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An apparently safe, effective treatment for many with angina (including microvascular angina) and heart failure - external counterpulsation

JonathanH profile image
36 Replies

After 10 years of intermittent illness, I recently diagnosed myself as possibly having microvascular angina (MVA) and, since my local cardiologist seems not to believe in it, I did some research and found a Dr Robin Roberts (alexander-house.co.uk/index... who specialises in the disorder and offers a treatment called enhanced external counterpulsation (EECP) that seems to offer a good chance of significant improvement. The treatment involves rapid inflation and deflation of inflatable cuffs timed according to one's heart. It sounds wacky but is approved by the FDA and peer-review papers confirm that it works for many - even stimulating the production of growth factors and progenitor cells that seem to cause growth of new blood vessels. Dr Roberts agreed that I probably have MVA and I am currently negotiating a start date for treatment (35 one-hour sessions). I am really fortunate that I am able to afford EECP privately as it seems there are few NHS centres and that it is difficult to obtain the treatment on the NHS. Dr Roberts said that treatment is available for in Bradford (I live in Yorkshire) for patients who satisfy strict criteria. I also found this statement on a website eecp4all.com/faq.html:

"Q: Is the EECP® Therapy available on the NHS & covered by private insurance companies?

A: Yes. NHS approves EECP® treatments for the patients who meet the NHS Criteria. Most medical private insurance companies cover the treatment cost."

From what I read, EECP is in a majority of patients effective in treating (at least ameliorating) all types of angina and also heart failure but it looks as if it is particularly effective in treating MVA. I will report back on how my EECP works out but my current view is that anybody with MVA should fight with all their might to obtain the treatment.

This treatment seems unbelievably fantastic: non-invasive, free of serious risks, and drug-free. It won't work for everyone and, where it does work, will be more effective for some than others. But my life has been ruined these past 6 months by almost constant angina that is sometimes completely disabling, and I can't wait to start a course of EECP. Reply More

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JonathanH
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36 Replies
Kimlouise profile image
Kimlouise

Sounds really interesting Jonathan. Best of luck with the treatment, let us know how you get on. I am always curious about new treatments . If you do what you’ve always done you’ll get what you’ve always got!

Carokai profile image
Carokai

That sounds really interesting Jonathan.

I too think I have MVA. Mine is not consistent, but episodal in nature and I am struggling to get my Cardiologist to confirm and actively treat the condition.

Have you met Doctor Roberts yet? I would be really interested to know what tests he undertook to confirm your MVA. Will you be treated on the NHS and if not could I ask how expensive your course of 35 treatments will be?

I would also be interested to know if he has suggested any other forms of treatment.

Good luck and please do keep us updated.

JonathanH profile image
JonathanH in reply to Carokai

My disease is episodal too. I have had it four 10 years, with gaps between illness of from months to, at most, 4 years. The intensity varies between life-limiting and totally disabling. I also sometimes have other symptoms sometimes, including gastritis, delayed GI transit and tingling/pains in various places, especially arms and hands. I think my MVA is part of dysautonomia and I am hoping to get this investigated.

Since November, I have been having a rough time with MVA, if it is that.

I have seen Dr Roberts. My symptoms, including pretty much relentless chest pain when ill, seemed familiar to him. He did say that there was a diagnostic test I could have but that it is not completely reliable, and I decided to go straight to the treatment. I could almost have cried or danced to meet a doctor who seemed to understand my condition. The consultation cost £240.

With Dr Roberts, the treatment costs about £10,000 and I will have to stay in London Mon-Fri for about 4 weeks. It will help that I have family I can stay with.

Dr Roberts didn't suggest any other treatment. So far as I know, EECP is the sole treatment that offers the possibility of a cure (partial or total).

I will report back. There is a closed Prinzmetal angina group on Facebook with one or two positive but inconclusive reports on EECP.

Milkfairy profile image
MilkfairyHeart Star in reply to JonathanH

Jonathan there are other medical treatments though admittedly not always effective.

I live with daily frequent episodes of angina usually at night.

I am admitted to hospital from time to time for treatment with IV nitrates. I agree this is very challenging condition to live with. I was first diagnosed 6 years ago.

I use a TENS machine, yoga and meditation and a take a truly dolly mixture of pills and use oxygen.

