male with syndrome X (MVD)

• By Artista
• Reply 3462791
• October 16, 2012 at 11:07 am
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Well! Hello!
Always wondered when we would have a male voice. I know there are more of you are out there, but you are the first to show up! I empathize with you. I can only imagine how you feel you are being treated! I know it is not very common even among the heart disease population and then of course, with men even more so uncommon. BUT with knowledge and advocacy this can change I believe. Unfortunately, as they do not know a great deal about this, we are all the pioneers of this and its treatment. So... strap in for an adventure of sorts! We are all here to support one another.

I am sorry to welcome you to this group. You will find lots of help among us who have been dealing with this for months and years. This site was a lifeline for me in the beginning of coping with this anomaly we term MVD. Cardiac Syndrome X is actually out-dated and if your physician is using that, be just a teeny bit aware, there may be new things for that one to read up about! ;) That term actually used to cover a lot of things that were non obstructive and no evidence of why the angina was present. Indeed, it is not some mystery X but smatterings of coronary spasms, endothelial dysfunction and of course our microvasculature not doing what it should. Typically we use the term MVD but it can be CMVD or Ischemic Microvascular Disease, some even use small vessel disease but that is a bit misleading as small....you can SEE, MICRO, you can not which is part of our problem.

Key to the treatment is being able to control the angina and symptoms to stay our of the ER. I am guessing by your use of AE that you are from the UK or abroad? The attitude on how to treat this does vary by where you are. There are quite a few on here who are from the UK- Scotland, England.

You are NOT being a baby. Many of us have had difficulty in family or friends or employers understanding this disease. You do need to have support in battling this. We can help, but you need physically close people to help aid you in educating the docs and be able to speak up for you if you can not. In many cases, even here where I think there is some headway in treatment and acceptance, we often come across those who believe it to be benign. I unfortunately know many who have not found this to be so. That is not to scare you- it is a reality. You are not necessarily those cases, but we all want to know possibilities so as not to also discount how we feel!

It sounds as though you need a tweaking of meds again. This is ever changing and especially in the beginning takes time to figure out your right doses. I can tell you what I take and do, but that does not mean it works for you! In general nitrates in their many forms are our BFF. People also have taken Ranexa and that seems to be almost 50/50 that it is a miracle or does nothing! I use transdermal patches along with sublingual nitrostat (not to be confused with buccals that you have available if you are in UK) and spray at will. I have even had to double shot at times and found that double the sprays for example on a very bad episode in the end had me spraying less! Seemed to knock it out. BUT this should be discussed with physician and your BP monitored.

We also seem to hit times of ups and downs as if it has its own hills and valleys. Often this can be brought on by exertion. We here, call this the Beast...and if we over exert, it is like poking it in the cage and then letting it out. If indeed the endothelial dysfunction of our cells it what it is??? And that is the best theory, our vessels are not opening well. We lack making perhaps our own nitric oxide to do this and we need donor nitro... if you over do it, you can be causing a larger deficit so-to-speak.

I have hit a smattering of things. What specifically do you want to know?

light and clarity your way
Annette

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• By Artista
• Reply 3462835
• October 16, 2012 at 11:20 am
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Oh..also- your description of how it feels inside at times? I had that A LOT in the beginning and at times still can. It felt like a kick under my ribs or sometimes I even still get a less intense bubbly feeling? It is weird! There is some speculation that is the heart making up for the lack of perfusion- sort of working harder to compensate. Mine did that a lot before any treatment especially when I laid down at night. Once i lay down I am now also not kicking up any natural production of nitric oxide, so it dips lower once that stops. Like a larger fall of the already evident deficit. Makes sense?

- A

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• By claire_r-b
• Reply 3463158
• October 16, 2012 at 12:57 pm
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Hi,

Good to see you here, I do mean that in the best possible taste! I am pretty new to this condition (my one year anniversary will be December) so I am still learning a lot. This site has been a godsend and in the very early days it was my lifeline.

There are so many knowledgeable and kind, sharing people here that always have answers to your never ending questions so never be afraid to ask, no matter how trivial or insignificant you think your question is.

Annette has (as always) covered it really well.

What part of the UK are you from? I'm in Carshalton Surrey, I've seen Prof Collins at the Royal Brompton and am soon to see Prof Kaski at St George's, just wondering who you have seen and where?

