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Heart Attacks From Spasms/dysautonomic/pots-Beware!


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Many of you have seen my previous post where I was desperate to find a POTS cardiologist in Atlanta, a city of 5.7 million people. Thank you to all of those who attempted to help me.

I have gone through three cardiologists in six months. Cardiologist one said he treated POTS. He prescribed Valturna, an off the wall new med that reduces aldosterone. As I have very little aldosterone in my body and severe hypovolemia (low blood volume), I was extremely ill from his meds, including the runs. Four phone requests for an appointment failed. Cardio one (considered one of the top cardiologists in Atlanta) left a message: either I took the meds or found another cardiologist. My primary said to leave.

Cardiologist two led to a hypertensive crisis with blood pressure over 230/120 with stroke-like headaches. A hospital stay of one day ran up a $11,270 bill, did nothing and released me the next day. The following morning I once again had bp over 220.

Cardio two advised me that as I had passed a treatmill test, so my high bp was no biggie; he then GUARANTEED me that I would not have a heart attack. He said my heart problems were totally normal for an elderly woman. I asked him how many middle aged patients he claimed are "elderly". Then he fired me as a patient. Too bad I had two heart attacks six weeks later...

Cardiologist three was suggested by my wonderful buddies here. He was, at least on paper, the best cardiologist in a group boasting 68 cardiologists at the highest rated heart hospital, Piedmont Hospital.

Already on beta blockers and .5 mg of clonidine (patch and oral) a day, he added methydopa. I immediately began experiencing spontaneous jerking/dystonia symptoms and stopped it. Then he put me on aldactone, which again lowers aldosterone and vasopressin (salt retention). Again four phone calls complaining that treatment that reduces my limited blood volume and salt retention was completely insane, as I had already almost died of hyponatremia in 2003, fell on deaf ears.

In three days I could not even sit up. I was too weak to hold a glass to water. My bp was still outrageously high. I called again, begging for an appointment, but was just told to DOUBLE THE ALDACTONE DOSE. Chest pain, sweating and general adrenaline surge symptoms escalated. My primary called himself to demand I be seen. No dice.

The following day, Friday, I made EIGHT phone calls to my primary and Cardio three, as I had very high blood pressure and SEVERE pain in my right arm. NOBODY including the primary would work me in, let me see another physician or even make a suggestion to help me.

The following Saturday morning (two weeks ago) I had a heart attack. The ER said I had also had a silent heart attack on Friday while making these calls.

A heart cath revealed that I had only minimal plaque, no blockages and no blood clots. I was diagnosed with MI due to coronary artery spasms closing a main artery; a condition called Prinzmetal Angina. This condition, usually seen in women (I'm a girl) is caused by a high sympathetic state, overdoses of beta blockers (thank you, Cardio three) and AUTONOMIC DYSFUNCTION = POTS. My left ventricular diastolic function is now "very severely damaged." Can't breathe.

Cardio three's partner never wrote up any of my problems in the hospital, such as syncopes when standing and my constant vomiting up all food or water for three days (I have lost 11 pounds in 10 days) or the bp swings. So Blue Cross Blue Shield notified me that it was "medically unnecessary" for me to be hospitalized all three days and they were NOT going to pay for one day - $9,000. Wonderful.

I have had three more horrible angina attacks since the MIs. Trips to the ER end up with stabilization and release, just to return with the same issues the next day. Cardio three then fired me as a patient, stating that he had no ideas of what to do.

Cardio three sent me to his mentor, Cardio four, head of cardio at another Hotlanta hospital. He then added a SECOND beta blocker, ignoring my articles stating that beta blockers are contraindicated for coronary spasms and added Norvasc. He did NOT offer me a follow-up appointment. I get it.

I threw the aldactone in the trash. The coronary spasms immediately quit! I had two syncopes yesterday. A nice guy covering for my not-so-nice primary spent the day today (Sat.) giving me IVs and trying get my heart rate down.

My neuro and primary contacted Vanderbilt, as y'all suggested. Vandy said that two MIs would not lead to me being worked in. The nurse told me that people in rented RVs, camping out in the Vandy parking lot for weeks, begging at their doorsteps each day for help, are turned away. She said she would see me in March, 2011. Sure.

I most definitely can't fly anywhere. I have already been kissed off by Mayo Jacksonville in '04. Last trip to Cleveland Clinic, for NINE WEEKS and a zillion dollars, was useless. Primary says that somebody like Dr. Grubbs, not at a major medical center, has "no credibility with my local cardios" and is a waste of his and my time.