One of the most challenging aspects was learning to live with the constant companion of pain with non judgemental acceptance. This is in no way giving up in a passive way.

Best of luck and please do tell us how you get on.

Milkfairy profile image
MilkfairyHeart Star

Hi I live with vasospastic angina. My angiogram showed I have spasms in my small and large coronary arteries. Coronary Microvascular dysfunction with Microvascular and coronary artery spasms.

I looked into EECP but as yet I have not found any really good upto date evidence and research to support its use. Prof Kaski who is a world leading expert in Microvascular angina was my Consultant before retiring. His opinion was that the treatment though potentially promising was not suitable for everyone.

In a recent Daily Mail article Dr Roberts referred to the condition as Cardiac syndrome X which is an outdated term and the BHF now uses the term Microvascular angina.

bhf.org.uk/heart-matters-ma...

Dr Robert's does not practice in the NHS, whilst winning an employment tribunal for unfair dismissal from the NHS he was not reinstated and has not been employed by the NHS for many years.

The treatment costs about £10,000. It involves daily treatment for upto 7 weeks. A lot of travelling maybe involved.

NICE at present does not support its use due to the lack of good scientific evidence which means very few CCGs will fund the treatment through a Individual funding request. An IFR has to be completed by a Consultant or GP. I spoke to Prof Kaski, my local Cardiologist and GP. None were prepared to do the arduous paper work and I didn't want them to either because it would be refused by the CCG.

I hope the treatment does work for you and you are fortunate enough to have private health insurance.

JonathanH profile image
JonathanH in reply to Milkfairy

All you say is true. I trust Dr Roberts. Also, I recognise that the treatment may fail me. I am away from home but will send you some research when I am home.

Milkfairy profile image
MilkfairyHeart Star

Thanks I would be really interested at looking at that.

The other issue is that at present Microvascular angina is very difficult to diagnose and few Cardiologists have any understanding or knowledge of Microvascular and vasospastic angina.

Without a firm diagnosis, lack of research evidence, lack of recognition from a cardiologist.....no IFR.

Kristin1812 profile image
Kristin1812Heart Star

I have microvascular disease, causing unstable angina. It’s managed with drugs, mainly nitrates. A series of angiograms has shown many smaller vessels blocked. The larger blocked vessels have been stented... 9 in all.

For me, this discussion raised lots of interest and concern. Interest that there might be some curative treatment out there, for me: : concern that claims with little scientific validity, are enticing me to spend £10K which only makes a private Cardiologist richer.

Is there any physiological explaination why inflating cuffs in a controlled way could regenerate microvascular vessels? What’s the suggested mechanism?

Also, are there any papers from peer reviewed journals you can point me to?

Many thanks .

JonathanH profile image
JonathanH in reply to Kristin1812

Kristin,

There is supportive evidence in peer-reviewed journals and I am working on this. I don't think that the data is of the highest quality (observational studies rather than double-blind trials) but I find it very encouraging).

The mechanism isn't fully known but EECP has been shown to stimulate production of some progenitor cells and growth factors.

I will post something before too long.

Jonathan

Kristin1812 profile image
Kristin1812Heart Star

Many thanks Jonathan. I will be very interested to see what you come up with. Always encouraging to see more science about anything that might help!

Keep in touch. Kristin

Milkfairy profile image
MilkfairyHeart Star

Observational studies I am afraid don't cut the mustard in the world of evidence based medicine.

Hence why NICE does not recommend its use.

There needs to be properly funded research which is scientifically robust to ensure that the treatment is effective, with minimal risks.

There is research being carried out by BHF funded researchers into Microvascular angina which will lead to hopefully more effective drug treatment targeted to each individual patient.

JonathanH profile image
JonathanH

Hello,

I understand the point about NICE. Where EECP differs from other treatments, as I see it, is that it is in some sense curative, and provides long-term improved quality of life for most patients without further treatment, except possibly for an EECP top-up.

I have started dumping into a Word document abstracts or other summaries of publications of interests plus links to them, attempting to group publications by subject matter. Ideally, what I will then do is assess the publications to provide a summary of key points. It is quite a big project. Since this messaging system doesn't allow attachments, I will in set up a new email address that I am happy to send to you on this public system and to which you can in turn email me to ask for the Word document (and those publications that I download). But that is in the future.

