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smiles
@smiles

Posts: 3
Joined: Apr 27, 2016

Want to connect with people who have Coronary Microvascular Disease (MVD)

Posted by @smiles, Apr 27, 2016

Hi I have joined this group in the hope of connecting with people who have Microvasculer Heart Disease, other wise known as Syndrome X, I have this problem and do not know anyone else who has. There is no cure and It is not easy to treat. I am interested to find out how others cope, particularly the medications that are working for them.

REPLY

Welcome @smiles!
I’d like to introduce you to @grachilds who also has small vessel heart disease (also known as coronary microvascular disease) She talks about fatigue and heart disease in this thread https://connect.mayoclinic.org/discussion/im-an-active-57-yr-old-female-recently-diagnosed-with-small-vessel/

Smiles, how long have you been living with MVD?

Hi Colleen I have been living with this since 2008, though diagnosed with Syndrome X in 2013, when I suffered an Nstemi HA. At least it now has a name MVHD. I have been suffering from Angina on a regular basis and unfortunately even though I was on a Beta Blocker, Ace Inhibitor and also Imdur amongst other things, I had another Nstemi HA nearly 6 weeks ago. Thankfully I do not suffer from fatigue. I have a very positive out look and a determination to live my life to the fullest, I truly believe that is helping me to live with this disease. I am interested to hear from anyone who has the same diagnosis and what medication they are on and if it is working for them. I am now taking a Calcium Channel Blocker in place of the Beta Blocker, but unfortunately I am still getting angina on exertion.

Nice to get to know a bit more about you Smiles. I’m going to loop @gonefishinmt into this conversation. He also takes a calcium channel blocker. He has written quite knowledgeably about his cardiac issues and I think you’ll enjoy exchanges experiences with him.

Liked by gonefishinmt

@colleenyoung

Nice to get to know a bit more about you Smiles. I’m going to loop @gonefishinmt into this conversation. He also takes a calcium channel blocker. He has written quite knowledgeably about his cardiac issues and I think you’ll enjoy exchanges experiences with him.

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Thank you Colleen, but that thread is not the same condition as mine, nothing at all like it.

@colleenyoung

Nice to get to know a bit more about you Smiles. I’m going to loop @gonefishinmt into this conversation. He also takes a calcium channel blocker. He has written quite knowledgeably about his cardiac issues and I think you’ll enjoy exchanges experiences with him.

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@smiles: Your having started this discussion will welcome other people with MVD and Syndrome X to join in. Thank you.
In the meantime, I thought I would introduce you to Gary aka @gonefishinmt – a supportive Connect member. Even when conditions aren’t identical, we can share valuable knowledge and experience.

Hi @smiles:
I understand you are looking to connect with others who may have a similar or maybe even an identical condition as you have been living with – sounds like for quite some time. My conditions are not likely the same. In fact I had to look MVHD up to have some understanding of what that is.

As I understand MVHD from very limited on-line research and your posts, you are dealing with Microvascular Heart Disease that sometimes causes angina on exertion. Angina due to MVHD I believe is the Syndrome X (sometimes referred to as CSX) part of the package. Please let me know if I’m incorrect in any of this.

Again from what I understand about micro vascular disease in general, It typically does not lead to catastrophic acute coronary syndrome. Of course, you may be different in this respect. Angina, on the other hand, can be very debilitating. All the more so if you were to live your life in fear of precipitating an angina episode. But that doesn’t sound like you. Rather, if I caught your drift, you are living life not holding back because of your condition. Let me clarify though, you didn’t say – and I didn’t get – that you are reckless with your life. Just not willing to take a back seat to your disease.

Ok, if the above is fairly correct, then I have a glimpse into your world. Here’s a glimpse into mine. I’m a 73 y/o man suffering from a handful of conditions, none of which is life threatening. At least not if I take care of myself. But I’m a bit like you – not willing to sit back and let my conditions dictate what I can or can’t do. I have a wonderful wife of 49 years who’s more than willing to do that for me. So we bargain a bit. She doesn’t want to lose me and I don’t want to stop fly fishing, along with a few other activities. None too dangerous. I gave that stuff up years ago.

