Why no Specialist Nurse for MVA suffe... - British Heart Fou...

British Heart Foundation
19,085 members13,039 posts

Why no Specialist Nurse for MVA sufferers?

achillislander
achillislander

That is the question I put to my cardiologist at my visit on 13th December. His reply "You get a Specialist Nurse if you have had a Heart Attack and Micro Vascular Angina isn't life threatening" It certainly feels like it on occasions!

On my visit he adjusted the dose of 1 medication and stopped Bisoprolol for Diltiazem Hydrochloride, which will hopefully reduce the frquency of MVA episodes.

On Saturday 22nd December I went to my usual pharmacy to collect my repeat prescription and the pharmacist informed me that she along with my Gp had reduced my dosageof Ranalozine from 750mg bd too 500mg bd as it is contraindicated with Dialtizam and the combination can cause Arrythmia. I have been unable to contact my Gp, Cardiologist or his Secretary over the Christmas/New year period and a chat with a Specialist Nurse could have allayed any fears I have that the 16 days I have been on new medication, without reducing existing medication may have cased further damage to my heart. The stress of not knowing caused a full blown episode over the weekend.

MVA may not be life threatening but it sure is a life changing illness, for the rest of our lives. Do other MVA sufferers feel the same, having a single point of contact to answer questions would be a great help.

Sorry for the length of this post.

A Happy and Heathy New Year to all users of the forum.

26 Replies
oldestnewest

Hello Sorry I don't have in depth knowledge of MVA but I know the type of experience you mention often causes great anxiety sometimes disproportionately. As a starting point Google ' drugs checker ' This enables you to list medications and will check for drug interactions. When I looked on drugs.com it states that diltiazem may increase the blood levels and effects of ranolazine which can increase the risk of irregular heart rhythm. It does say if your Dr really thinks the 2 drugs are beneficial the dose may be reduced. It doesn't sound like any harm will have been done but if you feel unwell with irregular heart beat, shortness of breath, dizzyness seek urgent help. Remember you can also speak with a Specialist Nurse on here by calling 0300 330 3311. It's annoying and shouldn't have happened but I think GP and Pharmacist would have done more than reduce dose if they were in doubt. All the best and try not to worry if you haven't noticed any side effects

Thanks for that information Nathan53, will use google in future and the number to speak to a specialist nurse is very helpful.

I've noticed that there are a lot of posts regarding micro vascular angina. However, the vast majority seem to be about problems in having the condition diagnosed or even acknowledged. This is the first post I've seen that's about the treatment rather than diagnosis of the condition.

Do you think your MVA is receiving effective treatment?

My own MVA took over 12 months to diagnose and then it is a bit of a lottery to find the right combination and dosage of the medication which works. I am 12 months down the line and still having adjustments to my medication. Hopefully I will soon find the right ones for me. It could be investigated more to help proffesionals to recognise and treat it. As I keep being told it is not life threatening but sure as hell feels like it at times.

Milkfairy
MilkfairyHeart Star
in reply to Chappychap

Absolutely not!!!

We need more acknowledgement of the condition and funding for more research for possible treatments.

I'm sorry to hear that.

I never appreciated until recently how many people in the UK suffer with what are basically incurable conditions such as rheumatoid arthritis, multiple sclerosis, muscular dystrophy, cystic fibrosis, Parkinsons, and (increasingly and overwhelmingly) alzheimers.

Add them all together and that's probably two or three million individuals enduring chronic and often painful illnesses. It's a hidden army marching through our society.

Hidden
Hidden

Does MV mean capillary bed issue? Or might it mean that it could include small and medium vessels? Milkfairy says it has a multitude of different underlying etiologies, too. In other words, some people have other cardiac issues as well as MV dysfunction, only.

It is shrouded in mystery for sure. Delays in diagnosis? Not surprisingly in the current cardiology climate where no early detection is considered paramount in patients outcomes. Until you are "ripe" for some bypass or stenting, they leave you in the dark. To them, MV issue is "nothing". Why? Because you never needed a bypass or stents (yet). Until then, you need no nurses.

"You had a bypass now? You now have passed your test, you may enter our *I/we will help you* list, instead of "not ready yet" list. They cherry-pick patients and you'll need to meet their "criteria" as you guessed, correctly.

MV is micro vascular, the smallerr blood vessels inside the heart that are about the same diameter as a human hair. Far too small for surgical intervention. So basically what you are saying is that we have to soldier on in the dark without a light to guide our way. God bless the Nhs.

Hidden
Hidden
in reply to achillislander

It seems that different MV patients were diagnosed with different diagnostic methods/modalities. I would say if they found "ischemia" with Adenosine, you must have been severely affected. "But" some people do not respond to Adenosine and still suffer a lot.

exactly what my Cardiologist said... the arteries are so tiny that fitting a stent is impossible.. only alternative is medication

If there is coronary spasm involved ,which can happen aswell as the MVA it can cause a heart attack. Angina from spasm can feel the same as people with regular angina probably because the heart is still being starved of oxygen.

Hidden
Hidden
in reply to Moonflower76

I'm often curious (not sure if "curious" is the right word) if you had ever noticed spasms elsewhere. I often notice spasm in my hands, noticeable when I am under stress, and the colour changes. Once I'm relaxed, the colour goes back to normal. At one time, I "felt" spasm on my temple. It could be a temporal vein.

One Doppler result showed obvious stenosis in one large artery but it appears it goes back to normal when it's not constricting.

Milkfairy
MilkfairyHeart Star
in reply to Hidden

Yes you can have vasospasms else where.

Brain, eyes, kidneys and limbs.

Prof Juan Carlos Kaski informed me I have spasms in all my blood vessels.

I have, angina, migraine, Raynauds phenomenon and vision problems.

