feeling far worse after heart attack-need any advice!

Hello!

I am writing this on behalf of my Mom, which I hope is okay. She has given me total permission to do so as she is not too computer-comfortable.

She is a 59 year old woman, who had a heart attack on March 16 of this year. She had been a longtime smoker (has since quit), but otherwise she had a low BP, was in pretty good shape (not overweight - walking miles a day), slightly high cholesterol. She has hypothyroidism, but otherwise pretty healthy.

She had one main artery 70-80% blocked, so they put in a drug eluting stent. Within the next 24 hours, unfortunately, they did not monitor her closely to see if all was going smoothly and she developed a pericardial effusion that resulted in a full tamponade - an artery must've gotten cut a bit when they did the original angioplasty/stent placement, and she nearly bled out to death, and the only way they caught it was because she went into a full on seizure. It was truly absolutely horrible, but they caught it in time, and put in a heart cath to drain the blood. After several days in the hospital she was sent home.

Now here's where we'd love any and all advice anyone can share: despite a clean SECOND angiogram, in which everything looked great - taken a month after, and repeat assurances by the doctors that she is on the road to recovery, she feels arguably worse and worse.

She has extreme dizziness, queasiness, stomach upset, and pain that comes back every day in her upper back/shoulder blade area. She says she feels like she has a bad flu every single day. The only relief she ever gets is when she leans directly back on her upper back/shoulder area, the pain eases (though does not go away entirely), and the dizziness lets up some.

Otherwise, her entire quality of life is compromised and she is struggling every day, She has a ton of symptoms, honestly, but I think the pain and the dizziness are the ones truly affecting her ability to actually begin the recovery process. The only time its not so bad is at night she is asleep.

She has seen multiple cardiac docs, a pulmonary doc, a brain doc, her regular primary care provider and no one knows what to do....

Please please, if anyone has any help/advice/similar stories - we'd love to hear anything and everything.

I just want to see my Mom doing better so very much...breaks my heart to see her hurting every single day. She is truly a strong woman and would not be talking about her pain unless it was substantial.

Thanks to everyone in advance!

Sincerely,
Carrie

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22 replies. Join the discussion

Carrie:
Ask your mother's doctor if there is any possibility she may be experiencing some spasming in the arteries of her heart. I say this because, considering the trauma the arteries appear to have gone through, it is something that may be rearing up. Coronary artery spasms is a condition in and of itself, also known as Prinzmetal's angina and vasospasms. There is always a possibility that she may have had these spasms before and not even been aware of them, or her arteries may be spasming now in response to what they have been through.

These spasms can only be diagnosed 100% if they are caught in action during a heart cath and not everyone has arteries that are gracious enough to cooperate.

Everything your mother went through stressed her physically and mentally. It could be that muscles were pulled and stretched during her seizure to a severe extent. She may still have residual soreness from all of that. I know the frustration that your mother is experiencing. She thinks she should be fixed but it can take months to recover fully from a heart attack, much less one as traumatic as your mother experienced. Has anyone mentioned cardiac rehab for her? If not, you might want to ask her doctors about it. She can get active again slowly in a medically supervised environment. That may not seem possible at this point, but an evaluation for cardiac rehab may even help identify some of the things her doctors are missing.

Your mother is lucky to have her in your corner. I wish you both all the best -

Dianna

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Hi Carrie! Another thing to consider is taking a look at the side-effects listed on your mom's drugs list, every single one of her symptoms will appear on at least one of her meds, some on more then one. The main problem for me was the one-size-fits-all prescribing, we're all so very different, some of us tolerate some of the drugs very well, some of us don't. It took me well over a year to get my balance right by changing some stopping some and tweaking others, in the first months I felt dreadful too. I hope it will be a simple process of elimination for your mom too and that she'll turn the corner very soon.
You'll need help from an open minded doctor willing to help her make adjustments until she gets the balance right.
I was 54 but honestly during the first few months after I felt 90, a very poorly 90, with terrible aches and pains, trouble walking and wanting to sleep all the time, I'm back to myself now, is was a long haul but well worth it.
Hugs,
Lidia xx

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I'm not a doc but it sounds to me like she may be having multiple symptoms from a couple of different causes. How is her blood pressure? If it's too low from the new meds, that could cause the dizziness. I have a very sensitive system. When I have a stent placed I can feel it for a few months & it feels gross (kind of like swallowing a pretzel & having it stuck in your throat with no water in sight, but lower). It also causes my arteries to spasm in response (more frequently than my typical Prinzmetal's) so I get chest pain. If the doc has already ruled out a blockage (1st on the list), then ask about some meds for vasospasms. Ranexa works extremely well for me but some of the other ladies don't care for it. I also take a darvocet at night so it eases the discomfort & helps me get some sleep. Decent sleep eases the spasms. Hope everything eases soon.

