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Cardiac Microvascular Dysfunction

Dec 20, 2008 - 63 comments
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nitroglycerin

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cardiac microvascular dysfunct

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shortness of breath on exertio

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Cardiac Syndrome X




I'm on a mission to get this word out. I had a cardiac arrest in May 2008. I'm ok now but not fine. I did not have any disease in my heart ( no heart attack, no clot, no valve problem, no stent to place or vessel to by-pass) but a rather new to medicine diagnosis of severe cardiac endothelial microvascular dysfunction otherwise know as cardiac syndrome X.  After 2 ½ years of problems ( mainly shortness of breath on exertion) and after many interventions and tests which were all negative, including two left and right cardiac caths, I was referred to Emory University Hospital interventional cardiology. I underwent another cath as a way of a diagnosis by exclusion. They were pretty confident of the diagnosis they were to confirm. In the process of testing ( which consisted of adenosine, then recovery/opening with acetylcholine) I arrested and it took them a couple of minutes to get me back. I  was awake/conscious for most it and was even pleased when the docs were able to reproduce my symptoms! Unfortunately the recovery drug just didn't work therefore the confirmation of cardiac microvascular dysfunction. Emory, Mayo and U-FL,all researchers working on the same NIH study protocol for this dysfunction had not seen a case so severe. Needless to say a rough few days at Emory until they got my meds correct..............loads of IV nitro.
I had been quite a mess since January 2008, but could never say I was ill or sick, just plain short of air to the point of losing my ability to sustain speech. Lots of chest tightness, angina like pain and coronary spasms.  I am thrilled that this thing has finally got a name and  that I am on the best treatment for me. Altho' the prognosis is fairly good with aggressive nitro I realize that this may be as good as it gets....... this is very debilitating.  Because these microvascular vessels do not dilate when they should (from exertion-any type) I must keep continued excellent control of lipids as any blockages of these vessels would not be good. Plus I am quite dependent on nitro patches 24/7.  I am no longer in pain, have no shortness of breath unless I reach some level of exertion, rare coronary spasms, mild to moderate chest pressure and occasional  chest tightness that requires nitro SL in addition to the 24/7 three 0.4 mg nitro patchs I need to wear. My heart and other body parts are extremely healthy. I have my moments where silly minimal exertion brings on chest tightness and slams me up against the wall! It's all about exertion and stressors.
To my women friends-pay attention to your symptoms and keep written track of them. To doctors in primary care and speciality care, consider this diagnosis in your patients when otherwise healthy people present with vague cardiac type complaints but always shortness of breath and chest tightness with exertion. My doctors have been just been puzzled by my consistent, persistent, and well articulated complaints. This thing is not real rare, just difficult to diagnose therefore uncommon. It is not defined within any race and  seems to hit post- menopausal women. Researchers are looking for the 'why' while looking for a treatment. I'm glad it's 2008; if this had been several years ago the NIH protocol studies would not have been out there for researchers to concentrate on and I would certainly be in worst shape.  I am the Poster Child at Emory for this dysfunction and the researchers are therefore learning a lot from my experience. I know this dysfunction well and like many other long term diagnoses this requires management. HUGE lifestyle changes. Emory and similar researchers do not know why this happens, if it is hereditary, viral or anything else at this point.
October 2009: This condition is getting progressively worse. Since Aug.1st 2009 I have had increasing episodes of chest tightening, vasospasm and chest pain only relieved by up to two sprays of nitro. In most episodes it is not brought on by physical exertion but by some other cardiac demand out of my control. The rare but familiar sharp, quick spasms that go up the heart to jaw and thru to the back I assume involve the LAD. The spasming in the microvessels seem to be the chest tightening and SOB that can accompany this. Still no research on this as to cause or treatment. I'm just happy that I pull out of these episodes, tho' very tired, with the nitro sprays. I am still wearing two 0.6mg patches daily 24/7.  
February 2010: Now I'm up to 0.16mg daily nitro patch and two calcium channel blockers.There may be some nitro tolerance involved here but it's still the nitro that brings me out of the pain. The pain is assumed to be from the profuse spasms that I have, referred to as variant or vasospastic angina. It only occurs in the prescence of a tight feeling left chest. My ability to do any minimal exertion is very low.
To my readers: I do not want to instill fear or anxiety in anyone trying to figure out their symptoms. I am very outside anything close to what is being seen by doctors with patients with this microvessel involvement. So keep track of your signs and keep involved with your doctors and if you can, get to a large well known heart center; they are best when it comes to knowing about the odd cardiac things that are out there.    

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Avatar universal
by kspots, Feb 13, 2009
Does your heart ever feel like a block of ice. I have a lot of your symptoms but sometimes my heart feels like a block of ice.  Sometimes my whole body feels like a block of ice and I have to lie on a heated mattress pad and electric blanket.  Or it is summer and the sun is out, I can go outside and sit in the sun and "unthaw".  This condition is very painful.  I think your condition is probably related to connective tissue disease.  I have read about cases like yours in connective tissue literature.  

Avatar universal
by suzzie1, Apr 26, 2009
Hi Joan,  Suzzie1 here (I couldnt figure out how else to contact you )........ Thank you for taking the time to tell me (us) about your health problems. You asked how my symptoms are !!  The answer is very bad. Very sob, can scarcely walk now (3minutes of gentle walking)  without getting chest pain, tightness/pressure. Tons of arrhythmias.  Still battling through the health system. Best wishes to you. 8)

Avatar universal
by Imogen797, May 09, 2009
Hello Joan
I am 67, live in UK, and have also been diagnosed with microvascular dysfunction.  No blockages of arteries but this all started a few months after being diagnosed with high blood pressure and being put on betablockers and other medications.  The frequency and severity of spasms increased so that after six months, I was suffering both day and waking several times in the night with intense pain.  IV nitroglycerin administered in hospital did help and all the medications were also changed.  This was three years ago but luckily I am gradually improving.  I really push myself to walk, garden and keep active and over the years I have learned to block out the pain (amitryptiline helps too, as does ordinary paracetomol).  I have always been super fit so this has come as a real blow but I am encouraged by the fact I can do a lot more now than even a few months ago.  Just hoping the improvement continues and that you, too, will begin to feel better.  I am told it is not dangerous (although I did have a heart attack when in hospital) but when the pain comes, it is really hard to believe that it does not matter!!   By the way, more often than not the spasms were accompanied by very hot but not sweaty episodes.
Don't know if this helps.
Imogen

Avatar universal
by lynn6280, Oct 06, 2009
Hey, This is lynn6280.  I finally am figuring out how to work my way around this site.  I read your journal, and I am happy that you were able to find your problem.  Nothing is more frustrating than not knowing what is wrong with you.  My doctors are wanting me to go to a pain clinic, and I am not wanting to do that.  To me that is not an answer to my problem.  They keep telling me that it is a nerve in the soft tissue in the ribcage area, but that is a guess.  They say there is no test to really check for that.  They say that I can get nerve blocks to relieve the pain.  I want to know for sure that it is nothing else, or what it really is before I go do something drastic like that.  Also, how long can you have these nerve blocks?  You can't have but so many of those, and I don't want to start living my life like that and then be right back where I started from.  

Avatar universal
by prichy, Oct 09, 2009
Hi this is Prichy age 60. Been suffering 4 months now. Started out of the blue. Ear pressure (both) followed by severe chest pain, up high in the chest, just below the neck, then tingling numbness down backs of both arms. These episodes last anywhere from 30 seconds to 3 mins. Sometimes at rest, sometimes walking the dog, sometimes in the morning sometimes at night. Have had EKG, nucleur stress test, endoscopy, non-invasive cardiac cath, evaluation by ENT. All normal. Cardiologist started me on Norvasc one month ago. Took 5 mg in the morning only. Bumped it up to One in the morning and one in the evening when I began to have LOTS of episodes at night.Any thoughts? Will this ever go away? I go back to see him again in 4 weeks.

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by lvfrogs, Oct 10, 2009
Thank you for sharing this journal with me.  I was trying to find out about it because I have Prinzmetals Angina already but my pulmonary function tests always come back low oxygen saturation levels and no one can figure out why. I have shortness of breath quite easily (I never used to), when doing any exercise, cleaning the house, working in the yard for about 10 minutes....so on my own have been trying to figure out if something else is wrong.  Do you know of any published articles about it that I could take to my cardiologist and pulmonologist? I have searched on the internet but am not finding anything.

I am sorry that you have been through all of this and have to live on nitro patches but glad that they have figured it out and you are living!! Thank you for sharing your story to help others. That is a blessing.

Colleen

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by ireneo, Oct 10, 2009
If you google "microvascular disease" there are plenty of sites that give information. I think the one that might have the most clout would be the one printed from the PBS program "Second Opinion." That show is cool because there's a panel of doctors and experts that discuss a "case" and it gets quite interesting. But check the others and see if any are helpful.