MAJOR THANK YOU to our chat bud, firewalker, for going beyond the call of duty to try to help me. Perhaps Shakespeare had it wrong. First, kill the physicians, not the lawyers. HELP!!! Any ideas?

Thanks, everybody. Elegiamore

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Ellie, I'm glad you are back! I recently read a statistic that purported that doctors kill more people than handguns, lightning and sharks combined! I'm probably safer sitting on my roof with a rattlesnake in the middle of a lightning storm! You, my dear, are a conundrum. Honestly, you aren't typical in so many ways. :rolleyes: I have wondered what the long term prognosis is for many of us life-long POTSies. I don't think anyone really knows. I just hope that the wonders of medical science haven't messed you up too bad "practicing" on you. :(

Wishing you Godspeed in healing and finding a better doctor!

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I'm so sorry.

I don't know what else to say.

I had read that the high levels of sympathetic hormones in the blood can cause serious cardiac complications including heart attack. It is concerning.

It seems like maybe sometimes we are just better off accepting where we are and passing on the meds.

It's true none of us know what will happen but at least if something does it will be natural not something induced by the wrong medication.

Or a medication for us that just has a really bad effect on our body.

Hang in there.

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I'm sooooooo very sorry for what you've been through. All I could do is shake my head and say OMG that poor girl. You are not too far from B'ham, AL and there is a doctor there that my niece in law goes to, she has POTS too. We're not related -- what kind of chance is it that there would be two potsies in a family. I will try to find out who she sees. She seems to like him pretty well. You might look up the doctors listed on the site for B'ham. It's about a 2 hr. drive for you. If nothing else maybe an ambulance ride, maybe someone has a van you could lie down in. I'm hoping for you to get some help. I thought I was gun-shy of the doctors. I had no idea that our POTS could give us a heart attack. We're supposed to have good strong hearts. I'll e-mail her right now.

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I have nothing to say or type - but I will give you a big hug and prayers for a string of amazing blessings and good luck in the days ahead......You are incredibly strong ... I mean simply utterly amazing and you wanted no part of it ... nonetheless that's you..... My sincerest hope for many many better days ahead...forever! NEVER ever give up!

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what a terrible story! I am sadly another person with POTS and recurrent atypical chest pain, that I finally managed to get a cardiologist to recognize my pain could be vasospasms. I am currently on an odd combo of drugs-- florinef, midodrine, and norvasc. I had a completely normal angiogram. I can't tell you how many er trips I had for chest pain. Fortunately, none in 9 mos. My current cardio believes me, and is treating me. My rule of thumb is that everything that helps POTS also helps prevent my vasospasms. I'm lucky in that I haven't yet caused any heart damage. The current plan is that I have chest pain that lasts longer that previous episodes and doesn't let up, I have to go to the ER again, ask for bloodwork and an ekg to make sure all is well.

Most pots folks may be safe from heart damage, but I know that there are a number of us on here also diagnosed with coronary vasospasms and chest pain. These are not benign. IT then becomes a very tricky balancing act of evening out vasodilation and vasoconstriction. I wish I could tell you names of doctors, but the ones I've seen are far from you and not necessarily big names. It helps that I was listened to. I had one of my cardios write a letter that I can bring to the ER when I have an episode, detailing what they are to do. We are not the typical heart patients. And not as badly as you, I have also had bad treatment from arrogant/ignorant health care providers. I hope some of the other vasospastic folks will post their experiences and their treatment strategies. You definitely need a smart, caring doctor, willing to think outside the box. If they can't give you effective treatment, they should work diligently to help you find someone who can. It seems that even if we are not text-book cardiac patients, chest pain should always be taken seriously, and assumed to be potentially dangerous until shown to be benign. Women without heart disease can indeed have heart attacks, if arteries spasm and shut off blood flow.

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I am so sorry to read this. I hope you can find a good doctor soon. I am amazed by what you have gone through and concerned for your health.

The thing that is very confusing is that specialists tell us that chest pain is a symptom of POTS. I think many of us get this symptom. I do. It worries me, I mention it to my specialist, he says it is normal and benign. As I grow older, it concerns me more. We are such a minority in the general population that it is hard to get the appropriate care we need.