There is very little information specifically on EECP and microvascular angina. Indeed, it may be that the only publication specifically on the issue is Kronhaus & Lawson, Int J Cardiol. 2009 Jun 26;135(2):256-7: internationaljournalofcardi.... I have purchased a pdf of the full text.

Here are three other publications that I have most recently looked at:

researchgate.net/publicatio...

openventio.org/wp-content/u...

onlinejacc.org/content/70/1...

Most of the studies are on patients with conventional coronary artery disease who have or haven't been through a variety of interventions. Whilst it could be seen as negative that multiple patient populations have been studied creating something of a fog, I suppose, it is on the other hand encouraging that favourable results have been reported across different populations for a high percentage of patients. EECP is an authentic treatment carried out in a handful of NHS centres (including in Bradford and Barnsley) as well as in reputable US centres such as the Cleveland Clinic, Cedars-Sinai, and Mayo: it is not a con!

Jonathan

Milkfairy profile image
MilkfairyHeart Star

Thank you for the information.

I am in contact with some individuals in the US and the UK with Microvascular or vasospastic angina who have received EECP treatment.

The treatment is not necessarily curative and can require repeated treatments. The treatment is arduous and some stopped the treatment for this reason or their symptoms became worse.

So mixed reviews as they say.

A good study would have to start with an agreed diagnosis which at present would require specialist MRI scans such as recently developed in Oxford and invasive tests such as an angiogram with acytelcholine.

Next a measurable outcomes tolerance to exercise and quality of life including pain levels.

I would genuinely love to hear how you get on and more importantly your pain levels improve

JonathanH profile image
JonathanH in reply to Milkfairy

I promised to keep you in touch with the progress of my EECP: I have so far had 12.5 hours of the 35 hour treatment course and I am hugely better this week. Before the EECP started I was living with more or less constant angina and my activity was greatly restricted, which curtailed my social life along with everything else. Since yesterday morning's session, I have forgotten about being ill for extended periods of time and have been able to walk around Wimbledon and its common without being restricted by pain. (But I decided today to push myself a little further and that may be why I am experiencing slight angina while I type this). The GTN spray that has always made me feel worse before it made me feel better has thankfully been out of my life for about a week - and that feels wonderful.

In summary, EECP has been fantastic!

Because my disease has historically been episodic (though in recent months it has seemed set in for the duration), I do have to qualify this report by saying that it is possible that the EECP has coincided with a period of remission, though I remain optimistic that I will be able to resume something like a normal life.

As well as suffering microvascular angina, I seem to have a neurological condition (associated with the MVA) that causes various sensory issues, in particular tingling and other sensations in my limbs, and I am disappointed that those still afflict me - currently they arrive every evening. I am tomorrow seeing a neurologist who is specialist in autonomic and neurovascular disorders.

There is a recent and good quality publication on EECP in refractory angina patients (only one of the 50 had MVA) in the British Journal of Cardiology: bjcardio.co.uk/2018/04/the-.... This confirms earlier studies that EECP is effective.

Dr Roberts' team who are treating me say that EECP is particularly effective in MVA and that they have a response rate of close to 100% for the condition. They are currently conducting an audit of patients treated since 2011 and this should produce better stats in due course (but still not a double blind study).

Milkfairy, in an earlier message, you said: "The treatment is arduous and some stopped the treatment for this reason or their symptoms became worse". I have not found it arduous but in chatting with the team it has become apparent that some patients do find it difficult, primarily those who are particularly old, I think. (I am 60.) During the treatment, my feet become tingly (due to compression of nerves) and afterwards my calves feel somewhat stiff but these are transient issues. I asked about patients discontinuing treatment due to adverse effects, and was told that some patients find the treatment to make them feel very tired so, before the treatment has improved their condition, the patient who already feels ill with angina then feels even worse with exhaustion layered on top and feels unable to continue. The view expressed to me was that the condition of these patients would have improved if they had continued. You may have heard otherwise.

My opinion is that an MVA patient in reasonable underlying health and in his/her 60s or early 70s, would have a good chance of finding EECP very acceptable and would have a high probability of significant improvement. BUT, I don't have decent stats to substantiate my opinion. Unfortunately, of course, EECP is barely available on the NHS and that is a massive hurdle for many. With my warmest regards to you all. Jonathan

Milkfairy profile image
MilkfairyHeart Star

Hi Jonathan,

Thank for your message.