Avatar universal
by prichy, Oct 11, 2009
Hi this is Prichy,
Do any of you have any thoughts as to whether or night what I have sounds like cardiac Syndrome X? Please see earlier post for the details.Thanks to all.

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by diva2007, Oct 12, 2009
Hi, Thank's For Welcoming Me to The Group. I Also Have Been Diagnosis With Mircovascular Heart Disease. I Suffer For Several Of Years And My Last Anginogram I Was Really Comfirm That Yes Indeed I Had It. I'm On Imdur Nitroquick When Needed And I Was Also Added Cardizem. I Have Very Bad SOB When Doing Anything Or Just Sleeping. In The Last Couple Of Months I Was Awaken In The Early AM With Very Bad Chest My Left Arm Pain Up To My Jaw I Couldn't Breathe I Thought It Was Over. Well I Hope To Learn Alot From This Group.

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by joanincarolina, Oct 12, 2009
Diva; where you were finally diagnosed (medical facility/state) and do you have any other underlying medical conditions? I'd also be interested when you had your first symptom of MVD and how this progressed for you to your current complaints. Chest pain at night is not good. Has your cardiologist suggested a nitro patch for better protection against the spasming microvessels? Are you taking cardizem once or twice a day?  Again, relaxing the cardiac vessels at night,when there still is cardiac demand,is important. What is your age and menopause status? Welcome and thanks for sharing. Joan-Breathless in South Carolina!

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by diva2007, Oct 13, 2009
Hi, Joan I Was diagnosis @ Alexian Medical Hosptial About a Couple of years ago. I also have Left Ventricular Distolic Heart Failure, Right side Failure, Mild PAH, I'm 37yrs old. I take Cardizem Once a day @ 240mg. I Should Ask about the nitro patch.  

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by joanincarolina, Oct 14, 2009
Diva: Wow! You have a lot of serious heart issues. Do you know your ejection fraction,the percentage of blood that actually pumps out of the left ventricle? When do you think you had your first sign of MVD? This is a question we all think about with regard to progression of the dysfunction process: Where does it lead? I have my own thoughts on this and your other factors may be complicated by other uderlying processes. Are you diabetic? I understand the problem with PAH. My first sign, with no other problems was abrupt onset of SOB with exertion. I can, in retrospect, look back and say that continued exercise, after, during, menopause made me fatigued when perhaps I shouldn't have been. I've always biked,golf,danced,walked without fatigue so I attributed to menopause......which researchers have not excluded in playing a role in this picture. Isn't it all about managing daily exertions and stressors? Joan.  

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by ireneo, Oct 14, 2009
Being short of breath upon exertion seems like a tricky symptom. A person who is out of shape or a bit chubby will pant and puff when they get active (like a flight of stairs). Or a person with asthma (like me) can write it off as their asthma acting up. Is there any key to knowing whether SOB is significant or just a common complaint?

Irene

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by lvfrogs, Oct 14, 2009
Joan,
I was reading through the comments and wanted to add one of my own.  Probably about 10 years ago, I was having similar chest pains that I get now.  My doctor sent me for a stress test but told me it was just stress causing it. He thought having 5 little kids was causing it.  My stress test came out inconclusive and I never went back because I thought it was just stress, not my heart. In the meantime, I was still having them on and off.  Now, that I know what they are, I believe I have had this all along, but didn't know it and I think that is scary.  Too many times women are put off by saying they are either stressed or depressed.  I think it got worse over time. The SOB started about 5 years ago for me and no one could tell me why. I think that I was told it could be anemia, since I was anemic, but it has never gone away and they still tell me they don't know why. Reading the info that you had pointed out to me has shown me the correalation with all of these issues and MVD.  thanks!
Colleen

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by ireneo, Oct 14, 2009
Funny how the doctors do their tests, see nothing and then say the pain is nothing. Same thing here: mentioned the chest pains I was having, wore a monitor and recorded the events (2 nasty chest pain and arrhythmia times). When I saw the cardio before my surgery, he said he didn't have the monitor results yet but he didn't think my pain was heart related. I also made it through a stress test. So surely I must be in fine condition. That was almost 2 years ago, still have the crushing, twisting pain (think of your heart as a sponge and you're wringing it out).

At the coast trip we walked down to the Sea Lion caves. At one point I walked up some stairs (about 30 steps), did it slowly. But when I got to the top, the pain started - like spasms or cramps in my heart, over and over again. They went away and I didn't die so it's no big deal, right? LOL

I'm supposed to go in for my womanly test (ahem) and if I'm brave, I'll mention to her that I'm still having chest pain now and then (a couple times a week). She's more proactive than the cardio I got last time.

irene

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by lvfrogs, Oct 14, 2009
Irene,
You need to see a new cardio doctor. Your pains are not normal.  I have done the whole monitor thing too.  It wasn't until I had a major spasm during the stress test, that the cardio doctor was convinced something was wrong. He did the heart caths and confirmed it. Had a major spasm during both of those too.  

I cannot walk up stairs at all. Maybe one flight.  Reading what happened to you, you don't want to die, do you?  So call the cardio doc (a new one) and get checked out. Make sure you tell them just like you told us here!!!  I am going to a football game Saturday and am very worried about getting up to the seats. Last year was horrible. I tried telling my husband and he is like "I will help you up the steps" but I am really worried. I hope I can do it.

I want to hear you got this checked out Irene!! Don't make me come across the country!
Hugs,
Colleen

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by diva2007, Oct 14, 2009
Dear Joan My cgest pain started back when I was in my 20's  but I was diagnosis a Diabetic in 2004. Well when they do a Echo they said my EF is 55% but when he did the Angiogram and use the Fick Method is was Mildly Reduced I don't know by how much though and I do have a Mildly Enlarge Heart also. I know I was young but if they wuld have to me seious and did something maybe I wouldn't be so bad know. I can't walk far or climb stairs but I do have a good Cardiologists though and he listen to me.

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by diva2007, Oct 15, 2009
Hi, Joan I found out last month with a chest X-Ray That I had A Plueral Effusion On Both side Of My Lungs.

Avatar universal
by prichy, Jan 07, 2010
Hi Joan
It is Prichy from Atlanta. Hope you had a good holiday season and are looking forward to a healthy 2010! Where is everyone from this posting. Nothing since mid October from anyone?  Is anyone somewhere else???? On a different page maybe??

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by Sugie1938, Jan 18, 2010
Hi, This is Sugie38, and I am reading everything I can on chest, and jaw pain. You can read my posts, but I have had all kind of heart tests, and they haven't found anything. My primary says its "Fibro" which I disagree with. I know most of my other pains are the result of being hit by a car as a pedistrian a few years ago. I started having chest pain about a year ago, and it has gotten worse. They are not sharp pains, but a constant hurt that I find hard to describe, and never really goes away. I do notice it's slightly worse when I exert some, however it constant anymore. At the same time I have pain up both sides of my neck to jaw, and get a strange feeling in my head. I am dizzy a lot, even when I am not bending down or something. I also have pain directly behind the chest area into my back at the same time.I feel exausted even with a short walk or exertion. I had a tumor removed behind my ear a couple years ago on the partoid gland, which was benign, so don't think that was a factor. Can anyone tell me if this sounds like microvascular disease or any ideas what it is?  I really do not know where to turn now, and am getting very discouraged. Thanks to any help.

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by joanincarolina, Jan 19, 2010
Hi Sugie; I'll assume that the "fibro" you refer to is fibromyalgia. Women present differently than men when it comes to heart problems especially in CAD. The constant hurt that you describe is what I have at the start of an episode of ischemia. It is left of center sternum and at the base of my heart area just around the rib cage,but deeper inside. Microvascualr dysfunction has many different aspects but one of the common ones is chest tightness and shortness of breath on exertion.....and it doesn't take much exertion...and all heart tests, including caths are negative.There can be sharp pains, probably spasms, but chest tightness is always on the heart side and can go into the arm pit, thru to the upper back and made worse by exertion. I have never had dizziness, but have been light headed with an episode. This dysfunction seems to be an escalating situation with many days and months that can be good.What meds are you on?
And where are you located? Most regular small city docs are not going to recognize this as the best tests are always negative. Get the doc to listen to your continuing complaints. I doubt any relationship with your parotid gland or leftover accident.Your statement of "feel exhausted even with a short walk or exertion" is very typical with this MVD. I'll look at your other posts and seem to recall I may have sent a posting to you before. Don't be discouraged, be persistent! Joan.