Best wishes xXx

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• By notwell
• Reply 3463341
• October 16, 2012 at 2:05 pm
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Thank you for replying, I was unsure how my post would be accepted (man in a woman’s world?).

You have answered my question Annette i.e. my meds may need tweaking? And you have said that you have had weird feelings coming from your heart and that some how makes me feel normal?

New Cross, Wolverhampton, England, which is supposed to be one of the good ones Claire. I am unsure if the cardio used Syndrome X as a cover all or as a specific e.g. MVD? When I last went at the end of September she was the third one in the heart and lung unit that I have seen and she was also the one that did my angiogram. Quotes that I can remember from either the cardio’s or the A&E doctors are: there is nothing wrong with your heart, if your lucky it’s just wind, you do not fit a drop down box on the computer, for a 54 year old your arteries are excellent so there is no heart problems, you keep pulling muscles in your chest, etc, etc. The day after the cardio suggested Syndrome X, I had an appointment with my GP and as soon as he saw the slip of paper he said ‘yes that’s what I think it is, sorry I am going to have to label you as having angina’ my gut feeling is that my GP is more up on this than the cardio! The thing that I am concerned about is being labelled unstable angina because this could have an effect on my driving licence!

Again thanks for not blasting me away for being male.

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• By Tinks60
• Reply 3463486
• October 16, 2012 at 3:05 pm
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Hi
I too am from the UK; from Poole in Dorset. I have been experiencing symptoms of MVD since April. They started as you described but unfortunately have deteriorated at a very quick pace and I struggle with controlling the pain and exhaustion. It is interesting that you have raynauds; I have had this for the last 20 years. I also suffer with Migraines which appears to be a common symptom. Over the last few years I have also been experiencing Restless leg syndrome but am not sure if this is linked. I have v low cholesterol, low BP,, BMI of 21 and all my arteries are clear. I have been in to A&E 3 times and sent home with the Doctors blaming stress etc. Finally I had an ultrasound test with dypridamole which showed abnormal blood flow and I have had a PET test back in the early days which showed that the myocardial ischemia was slightly affecting my ability to exercise. I think judging by the quick deterioration of my symptoms the PET test would show a more marked affect on my ability to exercise. I am just waiting for an MRI using adenosine which should give a greater understanding of what is going on. My cardiologist Proff Kim Greaves is really understanding as is my GP which makes all the difference. We are just trying out different cardiac drugs to see which ones work. Initially, nitrates ( Isosorbide Mononitrate) and Aspirin seemed to help for a couple of months. Then I got worse so we tried calcium channel blockers as well ( Amlodopine) and I am now taking Beta blockers(Bisoprolol Fumarate) in addition to everything else.Sadly We still have not managed to get pain and symptoms under control. Some days are better than others but I have not had a day pain free or symptom free since April and I am no longer able to work. It was all a bit daunting at first but it really does help to know that others are having similar experiences and that you are not alone and not going mad.

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• By claire_r-b
• Reply 3463500
• October 16, 2012 at 3:09 pm
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LOL, gosh, you have us ladies all wrong. I would think the majority of us would welcome you as much as any female and also be as eager to hear your story, why would you think any different?

Prof Collins is supposed to be the top man in the country for syndrome X (and that is what he calls it - when he is not simply referring to it as chest pain!!!)

Have your tried any nitrate patches? I am on 300mg Adizem XL x 1 daily, 500mg Ranexa x 2 daily, 10mg Nicorandil x 2 daily, 1 or 2 10mg Nitriderm and I double spray my GTN, anything from 5-15 times a day, I go through one tin a week. These are UK dosages, I know they often vary from the US. I'm told these are all maximum dosages I can have, nt sure if that is the same with others in the UK?

I hadn't heard or realised the driving license thing? Gotta be careful, cos to be honest (for me anyway) it is unstable angina but not unstable classic angina I guess so that might be a loophole : )

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• By claire_r-b
• Reply 3463503
• October 16, 2012 at 3:10 pm
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OOPS, also Simvastatin 20mg x 1 daily

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• By MaryLG
• Reply 3463629
• October 16, 2012 at 4:07 pm
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Hi Notwell,

Just a small note ~ my interventional cardiologist at Stanford, Jennifer Tremmel, said that anecdotally, she had 40% of men w/endothelial dysfunction/MVD in her practice, so there are more men than you know.