I am really pleased to hear that so far your symptoms have improved.

The research you sent from the BJC is interesting but unfortunately only one patient appeared to have non obstructive angina.

The study is retrospective and only included 50 patients.

While Dr Robin Robert's figures are helpful they would be considered to be empirical and not of robust quality for NICE to start recommending EECP.

To exclude bias, the placebo effect and other variables such as the cold in particular as a stressor and of course emotional stress and exertion, a blinded, randomised controlled study looking at exercise, mental well being , pain levels, hospital admissions, adverse events such as death, heart attacks, stroke etc, with follow ups at 1 month, 3 , 6 months and 1 year. A review at 5 years for all of the above would be a robust study.

All participants must have a confirmed diagnosis of MVA by Cardiac MRI or angiogram with acytelcholine.

Perhaps you should encourage a BHF researcher to carrying out the study!

I live with vasospastic angina in my small and large coronary blood vessels as well as neurological symptoms.

I experience sometimes debilitating pain most days worse at night and at rest which takes me into hospital in the winter for a week or so. Me and my pain have been together for 6 years now.

Microvascular angina is not well recognised or even well defined and whilst I am personally pleased you have found that you have benefited from this treatment I do not feel it is appropriate for everyone.

Your individual experience of EECP at present has been positive but until there is robust research carried out it is I feel not helpful to suggest that it is the solution for everyone.

Please do keep me updated.

I remain very interested in the outcome over the coming months.

Haitham73 profile image
Haitham73

Hi Jonathan

Hope you are doing well. I am interested to know how You are doing with EECP.

Have you seen Positive results yet.

I have MVD and CAS and things are becoming worse by the day.

I am interested to know if EECP is a solution.

Thanks

JonathanH profile image
JonathanH in reply to Haitham73

Hello,

I am 2 weeks post-treatment and it is probably too soon to come to a final conclusion. As things stand, I am more functional and more comfortable than I was but would love further improvement, in particular to get rid of unpredictable bad patches.

Before the ECP, I suffered intermittently over 10 years and then my illness became persistent in November. Symptomatically, I appear to have MVD but I have not been comprehensively tested: certainly I had a near-normal angiogram combined with ischemia showing on ECGs. I experienced "attacks", often at night that I suspected were CAS, and also chronic angina. GTN spray is not helpful, indeed the immediate effect was to make me feel worse, and this is characteristic of MVD but not CAS. My symptoms were variable: at their worst, I was disabled and barely able to make a cup of tea but on other occasions I was to a limited extent able to carry out ordinary activities, such as shopping and dog walking. I experienced permanent chest pain.

When I was undergoing the ECP, I initially became euphoric because, by the middle of week 2, I was feeling really well. Unfortunately, I experienced a pattern where I got better during each week of treatment so that I felt pretty good by Wednesday but then crashed over the weekend - usually with a Saturday night attack. After the treatment I have continued with my pre-treatment pattern of good and bad times but I have definitely (i) slept better; (ii) not been through such bad times as before, (iii) overall been much better able to carry out daily activities and my hobby of bell ringing. Nonetheless, I have rarely been free of discomfort and I have had a few bad times when I have retreated to sofa or bed and felt grotty.

My daughter and son-in-law have been to stay for the weekend and I have been very pleased that I have been able to carry out normal activities throughout the weekend, both going out (e.g. pottering around on foot) and cooking etc, despite two low periods. I would not have been able to do this before.

I do believe that EECP/ECP can work, as the studies say. One of the opportunities of an ECP course is to chat to the therapists, and I am thoroughly convinced that they (Dr Roberts et al, Alexander House, Wimbledon) have obtained impressive results with some patients and, indeed, that most patients respond though some do not. Of course, a response is probably a symptomatic improvement not a return to an asymptomatic life. However, the functionality that I have now enables me to lead something distinctly closer to normal life than before, and distinctly more comfortable - albeit I have sometimes since the treatment felt unpleasantly ill. I was told of a patient who was a female GP with MVD and who at the end of the treatment course left without a word - because, as it later transpired, she felt no better - but she was wreathed with smiles when she attended her one-month follow up because the treatment had been transformative.

