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CARDIAC SYNDROME X PHASES

megandjacksnan
0 Recommendations

Hi I wonder if anyone can give me any information. I was diagnosed with Cardiac Syndrome X 3 years ago. In July 08 I was worken by a cardiac spasm and the Dr told me that CSX happens in phases. Has anyone ever heard of this. My dr is not sure if the spasms are happening in the small or large arteries and they cannot provoke them to see what is happening. I also get throbing like pains in both my calfs and pains in my head which last just a few moments but are very painfull. I would appreciate any ones thoughts.

Explore topics in this discussion:

Exercise Burns Beta blockers Plavix Angina Menopause Norvasc Stress Asthma Heart disease Dizziness Cardizem Cardiac syndrome X Imdur Pain Heart attack Floaters

19 replies

careh

Dear megandjacksnan...I also have So-called syndrome X (I don't care for the name myself, I call it what it really is, microvascular disease :)) Any way, here is an excellent link for you to look at....this is a quote from healthywomen.org that may answer some of your questions....

"Microvascular disease. Also known as cardiac syndrome X or small vessel disease, this is a disease of the finer blood vessels and is characterized by chest pain or ischemia without evidence of blockage in the large coronary arteries. Women are at higher risk than men for this condition. Microvascular disease may be caused when the small blood vessels in the heart don't expand enough due to abnormalities in the function of the endothelium (the layer of cells lining blood vessels). Postmenopausal women and women who have had surgical menopause are at risk for experiencing symptoms of microvascular disease because their declining estrogen levels may affect the small blood vessels in their hearts.

Because this condition is a small vessel disease, it can't be seen on an angiogram (an x-ray with dye that identifies blockages in the blood vessels). Special imaging tests, such as PET scanning or MRI, may help with the diagnosis in the future. Today, however, microvascular disease is usually a diagnosis of exclusion—meaning you may be diagnosed with this condition after tests provide no other cause for the chest pain. Some health care professionals use the same tests used to diagnose CAD, such as an EKG, echocardiography or coronary angiography. Most women with microvascular disease have at least one risk factor for CHD, but it can occur in women who are otherwise healthy.

Medications commonly used to treat heart conditions may help to relieve pain caused by microvascular disease. Symptoms can be debilitating and new data suggests that if left untreated, women with microvascular disease do not have as favorable a prognosis as previously believed. Their risk factors should be managed as aggressively as someone who has CHD."

I am being treated with nitro patches (0.8), and calcium channel blockers as well, but my symptoms have just kept progressing. I do notice that they seem to go in "waves" of good days and bad days. My angina is mostly in my chest, left shoulder and arm, with SOB and occasional nausea, and I get it every time I lean over or try to walk too fast, even on nitro.
I hope this helps you to answer some questions, and please feel free to ask me anything you need to know....I have had this disease since 2004.
Carolyn

megandjacksnan

Hi Carolyn. Thanks for the information. This is a horrible condition, not only because of the symptoms but because, here in the UK, doctors don't take it seriously. I am sure they don't read the latest reports from America ref: WISE. Hospitals in London are undertaking similar trials so hopefully they will take notice of that. My main symptoms are pains in my chest, neck, jaw and arm plus pains in my legs and head. The chest pains can come when I am resting or exercising or when I am agitated. I was on quite a large amount of medication, but my cardioligist took me off them all and I just have Plavix (I can't take asprin) and diltisem to reduce my BP and spasms. Other than that I have medication for asthma and underactive thyroid. (If I was a dog they'd shoot me.) It's so nice to know that there is support out there.
Keep well and best wishes
Sheila

careh

Dear Sheila...I know how you feel....this is a nasty disease for sure! My doctor has the nerve to call it "a nuisance condition", but at least he saw fit t give me nitro for symptoms. :-)
Here is another link I found. It was in the heart to heart newsletter...
http://www.sciencedaily.com/releases/2009/05/090511164612.htm
This is definitely not a nuisance condition. Stay well, and please keep in touch!
Carolyn

Hany

Sheila I just read your profile and can really empathize with what you have been through. It is so bad the way the medical proffesion treats patients sometimes.

I was told for about 10 years (I went for my first EKG with chest pain 12 years ago ) that I was anxious, hypochondriac, mad, neurotic ect ect .. They kept saying there is nothing wrong with your heart , get on with your life.

Well yesterday I saw this specialist for microvascular angina. He also said there is nothing wrong with your heart. I asked him what I have got then , he replied cardiac syndrome X. (I hate that name) . He said it is not heart disease, that the micro vessels are so minute its scaresly a problem , its just very debilitating. He then offered me hypnotherapy!!!
I think hes the one that needs that.
I said to him I heard people have had heart attacks with this. He said nonsense ,in 20 years he has never heard of anyone having a heart attack with this condition. He said with medication I can stop the pain and get on with life and even have children. That the hormones would probably help me.

