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Guest tearose

Prinzmetal?

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Guest tearose

I have been in a relapse of a new sort...of course, just when I thought I figured out the formula for managing.

I had a recurrent bladder infection that seems to be sending my body into the current funk.

I have a second level bladder prolapse..again, and I certainly am not getting adequate sleep. I'm up at least 3-4 times a night.

Add to this, with the recent 80 degree temperatures (3 weeks ago) outside, and the swing in temperature to my body as I went in to a/c and grabbed ice cold items...and some Raynaud's reaction on my toes and fingers...painful white and red flushing on hands with greyish blue popping on fingers.

Then...

I had a first ever crushing chest pain that brought me to my knees last Friday. It was very bad. It lasted probably 10 seconds and nothing relieved it. I couldn't just breathe through this! I have done follow up this week (ekg and echo,) and the good news it my heart did not suffer any damage. The cardiologist said possible prinzmetal angina.

So, the local cardiologist believes I am "out of balance" and my heart artery went into spasm and I need to get back into balance.

I will keep nitroglycerine handy and if it happens again for longer than a few minutes, I would call 911 and then lay down and use one tablet for a few seconds at a time until help arrived. Don't even want to think of having to do this but at least I have the plan if needed.

So I am now going to go into total healing mode. More almond tea, more rest with modified floor exercise, re look the electrolyte balance...fix the drooping bladder...

Anyone have a spasm like this? What brought it on and how are you managing?

Goodness gracious, when does the funkyness end?

tearose

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I am sorry that you are having such a rough time. I have had a couple of bad days myself this week and frustration with my doctor on top of that. I can only tell you to hang in there and send you my prayers and well wishes. You are not alone.

mary

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Wow, Tearose, that's terrible for you! ;)

I haven't ever heard of Prinzmetal angina. It sounds awful.

We're here for you! I hope you avoid a recurrence.

Amy

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I'm sorry about the chest pain- I'm so glad your heart isn't damaged from it, though.

I hope you're feeling better soon- see, here are HEAPS of feel-better vibes!!!!

What sort of "out-of-balance" did he mean? I mean, obviously your system appears to be under a lot of stress- I mean, I don't know anything about bladder prolapse, but it doesn't sound comfortable... I hope those exercises can help.

Take care!!! It's nearly the weekend!

PS Having no idea what Prinzmetal was, I thought it looked like somebody's screenname!!

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Tearose,

So sorry to hear you experienced such a scary episode. I hope the bladder and heart issues can be taken care of swiftly. Thinking of you.

Sheridan

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Guest tearose

Thank you for the kind words and support.

I too had never heard of Prinzmetal's angina. It was so sudden and very painful. Thank goodness it was also brief.

I think the "out of balance" quote was the cardiologist trying to see if I felt I was going to be able to get my body back to where I was before the cascade from the infection. ( We both want to believe this incident triggered my ANS to start misfiring) I manage my POTS / autonomic dysfunction and lymphedema, with compression, water, electrolytes, modified activity, rest...and I suppose if I sounded really worried or feel unable to get to a better place, he would need to consider ways to help me get there. I can only guess, that unless I have a clogged artery, I must be taxing every nerve fiber and every vein, muscle, every part of my body right now. I am slender and haven't had any cholesterol issues. I suppose I do not fit the profile for someone that would be suspect of having clogged arteries. My ANS is just tired and misfiring.

I can't figure this out but I hope time will pass and the incident will be history. Another reassuring newsbite to share, my Mayo cardiologist also reassured me today (by phone) that IF there is a next time, more agressive testing will be a must...so I am going to do a whole lot of being extra dedicated to finding that fragile "balance" asap!

thanks again family,

tearose

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Hi Tea- I read your post with interest for two reasons.

First- my mum has had a prolapsed bladder and had surgery twice. It's much better now

Second- I had EXACTLy what you describe with my chest- they told me also it could be Prinzmetal, I had GTN spray on me and ended up in hospital several times.

But these 2 things can be linked- my mum and I both have Ehlers Danlos.