So what Are my conditions? I have permanent nerve damage in my left leg from a surgery gone bad. That has left my leg much weaker than the right making it very difficult and a bit dangerous for me to wade into strong currents to fly fish. I have painful ulcers on both legs from Lividoid Vasculopathy (LV) for which I take a number of meds, including opioids. I have serious restless leg syndrome for which I take Mirapex in ever larger doses. I’ve suffered from SVT attacks for a number of years. A cardio-physicist attempted an ablation about a year and a half ago, but was unsuccessful. He changed my blood pressure med from a beta blocker to Cartia, a calcium channel blocker. This has reduced significantly the number of SVT episodes. Because of the nerve damage and painful lesions, I’ve tried a number of meds (most very expensive) but consistent over the past nearly three years has been prednisone. Because of that innocent little drug, I’ve gained around 40 lbs in the past two years. That has caused my asthma to flare, along with the need for frequent inhalation therapy. And so on.

So now that we kind of know each other, what is my message? I can’t really give you any advice related to your conditions. But I can say this from experience: Life has many twists and turns and you can’t always see around that next turn to know what’s coming at you. You seem to have the right attitude about your conditions. I hope you extend that positive attitude to those around you who are affected by them as well. Many years ago, I spent some of my valuable time and energy wondering why I came back from a foreign war while others did not. For some things, especially ‘why me’, there simply is no explanation. Its better to accept our conditions knowing that there are others out there in much worse condition than you or I are or will ever be.

That’s not to say ignore them. You must, or your loved ones must, take good care of yourself. Be kind and humble in all things but unyielding to your conditions – never let yourself give up. If it sounds as if I’m lecturing, I’m really not. These are just the musings of an old man. If I can offer anything, its an ear now and then. Oh, and this: Don’t stop looking for solutions and people who may really be able to help you. They are out there.

Take care.

I have had chest pain off and on for years. My cardiologist says it is not heart related but doesn't seem to know about MVD microvascular heart disease in women. That is what I suspect as my worst episode was after a screaming fight with husband and at least once awoke me from a nap. Doctor wants to believe it is from my possible pancreas problems, my GERD, or my IBS. My GERD seems totally controlled unless I skip my Omeprozole, I am having my pancreas issues checked out at Mayo and I don't think it is due to IBS as it occurs when I don't have any abdominal pain. Anyone have suggestions for tests I should ask Mayo to run? Anyone with MVD and GERD, pancreas or IBS issues? I do have Afib diagnosed by 2 week monitor. My brother also has it and cardiomyopathy. I have Type II Diabetes, High BP, High cholesterol, obesity and high trigylcerides. I am chronically low on magnesium. Have floaty, foul smelling stools and chronic diarhhea with low lipase levels. I am diagnosed with chronic pancreatitis which results in low levels of things like magnesium and lipase which most GI and ER docs don't seem to know. I also have fatty liver disease that may have progressed to nonalcoholic cirrhosis Then finally this month I developed such extreme fatigue that I was sleeping 18-22 hrs a day and became too tired to chew food. I asked my primary care doc to check me for Epstein Barr which was reactivated. Now I am also wondering if I have CFS/Fibro. Yikes! Moderators or members any tests you can suggest or people who are good sources of info on MVD, women's heart issues, chronic pancreatitis, nonalcoholic cirrhosis, or Epstein Barr and CFS/Fibro. I need all the support I can get. I work hard at being a well educated, persistant advocate for my health issues. Thanks for responding, following or friending me.

Hi @aesmayo01,

I'm so glad to welcome you to Connect!
You may notice that I moved your discussion about finding others with coronary microvascular disease, and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm also tagging @soloact @cherfenn @tiny7 @swenglert @grachilds and Mentor @kariulrich who might have some more insight, as they've written about coronary microvascular disease (also called small vessel heart disease).

I'd like to invite Mentor @gman007 to join this conversation – Gary has shared some valuable experiences about coping as a diabetic with chronic pancreatitis.

@aesmayo01, you mentioned, "Anyone have suggestions for tests I should ask Mayo to run?" Could you explain/share a few more details?