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I know this is something that we've talked about some before. I've heard both that chest pain is part of dysautonomia and not dangerous, and also that it is not typical and should be worked up as potentially dangerous. My personal sense is that my dysautonomia triggers it, and that it, in my case, may not be benign. I can often make it subside by doing ans-friendly maneuvers, like keeping hydrated, compression, lying down/raising my feet. But I've had unrelenting chest pressure, radiating into my left arm, shortness of breath, nausea--i.e. classic angina syhmptoms. I've had a very extensive workup-- by both ans-savy docs, and standard cardiology. And many cardiologists send me away once they learn my arteries are normal. My abnormal findings are the tilt table and vascular pooling. I'm very lucky that my most recent docs don't brush it off. I have been brushed off numerous times by others, including well-respected ans docs, with the mantra that dysautonomia isn't threatening to the heart. But with my symptoms, I never felt comfortable ignoring my chest pain. And the fact that I improved both with ans treatment AND norvasc supports this. Some of us may have vasospasm in there. A cardiologist I saw recently said that his worst cases of vasospastic angina have been in POTS patients, and that it is VERY hard to treat. We are not like textbook prinzmetal patients who respond to vasodilation alone, and we are not like textbook heart attach victims, as we often have normal arteries and need extra salt/fluids. This is a really important topic. I sometimes cynically fear that some of the brush off comes from the fact that many of us are premenopausal women, all too quick to get the hysterical female diagnosis.

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I am so sorry that inadequate medical care has let you get to this point! I really wonder about the quality of care patients receive now as compared to 10 years ago. Everybody I go to runs a test, says it is normal or not too abnormal, and then just stops the digging! No doctors want to think!!!

I know we have talked about this before, but your catecholamines are WAY ELEVATED compared to the average POTS patient. I can't remember where you have been checked before for a pheo; I know you said CC and Mayo maybe? But I wonder if you've been to the NIH? Maybe they could delve into it more, with the most up-to-date scans? Maybe whatever is spewing out so much adrenaline will now show up now?

I think of pheo also, as you have no help with all the blockers, and I know betas are CONTRAINDICATED with pheos, raising the b/p even further.

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Ellie,

How tragic.

A few thoughts: WHY beta blockers? I thought they were contraindicated for Prinzmetal angina. I almost died after using beta blockers, which were contraindicated with MCAD. They exacerbated my symptoms, brought me to anaphylaxis, which didn't didn't stabilize with my epi-pen (once again, because of the beta blockers :angry: ) Have you ever tried a calcium channel blocker? That may help treat BOTH the autonomic dysfunction and angina. Nitroglycerine has also been helpful with arterial spasms that I've had- have you tried that yet?

I am sorry that you have been so let down by those entrusted with your care. Continue advocating for yourself, studying your condition(S), searching for others like yourself & sharing treatment plans (Mkoven is one.) I'd get in line at Vandy. March 2011 will come whether you have that appt. or not. Make that your back-up.

You are in my thoughts and prayers-

Julie

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In the first place,

a. when you wake up in the morning, and before you get out of bed, is your pressure okay? Or at least lower than it is when you get up? (I'm hoping that that is the case).

b. Also, when you drink 4-8 ounces of water does your pressure go up or down?

c. Is your breathing affected by the beta blocker? (Do you know?)

Because your doctors are not helping you, I think that secondly (unfortunately), maybe you need to develop a "personal theory" of what you probably will respond best to. Then you need to ask for it, (I guess aggressively and by showing a doctor an article which makes you think a particular medication will help) -- and then ask to try it at low doses. If you get a med, maybe start it when your pressure is the lowest you can get it (if you try a low dose of something at a systolic pressure of 140 or 160, that's safer than at a crisis level which is too high [or too low]).

To get started on this, you need to do research. Here are two articles which may be a good starting point:

http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html

http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/PreventionTreatmentofHighBloodPressure/Types-of-Blood-Pressure-Medications_UCM_303247_Article.jsp

You should try to get much more detail on any medication you are thinking about. As an example, I am providing links to articles on Clonidine which you should probably have at your disposal anyway because that is what you mostly use.

What is in the articles is the amount of detail (on any medication you discuss) that you want to have at your fingertips ... When you start a discussion with a doctor however, you might want to start with the simpler points. :lol: I've selected some of the details I'd start with in a discussion of Clonidine ...