In the UK, the two cardiologists who deal the most with MVD (or are the most famous amongst us, and worldwide) is Professor Peter Collins and Dr. Juan Carlos Kaski. I don't believe one his more senior than the other, though I have seen much of Dr. Kaski's research online, and he has a You-Tube video, if you care to check that out.

There are some women that I have known here, that with first angio, were not diagnosed - all clear. Then upon 2nd angio (Stanford), an architecture problem was seen (myocardial bridge), and then a repair was possible, but that is a very new specialized procedure. In one particular case, the vessel was squeezed by this bridge. Remember that nitro dilates the vessel, and then exertion further dilates it during use, so that squeezing that got worse with exertion had a physiological explanation.

For other people, it might just be the nature of the particular severity of MVD that they have. Another woman here has a form of adrenal tumor that affects the pacing and intensity of the heart. I would certainly have a second opinion with your records and imaging from any procedure you have had. Sometimes things are seen by the eye that sees the "zebras" amongst the horses.

All the best to you, Mary

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• By MaryLG
• Reply 3463676
• October 16, 2012 at 4:22 pm
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Note to wife: It's not just a male problem, but the etiology is still unknown. Bottom line is that the "nest" of vessels surrounding the heart are like the little creeks and tributaries to the stream, and then the river. If the the tiniest dry up, it affects the flow and the heart. Too much of that and and the heart is in distress ~ MI, etc. There are some people whose "tiny" infarcts (MIs) are seen on cardiac MRI, long after the fact.

There is a term called "silent" ischemia. That is ischemia ([New Latin ischaemia, from Greek iskhaimos, a stopping of the blood : iskhein, to keep back; see segh- in Indo-European roots + haima, blood.] that is not recognized until it becomes PERCEPTIBLE. It's estimated that one may have 0-20 minutes of SILENT ischemia until it becomes recognized. Even silent ischemia is not a good thing. Those are termed "myocytes" - myocardial cells. We don't want to see those die off, do we? Those make up heart muscle. Death of heart muscle means heart damage. So we work to PREVENT ischemia. Some of us though, have become far too tolerant of that feeling, and it's wise to minimize it. Emotions and brain load (rushing, heat, cold, etc) all consume part of our brain margin, so that is a part of a body's "load", whether it is exertion or emotion.

It took a long while of education for my husband to "get it" with me. (He's a psychologist! too!) So please know that your husband is not being a wuss, or a baby, or unmanly. Science is starting to catch up with this phenomenon, but it's still early days. This is a nasty piece of business we deal with, unfortunately. I wish you both well ~ Mary

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• By MaryLG
• Reply 3463703
• October 16, 2012 at 4:31 pm
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Gosh, I'm sorry to add a THIRD comment, but I must. You mention Raynauds. Many women here have a combo of MVD/Raynauds or Raynauds "like", without the official diagnosis. They may also have Prinzmetals (a certain syndrome of vasospasm) that has a profile that is sort of exact, but many women here with Prinz don't fit that profile. Last but not least, some of us have a level of vasospasm with the MVD. Vasospasm is systemic. GENERALLY speaking, the class of drugs that work for this are CCBs - Calcium Channel Blockers, such as Dilatizem, though taking that WITH a beta blocker and nitro could well give too extreme of a low BP. It leads me back to my original suggestion: second opinion w/expert.

Best, Mary

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• By Artista
• Reply 3463768
• October 16, 2012 at 4:58 pm
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Good mary to send out a note to his wife. It can be so difficult to wrap our heads round this. I mean the docs even have rough time at what works for us and the nitro amount, etc.. so no wonder right?