Amy

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PS- tell mom awesome job on quitting smoking!!!!!

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the seizure may have left her dizzy and unable to function as usual. Wonder if she may also need physical theraphy. Just a thought. been there done that, but not from my heart. Hope her well soon

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Dear CareALot,

Your mother has been through a serious trauma. I don't doubt that she is now suffering from a bout of Post Traumatic Stress Disorder. When the shock sets in and we realize what has happened to us the anxiety and fear can be overwhelming, leading to further symptoms. (Although she should definitely be checked out by her cardio.) Some antidperessants and Xanax might help. If she's not taking them all ready, she may have to ASK her doctor for them. Oodles of women on this board will tell you how helpful they can be.

Healing and recovery can take a long time--at least a year, or more. She may never totally recover to her pre-heart attack physical condition, but she will adjust [to a"new normal"] over time and, perhaps, become healthier in other ways. We can still be half dead when released from the hospital, and the long road to recovery truly begins at home. My suggestion is that she (or someone to assist her) sets up her bedroom, or a lazy boy in the living room, with everything around her that she needs within easy reach, i.e. , her meds, TV remote, books, music, phone, etc. Make it as convenient and comfortable as possible and prepare it for the long haul. She needs a great deal of rest coupled with a modicum of exercise and to take her medications religiously. It took me a while just to accept what had happened to me, "allowing" myself to be sick, and the time and space necessary to get well. My own daughter pulled a little psychological warfare herself challenging me to let my hair grow out as long as I could get it. Her psychology was that the longer it grew, the longer I lived. I took up the challenge and it worked. It grew half way down my back, I cut it all off and started again (I was turning neopolitan), and it's now down to my shoulders again. I was not expected to live through the night, much less a year, and it's now almost 10 years down the pike. I went to the doctor just yesterday and I'm as healthy as an ox.

So, please let her know that it IS possible to pull through this and come out of it better than ever. Heart disease is an amazing teacher about self-love, getting to know oneself, re-evaluating what and who is truly important. But it's a slow process--this is not just a bad case of the flu. This would be a good time for her to take up a hobby--something she has a passion for but has never had time to do-like learning to play a musical instrument. Or to read all those books she always said she wanted to read.

And ALOT of understanding from her kids. That doesn't mean you have to move back home, but you would be amazed at how uplifting it is just to have someone ASK what they might do to help us, or occasionally taking her out to a movie, treating her to dinner, or just in small ways letting her know you love her. If you read this board you will see that one of the most challenging aspects of heart disease for many women is feeling as though no one cares.

My own daughter has been a God send. She does not hover over me and she is far from Clara Barton. She has her own life to live, but she has certainly let me know she loves me in her own way and given me a reason and purpose to live. So don't underestimate the value of a daughter's love in the healing process. You sound like a keeper :-)

May the Blessings Be!

Sherrie

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Hello Carrie . . . . welcome to the most wonderful site you will ever find!
Your Mother is still so very early in her recovery . . . . it will get better. I concur that, at least some of her symptoms, are caused by the side effects of heart medications. Also, my heart was rebelious of my stent from day one . . . and it took my body sometime to get used to it (my heart still doesn't like the stent, but it tolerates it now). Does your Mother have sublingual nitro tabs? If so, encourage her to use them when she gets the pains. She easily could be having some spasms from her procedure(s), and the nitro would help with that.
Lastly, I was also a long-time smoker (smoked for about 36 years) but quit almost 3 years ago. Anyway, it does take your body awhile to adjust to not having all of those "toxins" in your body . . . . I remember that I felt quite odd and not well for a long time after I quit . . but that too, has passed.
Good Luck to you both . . . by all means, if her body is telling her that something is really wrong, keep looking to Docs till someone figures it out. Otherwise, be patient and take it easy. It will get better.

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Wow! Thank you all so much for responding and being so awesome, supportive, and informative! Aside from a big ol' THANK YOU I have a few follow up questions :)

@gracie62 - I will definitely look into the possibility of Prinzmetal's. I think the main reason I have ruled that out was because I always read that night-time and resting hours are the worst flare up time for Prinzmetal's. And between midnight to six or seven in the morning is about the only time my mom can get any relief. Things seem to get really bad for her when she tries to leave the house or is sitting somewhere without her back being supported. (She was at the doc's and sitting on the exam table and the pain and dizziness got really awful - she could only relieve it by getting back in the car and pressing up against the seat with pressure).

@LidiaS - definitely think side effects may be an issue, for sure. Funny enough, my Mom's BP was always really low (symptom of the hypothyroid), so i am wondering how long she really has to stay on the metaprolol (beta blocker). I know the Plavix is a must because of the drug eluting stent, but yeah, I wonder in what different combos she may be able to mix things up a bit if the drugs are getting to her...