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by Sugie1938, Jan 19, 2010
Thank you Joan,    I hope you could see the post's I did on all my tests, which they said were all fine. I didn't mention that as a small child I had Rheumatic fever, but the cardiologist didn't think that caused a problem. My pain started out as just occasionaly, but now I have it all night, when I get up in the morning and it never really goes away. This is not a sharp pain, its must a sort of heaviness, but I really haven't figured out how to explain it, and that is probably one reason the doctors aren't able to diagnoise it. It isn't worse if I take a deep breath. I keep unhooking my bra, as it feels like it is to tight, but really isn't.  I constantly have the pain on both sides of my neck that goes up to my ears. That too, is hard to explain as it is not a sharp pain either, almost like a pulling or "drawing" feeling, but bothers me so much I am constantly rubbing or feeling it. The doctor sort of laughed and said well quit touching it then. I usually feel the pain in my back around the shoulder blades at the same time. I feel faint a lot, and as I said get dizzy if I bend over even a littled, and feel fatigued. I take OTC for sleep, as I don't sleep more than 5 hours, and I have always needed eight.  My primary doctor who called it Fibromyglia, did not even get up and touch my body to see if I had sore places, but I had mentioned places that I was sure has arthritis now where the car hit me and the fractures were, and a bone scan later did prove that. He gave me a pricription generic for Flexeril a muscle relaxant, and a anti-inflammatary Meloxicam, generic for Mobic at that time, and after a month caused me to have very sharp pains. That is when I went back, and he told me to get off them at once, saying "those aren't at all good for you". The sharp pains went away after a little time, but this other has not. I read the warnings that were given me with them, and it said they could bring on a stroke or heart attack without warning. He again said he thought it was Fibro, and I said before I accept that I wanted tests to rule out something else. That is when I started the heart scans, etc. When my husband was in for his check up some time later, he mentioned I needed something done, and the doctor siad, " Well, I really don't know what else we can do now". I have not been back, trying to research and see if there is a particular kind of doctor to go see. I live in the mountains of Colorado, go to the Denver area Kaiser clinic, and huge Franklin bldg. next to St. Joseph hospital, where I had a  tests done at both places. I have confidence in all them.I was told to go to the emergency room by another doctor doing follow up, and was a second time, but they let me just go to the doctor instead.  I wish I could find a way to describe the pain better, and that probably would  make it easier for finding the cause. I have never had those pains before. I know this is a long post but I am trying to put all my thoughts and symptoms down. Thank You so much for replying to my post and for any suggestions you can give. I feel really discouraged and losing hope. I am starting to feel like a hypochondriac. I am so glad to have found this site, and be able to hear other people's symptoms and results.

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by Sugie1938, Jan 20, 2010
Joan, My percriptions are: Alendronate 70mg., Simvastatin 80MG., Omeprazole 20MG,Levothyroxine 100MCG, Ipratropiium spray.03%. I also take V.E, V.D, calcium, vitamin tab., V.B (3x week), Fish Oil, Co Q10, Osteo Bi Flex, and Acidophilus. The Kaiser clinic is one of the largest clinic's in Denver, and affliated with St. Joseph Hospital. The cardiologist did say she would do a angioplasy (spelling?) as an outpatient, but was sure she would not find anything. I do not want to do an evasive procedure if they think that. You ask about being out of breath, I notice if I walk very far, I feel tired, and need to stop and breathe, not really panting, but I do feel like I am breathing harder. I do not get a lot exercise so that is probably part of it. I am not on any anxiety type medications, however a few years ago, I was, but don't remember the name. I seem to have a lot of side effects to most medicines, and refuse them if I am not sure they will help. I like to research them, and as I said in a prior post, the two I was given for chest pain and what I considered arthritis, caused extreme sharp pains, and I was worse. I stopped the Co Q10 for awhile when I read it could cause chest pain, and just recently started again, seeing no difference there. I am under stress but have been for years in some way or another off and on, so I have wondered if that contributes. This chest pain has been going on gradually for about a year, getting worse the last several months. Thanks again.

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by joanincarolina, Jan 23, 2010
Sugie: thanks for the info. Your cardiologist is probably very correct in that nothing would be found on angioplasty (heart cath). I'm just back from Emory and on another drug regime so give me some time to look at your meds. I'll also comment on RX fish oil as opposed to OTC fish oil. Joan.

Avatar universal
by frutrated63, Jan 30, 2010
Joan,
I am at a point where I am pulling strings from a hat...I am desperate and scared and feeling like I am beginning to loose my sense of common sense with some of what is going on with me.  On top of the stuff that I am about to describe, I also have a somewhat extensive history both medically and psychiatrically.  For the most part, I had control of it all up until a couple of weeks ago.  I will let you know what my actual diagnosis are as I go both because they are a part of my story so to speak and because I feel like I must be up front and honest.  I know that you are not a doctor, but I don't know, sometimes it is the others in the same boat who can at lest give us the confidence to keep going...so to speak.
Up until about 4 years ago I had my biggest medical problem consist of an occasional case of asthmatic bronchitis, sleep apnea, and the seriousness of depression and a childhood history of trauma and the issues that go with that...and I was dealing with it all.  Then I started having some minor though consistent chest pains that were a little nerve racking.  I went to the ER to be sure that all was ok because my mother told me it was the best thing to do and because I have common sense.  Nothing.  Then next day I was on the couch with a feeling like there was an elephant on my chest.  OK, no problem...except that my doctor told me they said nothing was wrong at the ER and there was nothing she could do and it hurt like you know what.  I downed antacid like it was going out of style to know avail and the following day made an appt. with my GI doctor for a full work up with him since I also have acid reflux and IBS and know that can mimic heart symptoms.  After that and about a year and a half of a lot of testing, the result...Lymphadichyperplasia...a fancy name that may not be spell right for large lymph nodes.  While I cont. to have a constant low grade pain just to the right of  my middle chest, I knew that nothing was wrong and lived with it.  I also knew if it changed any that I needed to be concerned.
About 2 years ago I started out having palpitations and it was discovered that I had high blood pressured.  I was put on Metoperol then HCTZ for the water weight gain that went with it.  Since I have had problems with my potassium staying regulating.  Also I have Hashimotos Thyroidiitis (Autoimmune based hypothyroidism).  
I have noticed that in the past two weeks or so I have absolutely NO ENERGY!!!!  When I went to change the sheets on the bed I had to take a break and finish it after I sat down because I was so exhausted and my chest tightness that often feels like spasmy like pains on the right side, under my breast, under my arms, down my arms, up my neck on either side - but mostly on the right with a tingly like feeling in my face that I often equate to the feeling one would have after the novacian is wearing of and just about gone, sometimes a pressure in my head that is like no other I've ever had, and/or just in my cheek area, I could go on and on.  AND IT GETS SO MUCH WORSE WHEN I MOVE AROUND!!!  I also notice that in the mornings I feel better than in the evenings and night times.
I have again had EKG's, blood work, a stress test, chest CT scan and all are stating basically nothing.  What I do know is being found is that my vitamin d level is really really low, my blood surgar was somewhat high on several occasions but during a fasting glucose tolerance test it was normal and my A1C it was a bit high, my potassium level has been normal, low, normal, and low despite the fact that during the second set of testing there was a potassium supplement on boat and that when i was in the ER I noticed that the nitro patch they gave me did not help totally but some and that when I was feeling syptomatic I the monitor would ding but when I was able to see it it was either saying my pulse oxygen was somewhat low and/or PVC1, 2, or 3.  I also know that I get short of breath with this stuff, but i have asthma, but know when the inhalser helps.
I am tired of hearing people telling me 'it's anxiety when I know that something is wrong.  I don't know what, don't even want it to be my heart, or anyother major medical problem, I just want to know what is making me so non functional and scared.  
If this sounds like anything you have heard of feel free to let me know...like it or not I would love to hear what you say.  Thanks
Frustrated

