Has anybody been diagnosed with Microvascular Angina?
Posted , 20 users are following.
I have had this condition for about 4 months and it is really getting on top of me. I sometimes have it all day, with tightness, pain in chest and into my neck, now have a cough. Have trips to ED with tests, but usually normal, except for stress test which I lasted for less than 1 min. They wouldn't let me continue. Had angiogram, normal. Are now on GTN tablet and spray, Diltizem and Atenolol. Have now got Morphine at home to control bad episodes. My life is very restricted, I used to be very active with walking and running, but can now do neither. Sometimes even a flight of stairs is too much. Has anybody got any suggestions?
2 likes, 110 replies
jimgem priscilla04738
Posted
I am in NZ.?
richard87134 priscilla04738
Posted
Hi Priscilla, i have microvascular angina which was caused by uncontrolled hypertension. All you say reads true unfortunately for i too was very active prior to this disease but you have to remain positive and cope as best you can, it's notorously difficult to control with medication and lost count the times i was admitted to hospital due to prolonged bouts of symptoms. You're not alone in having to deal with it
TripleJ priscilla04738
Posted
I have had this condition for going on three years.
Last year I was in hospital eight times this year i have just done
My eighth visit. I have a stent and two small blockages,
And I have had Pericarditis. There doesnt seem to be a cure.
I also have Type 1 Diabetes. I am well known in the emergency
Room. My ECG is normal and Troponin levels negative. I also take
GTN spray. Have been taking three GTN sprays then into hospital
I have just come out of hospital . I got my husband to take me in as I did not
I did not want to go via ambulance. This has ruined my life. I can
Only work 8 hours per week. Never know when it is going to happen.
richard87134 TripleJ
Posted
Hi, i was diagnosed this year with microvascular angina,it was caused by uncontrolled hypertension and damaged the small arteries and vessels leading to and from my heart. I'm on medication which doesn't seem to stop the pain but prevents a heart occuring or at least helps to surpress it. I lost my job as a result, safety critical on the railway and had to take early retirement at 44, it sucks big time but can't play the victim as is life unfortunately, i know exactly how you feel
TripleJ richard87134
Posted
Educator and I am seriously looking stopping work as I am
Unreliable. You are right we are not victims but its life.
TripleJ priscilla04738
Posted
stephen48915 priscilla04738
Posted
I have just been given this diagnosis I'm in so much pain and does effect my life as well also my GP want help with the pain they just say it's the hospitals problem not there's do you no if there is anything.good luck with your illness and hope all goes well.
michelle977 priscilla04738
Posted
It is a secret group but if you find the info page called coronary microvascular dysfunction and non obstructive
Private message annette and she will add you.
We have a lot of cardiac nurses and people who know what they are talking about. And getting the word out. As there arent many cardiologists who understand so we can tell you which ones.
Im in diagnosis phase.
patti57 priscilla04738
Posted
http://www.texasheart.org/HIC/Topics/Cond/CardiacSyndromeX.cfm
Hi Priscilla, I am. Now 57 and have been living w/MVD for 10 years. It's tough and yes the angina attacks are the worse. Mine last up to 40 min where it feels like my chest is squeezing tight and sharp intense chest pains and the feeling someone is trying to break my jaw bone in half. It took almost 8 yrs before finally being diagnosed. NO HEART TEST IS CAPABLE OF SHOWING MICROVASCULAR DISEASE! ALL the heart studies are for large coronary arteries, valves & heart muscle. There are a few tests w/altering done that can somewhat diagnose MVD. But there are specific. Meds you need to be on & you need to keep the LIQUID NITROGLYCERIN SPRAY ON YOU, Not the Pills. For one the pills have a very short shelf life and lessen in strength just after 30days. The spray has a year shelf life w/100% potency. Also if you suffer SEVERE angina attacks always take 3-5 baby aspirins just in case it would turn into a heart attack. Those aspirins can save your life! You need to get on the proper meds & chg your life style. Aviod emotional stress if at all possible. Even hrs after an emotional event or even the next day you can suffer an attack. I have never suffered an attack at the time of an event, always hrs later. Sometimes physical stress causes them but most times they occur at rest. Also get a dr to get you on IMDUR. MY DR said there are few meds for this but it's shown IMDUR lessens attacks drastically. I take 30 my daily but had to wk up to that till they settled dwn. I went from having them 4-5!times a week to maybe 10 per year! IMDUR is a timed releasen nitro pill over 12 hrs. You can only take it 1x daily b cause your body needs 12 hrs w/onso you do not become immune to it. Also pain meds, BAD IDEA GIRL!! One a good cardiologist or dr should not prescribe them for this condition or any heart condition for that matter & 2- you could be disguising pain that is actually linked to a heart attack!You need the correct meds & I hope since your posting you are on them. Chk the link I posted above. Great infon& links there in the website. Make sure you find a dr well versed on WOMENS HEART DISEASE! Thgs r different for us. Low estrogen can cause this, thyroid issues and even the history of any pregnancies plays a role here. Ex: if you had High BP or pre eclampsia during pregnancies you have a 40% greater risk for heart disease. Check for anemia, diabetes or if you are pre-diabetic which can be done by a simple blood test. Watch your cholesterol and Wgt. All these thgs have an impact on MVD. MVD has smooth plaque on the micro vessels walls vs the large coronary arteries show lumps on the wall. It's hard to diagnose these vessels just for that reason alone. But basically those vessels constrict frm carbon dioxide and limits blood flow to the heart. If you treat it you won't suffer damage. If left untreated your heart will suffer damage over a period of time and a heart attack will be inevitable. Print out articles from link above and fromMayo Clinic and even Cleveland clinic and the heart association to take yo your dr. But see to it you find a cardiologist, prefer KY female, that is well knowledged on women heart disease and MVD and MVD Angina! This is critical because not every cardiologist is well versed in MVD ( microvascular disease)! They thk if u can't see it then it doesn't exist. But you can see it in an autopsy! So it is real. Good luck and don't stop until u find a cardiologist. I went thru 4! MVD ANGINA hurts like no other! Mine can last up to 40 m where the pain is severe on the highest scale of pain and it always for me will start in my jaw, dwn my arm and to the back of my head then BAM in my chest where I grab it w/intense pain worsening w/ea step I take until I hit the floor or the nearest couch. I have nitro everywhere in my house, 1 in the car & 1 in my purse. I want it available because once it starts you can't think straight because of the pain. The meds don't take them away completely, but you will get your life back trust me. I have a rare auto immune disease and w/IMDUR & nitro spray me life with an too bad anymore .