I have read elsewhere that some patients have found that they have relapsed a few weeks after an ECP course and my Health-Unlocked friend Milkfairy has mentioned to me patients who have had adverse experiences. Although the reported data make clear that success is not guaranteed, I am not sure that the negative experiences come out of the reports as clearly as they might.

It seems that the response rate for ECP is generally reckoned to be 80% but Dr Roberts thinks that they have found it to be particularly effective for MCD. Dr Roberts' team is to carry out an audit of patients over the past 6 (?) years and I hope this will give a better idea of response rates for MCD patients.

I paid £250 or so for an initial consultation with Dr Roberts and £10,500 for the treatment course (I was given a 12-lead ECG and further consultation with Dr Roberts within the treatment course after I had a bad weekend). If the condition that I have experienced over the past two days is maintained, I will be glad to have been treated. However, because of repeated bad patches since I was treated, I have no confidence as to how I will feel tomorrow.

Despite my caveats, I am in fact for now converted to an ECP enthusiast.

Can I answer any more questions?

Milkfairy profile image
MilkfairyHeart Star in reply to JonathanH

Hi Jonathan,

Thanks for the update.

I am really pleased to hear that you have had some improvement to the quality of your life as your pain levels are reduced.

I hope it lasts.

I am always better in the summer warm weather and physically can do more.

CMD is a complex condition. My concern is that in order for Robin Roberts audit to be accepted he will have to be able to have an agreed diagnosis through either a cardiac MRI or angiogram with acytelcholine. Thus he has not obtained.

This is the benchmarkthat Prof Colin

Berry and his colleagues are using.

clinicaltrials.gov/ct2/show...

Antedoctal evidence does not merit much credibility in the tough world of randomised controlled trials!

The NHS is busy trying to decide which procedures, tests and surgery are not of sufficient scientific validity and cost effective.

On the list are routine angiograms for stable angina to be replaced by CT angiograms and Treadmill tests.

Without robust evidence EECP is unlikely to be funded by any CCG and I wouldn't be surprised if the centres in Bradford etc will have to work even harder to justify the use of EECP in this world of limited resources.

If you had to self fund the treatment would your expectations be different?

I feel we have to agree to disagree on this issue.

Haitham73 profile image
Haitham73 in reply to JonathanH

Thanks Jonathan for your reply. You have made think now that it might not be the miracle cure that I am trying to convince myself it is.

Since I can not afford to go private and with the very slim chance my CCG will fund the treatment in Bradford or Barnsley, I thought of getting treated abroad in Turkey.

Given your experience, I will be more prudent in my expectations.

I truly wish you see the desired improvement very soon.

keep us posted and good luck.

JonathanH profile image
JonathanH in reply to Haitham73

You are wise to modify your expectations. I wanted a miracle cure (of course I did) but the situation remains that, while I have clearly improved functionality, I still with a mixture of good and bad days, today being one of the latter. It will be premature to report back again before the end of July (2 months after treatment), in my view.

Milkfairy profile image
MilkfairyHeart Star

Hi Jonathan,

How are you getting on?

I have below copied a post that was written by someone else but I too would be interested in knowing that vulnerable individuals with this challenging condition are receiving the best evidenced based care and not being potentially mislead for the financial profit of a doctor....this would be unethical.

'For me, this discussion raised lots of interest and concern. Interest that there might be some curative treatment out there, for me: : concern that claims with little scientific validity, are enticing me to spend £10K which only makes a private Cardiologist richer.'

JonathanH profile image
JonathanH in reply to Milkfairy

Hello Milkfairy,

If you haven't done so, please read my detailed reply above to Haitham73. You will see that I am currently feeling very positive about EECP, though both my health and my emotions have been through something of a roller-coaster. However, because I have continued to have bad patches and I have encountered on the internet mention of positive results not being sustained beyond a few weeks, I do not feel confident that the improvement will necessarily been maintained. On the other hand, I recognise that I may yet improve further.

It is because of my sense of uncertainty that I have not previously volunteered an update - it seemed premature to let you have a report.

I am in complete agreement with your subjecting EECP to close enquiry as to the evidence, and, since there is I think just one study (Kronhaus) exclusively relating to MVD, there is ample room for better studies. One area where Kronhaus and many other studies is open to criticism is as to selection of subjects: we have no idea how Kronhaus's "thirty consecutive patients" were chosen and if they are representative. You will recall that my EECP was carried out at the practice of Dr Robin Roberts. He is having an audit performed of all his patients over, I think, the last 6 years and that should provide a useful overview, albeit that there is no control.