I always wonder about the 40% and where are they? Do they fare better? I heard of one that my old classmate has seen now that he is a cardio... I should poke more about that. I am curious "notwell" as to how if any differences there may be between the sexes. It seems this hormone relationship is not something that goes across the board- it may be how we lay down the plaque or how our vessels themselves differ?? Interesting to say the least. I am just glad you asked for help. It is important to grasp the facets of this and have some common ground when it is such a difficult condition to tackle at times.

light and clarity to all-
Annette

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• By notwell
• Reply 3463856
• October 16, 2012 at 5:31 pm
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Just to fill in the blanks;

I’ve had some issues for the last few years but totally ignored them, then in January just gone I was called in to have a ‘well man’ over 40’s check up (rather late been’s as I am 54). The computer programme gave me a 1 in 3 chance of a heart attack within the next 3 years (BP 170/111, pulse 102, and I do not suffer with white coat).

Life change was made a must and Ramipril administered, my arm felt like a dart board as they took more and more blood. After 2 weeks I became a zombie thanks to the ramipril and it was changed for 5mg of Amlodapine, 2 days later I was in A&E and then the Cardiac Rapid Response Unit. And was given baby Asprin, 50mg Atenolol, 40mg Simvastatin (family lipid problem), GTN spay and stay on the 5mg Amlodapine. Within 2 weeks I was on 30mg Lansopazole because my stomach objected. I completed 88% of the stress test and had chest discomfort/pain in the second phase.

Everything was doing fine but my GP didn’t like me using GTN a couple of times a week (yes I know how much some of you use it), So he increased the Amlodapine to 10mg – things went a bit silly again; I ballooned up, and went down the same route as the ramipril. It was reduced back to 5mg, but things didn’t go back to how they were and then basically to where I started in post 1.

My business folded 5 years ago so the stress levels have been high and not every creditor as been paid yet. I cannot claim any unemployment because my wife as a decent job and I/we could do with me working but to be honest unless I go it alone what employer would put up with the uncertainty that this syndrome X dishes out. I slept for 2 hours this afternoon and all I did was have a shower! PS I don’t know about differences in the way fat/plaque sticks to what and where but I have spoken to another male and he as a similar problem in the bedroom, logically thinking it’s all to do with capillaries letting through more blood – MVD and Raynauds = double whammy! GP just said it’s par for the course.

Mary, Atenolol is a beta blocker but from what I can gather it fights against raynauds and amlodapine is the calcium blocker. Since taking the imdur (Isosorbide Mononitrate) it is noticeable that my nail beds are getting pinker (I have also read about vertical lines on the nails being a sign, I have these). With me the combination took me down to an average of 125/85 but they affected my pulse more which went from an average of 102 down to an average of 55. At the moment there seems to be no pattern and they are all over the place. The initial combination did stop me having night sweats which I understand could be part of having night vasospasm’s but they have started back up again! There seems to be so many conflicting views they it is hard to know what to believe.

Thanks each of you for your input, you are helping.

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• By Artista
• Reply 3464087 · In reply to 3463856 by notwell
• October 16, 2012 at 7:12 pm
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Good to fill in more blanks... I want to really ingest this before i reply further. I have to be with my daughter somewhere and then we have our presidential debate tonight I wish to watch. I will likely respond in the morrow. Take some deep breaths our new friend and keep searching. There is a best way for your right combo of meds and what to do. It is a matter of finding it. : ) - A

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• By sallyet
• Reply 3466735
• October 17, 2012 at 5:29 pm
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Oh at last a man who can understand our illness. It's all u think about when u find out, it's heart this drugs that and bp. I just get on with life now and don't even think about until wham it reminds me pain , cold hands and feet. Breathlessness etc, but I do live as much as possible and I don't believe anyone can understand our illness unless they have it especially as we don't look disabled......

Well lets get through winter my friends and prof kaski is amazing .......

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• By notwell
• Reply 3483042
• October 23, 2012 at 7:31 pm
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Well it took a few days and now I know what I should have done and please learn my lesson!

Last night it started again at about 9pm (pulse racing to about 115 with a top BP of 176/110) but still I was reluctant to visit A&E using the words “I’ll go if it gets any worse”.

I didn’t go to A&E but instead waited to see my GP. I got an emergency appointment with his cover because he’s on holiday, I went in and told my story while he was placing the cuff around my arm – 200/101; he just said A&E! Do not pass go do not collect £200, he reluctantly allowed me to take my car home as long as that was it and I didn’t drive to the hospital. He did put his stethoscope on my chest and said yes, A&E.