Rheumatologists use this technique to assess the microcirculation in nailbeds

ncbi.nlm.nih.gov/pmc/articl...

Moonflower76
Moonflower76
in reply to Hidden

I don't know I have been diagnosed with raynaulds aswell in the past. But the problem with my arm seems to be something called thoratic outlet syndrome ( I tested positive for that when they moved my arm and neck in different positions ) which is compression of the veins or arteries (or in my case both ) in the thoratic outlet (which is near the collar bone ) . It is not a life threatening condition in itself but it can cause complications such as anuerysms, dissections, blood clots ect.. Right now (for the past 3 months ) I can't walk 100 yards without extreme pain in my right chest and axillary and am house bound . I think I have an undiagnosed complication of thoratic outlet and its not been found or taken seriously and its all taking so long on the nhs. If it was spasm in other arteries ,I would have thought nitro would help but it doesn't ,I am on a lot of pain killers.

Milkfairy
MilkfairyHeart Star
in reply to Moonflower76

Moonflower

I am so sorry to hear about your pain too.

Pain can be so isolating.

Have you been able to get some support?

I attended a Pain Management Course and use the 'Curable' App to help me.

I also see a Psychologist.

Short acting nitrates do not help me.

IV Nitrates treat my coronary artery spasms but take days to stop my micro vessel spasms.

Nitrates tend only to be effective in 50% of those living with Microvascular angina.

I don't think my right chest pain and axillary pain is to do with MVD or spasm .Nitrates work for my angina but not for this . I think it is connected to the thoratic outlet syndrome that I tested positive for. Its complicated but I am praying that I will get answers and healing in 2019.

Milkfairy
MilkfairyHeart Star
in reply to Moonflower76

I hope so too!

Wishing you a Happy New Year and less pain in your life 2019

Thank you and Happy New Year to you too .

p.s I take ditalizem (adizem 240mg) and ranolazine (375mg) ,I never knew that combination had a bad interaction . But I have never had arrythmia as far as I know so I won't worry . Besides I am not taking 750mg but hopefully you can discuss it with your cardiologist soon.

Milkfairy
MilkfairyHeart Star

Happy New Year!!!

Yes, Vasospastic and Microvascular angina are well down the list of priorities for the NHS. Poorly recognised or understood.

Many other individuals with chronic pain and long term conditions are in the same boat.

The NHS is brilliant at providing life saving care at critical times but as we are not about to expire and ' only' our quality of life is being profoundly negatively effected there are few resources or interest directed our way.

The pain of a vasospastic and microvascular angina can be as debilitating, intense and extreme as being in labour or passing a kidney stone!

I will keep raising the awareness of this condition the best I can however can I ask everyone living with or effected by this condition to contact BHF Heart Voices and tell them your story.....

Hidden
Hidden
in reply to Milkfairy

Someone (who was a friend of mine, working in medicine) said once, doctors know these diagnostic tests cost a fortune to set it up and they need to keep investing for a newer model (but essentially it does the same thing year after year). They also invested in training technicians to operate these.

Once they are heavily invested in something, they find it hard to look for other cheaper and novel avenues to diagnose early stage / hard to recognise /minority conditions more rapidly, effectively and importantly, before the damages irretrievably occur that may cause you a list of inconvenience e.g. complications/surgery, rehab, concern for prognosis, damages in arteries in some, without a doubt. In ripe older age, who wants to endure any of that?

You would also end up with tons of medications, which may/might affect your ageing liver or kidney or both. These secondary damages can add up in a long run. The burden of the illness is certainly harder for those over 50/60/70. Something else could go wrong in the meantime. Cardiology needs to pay far more attention to what patients are saying.

Very much agree with you achillislander that it would be good to have someone to talk to who knows about MVA. I am at the stage where I'm working with a consultant privately to get the best combination of meds. I too have come off bisoprolol with a switch to diltiazem (adizem). I'm so pleased to be off bisoprolol but it's not been an easy time. I've had palpitations which made me think it was a reaction to the adizem so I stopped taking it. I had a similar thing with an earlier experimental switch to Ranexa. With the benefit of hindsight I don't think it was the adizem. So I feel it's a bit of a mess. This happened on Christmas Eve and I was unable to travel on Christmas Day to my brothers, so I spent Christmas home alone. If I could have spoken to a specialist nurse it would have made a big difference. Consultant is away for a longish break and with my GP you either have to ask for an emergency same day appointment or wait 6 weeks. So no help from either.

But I've got a lot to be thankful for. Isosorbide mononitrate seems to work well for me. I am actually enjoying exercising more!

Happy New Year to all MVA folk and everybody on the forum. I do hope 2019 will be a brighter year.

The trouble with MVA is that some health proffesionals don't understand or even acknowledge its existence. Until t is more widely understood we would appear to be on our own.

Hope you have a Happy and Healthier New Year.

To everyone who replied to my recent post, thank you for your advice and information. It is good that we have this forum to air our queries and complaints.

Happy New Year to everyone

This whole MVA thing seems to be a real lottery as to whether you're believed or not by the medical profession, I'm not believed, as I mentioned in my earlier post.

A specialist nurse could be a good idea, at least it should be someone who believes MVA exists. But....

My partner, who has relapsing remitting multiple sclerosis and has an MS Nurse Specialist since having a major relapse, 2014, which left her quadriplegic for a few weeks, and eventually wheelchair bound.

She has an appointment twice yearly, which now is only by phone. She is asked a few questions and that's about it. A letter is produced, copied to my partner, the doctor and neurologist to update them.

Any contact other than that is usually very difficult, as the nurse specialist is never in her office, and messages left can take a week for a reply. If she's on holiday, it takes longer, it's a bit frustrating.

I think the NHS needs a bit of a shake up in certain areas.

You may also like...