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by joanincarolina, Jan 30, 2010
Dear Frustrated: What meds are you taking for anything heart related besides BP med? Have you gone to a cardiologist and not just the ER? Can I assume that your stress tests and CT scans, EKGs have all been reviewed by a heart doctor, not an ER doctor? Nothing you tell me glares out except the "low grade pain just right of my middle chest" and " gets worse when I move". Are you checking your BP? Low readings can leave you feeling zapped for energy. Tell me more about the heart symptoms, when they occur, how they feel, and if short of breath, does it come quickly and more like a hit to the gut than an airway related SOB requiring inhaler? How are the palpitations? Vitamin D has been shown to help with vasodilation so take D.Watch your diet with A1C a bit high. Are you diabetic? I am always concerned with any woman who presents with atypical chest pain-angina and the tests show nothing. The bad news? Researchers are still looking at this microvascular issue and don't know any causes, in fact some types of this dysfunction showing the same symptoms are not included in this unknown dysfunction because they have underlying, discoverable disease states. So my advice to you is to be persistent; you are the one living with this and yes it's frustrating and discouraging and the treatment may have to be customized to help- no cure. I would really like to hear more from you on the heart signs; the other stuff you mentioned doesn't jump out at me as correlating to the heart, with the exception of diabetes.As for the 'head' psych stuff; you may appear to the medical community ( and family/friends) that you are 'anxiously' making up these things that can mimic GI, gallbladder and anxiety attacks BUT all those things can be relieved/diagnosed with other meds/tests but these heart microvascular spasms and dysfunction (MVD), if this is what is causing your complaints, can't be seen on routine tests! And it's a trial of different meds to get relief. You need an excellent,caring, listening heart doctor to pay attention to your signs.I am a cardiac nurse by training and was fortunate enough, although it was VERY difficult during those first years, to have doctors that knew me and that helped eliminate the "nutcase" factor but I assure you some looked at me as if I was crazy and having knowledge of the heart and what ordinary angina was, I'm sure they thought I was nuts by my descriptions but I remained clear, concise and persistent! Even when some dismissed me with a "there's nothing wrong with your heart, spasms are rare, and it's probably your gallbladder". Also the ER is not the place for concise continuity of care. Do you have a family doctor? And if this MVD is what you have then you can't change it; and as long as I have had it and along with the stupid spasms it has NOT damaged my heart! Damaged my lifestyle,given me pain,made me re-adjust my life several times, frustrates me to no end but I tend to keep it to myself and manage it as I look VERY well and feel VERY well- the less I move.Slow mornings are great and when I feel my best-the less stimulus I have, the better I am. Let me know.PS you profile states male but your narrative states female. Female, right?? Joan.

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by sheryl1024, Mar 16, 2010
Joan,
Two ideas after reading your journal. One. Have you considered Bio Identical hormones? Lack of Estrogen can bring on symptoms from what I read about this condition. Another question. Have you tried Prednisone? It is what they always give me and it seems to help alot, but I am no longer taking it due to side effects.
So sorry to hear it is worse for you lately!
Sheryl

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by Carolina03, Apr 11, 2010
Joan,

I've got the same diagnosis. Carl Pepine, MD (SHANDS, Univ. of FL) is my cardio. I'm on 400mg of Ranexa. Have you tried it? The WISE study is finding that Ranexa not only relieves the chest pain but opens the tiny vessels! Recent MRI "before" treatment with Ranexa and "after" revealed improvement for the first time, i.e., the condition may be treatable afterall!

Your progressive symptoms sounds suspiciously like diastolic failure. How high are your pressures? Do you know that you can have signs and symptoms of heart failure without an EF below 50%? Do you exercise? This is the perhaps the single most important thing you can do to feed your heart. Walk. Swim. Bike. Do whatever you can and do it on a regular basis for a minimum of 20 mins. a few days a week. Your life depends on it!

Please share the success of Ranexa with your doctor or go see Dr. Pepine in Florida. For the first time in years, I'm living almost chest pain free because of that drug and there are NO side-effects, at least none that I am aware of or experience. It's not addicting and unlike Nitro, you don't develop tolerance. As far as I am concerned, every woman and man diagnosed with coronary microvascular disease should be taking the drug. (Of course, five years from now they'll find it turns your kidneys to stone or discover some other dubious side-effect!)

My best regards,
Carolina03

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by joanincarolina, Apr 11, 2010
Carolina03,
Glad you had success with Ranexa; it did not work with me. I'd also tried Imdur without help.My pressures are normal and always have been unless I'm in an acute attack. My EF is high 60s. I just had a functional MRI at Emory in Jan. and it showed a perfect heart with no wall abnormalities. That's the good news. There is nothing, as you know to look at these tiny vessels and trying different drug combos to find the right one is crucial. Your Dr. Pepine will know my Emory doctors (Samady and Quyyumi) and me ( by a case number as Emory presents my case at conferences) as U of FL, Emory and Mayo are working together on the same NIH studies with this MVD.What works for me is nitro and cardizem. My exercise tolerance is gone as I can only do any repetitve actions ( steps, arm etc) in a minimal amount. Emory has told me that there are many variations that present with the MVD dx ( which is why I'm the odd one out) and I seem to have a problem with production of nitric oxide, but have the receptors in the single cell endothelial vessels and that's why nitro works for me. I am told that with the right combo of meds most people return to some manageable level of daily activites including exercise. But this is so severe that exercise causes spasms which can lead to heart attack.I'm happy right now to be able to do little things but the years of tennis, golf and road biking without bad habits (diet,smoking etc) has made my coronaries clear, clean large and in great shape. They say there is risk with tolerance to nitro but I need it and trials of me decreasing the doses have been very bad. I have no choice but my doctor friends tell me that there are meds, in the vasodialator class, that are about to be released. There is also a gout medicine that has been in study that looks very promising, depending on the underlying cause for the MVD.That study has closed but the results are still 'blinded' as of January 2010. I have no side effects with nitro except relief of chest pain! Thanks for the encouragement.Joan.

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by Flycaster305, Apr 29, 2010
Joan, what dose of Ranexa did you take?  I was taking 500mg x 2 daily, and still had angina, and that was upped to a gorilla dosage of 1000mg X 2 daily and that made a huge difference.  Just a thought.  I take it in combination with Coreg, 25mg X 2, a baby dose of 2.5mg of Lisinopril,, Lasix, and generic Imdur, whatever the max dose is.  I'm also taking normally Plavix, but have been off it because of a recent surgery and because of another lovely procedure coming up (colonoscopy) but injecting heparin as a bridge.  Just a thought, things have been going very well for me regarding angina.  My situation is complicated with a Moderate mitral valve leakage and also an enlarged left ventricle.  

If you were taking a small dose of Ranexa, you might try a gorilla dose.  Best wishes  

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by joanincarolina, Apr 30, 2010
I started with low dose Ranexa working up to max dose twice a day. Candy worked better. The Imdur was the same. Different combos including BP meds just dropped my BP way too low. Norvasc works at high doses the pain, a little, but the side effects ( arrythmias) just got too risky. What works consistently is nitro because Emory believes that that my body has stopped or decreased production of nitric oxide necessary for the dilation effects on the vascular system. Nitro goes right to the heart and it seems that others have a different route impact.My gorilla is nitro!
Can't wait to hear your answer re: Newfie guide.
I still think we have a long way to go learning about the CV system and if I were the patient showing in my ER time after time I'd think she was a nutcase.Colonoscopy+good drugs= no memory. Thanks.

Avatar universal
by cskitzhaber, May 20, 2010
Hi Joan,
I was referred to you by Dr. Habib Samady. I must have written your email address down wrong, because when I emailed you today, it came back undeliverable. Will you please email me at ***@**** because I would LOVE to communicate with you regarding the coronary issues and how much we may have in common in this area. Thank you so much and looking forward to chatting!
Sandy K

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by joanincarolina, Aug 25, 2010
It has been a good summer. Nothing with my meds have changed except the addition of a pain med back in May 2008 which has helped tremendously. Nothing has changed the underlying microvascular dysfunction but I can now handle an attack better and I do not have the left over tiredness and chest tightness. The feeling of another attack ends in a matter of hours. The post above; cskitzhaber, is my twin in this arena. She has confirmed everything I have been saying about the severity of this dysfunction. She too is on nitro 24/7. We now communicate regularly and it is a wonderous thing to have someone who is like me. There are degrees to this individualized MVD and the medication regime needs to be individualized to control the symptoms. Joan.

Avatar universal
by Astrogirl13, Nov 01, 2010
Hi Joan,
I came across this page in searching microvascular angina.  I was diagnosed by Dr. Pepine at U of Florida.  I was fine until I had a MI 5 years ago.  Had a cat and had normal coronaries.  I continued to have angina after the MI and had a few more caths.  During one of my hospitalizations I started doing searches and found the WISE study and Dr. Pepine.  I emailed him and he was able to set up an a ppt. After I was discharged.  I had the provocative cat and was diagnosed with endothelial dysfunction.  I have been on many different regimens including now on Ranexa (along with other Meds including Nitro pathch).  I have been experiencing shortness of breath and increasing angina with exercise which has made it difficult to exercise (thus 20 lbs. Weight gain in the past year).  I had an echo a month ago because of increasing shortness of breath and found that my EF was normal (55%) but now had some inferior wall hypokinesis and moderate mitral regurgitation.  So we are just manipulating Meds now.  Every few months I do an Internet search looking for new Meds.  Dr. Pepine is not my regular cardiologist but I was thinking of going back to see him for a second opinion to see if he had any new suggestions.  It is good to see other people with similar symptoms (not that I wish this on anybody).