Clonidine can cause high pressures either intitially or in some people generally.

http://bja.oxfordjournals.org/cgi/reprint/aei086v1.pdf (p. 4)

http://books.google.com/books?id=1jz_3ttYQrIC&pg=PA218&lpg=PA218&dq=loss+of+sympathetic+nerve+terminals+clonidine&source=bl&ots=Kmw00fqxIB&sig=jRsVegTcix5iVwmaiy1WPbyvggk&hl=en&ei=g4BxTOCBE4j6swPry7WLDQ&sa=X&oi=book_result&ct=result&resnum=2&ved=0CBgQ6AEwAQ#v=onepage&q=loss%20of%20sympathetic%20nerve%20terminals%20clonidine&f=false (see bottom of p. 218)

I am assuming you are certain that at the dose you are at, it lowers yours. (If it lowers your pressure or has some effect you're not totally sure of, you'll have rebound high pressures if you come off of it so if you're thinking at all about coming off of it, you have to really research it and be careful).

http://journals.lww.com/anesthesiology/Citation/1991/03000/Alpha_2_Adrenoceptor_Agonists__Defining_the_Role.29.aspx (p. 597)

-----

As far as heart attacks, it appears that you're only really allowed to have one cause (autonomic problems). ;) I guess the easiest (and maybe quite erroneous) explanation for now is that lack of control of your high pressures (in the context of an autonomic problem) is the primary cause of the heart attacks and spasms (i.e., the other contributing factors may not resulted in heart attacks and spasms without an autonomic problem).

At any rate, the above may provide a decent starting place for you to a.) think about how to research and b.) do research -- in the absence of a "professional" who cares enough to do the research for you (his job? ;) ).

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I'm sooooooo very sorry for what you've been through. All I could do is shake my head and say OMG that poor girl. You are not too far from B'ham, AL and there is a doctor there that my niece in law goes to, she has POTS too. We're not related -- what kind of chance is it that there would be two potsies in a family. I will try to find out who she sees. She seems to like him pretty well. You might look up the doctors listed on the site for B'ham. It's about a 2 hr. drive for you. If nothing else maybe an ambulance ride, maybe someone has a van you could lie down in. I'm hoping for you to get some help. I thought I was gun-shy of the doctors. I had no idea that our POTS could give us a heart attack. We're supposed to have good strong hearts. I'll e-mail her right now.

Well, I heard from my niece and she said her doc. isn't a specialist and has directions from mayo as to how to treat her. She didn't feel that her doc would be of any help to you and didn't give me her name. Sorry ---- I tried.

The other thought is the doctor down in Pensacola, FL. That would be the next closest or Mayo in Rochchester, MN or Jacksonville, FL.

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SO sad to hear about the treatment you received. I've also been told that chest pain is just a normal symptom of my POTS, and is not to be a concern. However, I took mestinon for a few weeks last year and started having episodes of dramatically increased chest pain, BP was 180's/110's (lying and standing), so I went to the ER. I was admitted with troponin of 0.15 (normal is zero) and it went up to 0.35 a few hours later and was only brought down by nitro. Now I keep my nitro tablets on hand, but I also take carvedilol which helps so much. I have mildly hyperadrenergic POTS (norepi 259 supine, 1089 standing).

I'm so glad you have a primary doc who is advocating for you. Keep trying to get answers. My cardio isn't a POTS doc, but believes I have a real problem and is willing to try meds at my suggestion. I'm sending prayers that you can find someone willing to try to keep helping, who's flexible, and willing to admit what they don't know but will keep trying.

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Ellie

I'm so sorry to hear of this terrible experience. As patients, we aren't trained to deal with this kind of disbelief or arrogance from the people who are paid to deliver us care; we're certainly not trained to deal with a total disregard for our wellbeing. I agree that we have to advocate for ourselves, and to follow our instincts with new treatments, but this can be difficult when we're at our sickest and most vulnerable, and we're dealing with people in positions of authority.

I really hope that you find good medical care and that, in the meantime, you're being well cared for by family or friends.

With best wishes

Dianne

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I saw my endo for a check-up and talked about this w/ him. Told him I have brought it up to my POTS specialist and he has just said this (chest pain) is part of POTS.

My endo felt I need a stress test and is going to write to my specialist. He said if it is spasms, they can still be considered benign--however they are not benign if you have other risk factors, eg blockages. He said spasms are actually not that uncommon in the general population.

