have this issue as well I thought at first it might have been 'normal' angina but it turned out to be spasms, I have been on ccb's for well over 5 years for me, I found they helped reduce my pots like issues big time.They took a month or so to kick in, as I guess your body has to get used to the blood flowing more freely.

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Jadecat, how were you diagnosed? Have the CCBs eliminated the spasms, or do they help manage them? Which one are you on?

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gjenson

i agree the "too much" remains a mystery... i tend to do too much and pay the price...can't seem to help it... nitro is a potent vasodilator so it is good to have on hand - I also take 81 mg of aspirin daily which everyone agrees is a must.... the issues all in all are like moving targets and I keep my same medication routine so as not too further confuse my body! Norvasc of all meds made a huge difference in the amount of CP I was having - I recommend it for this problem in particular...

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Thank you Hoop.

I just finished with the cardiology consult @ Mayo. They want to increase the dose of Diltiazam and change it to the extended release form. They want to use this CCB to help control the SVTs as well as the Vasospasms. I hope it helps, I am having them two and three times per day. I do not enjoy them at all. When they get bad, they trigger the SVTs.

They do not want to do the actual test for this because of the risk involved.

The doctor acted like I was not a good candidate for the nitro (for breakthroughs). I disagree, but will go with the recommendation for now.

If the Diltiazam is not effective, I will ask to change to Norvasc. It was mentioned today. My position is that most of my SVT runs is a result of the spasms.

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Is this the underlying cause of your POTS or is there more to uncover yet? Hope you get some relief with your new meds. BTW, Which MAYO clinic did you see? What state?

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Thank You Corina. I hope so to. LOL.

Rachel, thank you for asking. No, it is not a cause. Unfortunately. It is a symptom. A symptom that is as difficult to get diagnosed as POTS, it seams. I do see a hematologist tomorrow.

I am at the Mayo Clinic in Jacksonville Florida. It is not far from me.

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My coronary spasms have been caused by mast cell activation disorder and my hyper A POTS. It is basically an allergic cardiac event. Kounis Syndrome is the correct name. Again, it is part of hyper A POTS with MCAD and EDS III, not standard POTS, in my case.

I now take zyrtec, zantac, atarax, remeron and have constant saline - this has stopped the coronary spasms. Unless I got cold, eat the wrong thing, exercise (cleaning a bathroom, for instance) and it comes back as part of POTS. I just had a six day ICU stay from coronary spasms/very high BP because I reacted to an antibiotic - now I have a list of antibiotics that react to mast cell for the future.

Nitro made me WAY WORSE as it just had me pooling constantly. I take it as a last resort for this condition, but I am instructed to NOT STAND UP for six hours afterwards (to avoid POTS symptoms). I have had two heart attacks from this, with no blockages at all.

Hope this helps somebody in this situation. I'm a patient at Mayo Rochester, Cleveland Clinic and Vandy.

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  • 1 month later...

Eligiamore

wondering how u got that specific of a dx? I have similar issues and everyone just seems perplexed... went to Cleveland clinic and had event there... ms tell me how the meds work am gaunt each other but don't have any better suggestions to treat the sx...

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  • 2 weeks later...

I got that specific diagnosis when I had a heart attack from Kounis Syndrome - mast cell activation disorder that can come with hyperadrenegic POTS. After the heart attack, I had a heart cath which showed no blockages but spasms were triggered by a drug used to test for prinzmetal angina.

As the prinzmetal angina was triggered by mast cell foods and standard MCAS triggers, as well as sulfites, I was diagnosed by Emory and Vanderbilt with Kounis Syndrome/prinzmetal angina or coronary spasms from allergic causes. Very high norepinephrine is also a factor in these coronary spasms events, they think, because I have an extremely high norepinephrine standing level.

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this is all so interesting - I have not been diagnosed with hyperandrenergic POTS but seems like some of it applies - i.e. high bp on standing only at times - mixed with hx of PSVT and the vasospasms -

i moved recently and started over with a new cardiologist who seems genuine and helpful and was happy to have all my records to review -

he suggested an event monitor for 30 days which I also did 5 years ago when i first got diagnosed. I have slowly titrated off toprol XL and I feel like crap - more than usual - he wants to see my underlying rhythm which i respect - also to see if the BB affected my BP whic it does not - it is as low as ever off he BB - it all frustrates me really...

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I do not think that I am hyper Pots in a classic sense, though I can be. I have SFN, and I do not know where that might play a part.

There are two things that leads me to believe norepinephrine can be a trigger for me. One is exertion. If I go too far, I can get an adrenaline surge, and spasms to follow. The other is that I reliably get them upon waking. A time when the cortisol levels are highest.

Just my own theories of course.

I am very confused about all of this. They are still not managed well, and I go through this every day. Occasionally I will have a good day. This morning was especially bad. Scary bad. I doped myself up (LOL), and am doing better now.

Hoop, I understand the frustration.

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Raisin. I have been checked a couple times and have been normal to low normal. I have never been checked "correctly", but I know enough to know that I am not classically "hyper". I do not doubt that if you checked me 10 times, that I might meet the criteria once or twice. I do have "episodes". They used to be more common, but have become less so.

Physical exertion can be a problem.

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