I am going to Mayo Clinic Rochester MN on Sept. 19th hoping to get my heart and brain microvascular disease confirmed with a coronary reactivity test. Anyone know what they put in to test and measure reactivity? I also have had at least 2 TIA's in past 3 years with resulting short term memory loss, aphasia and dizziness and confusion. I believe I also have risk factors for an aneurysm in the most likely spot on my left temple which always feels weird whne BP is high and I have a severe headache and when I had my TIA. TIA reported by doctors when in hospital 3 years ago (they never told me or put me on blood thinners – malpractice?} and white areas lit up in weighted T2? MRI in area of frontal cortex. Also believe I have sneddon's syndrome.

@aesmayo01

I have had chest pain off and on for years. My cardiologist says it is not heart related but doesn't seem to know about MVD microvascular heart disease in women. That is what I suspect as my worst episode was after a screaming fight with husband and at least once awoke me from a nap. Doctor wants to believe it is from my possible pancreas problems, my GERD, or my IBS. My GERD seems totally controlled unless I skip my Omeprozole, I am having my pancreas issues checked out at Mayo and I don't think it is due to IBS as it occurs when I don't have any abdominal pain. Anyone have suggestions for tests I should ask Mayo to run? Anyone with MVD and GERD, pancreas or IBS issues? I do have Afib diagnosed by 2 week monitor. My brother also has it and cardiomyopathy. I have Type II Diabetes, High BP, High cholesterol, obesity and high trigylcerides. I am chronically low on magnesium. Have floaty, foul smelling stools and chronic diarhhea with low lipase levels. I am diagnosed with chronic pancreatitis which results in low levels of things like magnesium and lipase which most GI and ER docs don't seem to know. I also have fatty liver disease that may have progressed to nonalcoholic cirrhosis Then finally this month I developed such extreme fatigue that I was sleeping 18-22 hrs a day and became too tired to chew food. I asked my primary care doc to check me for Epstein Barr which was reactivated. Now I am also wondering if I have CFS/Fibro. Yikes! Moderators or members any tests you can suggest or people who are good sources of info on MVD, women's heart issues, chronic pancreatitis, nonalcoholic cirrhosis, or Epstein Barr and CFS/Fibro. I need all the support I can get. I work hard at being a well educated, persistant advocate for my health issues. Thanks for responding, following or friending me.

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Hello aesmayo01. Thank you for sharing your story. I have had many tests recently to find the cause of my fatigue, shortness, of breath and exercise intolerance. My doctor ordered a Cardiac Stress MRI to check for MVD. It did not reveal MVD. I also had a bicycle (exercse) echocardiagram. The Echo portion was normal but the EKG portion showed changes in the ST waves and very high blood pressure during peak exercise. I was told this could indicate a coronary blockage or MVD. A coronary angiogram was done to rule out major coronary blockages. I was prescribed a calcium channel blocker to treat the exercise induced hypertension. The doctor said it will also treat any pain I have from microvascular disease in the event that the tests missed it. I am reluctant to take the calcium channel blocker because my blood pressure is normal at rest. I have fluid retention in my abdomen and legs. The doctors are telling me that it is from the hypertension. I know many people with hypertension but they do not have swelling in their legs and abdomen. I appreciate your confusion and sympathize with your situation. When a patient has a complicated clinical picture some doctors want to hang their hat so to speak on something obvious even though the patient feels something much more serious is going on. This may be the reason for your doctor's lack of consideration of heart issues and blaming your symptoms on your digestive issues. Although, digestive issues can most certainly cause chest pain, it is quite telling that your chest pain came after a bout of stress. Keep searching for an answer…….I wish you the best and hope that others can share more about MVD …..especially how they were diagnosed and what specific symptoms they were experiencing. I plan to keep searching for an answer to my symptoms as well and I'll share whatever I can that may be helpful.

Hello aesmayo01. I am very interested in the coronary reactivity test you will be having for MVD. I don't know what kind of substance they will be giving you. When I had my Stress MRI I was given IV Regadenisen. I hope this test provides you with some answers and a treatment that can help you. Please keep in touch.

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