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by joanincarolina, Nov 02, 2010
Astrogirl: I hate to have you in my club! This MVD and the variances in presentations between patients is miserable; what works for one doesn't work for another.Some can exercise and do well with some exertion while a flight of stairs, a good laugh, too much talking can set me off! So there is no consistent pain relief treatment and there is hell if we end up in an ER and need emergent/urgent care.My vasospasms just add to the MVD mix as I suspect you are having. I can help you with the weight gain also.
The nitro and cardizem still works for me and altho' there is talk about nitro tolerance, I am not particularly concerned for two reasons: #1. I have to have it, #2. I really haven't changed nitro comfort dosage since May 2008 and I've never gone above the resusitative dose at my arrest. And that may be just because of my underlying etiology.
I would like to share some information with you so I'm going to give you my personal electronic 'male'.This site doesn't make that easy so let's try with jjahnke with the 'at' and then follow it with mind spring ******* all those words together and see if this works. There are really no new meds beyond Ranexa for vasodialation, but I am about to start a trial med; just waiting form OK from Emory. It was their thought to give it a try. Try the 'emale' and see what happens. Joan.

Avatar universal
by Eva_C, Mar 30, 2011
Hi again Joan, and thank you for posting. I have read your journal and I am wery sorry to hear about the extent of your problems. Is nitro the best help for you at the moment or does calcium channel blockers do any good? It has been discussed if calcium channel blockers should be described to me (thogh, without a real diagnose yet). I have earlier been googling at Syndrom X, but doesn´t fully get the symtoms together with mine, but maybe I am wrong.
My problems with periodic frequent PVC:s started many years ago, when I was 32 years old. I was really fit and exercised hard. One day, when I was at my peak pulse in spinning training I got a lot of hurtful "bangs" in my chest. That was the PVC:s. Since then they have followed me. More or less all the time, but sometimes they can stay away for years and then come back. Numeorus tests showed I had both PAC:s and PVC:s. Eventually I developed runs of PAC:s and two years ago I had a non invasive EP-study that diagnosed me with EAT. Theese attacks can come several times a day, but do not bother me so much. The PVC:s on the other hand, Is wery uncomfortable and scaring, especially since I have began to have coplets (the couplets is couth on EKG), and I suspect I am having triplets and short runs of NSVT too. This has emerged in the last six months and is why I had the the recent stress test and the nuclear test. I have been on sick leave all this time and mostly in bed, thats why the physioterapists and doctors think I am deconditioned. I do get short of breath sometimes when I try to walk short distanses fast, like I could do before (even when I had frequent PVC:s in the last ten years). But I dont get chest pains. Sometimes I can have a feeling that my chest is "empty" or "feels strange", usually at rest, and then It often developes in to anxiety or even panic attacks. I also sometimes loose air when I am talking to another person and get that emty feeling in the chest. To respond to your last question: when I am emotionally upset (which I have been more or less for six months now) I am more prone to have arrythmias. And strangely now, when I try to get back in to physical shape, I get more extra systolics and runs at rest than I had before, so I am basicly back to bed again. My cardíologists (I have had several over the past 10-15 years) thinks I have scar tissue in my heart due to a previous myokarditis (I cant tell If I had one, cant remember any symtoms of that). That´s how they explain the EAT for example. If this is true, perhaps I also have scar tissue in the heart chambers, not just in the atrial. I think your idea of Symdrome X in my case is interesting, espesially due to the fact that I did have theese ST-depressions (horizontal and then upsloping) at my last two exercise tests and do have some "unspesific" ST-T-changes at rest. Earlier over the years and countless stress tests I have never had any ST-changes, this thing has shown up now. In your journal you describes syndrome X as usually presented in post menopausal women. I still have my periods and do not have much signs of them going away (maybe they get a bit more unregular now). My mother lost her periods when she was 48 and I am now 46 so you never know.
I will bring the question of Syndrom X up when I meet with the arrrythmia specialist this month. I am also referred (again) for having holter monitor, one week.
How can Symdrom X bee diagnosed? Is heart MR a possibility?
I am pretty much in a mess now, I have panic attacks frequent and have developed a low dose dependency of bensodiazepines which worsens the psyciatric symtoms.
I am so sorry to hear that your symtoms have getting worse over time. When I read about Syndrome X it seems that it poses no hazard to the patient (I hope this i true and I know you definetly are much more up to date with this than me) but still the symtomes your having sound really hard to cope with in regards to quality of life.
Thanks and take care

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by joanincarolina, Mar 30, 2011
Now I am more suspecting that you may have MVD. That 'empty' feeling with the PVCs is a perfect description. But PVCs, couplets, trigeminy, PAT, extra atrium beats or runs, altho' they feel wierd are probably not going to harm you. My point with the arrythmias, especially in the present of MVD, is soley that it is a sign of decreased O2 under cardiac demand from the affect of the constricted micros.
Yes to a CCB in sustained release dose as that drug helps keep the spasms, often associated with MVD, quiet.

Yes to an anti-aniexty drug as either a 'as needed' drug or just everyday until this gets treated and things settled down. You are not developing dependence, so get that thought out of your head; what you are doing is trying to get rid of signs and you know it helps.
All my MVD ladies agree that this MVD runs in cycles affected by cardiac demand. Anixety causes the heart to have it's vessels constrict and that gives you a tight feelign and unable to get our air thru. Anixety drugs help the brain settle down and not release those chemicals that impact the heart.

Cardiac Syndrome X is an older term and it can cause MI and stroke, altho rare. I started with just the SOB and tightness and with a history of PVCs related to nothing so I was totally very glad when I finally got on a regular dose of nitro and they all disappeared! I have break thru arrythmias when I get chest tight and over exert.

So for all my MVD ladies, nitro is in the picture as a sustained dose in patch form or just as a regular dose for those times when we get so tight and risk getting into a worse episode.

To diagnose MVD, you can go two ways but regardless of method, the result is the same: medications designed for you and your signs. One way is with a drug challenge heart cath. The other is a smart cardio doc listening to your signs and understanding the physiology behind our heart. An EP may not get it unless he has some experience....if it's not an electrical problem then the interest goes away.
We will, 99% of the time have NO heart disease in larger coronaries, no MRI will show the micros nor will any other current technology. EKGs can be either normal or abnormal, stress tests a jumbled mess as we keep beathing hard as if a cat's fur ball was blocking our airway and our heart is pounding.

Alos, it is common to use a low dose drug called Elavil at night time. This is an anti-depressant drug but used at low dose interferes with our brain feeling our heart's activity and interfering with those adrenaline strikes and releases. So, I would get on that asap along with the CCB and trial of nitro SL to see if you find improvement. It's an easy test with little risk.

MVD is very debilitating; it robs a healthy woman of her ability to continue a healthy lifestyle. Also, stay away from second hand smoke. I have lots of information and women all over the world either are referred to me by their doctors, other MVD women or find me on line. This is for no other reason than I manage this MVD very well and share things that many women do not want to even talk about. For me, having this Buddy (BFF) group has been wonderful. We hate it when we are told "Oh, you look great, you must be better" or by medical people " It's ok dear, you're just anxious". Yes, we're anxious because we are either chest tight, with chest pain, SOB when we try to climb the stairs etc.

There is no cure. A drug called Bystolic, a beta blocker (BB), has been shown to help some women.This is a newer BB. Other BB should be avoided as they tend to make the spasms worse.

I'm baking bread. Let me send this and I'll go back to re-read your post to be sure I didn't miss something. I hope you don't have this BUT, I certainly would place this diagnosis high on your list. Joan.

Avatar universal
by Eva_C, Apr 11, 2011
Hi again, I did not understand the mail adress description, but I managed to get in to the website and read some. I do´nt understand it all, but from what i interpreted MVD leads to abnormal perfusion in the heart muscle, and my nuclear test were perfectly normal. So I am still a bit confused. Another thing is that I got my arrythmia problems many years ago, at the age of 32 (I am now 46). I then was wery fit and had no trubble exercising or shortness of breath, just the palpitations. The poor exercise tolerance emerged as late as october 2010, when I was 45. And the palpitations I feel now is pretty much of the same kind I have had for 13 years, but have increased a bit. I am also diagnosed with EAT, so I know I have a problem with the electrical system. If I have MVD it must have grown out this last year and be parallell to my other electrical problems in the heart, I think. Before this year I never had any ST-changes in stress tests (I have done many over the years). But tomorrow, tuesday, I have an appointment with my doctor and will speak to him about it.

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by joanincarolina, Apr 11, 2011
Glad you got to the article. That's the problem with MVD... it is hard to use any current technology to diagnose this; most all my MVD friends have both normal and abnormal tests, have ekgs that are bad or very good and even after all my NORMAL tests, I have this in a severe manner. The most reliable test for this is a cath that uses drugs to first shut down the micros, then tests the blood flow, wait for ischemic reaction, and open up the affected vessels with another drug. This is not without risk but it is a definitive diagnosis and can only be performed at very specialized heart centers. I also had palps with exercise many years ago but they were more of a nuisance and didn't stop me. You can have concurrent electrical problems with this MVD. They do strongly believe that this MVD starts before any signs of increased arrythmias and SOB due to the 'silent' nature of the disease process. In tests they have shown that it takes up to 1 minute and 30 seconds for the results of the ischemic casade to show as a sign but for us to feel a BIG symptom, much damage has already be done. They just don't know yet but they do know that these signs need to be treated to prevent further adverse effects. So the MVD didn't "grow" but was silent. I am glad to have you listen as your story is very familiar. I have lots to share but we have to figure out the email. Can you accept phone texts? I can send you a private note with my number. I have a European call plan so it's little cost for me.I wish you the best tomorrow and look forward to hearing from you. Joan.