I was so relieved to FINALLY be given a diagnosis but was a bit bewildered by the fact that he seemed to dismiss this problem as being totally benign. I dont want false hope I want the truth. Especially with something like this I want a doctor that knows the facts.At least he didnt suggest pain killers like the last Dr I saw who has written articles on womens pain being an exgaggeration! How does he know that ,can he feel our pain. Obviously not. I cant help but think there is a degree of sexism going on here. Men wanting to label women as being histerical.

Anyway the good news is though that I put on the 5 mg patch and it worked really well. I felt the best I have felt in years and walked and walked. I still have twinges and I dont think I will be able to move for the next 3 days .Also on calcium channel blockers. And I am going through a good phase. I hope it doesnt return with a vengance like it usually does. And I hope I dont ever get so used to nitro it stops working.

That is a good article, Carolyn , I might copy it and take it with me when I see the Dr again. Anyway he was a lovely man and I felt very relieved when he said he was gonna get me on the right medication so I dont get the pain anymore. And I am wishing that thats possible. I will try anything (except hypnosis or pain killers) to get better.

take care
Hana

megandjacksnan

hi Hana, I empathise with you totally. I feel that I am banging my head against a brick wall. I had tests in December for a leaky heart valve. The Dr I saw took me off all medication for my heart. I had no medication until January when I went back for the results. The dr I saw put me back on Diltisem which is a calcium channel blocker. I had been on 300mg daily and he reduced it to 90mg morning & night. He informed me that my arteries were going into spasm, but he wasn't sure if it were the smaller or larger arteries and they couldn't do anything to make them happen. I asked him for medication for these spasms and he told me that was diltisem. I was suprized and asked him why the other dr had took me off them and he said that that dr didn't believe CSX exists. In the past I had been told that the dr will see me when I start to pass out. My cardiologist told me that he expects my CSX to progress to CAD as both my parents had it and I have underactive thyroid.

I research CSX and take it to my own GP. At the moment I have started supervised exercise to help me combat it. At the moment I feel fine but no one knows when it will strike again. At least we are not on our own.
Keep well and good look and God Bless
Sheila

Hi Carolyn, thanks for the link. When I was in hospital in July the dr told me CSX was a neusance and inconvinience so I understand what you mean. I am lucky that my own GP has an open mind and is very supportive. Keep well

Sheila x

careh

This nuisance stuff makes me so mad!! Haven't these (Idiot!!) doctors ever heard of the WISE study??!! I guess those if us unfortunate enough to have this problem will just have to be our own advocates. Do we have to have a full blown heart attack to be taken seriously? Heavens! This burns my buttons!
Take care, my friends..
Carolyn

JacQuelyne

Megan, although no one has specifically diagnosed me with Cardiac Syndrome X Phases, I have Cardiac Spasms. They were seen during the angioplasty process by my doctor and were causing severe problems after my second angioplasty. They gave me Ranexa 500 mg twice a day, which is stronger than nitroglycerin (and very expensive let me tell you), it is a type of nitrate, to help when I get them. I get the spasms, sometimes referral pain down the right or left arm and vomiting or dry heaves. They can go on and off for several days and then quiet down for days or weeks at a time. This is the first time I'm getting some confirmation that I'm not alone in this experience. Thank you very much for pointing me in the right direction.

Talk with your doctor about the Ranexa is he or she hasn't mentioned it before, it might help you keep them under control.

With light,
JacQuelyne

lkay

Hana,
Even though the doctor blew off your diagnosis as insignificant at least you now have a name for what has been troubling your heart. I'm happy to hear that for your sake. Now its a matter of getting a doctor t take it seriously.

good luck with controlling it,
Laura

megandjacksnan

Dear all, thank you from the bottom of my heart for your thoughts and encouragement. You are all in my prayers. I had always felt very isolated in my condition but I feel so inspired to know that I no longer need to be alone as there is a world of sisters out there who are in a similar position to myself. May God bless you all and the angels protect you and give you stregnth.

Sheila xx

Hany

Hi Laura

Thanks , I do feel very relieved. Angry that it took so long , frustrated at the lack of understanding , a little depressed but most of all relieved ,so now I can start healing. I agree with Sheila it is a lonely condition but it makes the world of difference that there is understanding here, with so many in the same/similar situation.
cheers

Hana

katie_colorado

Thank you for this information. I have had all these symptoms for some time. I had a cardiac cath last month and it came up clean. I asked the dr in the procedure room if I can have angina with a clear cath and he said "Yes, but something is causing it." I hadn't heard of micro vascular disease and think maybe this might be what is causing my symptoms.
I have a follow up with my cardiologist in a couple weeks. I will definitely bring this up. I do know that stress always brings this on, but it also comes in times of low stress. Any suggestions to support me with this conversation? I know a lot of drs do treat females as tho we are just being emotional. This is a new dr for me so anything you ladies have found helpful when having these conversations with you drs will help....

