Hello to all my friends that have followed me over the last few weeks and the latest bad times I've had with my chest! Ending up in a French hospital.
Have seen my cardiologist who now wants to send me for another angiogram asap to check all is still clear...as we suspect it will be..If so..then he has finally concided I will need to see a specialist as it very well may turn out to verify what I'VE always suspected ( small vessel disease) or should I say Microvascular angina.....so here I am and it brings me to my 2 questions.
I started "Diltiazem " two days ago and for the last two days I've not had as bad as chest...feels really really bruised across the whole upper pecs and across especially if I breath In very deeply! Am I just having a good reaction to the tablets quickly or do you lovely people think I'm just having one of the very rare GOOD DAYS with this condition?
2nd question...is it possible to find out my calcification score when they do my angiogram again..I appreciate this is normally done by CT scan and that's what I've had in the past with a score of 172 I believe....I'm just thinking I could see how things are whether they have stabilised or got worse since my stent..so would it be possible to have a calcification score during my second angio...
Any replies as always greatly appreciated..
Guess the tablet thing is out the window because I've just had a mild attack as I message you all...typical bloody hate this😢😢
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Rob6868
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Rob, my recollection is that diltiazem kicked in after just a few days, perhaps 2-3 days. It was certainly in the order of days, not weeks. I am cautiously hopeful that you are experiencing the effect of diltiazem.
I am so so sorry, Rob. I don't know how you cope. I was really lucky in that my MVA was intermittent until I was able to retire. I am ever so familiar with waking with angina, night after night awake for hours, but I haven't had to go to work the next day.
As one of your other correspondents said on here, try other drugs. I responded (partially) to amlodipine and then added diltiazem which helped further.
Although Milkfairy is deeply sceptical, I have found ECP (external counterpulsation) to be transformative - I am currently on the way to London for a top-up - but that requires both time and money (do you have health insurance?). Notionally it is available on the NHS but it would be very difficult to obtain funding.
Thanks Jonathan. sadly no I don't have private insurance and what makes things even worse is that I'm still on probation at this job that in all truth I enjoy very much..So even with the pain I'm now dragging myself to work because I just can't afford to lose it..especially with 4 kids and one only 5years old..I'm fighting to be here for her more than myself to be frank...And to think only last March I was a gut with no chest pain...Unbelievable what's waiting around the corner isnt it.
Jonathan can I ask please not to attribute words to me?
What I have said is that there is no good robust scientific evidence to support the use of EECP. This is not just my view but NICE's view too.
In my personal communication with 2 leading specialists into Vasospastic and Microvascular angina they indicate it may help some patients with confirmed Microvascular angina but not those with vasomotion disorders causing their Vasospastic and Microvascular angina.
Which is why it is difficult to obtain a Individual Funding Request from a CCG to pay for the treatment.
Each IFR goes to an independent committee to review and they look at the evidence before agreeing to funding.
I feel strongly that the NHS should only use its valuable resources on treatments that have been shown to be safe and effective.
I say this as an individual who is greatly effected by vasospastic and Microvascular angina. I live with a great deal of pain in my life too.
A course of EECP costs approx £ 10, 000 and requires daily treatments upto 7 weeks.
I note you continue to require continuing treatments.
As I said before I am personally pleased that you have found ECCP has helped you. However more research is required before it can be said to be an appropriate treatment for others.
I am sorry Milkfairy: all that you say is very reasonable and I will indeed refrain from making false attributions. As you know, I am very impressed by your knowledge and sound advice, and don't wish to undermine you in any way.
What some clever Cardiologists can do when they perform an angiogram is a Fraction Flow reserve. It looks how well the blood flows through your blood vessels. It is another way of telling if blockages are causing problems.
It is usually performed at larger heart attack centres.
I would suggest patience with the Diltaziem. It may need to be increased overtime. Also some people find extended or slow release tablets work better.
There is sadly no magic wand.....I wish 😫 even if we feel we are unicorns 🦄 living in fairy land🧚♂️
It can take time for your blood vessels to relax enough to stop twitching.