Avatar universal
by Eva_C, Apr 12, 2011
Hi Joan, I have been to my doctor now. He is familiar with MVD and have had patients diagnosed with this condition, but he does not think I have it. I am referred to a MRI due to the fact that I probably had a myocardititis earlier and they want to look for scarring, since I have scarring in my atria. Did you have any risk factors for CAD when you were diagnosed? I have perfect colesterol, normal BMI, low blood pressure and I don´t smoke.
Take care
Eva

Avatar universal
by Eva_C, Apr 13, 2011
Hi again, I found this article from NEJM, mayby you have read it already. It is from 2007.
http://www.nejm.org/doi/full/10.1056/NEJMra061889

Avatar universal
by artista40, May 04, 2011
Just be careful Eva_C ... It took me 6 months ot get solid word I had MVD. I had a few cardios not on board with this. Even reading tests wrong, because they were not looking for the slight signs that may be there if you only know what to see in the clouded areas or imperfections that many pass off. (keep in mind these are not easy to spot if at all it is timing when micros are closed) ALL of my other tests...and I mean ALL are normal to "harvard" and I am only 41. When this occurred I used to run 3-4 times a week and I was very fit, no family history, low BP and heart rates dipping into 40s were actually NOT a good sign like they thought... etc. Just be sure to double check and ask for copies of your medical records, is my best advice!! You can find things at times they dismiss.... even in their wording, you see their stance on the possibility of dysfunction. I believe some do not believe in its existence. I have found some articles that suggest it is not time to relay this info into clinical use as they do not know enough.... great!!! But that still means we need best treatment of symptoms don't we? They can not see a migraine but treat them!!

Best of luck. - A

Avatar universal
by SharoninBama, Jan 02, 2012
hello all...I have been diagnosed with microvasular dysfunction..I am taking Ranexa 1000 mg 2x day and Carvedilol (coreg) 12.5 mg 2x day and Isosobide MN ER 60 mg.(Imdur) 1x day. Had to have a pacemaker and defibulator put in 4 months ago. heart was working at less than 35%. Drs say that my pacemaker is working 100% of the bottom of the heart but my heart is still doing most of the work at the top of the heart..Still having check tightness alot.. can't do much of nothing without chest tightness and short of breath..No blockages, no high blood pressure , no diabetes, never smoked..have alot of lung damage due to a fungus in lungs years ago...Creatine levels are 2.03 ..they (heart doctor) is doing another heart cath on Thursday to check the pressures in the back of heart.. (I'll have to look up what all that means IF I have that... But it seems heart is getting worse.. My life has changed so much..from just this past summer I was working in yard for hours..exercising and everything...Now I can't even wash dishes without giving out and chest pressures and short of breath..Do y'all have a chatroom that y'all get together in and talk about all of this..Please let me know any good sites that will help me learn more about this..and does this diagnosis shorten life and what are the risk for heart attack during my shortness of breath and chest tightness?..these spells are several times a day even with all these heart meds...Thank you all for all the sharing of information..This has already helped me alot..SharoninBama

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by joanincarolina, Jan 02, 2012
Sorry you are here with me and a good few of friends from all over the world. This is a progressive condition and the only meds available to us are those designated for hypertension or CHF. I just returned from Emory where the Plan was to start me on a 2 week trial of 3 meds specifically meant for CHF. Again what is being confirmed, and what they are looking at you for is the diagnosis of Diastolic Dysfunction which goes on over many years to diastolic failure. We do have arrythmias but they are secondary to lack of oxygen in the heart muscle and once controlled with nitro and cardizem, that settles down. Cardizem is another drug that almost all of us take in split does during the day. Coreg was a waste for me.
The researchers are finding that with our MVD that the small vessels die off in the heart muscle causing our ventricles to stiffen. They should relax just like the atria does as it pumps thru its cycle. So now it is not so much getting the blood pumping thru but to ensure that the muscle relaxs between cycles. All of us have the typical SOB and chest tightness, sometimes with pain, from exertion or other cardiac demand.....like laughing.....and now we are starting with lower leg and foot edema and swelling thru the abdomen which really does not help the SOB. So it's diuretic time. I started on LASIX 20mg with potassium for that but I am increasing in SOB so the Emory cardio wants echo, stress echo and BNP blood test. I hope you have nitro also as this really helps to do what our heart needs....to relax so the blood will flow thru. The echo, both types are good tests in non-occulsive heart disease to measure the pressures while the heart is resting and then with the stress drug, dobutamne. The BNP test will show how much of a particular hormone is being released into the blood stream from the heart muscle; the lower the number the better it is.
This is a crazy ailment and all we can do is curtail anything that causes an exertion or cardiac demand on the heart. Those of us that tried exercise or cardiac rehab were not helped by it; just the opposite.
The risk of MI and stroke is there but low. A few of our ladies have had minor and major heart attacks from the spasms coming back from the small vessels and affecting the larger ones so stopping ANY signs of ischemia before you get that bad is important and nitro is the rescue drug to use for that situation. Long term outcomes remain up in the air. I am sure there are many ladies who without treatment have died from this. Nitro is critical along with pristine management for symptoms to decrease our risk factors.

Yes I have a small group of ladies who email and skype and share the tears and frustrations. I am the oldest in the group at 66 and apparently the most severe so all my babies watch me! :) My baby in the group is 27. Just where are you? I can't emphasize how important having a local cardio who believes you. I have a load of information to share and  the drugs you are on are ones that many of us are on, or have tried. We all respond well to nitro. I have a long 'meds tried' list too! I also was chosen to do a video documentary on my heart condition and Emory is due to release it very shortly. It will be a link access to Emory cardiology. I'll send you a personal provate message for further comments.PS This is a sucky heart ailment. Whatever your age, this is difficult both mentally and physically.

Avatar universal
by SharoninBama, Jan 07, 2012
Joan you are so right about it being sucky!! I had a heart cath this past Thursday and now I also have pulmonary hypertension...so he upped my Carvedilol (coreg) to 24mg 2x day..and continue Ranexa 1000 mg 2x day and continue Isosobide (Imdur) 60mg 1xday..I go back to him in a week and a half...lots of questions...especially prognosis...any information you can share will be so much appreciated...and I can't even load the dishwasher without having chest pressure...and short of breath...I also have been told that I do have disoltic disfunction and micro-vascular disfunction..I have COPD due to fungus (18 active places at the time they finally did an x-ray (which is a long story of many drs not listening to me) but now they are calcified but has left alot of scarring...and I have had signs of kidney function problems now also...I really want to know what is in my future ( which I know everyone is different) but would rather be prepared than not knowing!..so in your best information does people with all of this using live 3 years...10 years...15 or more...and what other signs do I need to be aware of to watch for...I do have to take nitro under the tongue usually once or twice a day..every once in a while I don't take one at all (which is a day of total rest)..can you do anything at all around the house? How long have you had it and do you also have pulmonary hypertension?...the doctor just said that this is very serious and he would talk to me more on my next visit...Is there any certain web site you recommend to learn more...I tried to reach you by the information you gave but it was a no go... is it possible to set up a chatroom so all of us could meet there? Thank you for any help you can give... oh and I am 57...and is there any certain questions that you recommend for me to ask the doctor on my next visit?  SharoninBama