About half my treatment sessions were carried out by Dr Sebastien Roberts ("Seb"), who is a son of Robin Roberts and splits his time between doing locum A&E work for the NHS and working for his father's practice. I got to know Seb quite well by chatting to him throughout the treatment, and it became apparent that the Roberts wish to promote ECP in the UK not just for their profits but also for the benefit of patients. They would like to see ECP approved by NICE and taken up by the NHS, and one aim of the ongoing audit is to encourage movement in this direction. I confess to being biased, but I absolutely do not regard ECP as a con and absolutely do believe that the Drs. Roberts want to improve the well being of patients in the UK who could benefit from ECP.

I was told that the Roberts practice obtain good results with MVD patients and I believe it. Plainly, however, we don't have good data, and I am not clear to what extent the Roberts practice is currently well-informed as to longer term (multi-year) outcomes. I was desperate for help because I was so often disabled and that degree of disability is so far significantly reduced, which means that I have been able partially to resume my old social life whilst suffering clearly less illness and pain. But will the improvement be sustained (or more than sustained)?

I am in fact feeling so positive that I am turning over in my mind the idea of establishing an ECP patients group to lobby for the NHS to provide it.

I am very impressed by the well-informed quality of your messages on this site and, if I don't sustain an adequate level of improvement, I might want to ask you for advice about drug treatment. I have done a fair amount of reading, too often skim-reading, about MVD and EECP but I feel like a beginner in the foothills whereas you are surely in the high slopes. I can do nothing but offer you my congratulations.

With kindest regards

Jonathan

Milkfairy profile image
MilkfairyHeart Star in reply to JonathanH

Thank you for kind words regarding the quality of my responses.

I hope all conducted with respect and honesty.

I am passionate about raising the profile of this condition and with the support of the BHF and their researchers this is now beginning to happen.

I hope you continue to improve.

Please do message me in the future if you feel I would be able to help you in anyway further.

Haitham73 profile image
Haitham73 in reply to JonathanH

Hi Jonathan

How are you doing these days.

I had a stress perfusion MRI because of my debilitating symptoms and the result came back that I have hypoperfusion on a small area on the cardiac muscle due to MVD.

I am going for EECP next week.

Any advices you can give me and how do you rate your experience with EECP after a couple of months?

Thanks

JonathanH profile image
JonathanH

I am glad that you are going for EECP, as my view is that you have made the right decision. Where are you having it done? (I think I said earlier that mine was given by Dr Roberts' team in Wimbledon, now move to Southfields).

As you will gather from my positive response to your planned EECP, I am continuing to feel much better. Overall, I have got much of my old life back and have been able to resume my interests and social life (with limitations). I would summarise as saying that my life has been changed from misery to pleasure - though I am still symptomatic to varying degrees and especially am prone to bad patches and to over-activity resulting in delayed angina etc. I understand fully about debilitating symptoms and my life is a testament to the ability of EECP to be life-transforming to patients with debilitating symptoms.

I am booked in for a top-up treatment course in September and am optimistic that it will more or less complete what the first course started. (Dr Roberts told me of a patient who went into relapse after a few months but then had a round of top-up treatment, following which she has been well for 10 years). Incidentally, there is a risk that I will yet go into a permanent relapse but, since I do respond to EECP, my sense is that any relapse is likely to be treatable by further EECP.

I have on a Facebook group encountered a woman who had 50 hours of EECP without response, so it has to be said clearly that it doesn't work for everyone. However, Dr Roberts told me that he gets close to 100% response with MVD patients, but the extent and timing of response is very variable and it is certainly not unknown for an initial 35 hour course to be insufficient for optimum treatment. I had no adverse effects from the treatment and enjoyed the treatment sessions as an opportunity for interesting conversations with the therapists. However, some people do experience adverse effects, including an initial increase in angina and/or tiredness. Some people have stopped EECP because of increased angina but one EECP patient who experienced an initial worsening of symptoms said "you just have to tough it out", and did ultimately benefit. It is unknowable as to whether those who have stopped treatment because of worsening symptoms would ultimately have been improved. However, I have not encountered any report of an EECP patient being worse after a full treatment course than before the treatment.