I take both Diltiazem and Isosorbide mononitrate extended release tablets.
All care is offered and what is the reason why this change has been suggested?
Whenever I change tablets I do it slowly . I decrease one whilst slowly increasing the other. It takes a couple of weeks.
I never just stop one and replace it with the other.
I had a trial of Candersartin last year, I only took 2mgs and cut my Amlodopine by half. I had my BP closely monitored by a hospital ambulatory BP machine at home. BP crashed after 24 hours. So back to my normal regime.
I suggest you monitor your BP and do the change gradually when you don't have too many other commitments.
Hi Milkfairy it's 1.50am and I up and have just endured 45mins of constant pain waking me at 1am...starting on left side of upper back then left arm and the usual chest.
It's now wiped me out..Another night of No sleep! This really is just ridiculous! How I'm supposed to continue to hold a job down like this especially as I've got to be up at 5am..nitemare
First of all the Cardiologist needs to know what's going on in the blood vessels of your heart.
Are you able to get hold of your Cardiologist?
Pain at rest and at night is significant.
Perhaps ask him to seek advice from the Consultant at Kings or even the other experts in Vasospastic and Microvascular angina.
I am on a long list of medications so there is a lot more that can be done for you medication wise.
Another thought the reason I end up going into hospital is that I need a respite from the pain. After a while the lack of sleep gets to me.
I am given I V GTN and morphine and I then sleep a proper deep sleep which restores my resilience.
This is something you could discuss with your Cardiologist. I am not sure they really understand how severe and debilitating vasospastic or Microvascular angina can be.
The uncertainty can also make you feel anxious.
I found once I knew the reason for my pain, I felt validated and finally believed. There is a reason for my pain which helps me manage better.
I wish we could all make this journey of yours easier!
Thank you Milkfairy I thought you were coming on to tell me off or something 😂😂😁 But it's so life impacting. I've had no sleep and I'm off to work at 6pm till early hours
I know I'm going to take another hit with this condition when I get home..I'm completely at a loss as to why it would get so so much worse after my angiogram and stent? it was nothing like this pre stent! I genuinely feel I've gone 1 step forward and 3 back..and now a battle on my hands to deal with this..Your sorted right about the anxiety. I pretty much live on a knife edge now waiting for thay first sign..Just went to my little girls school to watch her run for red nose day..all OK..then wind got up and I knew what was coming. And it did..bang instant pain for about 10mins..thankfully I had my partner with me..now home shattered and have an evening of work to look forward to..It's definitely debilitating like you said..It's just haven't a clue about the future now..Everytime I go to bed the worry sets in...It's think.i definitely need to ask more questions before angiogram Milkfairy..I'm on 60mg twice daily..it seems like it's working and I feel a bit worse for wear..must be side effects? then as time goes on the pain seems to creep through and the dread creeps in..I'm taking on at 6.30pm ish and another the same time in the morning but haven't been told if there slow release or not? patches sound like a better idea
I've just looked into FFR Milkfairy but I don't see how that would make alot of differnce to me? Am I being stupid? please say it's fine😊 But won't they see as much doing the angiogram as they would doing a FFR ? or are you saying they can do the FFR and that's less invasive and quicker and will tell them whether I need a complete angiogram or not? Sorry I'm not explaining it very well...lack of sleep..had a late finish from work last night and worrying news about my beautiful dog who has always been there for me.After everything I've now had to have her looked at for suspected cancer...seriously it's just don't get a break...she's been my rock for 6years..and I don't know how I will cope if she's not well on top of my problems
Hi , glad to have news of you. I've been on dilitizem for small vessel angina and the info does say it can take up to two weeks for it to have noticeable effects.
What strength are you on? I started on 90, was raised to 120 b.d, but that was bit to strong for me. But at least there are options. I've just had about ten really good days and then not so good. I find it really hard to understand and know quite what affects me and what helps.
Thank you for your Reply! I'm currently awake at this ungodly hour due to another attack that has so far lasted over 45mins..and has now kept me wide awake into the early hours..I need some serious relief from this..