I get the pain rarely, and either on exertion (eg walking upstairs--like several flights, quickly) or emotional agitation. It is short-lived, but I am noticing it more as I get older. It definitely seems cardiac-related (not heartburn).

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I am so sorry to hear about everything you are going through. My heart and prayers go out to you. You could try Dr Gertler in Birmingham. He isn't an expert, but he got advice on helping to treat me. He is at UAB (205) 934-6600. He is an internist and cardiologist. Maybe he can help. Good luck.

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Guys,

THANK YOU SO MUCH for the support, prayers and ideas. Honestly, I feel greatly uplifted and empowered to hear your words and encouragement. BIG HUG. To EVERYBODY!!!

mkoven: you are always so sharp! I have been given three MIBG tests, costing me $6000. Still, my now retired cardio just could not accept that I didn't have a pheo and marched me to the (BLANK) Clinic to consult with head pheo honcho, who again said I didn't have one. However, there is now a blood test (I found it online and got my neuro to write the guy) who says he can give a 97% accurate answer with it. FYI, everybody, if you need the info.

Sue1234: Boy, are you right about the lowered quality of care in the last 10 years. Sue, I had a hypertensive crisis in 1990 (first one) and even though I was very young, I wasn't ignored; I was hospitalized for two days. In 2000, I was hospitalized for one day. In 2010, I was sent home, no treatment, by Cardio one with BP of 190/110 with no additional treatment. Cardio two sent me home with bp of 221/105 with no treatment. Maybe it would help if they read the Amer Heart Assn and Canadian Heart Assn guidelines, huh?

Mack's Mom: You have really been supportive and helpful, so THANKS so much. Yes, they put me on 5 mg of Norvasc first. Then the new cardio four pointed out that the standard is 10 mg. For the next attack (which happened early that night/morning), he had me take an Inderal and nitro. It worked fairly well.

But the next day I began to black out at a clinic. Later at home, I simply walked up the stairs and syncoped cold at the top of the stairs (luckily I went down forward instead of backwards down them!). Ended up in a Saturday mess but got an IV. Yet Sunday I was even worse. Called him today - and he actually spoke to ME HIMSELF(!). I told him that the 5 mg seems to trigger the syncopes, and he blew up at me. Wondering what to do...think he is wrong.

FOLKS - I feel more sane after reading your posts; I am not expecting miracles, but I am expecting at least mediocre care. I'm not getting it.

Elegiamore

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Hi again. Let me again say thanks and "good ideas", but I can't respond further to y'all for some time. Thanks for PMs-those worried that I haven't posted, this is for you!

My primary care said restrict to 5 mg of norvasc, as he wants me to be able to stand up. Ignored the ensuing hypertensive crisis Wed. night event, but today it was just horrible: WITH regular meds, two emergency Inderals and extra clonidine I was still at 205/114, shakes, etc. by 10:00 a.m. (how can this be?). I called.

Cardio four called to emphasize that unless I took norvasc 10 mg TWICE a day now that I would continue to have heart attacks (hmm). And when needed, THREE norvasc a day (OMG). God know what the primary will say. He admitted that I would syncope upon standing, but that for the foreseeable future, I am to have a constant helper (right) and only get up for the bathroom, etc. I'm covered with bruises and a very large hematoma from falling, so maybe that's good.

If I am not compliant, he is booting me - where have I heard that before? So this may be my last sitting up typing for awhile. Uncertain as to what my poor hubby will do, or how I will ever get a bath or shower (lol) or ever wash my hair.

THANKS again and during sitting moments, I will PM those with questions/comments. Maybe hubby will check my mail. HUGS TO ALL. Elegiamore

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We will be thinking of you and hoping for the very best. You can tell us of your journey when you feel better. Concentrate on that right now. HANG IN THERE, DARLIN --- Hoping for brighter days for ya!!!!

Issie

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All I know, is if it is a pheo, the standard treatment is with an alpha blocker FIRST, as anything else will paradoxically raise blood pressure. It has something to do with the lowered blood volume in pheos.

You really aren't getting the kind of care/investigation you need. I can't imagine doctors not doing everything in their power, including hospitalization, to get your b/p down!!

Go to the forums at the pheo place we talked about and see what if Norvasc(a calcium channel blocker) is commonly used for a pheo or not. Ask them what you should do--they have bigtime experience with super high b/p, what meds work the best because of elevated cats, and who you might see in your area. Pheo or not, you need to be treated like you have one.

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