@MMaslek - her BP may be an issue...although it's always been pretty low with her so I wonder why the dizziness and light-headedness would be so bad now..maybe she is just way more sensitive after everything she has been through. I will pass along your congrats on the smoking thing! She was a nearly 40 year smoker, so it's marvelous that it's been over seven weeks with no smoking now!

@Ecksunbeam - she has been taking Xanax now in the evenings...do you know if she should be concerned about over-usage or how long she stays on that? I know it helps her, but she worries about growing dependent. And definitely thanks for talking about the emotional side to all of this..My mom is one heck of a strong lady and she's not been able to accept what's happened to her at all. That is definitely part of everything.

@ladybugsister - in regards to the nitro, I will suggest that to her. She hesitates to take it because it gives her crazy headaches sometimes and make her even more light-headed, but I think it'd be interesting to see if it relieved her pain. It's so fascinating to me how a couple of you have mentioned the body reacting to the stent, even feeling the stent - I truly believe this is part of the problem for my mom but the doctor literally told her, "You should start writing fantasy novels because you have one heck of a imagination to think you can feel the stent." :( I did not particularly care for that response!

Sorry this was so long, but I just wanted a chance to respond to everyone!! Thanks again, and let me know if you a have any further thoughts on my responses here. Every bit helps!

-Carrie

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Carrie:

Just so that you know, not everyone with Prinzmetal's is typical. I am one that can get spasms any time of the day or night, no matter my activity level of lack thereof. And if the spasms are being brought on by what her body went through, she might not have the classic symptoms as described.

It is hard when we know something is wrong but what is being experienced doesn't "fit". The body always has some sort of reaction to a foreign body being introduced. With all the trauma your mother went through, this response was likely amplified. Don't let the doctors' words get to you. If they haven't seen it before or can't find a reason for it, they often decide there is nothing wrong and we are exaggerating. It can be hard to convince them otherwise.

Dianna

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Dianna:

okay, I will definitely will ask her doctor about prinzmetal's. I totally didn't mean to assume everyone is the same (if anything this experience for my mom and my own health issues actually, have taught me people are definitely not always "typical!), everything is worth looking into at this point. do you use medication to help with that such as Renexa (which I believe Amy mentioned adove)? I will also be having my mom suggest the cardiac rehab as I've heard that is very helpful. Thanks!

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Carrie:
I take a calcium channel blocker for my spasms. Currently on Diltiazem HCL. It is the third CCB they tried for me and the one that finally worked after they adjusted it a few times. It sometimes takes trial and error with heart meds to get what works for each individual in the right dosages and combinations.

Dianna

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Just to add . . . there are spasms other than Prinzmetal's. When I first starting getting them, it was classic . . . at rest, wake me up at virtually the same time every night/early morning. It did progress and change from there. I am on a very high dose of long-acting nitro (240 mg isosorbide mononitrate), so am always somewhat dizzy/lightheaded . . . but have also adjusted to it, somewhat. This is a side effect of virtually every heart med.

The quick/act nitro tabs will make a person lightheaded, so make sure and be sitting/lying down. But, they are a blessing to have and use!

Lastly, with regard to feeling the stent. Tell your Mother that many of us could add a chapter to her fantasy novel. . . . . I knew from day one that I could feel it, and for many months after that, depending on what I was doing or my position, it was actually pretty spooky. I do think that her heart will get used to it, for the most part. It is amazing how our bodies can adjust to things. That is sooo frustrating that a doctor would say something like that to her. I've gotten the "looks" from docs as well when I've said things, but am used to it and will continue to tell them like it is!!

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ladybug - about how long did it take your body to adjust to the stent? was it ever painful or were you just aware of it? and yeah, the song and dance with doctors is getting beyond frustrating at this point. I am not saying all docs are bad - obviously some are truly caring people open to listening, but there seemed to be this inherent arrogance with some about their knowledge - and a true lack of desire on their part to learn from the patient. It's a one way relationship in far too many cases.

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I'd say it took about 4 months to adjust . . . and yes, at times it was painful. I remember one time in particular, laying very still on the sofa because I was certain that it was poking thru my heart! Just sort of a stuck feeling, I guess. It's kinda hard to describe. Also, the cardiac caths, for me at least, make my heart very sensitive and twitchy for awhile. I had 3 done, each exactly a month apart, and my heart didn't start to feel normal (as normal as it can get) for probably 3 or 4 months later.

If you and your Mom don't feel that her cardiologist is listening to your concerns, don't be afraid to switch to another. I went thru 3 of them before I found one that I trust and really pays attention to what I say. My prior cardiologist (the one who put my stent in) told my fiance' after the procedure that if I had any "pains" after that, that it would have to be reflux, (this is AFTER he saw a few of my spasms recorded). Anyway, after that, he took me off all of my meds and was going to send me on my way. Thank God I was still hooked up to a heart monitor and still had the iv needle in my arm, cause within a few hours I had the worst, most painful spasm I'd ever had! The nurses, as quick as they could, got iv nitro hooked back up . . . I thought I was going to die! So, the cardiologist came into my room and said (and I quote) "Huh!" Needless to say, after a few choice words from me, I was looking for a new doc!