Hi Rob,
I have microvessel angina caused by spasm and diagnosed by a specialist coronary angiogram with acetylcholine infusion as part of a clinical trial.
I don’t have any cardiac risk factors, my BP and pulse are usually quite low, good diet, walk every day etc, mine is probably secondary to my rare, auto immune disease.
I have had problems getting a medication that worked for me, I have tried verapamil, amlodipine and isosorbide mononitrate. I take a very small dose of nebivolol ( cardio selective beta blocker ), aspirin and atorvastatin. After a recent admission for chest pain an acute care Consultant suggested I tried Nicorandil, so far it’s been fairly effective. It’s a second line drug so usually you need to try all the others first, when I did some research it appears that there is some evidence to back up it’s use in MVA, although mainly the treatment of MVA is an evidence free zone!
I hope you get some relief from your symptoms soon, would they consider doing an MRI or PET scan instead of another angio?
• in reply to
An overview of meds in MVA, good article but very technical!
Sadly I've just been left exhausted by another attack lasting over 45mins without a real break from the pain..Bit concerned as I know it's particularly not good in the small hours! So getting to point of calling ambulance now! Just want a break from this..I'm shattered.😣
I've actually had an MRI profusion scan last July and that came back very good..but then I'm on the understanding it's more for blood flow than anything else? I've now had 3 echo grams in total and last one in france last week..I am willing to have the angiogram but a little sceptical at what they think there suddenly going to find? Nothing is my answer..
That’s my concern too Rob, if they don’t do a specialist angio to look for MVA then a “ normal “ angio won’t show it.
Perhaps that’s the question that needs asked, will the angio change my treatment, what are you looking for and can you use another method to find that?
Hi Rob6868, I was worried when you went silent after France, glad your back but here you go again. Wishing you could at least have a couple of pain free days mate.
Thank you so much for your kind thoughts Healthyheart1...it means so much to me..I just cannot believe how in under one year my life has been turned upside down..I was doing groundwork in the freezing cold no problem. Now I can't walk out the door in a breeze. So upsetting
"2nd question...is it possible to find out my calcification score when they do my angiogram again..I appreciate this is normally done by CT scan and that's what I've had in the past with a score of 172 I believe....I'm just thinking I could see how things are whether they have stabilised or got worse since my stent..so would it be possible to have a calcification score during my second angio..."
My understanding is an angiogram will not give you a calcification score, at least not in the sense of a quantified result that can be directly compared with your previous CT scan. It's a shame as I completely agree with what you're trying to achieve, a series of quantified scores over time allowing you to measure the progress of your heart disease and how effectively lifestyle and medication are controlling it.
Another route to the same objective is with series of ultra sound scans of the carotid arteries in the neck. These also give a quantified calcification score but they're a lot cheaper and less invasive than an angiogram, and unlike a CT scan there's no radiation involved so it's safe to have multiple tests.
if angiogram is done this is gold standard and supersedes any Calcification score done in past . In general CAC > 500 , stress test or angiogram is adopted as risk perception is high
Normally CAC is not for high risk cases . If you have angiogram scheduled that means your cardiologist assesed you as high risk and hence you should go for it . CAC is recommended for low risk cases and angiogram is not required for these cases .
I understand that. I complained of chest pain last year and I was then given a CT scan that showed the blockage and was also told my CAC score at the same time.I was then booked in for the angiogram. That was last May..since then my pain has got worse. After much debate and frustration I'm now booked in for a second angiogram very soon to check all is well..If it is? as suspected. Then it will confirm what I've always said and what my cardiologist is now agreeing with...that I have Microvascular angina. I was simply asking if they could perhaps do another CAC score while I have this second angiogram to see if my plaque has got worse or stabilised.
The Rivers hospital in sawbridgeworth quoted me £225 for a CAC scan, but then couldn't do me for a calcium score as I had a triple bypass last year. (I had a CA score of 1839 earlier) I saw, but did not read, a NICE reference to a study on Carorid Artery thickness scans that raised doubts about its efficacy. I want to look at it again and will try to pass you what I learn.
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