RESEARCH! Good luck
linda89207 patti57
Posted
samuels patti57
Posted
Hi,
I was doagnosed with this around 15 - 18 years ago, you are correct in saying there is no medical test available to confirm what is going on and it takes a well versed cardiologist to make that diagnosis.
I use to be on Monodur (Imdur ) 2X daily until it was increased to the maximium dose, it did help to start with but it all returned once my body developed a resistance to it and no longer works in a severe attack if I'm having an attack near medication time, I was also told to have the GTN spray handy at all times, one in every room and in each car that I travel in, that is like lollie water to me now in a severe attack, if I was to score the GTN in preventing an attack after the first niggle it would be an 8 out of 10,
Now as the years went on the diagnosis got more interesting, I was informed that I now have Prinzmetal angina as well as the small blood vessels spasms (which as you know are naked to the human eye and even via an angiogram. I was placed on Nicorandil 2X daily above the reccommended daily dosage rate of Cardizem( Diltiazem ) currently at 600 Mg a day, it is however broken up so that I can take it twice a day, worked wonders for awhile til my body developed a tolerence to that as well. Now when I was first diagnosed with MVD my arteries were in pristine condition and had remained that way for around 6 years as I had 2-3 angio's just to keep an eye on things as I have a very weird lipid profile to which they attribute this to the MVD and the Prinzmetal Angina, it absorbs the nitric oxide in the endothelium and we all know what happens when the body can't produce enough of that........very painful spasms. Back in 2012 I had a severe attack one day and as per usual one day because I couldn't get it under control I called for an ambulance, nothing showed up on the ECG to indicate anything was wrong and was carted off to the emergency department, because I'm well know in that department they have a management plan for me,it's really a basic one, ECG and Troponin blood test, if ECG looks normal I am placed out into the waiting room, the blood tests take around 45 - 60 minutes for a result, well the results came back and a doctor with a nurse and wheelchair in tow came out to the waiting room for me, when we reached the privacy of a cubicle I was told I had suffered a above mild heart attack, in their terms they call them NSTEMI's, I was taken to the Cath Lab and they found a 60% occlusion in the RCA, left it as it was as they only call them baby blockages. I had another one in 2013, no angio done due to having one not long ago for the first NSTEMI and they all agreed that nothing would of changed blockage wise, now remember I had said my coronary arteries were in pristine condition, well I had only had an angiogram about 3 years prior just to see how things were,I eat sensibly and exercised yet still in those 3 years I suddenly go from prisitne condition to a 60 % occlussion ? now to this day all my attacks follow the same symptoms, occassionally I develop new ones and then they will disappear for a month or two (the newere symptoms). I can't differentiate if I am actually having another mild heart attack or it's just spasms therefore after 30 minutes if the attack hasn't stopped I have been instructed by my cardiologist to call for an ambulance, my attacks (severe) can last 30 minutes up to 2 hours. We use to use the GTN infusions but over time they were becoming inefficient, so the only way to get rid of the pain was morphine or endone, they are both pretty well much the same but different doctors have their opinions on cardiac pain relief, morphine is the preferred pain relief for cardiac pain but long term use like all drugs have their down falls, morphine as we all know is addictive but if used to much will rot your gut out and many other complications, I only get cannulated now if the paramedics find something on their ECG's, depending on the age and experience of the emergency doctors endone is written up for me, it may not stop the spasms but it certainly stops the pain. I now have endone prescribed for these spasm pains to try and reduce emergency department visits, up until the last couple of months it was working, circumstances have changed in my family life and it has been a very stressful situation and as you have said high emotional stress is one of the triggers.
I had another angiogram Feb 2016 and they had found 50% stenosis in the LAD and the 60% occlussion in the RCA hadn't changed, I was then put onto Perhexiline (Pexsig ) I believe only Australia and New Zealand are the only countries that use this drug today, years ago it was found to be a highly toxic drug because no one really knew how to correctly dose it, once you start on it the usual dosage rate is 50 - 200Mg daily, so the cardiologist has to use his judgement in what dose to start you on, I was started on 100mg once daily, after 4 weeks of being on Perhexiline I had to have a blood test to see what it was doing or causing any damage to the liver, etc etc, it was found 100 Mg was not of therapeutic value to me so it was bumped up to 200 Mg's a day ( 100 Mg in am and 100 Mg in evening ) when it was at working level it stopped my night time spasms, back then that's when it was the worst, night time or early hours of the morning, it for some reason had no effect on the day time spasms and to this day we can't explain why, well one possibility being my weird lipid profile, my night time / early morning spasms have returned, they started about Jan this year so this perhexiline had lasted longer than anyother of the drugs I'm on for these spasm but obviously now my body has become less responsive to the drug. They all will work, depending on the person and how fast they can metabolize the medication most MVD and Prinzmetal Angina sufferers will continue to have severe attacks due to the body becoming tolerant to them all.