katiejane

Hello Ladies,
Yes these things go in cycles, I swear...I have gone nearly 4 months without a lick of nitro and the past 3 weeks I have used nearly a whole bottle. I am on Cardizem LA 240 every day, nitro spray as needed and imdur (a long acting nitro) as needed. I know from experience they will eventually ease off, but I do wish they would hurry up and not cause a HA first! :)
Kristen

careh

Dear Kristen...mine does that too...the cycles I mean. My husband calls it"good days, bad days". I am always on nitro though so I don't know how often I'd be "popping a pill" if I weren't on a patch (0.8). However, I do know that I always have pain and SOB when I lean over...sometimes quite severe, even on my patch, but it is worse when I'm off of it at night. Does anyone else have that? It is a pain, especially if I want to make the bed!
Take care, all!
Carolyn

acd

Thank you so much for the discussion on this. I was diagnosed 10 months ago with Cardiac Syndrome X and finally decided to drop my cardiologist for another because she kept saying this is nothing but an "annoyance," not a "real problem." I was a runner for 25 years and this has completely undone everything in my life. Unfortunately, I can't take calcium channel blockers or nitrates because of side effects. I'm hoping to find another solution.
Andrea

katie_colorado

I always get it when I bend over. I usually have to stop when I stand up and let the dizziness go away. But that can set off an "episode" as well. It does go in phases. I also notice that my nebulizer treatment almost always sets it off as well.

kmps

After every test available through my cardiologist (actually he was my husbands).....He guessed and diagnosed me with micro cardiovascular disease. I too had a 100% clean angiogram....BUT he did say he saw some "calcium floaters". I have since visited with Dr. Sharonne Hayes at Mayo in Rochester....she is an expert on this topic....having focused her entire career on women with heart issues. She agreed with the diagnosis....and actually gave me a new test...
enthodial (sorry about the spelling)....I was on medication (10 Mg of Norvasc and Liptor to keep the levels low)....Dr. Hayes told me that seeing those
"floaters" are a key indicator of placque in the small vessels....obviously, my cardio guy here at Mayo in Az did not know that....but give me credit...his comments...there is SOME studies being done that women present heart issues differently than men, hence I have seen your attacks on the various test...so decided this was a good guess....I might be one of those type of women.

It has been almost 2 years....Dr. Hayes would have put me on a nitro product....but since I seem to be getting good relief...she let it alone. Also suggested if I have to have another angiogram....I could come to Rochester...when they do it and see the "floaters" they actually can test how much blockage is in the small vessels with some medication as they are in heart area....

20 months later....I am OK....but surprised by how many painful attacks I get....I guess it is angina...need to get back to the doc and see what he says....I would not know if it was the BIG ONE or just these interminent pains, etc.

I exercise a lot...(am 69 years old) and the exercise seems to help me....just the treadmill...but at an aerobic/cardio level...hope this helps....just one person's story/saga.

Scarlet65

Hi,
I was diagnosed in December 08. I too found that this goes in phases. What amazes me is that I was admitted to hospital, treated for unstable angina as I had all the symptoms, but then dismissed by the hospital to which I was transferred for the angio because it was ' normal'.I was ill enough to convince nurses, doctors and a consultant , but because the angio was normal I was treated like a time waster. I initially went to my GP because I thought I was reacting to an increase in my BP medication- from there I was sent to hospital following an ECG which showed iscaemic changes, which coupled with the chest pain and SOB pointed to something more sinister. I now have stellate ganglion blocks , which block the nerves associated with the pain . These give me on average 3 pain free weeks before the pain kicks in again - at a lower intensity and less frequently than before I had the injections. I also attend cardiac rehab exercise sessions twice weekly. It is wonderful to learn that I am not alone - it's a hard diagnosis to explain to people and I was very debilitated before the injections.

goldielocks

Hi,
I was diagnosed with microvascular angina after I had a "clean" cath. I have disease in the LAD and RCA but no blockages. I have had chest pain for 3 years. Since the cath the pain is so much more severe. I am hypersenstitive to most beta blockers, calcium channel blockers and nitrates just don't seem to work on me. I too am frustrated with my doctor. He was patience at first. I live with constant chest pain or angina right now. Does anyone know of a cardiologist that specializes in Cardiac Syndrome X that is in Arizona. The last time I spoke with him about it he mentioned medical disability. NO! There has to be someone out there that treats this syndrome seriously and working to find some resolve for it.

megandjacksnan

I really hope you find someone. I know here in the UK I am banging my head against a brick wall as Dr's have told me that my pain is a neusance and an inconvinience. However, there have been reports that Dr's should accept that women's heart disease is different than men's.

I really believe that the negative attitude of the health workers causes people more pain as we tend to be stressed trying to get dr's to put themselves in our shoes. I doubt it will ever happen as they have a cavalier attitude to the illness in general and that is if they believe it exists.

Take care and I wish you well

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