When I last saw my EDS specialist, he said that many women (it does seem to be predominantly women) get misdiagnosed with prinzmetals when actually their pain is muscular- costochondritis.

He also spoke to my mum about her bladder prolapse as this is linked to EDS too.

Do you have EDS? I can't remember. But if you do, it might comfort you to know that could be at least partly responsible for the terrible chest pain. I don't get it now, but when I did it was so intense I could even throw up with it.

Hope you feel better soon, Tea. Had missed you round these parts :rolleyes:

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Guest tearose

Professor persephone! :rolleyes:

Hey there, I missed you too!

Anyway, so that is helpful to know that the second repair has helped your mum. How long ago was the second repair? I can't understand why my first only lasted 6 years.

You are the second person who suggested that EDS may be a factor I should look into. So I shall.

Is it possible that after all I've been through they missed a diagnosis?

Or is this a further development in life with dysautonomia?

Do you have raynaud's too? How long did the severe chest pain last?

I guess sometimes it is only over a period of passing time that the constellation of symptoms finally forms a pattern that can be seen.

take care,

tearose

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Hey Tea! My mum's first repair lasted less than two years. EDS stops them lasting for too long. I do indeed have Raynauds. I get the episodes when my BP goes nuts. Last episode was in July in Dundee when I had to be given morphine cos the pain was so bad; it was awful.

But when I was all stressed with Oxford being crap to me, it got really bad- also when I was anaemic and malnourished at Oxford it got bad. Make sure you're taking lots of iron- kale, leafy greens etc.

Do look into the EDS side of things. I hope it made you feel better to know about that. I felt hugely relieved when they told me my own pain was probably muscular and joint related.

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Hi Tearose

I have to say that after I looked up Prinzmetal, I was surprised you had this possible diagnosis. This appears to be a diagnosis generally given to people with clogged arteries, and 80% of patients with this are male I noticed in one item I read.

Hopefully you can get further assurance that you had something more benign occur than this--and something that is more likely related to POTS than to heart disease.

Take care,

Katherine

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Guest tearose

Hi Katherine,

I think the information on Prinzmetal has changed four fold in the past year...I just spent time today looking and learning.

for example: Variant angina pectoris is also called Prinzmetal's angina. It usually occurs spontaneously, and unlike typical angina, it nearly always occurs when a person is at rest. It doesn't follow physical exertion or emotional stress, either. Attacks can be very painful and usually occur between midnight and 8 a.m.

Variant angina is due to transient coronary artery spasm. About two-thirds of people with it have severe coronary atherosclerosis in at least one major vessel. The spasm usually occurs very close to the blockage.

Not all Prinzmetal has blockages. (If anyone wants to know more go to About.com or American Heart Association websites)

In a new item I read, this is one of the main spasms that can happen to people with Raynaud's too! Prinzmetal is now one of the most underreported "women heart related" dx.

Problem is that all EKG and Echo tests show normal...only gold standard test is in the Cath Lab! :P

With my svt, psvt, POTS, lymphedema...I dread needing to have to undergo the cath lab!

...I'm feeling so fragile right now and I truly need to get stronger because the only place I believe can manage so many issues at one time would be Mayo or maybe the Cleavland Clinic but I have no history there.

I guess I am in what they call the "watchful waiting period"....and I will add solemn meditation.

best regards,

tearose

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Guest tearose

Thank you for your compassion everyone...

and thank you for taking time to learn more too Katherine, it means a lot to me.

From what I read, they try to connect the dots rather than saying patients have separate syndromes going on so that is why they want to connect the vasospasms of Raynaud's to the vasoconstriction of Prinzmetal's.

When I stopped to think more...I do have the barroeceptor problems so maybe as more time passes, all the dots/puzzle pieces will fit together.

Sure is a long time in getting to the final picture.

I think for survival reasons I am now ready to forget about the final picture and get back to learning how to manage and move on.

...well, almost ready :P .

It was quite an episode...I need to avoid another!

warm regards,

tearose

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