I think that emotional management is a difficult issue. I have gone through an emotional roller-coaster as my symptoms have gone up and down, especially during the treatment course and the following two weeks. My experience was that, as you can imagine, I started the treatment full of hope. That hope became euphoric as my symptoms improved until I felt really well at the end of week 2 - but then my health crashed (temporarily) and so did my emotions. If things do not go as you would like, somehow you need both to hold onto optimism that you will feel better but also to recognise that there is a small chance that you might not. If you should recover but then relapse, remember that it is not necessarily permanent relapse since it may be that you need more than 35 hours to be restored to health.

Please do keep in touch with your progress. I have in mind starting an EECP patients' group to promote the treatment in the UK (including its acceptance by NICE) but am of the opinion that I should wait for completion of my top-up treatment and, I hope, maximal restoration of health before doing this.

I promised to post a 2-month report, and the two months is almost upon us, but I was waiting until 8th August, when I receive the results of autonomic function tests that I have just been through.

Haitham73 profile image
Haitham73 in reply to JonathanH

Thanks for the detailed response.

I am very glad you are feeling better and are able to resume close to normal life.

I have booked EECP in Istanbul Turkey as I cannot afford 10500£ in the UK.

The consultant there is my friend’s professor of cardiology. She speaks English and was trained in the UK and US.

She has more than 12 years experience in this technique and this is basically what she does day in day out. The cost there is a fraction and I get to have a holiday as well (condensed program). The consultant told me that some of her patients come back for maintenance sessions once or twice a year.

Regarding the UK there is a very professional center within the refractory angina clinic at Bradford University hospital and it is run by the NHS provided your CCG is willing to cover. The nurse specialist there informed me that they get very good results from MVD patients.

The problem really is NICE not backing up the treatment.

I have contacted EECP manufacturers and second hand providers across the world as some patients are buying their own machines now (not expensive) and I know a thing or two about this technique. I just need to give it a try myself.

I am 44 and I have young children and If I don’t act fast before the cold comes (one of my triggers) then I am worried I will lose my job.

Wish me luck. And If there is anything I can do just tell me.

Yours

Haitham

JonathanH profile image
JonathanH in reply to Haitham73

Haitham, I have to congratulate you on organising EECP in Turkey. The travel sounds daunting with MVD, and you are therefore due double congratulations.

Thank you for your information about the Bradford centre. I talked to my GP about getting individual funding for another reason and she was very negative - our CCG is in debt and I don't see them agreeing to something not approved by NICE. That is where the problem lies.

If a family member or friend is going to have a chance to observe EECP in Turkey, I am sure that between you and them you could self-administer the treatment on second hand equipment, as it isn't difficult. However, there are various pre-treatment checks that you need, particularly to ensure that you don't have an aortic aneurism - but I presume that you have been or will be going through these checks.

I do wish you luck. The statistics are on your side and you have an excellent chance of a life-enhancing outcome.

It may make no difference at all but I took two actions to support angiogenesis: I started drinking a glass of red wine a day and also taking 6g arginine a day. It is beyond question that moderate amounts of alcohol are good for the heart and I found a paper disclosing that moderate concentrations of alcohol promote angiogenesis but high concentrations inhibit ischemia-induced angiogenesis. Of course, there is a downside, which is that any amount of alcohol increases the risk of cancer and, as I recall, stroke but there is an overall benefit if you drink only a small amount. Arginine is potentially beneficial as a substrate for the production of nitric oxide but I also found a paper teaching that it is pro-angiogenic. I reason that, even if the effect of these substances is tiny, it might be enough to propel me over some critical threshold. If I am feeling energetic, I will see if I can find links to the publications that I studied.

Kindest regards

Jonathan

Ginger1971 profile image
Ginger1971

Is it me or does this sound more like an advert than someone asking or offering advice. Sorry in advance for The scepticism, but I am the same with Osteopaths and the other back treatments.....

JonathanH profile image
JonathanH in reply to Ginger1971

Ginger, I understand your scepticism but I am not selling anything or promoting voodoo medicine. I was sometimes very ill with MVD between November and April, but after 35 hours of EECP I really can live something approaching a normal life. I don't know what you are suffering from but let me assure you that MVD was for me a debilitating, painful and unpleasant illness that destroyed ordinary life: it forced me to retire early and, too often, into socially-isolated confinement at home. Night after night after night I was woken by angina that kept me awake for 1-2 hours. But now, albeit with blips, I can lead a reasonably active life: go shopping, walk the dog up hill and down dale (with limitations), participate in my hobby of bell ringing, even have an uninterrupted night's sleep. I can enjoy life again. What a beautiful change!