Same old, same old, at first anyway. ECG=normal (I’m even starting to make excuses for it being normal and saying sorry)BP 156/99. They were very busy and after the ECG asked me to wait in the waiting room to see a doctor; 3.5 hours later I was seen (I was not considered an emergency now)! I was having the usual tightness and lump type feeling in my chest but this was very mild.

I talked to the doctor …..cardiac syndrome x, raynaud’s, what had happened, medication etc. he went away and came back with the letter the cardiologist had written to my GP (same hospital) asked a few more questions and went away again. Everything now changed, I was no longer treated as a fake, I had a name for it and a piece of paper that said so. A nurse came and popped a GTN tablet under my tongue while another took my BP again. The Doctor came back and said that my GP should have changed my BetaBlocker not stopped them and he showed me where it said this in the letter and this is probably why my BP as gone silly. In my GP’s defence I handed him a handwritten note the day after my cardio appointment so he and I was unaware that she meant change it rather than stop the BetaBlocker. The Doctor also said that as soon as my BP was back down I would be discharged because it would serve no purpose to keep me in other than if my BP didn’t come down.

When I got to 141/88 he sent me home.

Two things have come from this 1) when you know you have to, don’t be put off even by yourself, and 2) I need to use that GTN spray at the slightest signs, the A&E Doctor was amazed that I wasn’t already! And 3) I know I said two but! get it in writing, it works wonders.

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• By Artista
• Reply 3483985
• October 24, 2012 at 4:59 am
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I was holding my breath while reading this- glad it ended up being mostly positive outcome!!! We'll take that as a progressive sign! The more of us that are treated fairly- well- just 'treated' is good- the better life and outcome all around! SO good to hear some headway with your local hospital!!!!!! :)

AND you learned the importance of treating your own symptoms ASAP! Biggest thing to do for ourselves? Avoid pain and treat it to stave off any possible damage!

Hoping today is an even better one.

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• By notwell
• Reply 3484382
• October 24, 2012 at 8:52 am
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any idea of what the GTN tablet could be? It was small and white, slow dissolving but packed a punch bigger than my spray. I did ask the nurse but she didn't know other than to check who I was before she gave it to me.

Today I am ave 124/95, so I think I can count that one as an episode. lol

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• By sandy40
• Reply 3484774
• October 24, 2012 at 10:42 am
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Hi Notwell,the tablet most likely was a Buccal Suscard,i have them,ask you GP for some.

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• By MaryLG
• Reply 3485026 · In reply to 3484382 by notwell
• October 24, 2012 at 11:59 am
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The little tablets usually are also nitro...and they do come in different strengths. I find in general, the tablets are more "blow your head off" (which I hate), but work faster. The spray is gentler and takes more time to come into effect.

Best, Mary

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• By notwell
• Reply 3499815
• October 29, 2012 at 5:40 pm
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I have had to wait until today to see my GP, his first day back after holidays and to get in that day you have to go as an emergency in a sit and wait scenario.

BUT! AHHHHHHHHHHHHHHHHHHHHHHHHHH!

I would love to use other words but I am too polite.

He must have had a rotten holiday because the first thing he said was ‘what are you doing here and why have you used the emergency system’. He had another snipe at me and I sniped at him. Without going into who said what I got the distinct feeling that it was all about money and who’s budget it comes out of. My GP was having a mardy and I told him so and that he was leaving me stuck in the middle between a griping GP and a hospital trust under fire. He somewhat apologised still wanting to know why the hospital hadn’t prescribed the extra drugs i.e. their budget. I think the poor buggers stuck in a conflict of interest trap and the pressure is on the money.

Anyway; that was the short version but one thing is very clear, my GP is a good Bull Sh*tter, I thought he know something about syndrome X, prinzemetal’s but he knows diddly squat his limit is that they are unstable forms of an angina type complaint. He thinks that what is happening to me is just a build up to an Heart attack which he thinks will happen sooner rather than later. My BP today was 180/110 and he as prescribed Perindopril 2mg (to start) and increased amdur to 60mg. Blood test in 2 weeks and back to see him in 3 to 4 weeks to review.

PS he wants me to go to A&E every time I use the GTN more than once and when it dose not completely relieve any chest pain or discomfort. I have ordered a camping bed and it is being delivered to New Cross hospital as we speak :)

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