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by joanincarolina, Jan 08, 2012
My first thing to ask the doctor is to be sure you are on a nitro patch. Start low dose and see how it does. All my MVD ladies respond well to nitro. The second is to have the docotr acknowledge that this is ALL about exertion and cardiac demands. Each time we cause an increase in cardiac demadn and our heart tries to open all those micros and can't, then this is about microvascular endothelial dysfunction is all about. Knowing that is imperative to keeping carfdiac demands LOW. No emotional upsets, no trying to climb stairs or doing things quick. Slow is best.
This condition, untreated can lead to MI and stroke and as this is a fairly new disease coming out of the NIH WISE studies. Researchers still have no good answers and the only meds we can use are those used for things like hypertension and congestive heart failure. The pain from having an ischemic heart leads to a quality of life decision to use pain meds.
My Emory video with Dr. Samady from Emory was just released. Please look at it and give the link to your doctor. This is manageable but life altering. I do little around the house, light dusting, laundry...not ironing...I have a handicap placard, I use a scooter as my distance to walk is very short. I just had a chair lift installed in my home. I use my scooter and visit the local heart hospital weekly to visit female patients who live with angina. This is what this MVD is like: living with severe coronary artery disease when nothing can be fixed.
I do not have pulmonary hypertension or any other medial condition but the lung getting in the picture is real as this MVD leads patients into diastolic dysfunction and failure.......so more drugs like we now take.
My saving grace is nitro and cardizem. Doctors always question my use of nitro and the amount I need as beuilding tolerance and needing more but in my case I had none before MAy 2008 when the cardiac arrest led to its use to resisitate me. Each time they tried to get me off, the deeper I would go into not breathing and developing arrythmias. So after 5 days I was discharged to home on a sub-optimal dose of nitro and it took months for me to get up to a dose that took me out of pain, SOB and extreme fatigue.
No one knows about mortality with this but NIH has plenty of post mortem exams showing blocked micro vessels in the hearts of women with sudden death and who were untreated. Treatment is only with meds and making every attempt to relax heart muscle, reduce ischemia and  decrease vasospasms. I had my first sign in 2005. The best site now is Emory and Women.org's site at *********** for great real help and information from women with this dysfunction. I have had 3 heart caths and have no CAD. I am Emory's worse patient but I really believe that there are many women who have gone undiagnosed, untreated and died. This is serious and you need to consider nitro as a patch to protect your heart further. It's no different how you get it and if you take it post event, and take it often, then consider taking it in a preventive way so you reduce the risk of an ischemic event in your heart.
http://emoryhealthcare.org/interventional-cardiology/conditions-diagnoses.html
Hugs Joan.

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by joanincarolina, Jan 08, 2012
The stars make me inspire!

Avatar universal
by SharoninBama, Jan 14, 2012
my pressures in the lungs were normal..but in the heart were elavated...I am on 25 coreg 2xday...Ranexa 1000mg 2Xday and 60 mg Imdur....I am still having several times a day alot of pressure and shortness of breath... I am taking nitro's under the tongue several times a day..it helps for awhile but then the pressure will come back...especially if I do anything ...like playing with the grandkids or laughing ..does pain meds help with having pressure everday?? please if you can send me how to chat with you or put you on facebook...or something....or if there is a chat room we can all meet in to talk....heart dr. is sending me to lung dr. to see if they can help with the lung problems...and then I go back to heart dr. to see if I am getting any better but so far I AM NOT ...PRESSURE is still scary...when it last for along time...for hours...then sometime I get relief for just a short time then the PRESSURE is back...all I have been doing is resting...I can't do anything without the PRESSURE coming back...can't walk hardly any .. can't laugh... can't load a dishwasher...not hardly anything without getting tight in chest....so please if we can chat somehow please let me know...thanks for all your help and knowledge on MVD....this really does suck!!!!!!! As active as I was I still can't believe that I have this heart problem so serious...please contact me...SharoninBama

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by joanincarolina, Jan 17, 2012
Hi' if you are taking that much sl nitro then ask about nitro patch coverage for daytime cardiac demands. Sustained nitro coverage will keep the SOB and chest tightness away as long as you continue to monitor and keep exertions low. Know at what point you can do any one thing. Then be aware that you need to stop. Listen to your heart signs.
Pain meds just decrease pain and for me that pain was a constant burning sensation under left breast area so eliminating that helped. I am also a stickler for knowing that the pain med is just masking ischemia so i am quick to treat any extra SOB or CP quickly with nitro spray which I personnly find is easier to access, has a longer shelf life and can be used without the fumbling opening the nitro bottle, getting the pill, etc etc.
Pressure decreases with sustained nitro dosing which is why when you use sl nitro you get relief but that doesn't stay in system long so of course the chest pain and pressure returns. That's ischemia. Lack of oxygen in the heart's microvessels.I'll try sending you a private message. Hugs Hang in there Joan.

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by joanincarolina, Jan 17, 2012
Sharon; are you checking my private notes to you? See both today's and Jan.08 posting to you. Joan.

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by bejoyfulalways, Jan 29, 2012
Dear Joan,
I can't believe I found this. I really thought I was fairly alone with this odd diagnosis. Thank you so much.
I am 46 and began having symptoms last March. SOB first and then chest pain and pure exhaustion. The first emergency doctor did ask "Are you sure this isn't all in your head?" AS IF anyone would make this up. Thankfully he did refer me to an excellent Cardiologist and I was diagnosed within two months. The nitro patch worked great for a few months, then not so much, they doubled my dose, great once again for a few weeks, then not so much. I presently take a Nitro pill and an aspirin each day. Most days are pretty good, as in no major pain and as long as I stay away from stairs and don’t get excited no SOB. My biggest problem is having one or two “crash” days each week. Makes it hard to plan anything and tough on the family and friends. I am grateful to now have a nice fun little flexible part time job where they totally understand my “crash days” and are just happy when I show up. On a good day I can work six hours, any more than that and the major squeezing begins.
They have tested me for every thing under the sun hoping there might also be another issue that could be fixed. It seems I am 100% perfect except for the MVD. They are scratching their heads as I have no family history, "freakily" low cholesterol, low blood pressure, don't smoke and up until recently worked out regularly, worked full time and still had energy to burn. My cardiologist feels my case may be a result of an hormonal imbalance and thinks the only treatment is hormones. A few years ago I had several PE’s (blood clots in the lung) following some minor girl surgery so sadly hormones are not an option for me.
This week I am at the place where I just received results of the latest batch of tests and everything was negative. My GP says on paper I am the healthiest person alive. I am grateful he understands I am not and is working with the Cardiologist but they are at the point where there is nothing else they can do. They just keep watching and almost waiting to see if I will get depressed. That is a bit concerning as I sure don’t want to go down that road. I will not stop looking for some treatment or “a cure” but realize I need to really think about how to positively “live” with this going forward. Any advice would be appreciated as well as I read in an email above you had some suggestions for one of the ladies on losing weight. I am shocked at the weight I have gained this past year. The Drs. both say in my case it actually doesn’t matter but I am not comfortable.
Thank you once again for all the information and encouragement you provide. It feels like a beacon in this crazy storm.
Janet

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by joanincarolina, Jan 29, 2012
Janet, so sorry that you have this also. I will sent a private message and talk about meds you should try and be on. No, this is not in our heads but it is greatly affected by what signals our brain sends out and how our heart reacts with a cardiac demand. I am very healthy too.
Did you see my Emory video that was just released? Please take a look at it: http://emoryhealthcare.org/interventional-cardiology/conditions-diagnoses.html.
I don't think this has too much to do with hormones except that it could interefere with nitric oxide manufacturing. I love nitro and do very well on it. So my thoughts are that we need the donation of nitro to get the nitric oxide that opens up our first responder, micro vessels. Without that response, we cannot have a higher level of exertion because the micros don't open and if stressed enough shut down...forever. Dr. Cannon at NIH and Dr. Oz and Garalavgia (sp) have shown and told me that they have plenty of post mortem evidence to show that this does indeed happen so treatment with the best drugs available to try, is important. Any pain means ischemia and sustained ischemia can cause damage. I look forward to talking to you and you maybe interested in a small group of ladies with whom I talk to on a regular. Stay in touch. Joan.

Avatar universal
by SharoninBama, Feb 24, 2012
Joan ...you had told Astrogirl in an earlier message that you knew how to help her with weight loss...tell me also because I have gained a good bit in the last 5-6 months of not being able to even walk very far...without having alot of pressure and sob....I go back to heart dr. this coming Wed. to get another change on meds...I am going to tell him I want the nitro spray also...I also thank you for giving Sandy my phone number..It was great talking with her...and I'm sure I will be calling her and you again...If any others want to talk to me about all this MVD please feel free to pass my number on to them,...talking with others really helps alot...there is rarely a day that goes by without taking extra nitro..but Thank God we have that to turn to...I will keep you posted on what I learn this coming week..thank you for all you do for all of us out here.... your help is sooo appreciated...THANK YOU... Sharon

Avatar universal
by SharoninBama, Feb 27, 2012
hey everyone..had a very bad week-end..Had to take alot of Nitro (sl)...pressure really bad and sob..I go back to heart dr. on Wednesday..to see what changes he will make...and I also go to PC dr..to get evaluated for scooter chair or wheel chair...for the last few days I have used 2 nitro patches, and took Imur 60 mg every night and took alot of nitro sl..any suggestions on what to get the heart dr to try next.. I am taking ranexa 1000 mg 2x day...generic for Corgeg..25 mg 2x day...generic for norvasc 5 mg 1x day..nitro patch 0.4 mg 1x day...Which I added back this weekend my Imdur and added another patch and took alot of nitro (sl)....As Joan says this really does suck...and you do wonderful is this as good as it gets  ...but if it is that is okay too...will try to do what it takes to stay on this earth alot longer..please give any suggestions y'all have......Sharon

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by joanincarolina, Feb 28, 2012
Sharon; glad you called me today and that I got back to you to before your appt. I think you are very fortunate to have this great doc who will travel with you chasing the symptoms and trying to help you with the daily management. It's is all about exertion and trying to improve our quality of life. Hugs