Of course I proselytise for EECP as a treatment for MVD: it works! (Though again I have to say that it does not seem to work for everybody but almost everybody). It is not a "complementary therapy" but has proven physiological effects, including causing molecules of VEGF (vascular endothelial growth factor) and progenitor cells to shear off the endothelium into plasma and, apparently thereby, inducing the growth of collateral blood vessels to the heart. I understand the EECP is often effective also for treating patients with "conventional" coronary artery disease and - to a lesser extent - also helps some patients with heart failure.

I have to say that my view is that there is a really important aspect of EECP that does not come out of the literature, which is that the standard course of 35 hours may not be sufficient and that patients may need one or more rounds of top-up treatment to attain or maintain adequate health. I would like anybody contemplating EECP to be aware of this.

I have no financial interest in EECP. What I do think is that it is a tragedy that there are MVD patients in this country struggling with the disease when there exists a treatment that will for perhaps over 90% of the patients hugely ameliorate their condition. After I have had my top-up treatment, I intend rolling my sleeves up to see if anything can be done to persuade NICE to approve EECP.

AJCov profile image
AJCov in reply to JonathanH

Hi JonathanH,

Was search EECP and came across your posts. Just join HealthUnlocked as there is so much to learn.

Please read my prolife story as I have stable Angina and the cardiologist want to perform a triple bypss surgery. But I have refused.

Now following Dr Bimal Chhajer (Loads of video in YouTube) on Heart problems and how to mange without surgery.

Cholesterol and Triglycerides (fats) is what we need to avoid ie Animal products and Oils/Fats. Followed this advice and I feel great.

Now planning to have EECP in India in March 2020 - 40 sitting (one per day) Total cost should be £1200

Milkfairy profile image
MilkfairyHeart Star

Well with the warm weather my symptoms are also much reduced too. The sunshine costs me nothing!

I have been able to reduce the amount of nitrates I take from 90mgs to 30mgs daily and stopped my 15mgs patches.

Sunlight is thought to be converted into nitrates by your skin.

karger.com/Article/FullText...

There is an increase of heart attacks and other cardiovascular events in the winter months.

I have so far spent at least a week in hospital in the winter months over the last 6 years.

CMD is a complex and poorly understood condition. There needs to be some really good research to demonstrate which patients will benefit from the EECP treatment . My hunce and Prof Kaski's is not vasospastic angina as the underlying mechanisms may well be different to other causes of angina with non obstructive coronary arteries.

The cold and stress are well known to make vasospastic angina worse.

Jonathon long may your pain be reduced.

I am making hay as they say until the cold weather arrives. I personally am enjoying the hot weather.

I'll keep eating the beetroot too😁

Is this the same guy?

dailymail.co.uk/news/articl...

JonathanH profile image
JonathanH

Yes!

Prada47 profile image
Prada47

Hi Jonathan,

could you provide any figures before and after treatment like BP HR and if the treatment is good for Heart Failure any EF results ?? I would be extremely interested to know if you had an MRI (stress scan) prior to and after treatment. Being a little sceptical I wonder what the Drs gross pay is for 12 months work.

Did your previous cardiologist discharge you, and do you have any indication he will take you on again ?? should you need him !!!.

Would you also please indicate who your Private Health Insurance is with, if that's not to intrusive. Wishing you good health

JonathanH profile image
JonathanH

Hello, I am sorry to be delayed in replying. I need to see if I can find some publications on ECP and HF: from the very limited data available, my recollection is that the treatment is effective only on about half of HF patients. My concern was symptomatic relief of microvascular angina and I did not have before and after MRI stress scans.

My previous local NHS cardiologist had written to the effect that his knowledge was exhausted and that he could not help me further.

I need to make a further posting about where I have got to with ECP as the outcome of a 2nd course has been disappointing, though there may be a reason for that.

Barnsley profile image
Barnsley

I don't know if this allowed or not and so I apologise in advance of not but someone mentioned years ago going to Istanbul Turkey for EECP. Does anyone have any updates on this information please?

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