Tell your Mom to try to stay positive and that it will get better. However, she knows best if something is truly wrong . . . . make sure she listens to what her body is telling her and it is better to err on the side of caution than not!! I don't think she can have an MRI done yet, but there are scans that can be done to have a look-see what's going on.
Good Luck . . . . your Mom is our prayers. This is a journey that us Heartsisters go thru together : )
Dorie
P.S. If you reply to me, be sure to click on the reply button in this post . . . otherwise I won't get notified that you have replied. I just always go back and recheck posts that I've replied to . . . just in case!

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P.S. Is your Mom on any statin's? For some people (me being one of them), statin's can REALLY make a person feel horrible!! I was on simvastatin, and have since quit taking it.

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Sorry for my delay in responding!

Thanks for your continued advice. I talked a bit with my Mom yesterday and she is not so sure about the possibility of vasospasms mostly because of: a) her pain is constant, it's a continuous dull to moderate ache and it does not "flare up", necessarily, just always present. Also b) when she takes a nitro tab, nothing changes, she does not feel any better, the ache remains constant. I know anything is still possible, so we'll still talk with her doctor about it just to get another opinion.

As far as the statins - yes, she is on Simvastatin. Her doc has argued that this could not cause any really bad feeling side effects, but once again, we know that doctors are not always right ;) She had a bit of a cholesterol problem before all of this, but not a major problem so I wonder if she could either take a smaller dose, or try a different med. Any suggestions? She also wonders who necessarily her Metaprolol beta blocker is consider her BP and pulse are normally pretty low. Of course, Plavix and aspirin will continue to be a must as she has a drug eluting stent...or at least as far as I know.

-Carrie

PS: Thanks for the tip about replying! I wonder how that worked as far as notification was concerned...

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Carrie:
Some people can't take beta blockers for a wide variety of reasons. I am one (they make my blood pressure too low and increase my spasms) and I take an ACE inhibitor instead. Several people have mentioned your mom's meds may be an issue. Be sure and ask her doctors about this.

Dianna

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Dianna,

Definitely have discussed the meds issues with my Mom and it's on the list (at the top!) of things to discuss with her docs. I think the hardest thing is going to be convincing the doctors that changes may need to be made, but we'll stick to our guns and see what happens. I think its important my Mom lets them know just how horrid she is feeling. Thanks!

-Carrie

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Have you taken into consideration that your mom could be allergic to the stents? I see this happening more frequently, in fact I know first hand as I had to have my stents removed and I know just how awful they can make you feel. I am allergic to nickel and now we are finding I am allergic to other metals as well. We know what this does on the outside of the bodywhen your are allergic, imagine what it does on the inside of your heart! I was having flu like symptoms, heart palpatations, chest pains, shortness of breath, redness in my skin, weight gain (serum sickness) ,my stents were in for much longer though, mine were in for almost 2 years before we realized this was the problem and it is not easy to get the doctors to believe this could be the problem, but if you reallly think this could be the problem you have to get them to get you tested and get you some help...this is nothing to fool with... if you need help with this...email me at slkoko24@roadrunner.com

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Hello again,

Don't know if anyone will still be reading this thread, but wanted to update it nonetheless.

So, after my Mom's docs diagnosed and then within the same week ruled out pericarditis, they have decided yet again that she has it. This came after a Mother's Day weekend where my Mom was having some of the worst constant pains so far.

I am deeply concerned to say the least. An EKG taken today looked great, so that's wonderful news, but nevertheless I am baffled as to how the doctors can jump back and forth like this. Even more concerning to me is that they have put her on Indomethacin (Indocin). I've been reading about this drug all morning and have some grave concerns about it. She is already on Plavix and Aspirin and now this will thin her blood even more! It has a high likelihood of causing even MORE dizziness and drowsiness which plague my Mom every day, and worse is the definite potential for stomach bleeding. She cannot afford to bleed out in any way, shape or form while she is on all these blood thinning, anti-clotting meds!!

Then, if the Indomethacin does not work, he wants her on a month long treatment of Prednisone - also a drug that deeply deeply worries me.

All of this prescribing based on what?? One day its pericarditis, the next it's not? So frustrated. He had her take ONE dose of ibuprofen and when that did not work, it was the decision to go with the Indomethacin.

Sorry, ladies, I just had to vent after this. So so so tired of seeing my Mom suffering. Thinking of maybe moving back in with my parents. Don't know what to do anymore.

Thanks for reading,
Carrie

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