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by Misspriss123, Mar 06, 2012
Hello everyone-
My name is Missi and I feel so fortunate to find this support group! After 2 years of ER visits, MD visits, lots of cardiac & respiratory testing (including a heart cath) I was finally diagnosed with MVD. My symptoms started in my 40's with arrythmias during exercise, for which I was treated with a betablocker. As I approached menopause, I began having shortness of breath and chest pains with exercise. Post hysterectomy, my symptoms became worse and I am unable to wean off hormone therapy without producing chest pain. I am currently taking Ranexa three times a day and still have some mild chest discomfort upon exertion or stress.  However, since my last severe 'attack' I haven't been able to resume exercise. Right now, chores around the house trigger the pain.  I have another appointment with my Cardiologist tomorrow and hope to discuss some type of adjunct or alternative therapy. Has anyone tried EECP or hyperbaric oxygen therapy? What about Nitric Oxide supplements? Are they dangerous? I've tried using Nitroglycerin sublingual, I almost passed out & broke out in a profuse sweat- it scared me... I am learning how to live with this 'monster' and struggle to keep it at bay.  I know now how precious each day is when I feel "normal" and dread the days when I don't. I'm only 52 and otherwise very healthy. Up until a few years ago, my husband and I went snow skiing every year.  This is so debilitating!! I have a feeling that my grandmother had this, but was not diagnosed. She had several "small" heart attacks and ate Nitroglycerin like candy. The good news- she lived to age 85- gives me some hope!   have always been "cold natured" and also have Reynauds Syndrome. I feel best in a hot, hot tub of water, which also sometimes alleviates the chest pain when mild. Obviously I have circulatory issues, on a microvascular level throughout my body. I've read that many women with this issue have or had uterine and ovarian cysts- I had those too. I think what might have also exacerbated my MVD is the fact that I was anemic from years of excessive uterine bleeding (prehystectomy) and pernicious anemia. Just wondering if anyone else had this type of history? Thank you for "listening", I look forward to your responses.

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by joanincarolina, Mar 12, 2012
Hi Missi: yes I did miss this post. I've had plenty of MVD friends who had no luck with extended, expensive EECP treatments. I don't understand the value of hyperbaric oxygen as we do not have a problem with holding on to our oxygen, we have a problem getting the heart to pump that oxygen thru to our heart muscle and those tee tiny micro vessels. I can have bad attack, a cardiac arrest and my SATS are fine.
Ranexa did not work for me and neither did Imdur as they do not dilate( relax the heart muscle) my cardiac vessels enough. What does is sustained nitro by patch. I have to watch them in the humid heat here in SC but overall, they are my peace keeper. THey do not,however, give me back my old heart and allow me to do any exertions beyond certain trigger points. The diagnosis of MVD and ED means that the heart's vessels cannot open up enough to allow for a super flow of blood therefore 'exercise' is gone but now I am content to be up, showered, dressed and moving slowly.
The raymauds diagnosis in me is missing as it also is with many of the women who have MVD. They are watching this but except for the occasional blast of cold which may cool my fingers and toes a bit, it is rather a sign but not a disease as this had been common and unchanged with me in 40 years. There is a difference in Raynaud's sign and Raynauds Disease.
You should be trying low dose nitro in oatch form and allow your body to adjust to the headache or hollow head feeling. You will have to check yhour BP with that, but it is well worth the try to better your quality of life. The strong theory for me is that my body has stopped or is underproducing nitric oxide which relaxes our heart's vessels. So getting a donation of nitric oxide in the form of nitro keeps me alive. Many try, and with success, l'arginine as the pre-cursor for nitric oxide but after 9 months and huge doses it did nothing and that is the same response from many MVD women. I would caution about trying any or many supplements as they do interfere with our regular meds.
Please email me with what your doc has advised. I'll be happy to send you and her my med list and that includes all the meds tried and that failed.
This is a daily manangement disease or dyfsunction that is very debilitating and life changing. I look forward to hearing from you.....I just had a call from a friend in FL who decided that her rugs needs to be shook out.....wait for it.......yup, she quickly developed Chest pain. HUGS

Avatar universal
by SharoninBama, Mar 25, 2012
Hello Missi...My name is Sharon..My e-mail is ***@**** then I will give you my phone number...I also had cyst on ovaries..total hysterectomy many years ago..I also have pernicious anemia..diagnosised around 1993.. give myself shot every 2 weeks..I had lung damage dues to a fungus..I was diagnosised with Left Branch Bundle Blockage (LBBB) over a year or so ago..cardiomyopathy and congestive heart failure..and around Jan.2012..diagnosised with MVD...after having a pacemaker/defibulator put in last Sept. 2011. I am on Ranexa, Coreg and Diliazem, nitro patch every morning and Imdur every night..and sl nitro during day when needed..and vitamins and amtriptyline for leg pain..due to nerve damage because of pernicious anemia..was having severe chest pressure for weeks but now with ajustment of some meds not as severe on chest pressure..still SOB if I do much...but have been doing better the last week or so...this has been the best longer days since around Christmas ..hope it will last. Where do you live ..I live in Alabama and I am 57..Please feel free to contact me at any time...hope you have better days coming soon..hang in there..we are all here to help each other..Sharon

Avatar universal
by SharoninBama, Mar 26, 2012
Missi..If you are in contact with Joan she has my phone number...Hope your day has been a good one..Hang in there.Hope to hear from you soon..Sharon

Avatar universal
by BeatsBenson, May 31, 2012
Ladies I hope you don't mind me posting on this topic. I have been suffering since October 2011 with what I believe may well be MVD. The first time I actually had sharp spasm like chest pain is hard to tell as I believe I have had these pains a few times over the last few years but ignored them. However in October whilst walking up a hill I started feeling chest pain and tightness. This was enough to make me stop. This then happened again the following day but worse. I then began to feel these pains more often, particularly after meals. I had one terrible incident coming back from London on a train where I felt sweaty, lots of chest pains and thought I was having a heart attack. Visited my GP who simply gave me Omeprazole for my stomach. This did nothing apart from increase my developing SOB. One night I ended up at the ER only to be dispatched with Diltizem and more Omeprazole. They said ECG was fine. Anyway more trips to the ER and a short stay in hospital, a negative stress test, more trips to my GPs to be told this was stress. I then paid for a private CT Angio and Echo. These were both clear. More comments on stress. Put on Dilzem SR 2 x 120 and given a GTN spray. Started to improve a lot. For about 3 months symptoms were contained. Recently under new cardio had MRI perfusion for MVD diagnosis - strangely comes back clear. 2 weeks ago massive change in pain levels. Now constant chest pain with spasms. Started me on Nitrates. 20mg x 2. Can't walk to the kitchen. Even sitting up can be painful. Its hell. Still doctors are doing nothing apart from dragging their heels and no diagnosis. Its been a fight all the way to get anyone to look into this. I have clear coronaries, only 42 years old and in good health. Don't smoke or drink, not overweight. My FBG is normal and yet now I can't eat much carbs or sugar without awful headaches. Weird what someone said about ear pressure too. I have had that and tinnitus and fullness. One day before this started I actually suffered sudden sensoneural hearing loss in my left ear for no reason. That has only left me with slight hearing loss and tinnitus.

Avatar universal
by 18618, Jun 23, 2012
Hi, Joan----I lost your phone number and would like to talk with you again.  My number is 570-639-2154 (Sharon from PA)

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by myhearthurts64, Jul 25, 2012
Hi Joan, my name is Sonia from Canada,I had my diagnosis on May 25 with SVD after ruling out all other CAD acid reflux and upper GI diseases, I was given nitro sprays for chest pain, but because I was using it frequently my cardiiologist prescribed Isosorbid Dinitrate, and as of recent on 0.4 transdermal nitro, the patch is working very well for me but with the 2 combo I find it I am needing less of the spray, still haven't found a balance yet, my BP drops sometimes too low 74/44, I  too was healthy had managable fibro was exercising running a small business and fairly active with my grandchildren, from January till May of this year was going under all the testing, and your right I am not getting any better but rather worse and the only thing that takes the pain away or keep it controlled is the nitro, I have the same symptoms as you, and the only way for me to get around is with my newly bought scooter it gets me out and i like to pretend, that I am going for a walk as my routine use to be, now my arythmia is more frequent like almost @ least 4 times a week @ the early morning hrs and pain starts again till i get up by 7 am to take my meds, my cardiologist says the liver needs 10 hrs without meds now i am @ a loss as to what to do next I am 64 years of age.

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by myhearthurts64, Jul 25, 2012
btw I also posted on womenheart inspire website, any info would be appreciated I have no cholesterol no hypertension I eat very healthy, do people retain water with CCB's?

Thanks
Sonia

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