Chest pains and palpitations - Fibromyalgia Acti...

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Chest pains and palpitations

wolfiejp
wolfiejp

Hi all Please forgive me if i much this up but you know what fibro-fog is like so please bear with me.

Ok lets start at the beginning, about 20 months ago I was sitting down watching TV when all of a sudden i had several sharp pains just to the left of my centre chest and then they stopped but i was left feeling weak and was sweating a lot, this happened a few more times over the next few hours each time it felt worse and the length of the attack was longer and now with breathlessness so thought i was about to have a heart attack and dialled 999, the paramedics thought i was having a HA as well so was most confused by the time i got to hospital all was well again with me, i didn't have another attack that day, and my blood results to see if i had had a Heart attack was negative.

Ok since then i have had 100's of these attacks, sometimes i just feel a thud in my chest and break out in to a sweat for a few minutes then all settles down again, Other times its just shear hell. and goes on for hours once after the other, I get 5 or 6 stabbing pains always in the same place, nearly always within rhythm of my heart beat and then i break out in a sweat can start feeling sick and a crushing/tightness in my chest, in the past 20+ months ive felt like i was about to die 30 or so times " sorry im really not being dramatic here " it really does make me feel very unwell, and the fatigue after these attacks is on a new level from the fibro fatigue.

I've had 3 lots of the blood test to see if it was a heart attack and each time it has come back negative, i had a Cat scan last month which should i have up to a 70% blocked LAD, but the heart dr does not feel that should be giving me my symptoms, I've also had a 48 hour holter which showed a few missed beats but nothing more And my blood pressure will go up to 165/111 which i know is not massively high but still higher then normal for me and only goes up during an attack once the attack is over my pulse rate and BP goes back to normal, during these attacks my pulse would raise 120+.

We cannot find anything that triggers these attacks, sometimes i can go 2 or 3 weeks with out any issues and then all of a sudden "like now" im just having one attack after another.

I'm really at the end of my tether and need to get on top of this now, been so long and its taking a massive toll on myself and my family as we never know how im going to be from one second to the next.

No doubt ive missed something out but the post is getting longer then i wished it to be im just desperate now. Please if you have made it this far and have questions fire away.

Many thanks

wolfie

53 Replies
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Dizzytwo
DizzytwoModerator

Hi there, nice to meet you :) you never said if you have fibro. I only ask because we are a fibromyalgia forum. Though you are very welcome. Unfortunately no one here is medically qualified to answer your question.

But from my own personal experience you describe a typical panic attack IMO. These attacks can always make you feel like your having an heartattack or in my case choking and unable to breath. Obviously all this would raise your blood pressure. At such times mine runs so high they can't even take it because it cause me too much pain.

I would advise you to talk to your GP. Panic /anxiety can be helped.

Momo

PS I see you have left your post unlocked to this community only. Most members prefer to reply to locked posts for privacy reasons x

Hi yes i have fibro 18+ years now. I understand no one here could give me qualified medical advice but it was more a punch in the dark encase anyone else had come across something like ive been having.

I've been trying to get my head around Anxiety, i agree that most if not all my symptoms can look like a panic/anxiety attack, but im not convinced, day to day while im not having attacks i can be happy as a dog with two tales, the only stress im under is this new health issue and when it all started last year I was in a really good place mentality and was feeling good in general and then all of a sudden out the blue all this happened,

cheers

Mydexter
Mydexter in reply to wolfiejp

Hi there , that's so frightening for you , funnily enough I've been having something similar , I had one yesterday but I don't get chest pains , it's more the palpitations which come from nowhere, and the feeling of nausea , and feeling hot and cold, do you get migraines at all, as yesterday after this happened I had a bad migraine so I'm thinking it's all connected as migraine can sometimes be cause by the blood not getting to your brain properly so making you feel light headed, I don't think it's anxiety as it comes out of the blue, have you spoken to your GP about this, hope you can sort something out soon, take care

Dizzytwo
DizzytwoModerator in reply to Mydexter

Hi MD, panic attacks do come out of the blue. Unfortunately that's the nature of the beast I'm afraid xx

Mydexter
Mydexter in reply to Dizzytwo

Definitely I’ve had my fair share of panic attacks over the years even ended up in A&E a few times as they couldn’t get my pulse rate down , stayed in for a few days having tests, x rays, heart scans, ecgs, etc , all clear then came home with a 48 hr. monitor , I meant the anxiety that can cause a panic attack doesn’t Always come out of the blue, it’s usually the end result of prolonged anxiety, whatever it is it’s a horrible feeling and the cause should be found if possible, take care

wolfiejp
wolfiejp in reply to Mydexter

Oh yes i forgot how sick they can make me feel, even sometimes get back pain but thats only a few times, the only headaches ive had is since the hospital has given me GNT spray which im not sure is helping or not as the attacks can stop as quick as they start, sometimes the issues have continued even with using the spray.

Yes spoken to GP done a battery of test which all came back fine apart from my Metanephrines which ive had 5 tests now 4 was over the accepted levels so they start to think it might be an adrenal gland issues but endocrine have given me the all clear.

Alanna012
Alanna012 in reply to wolfiejp

So Sorry for assuming you were female!! I clearly have sone sort of unconscious bias. Obviously ignore most of my advice!!

wolfiejp
wolfiejp in reply to Alanna012

lol no worries i should have added that bit of info

scotsrish
scotsrish in reply to wolfiejp

I noticed in one of your posts that an angio or ct showed you had a 70% blockage in one of your arteries that your cardiologist did not feel was significant. I too had ekg, holten monitor, blood tests, xrays and nothing was significant except gerd? I had a significant heart attack with only 70% blockage in my RCA which ripped on the bottom. I could have died thank God for another doctor, emergency flight and two stents one on top of the other because of the rip. Get another cardiologist.

Alanna012
Alanna012 in reply to wolfiejp

I'm not sure I'm permitted to do this, but I've been having similar issues for a couple of years. I also have hypothyroidism and it was while I was researching this that I came across a condition called Postural tachycardia syndrome.

I am cutting and pasting a segment from the NHS website:

**Typical symptoms of PoTS include:

dizziness or lightheadedness

fainting

problems with thinking, memory and concentration – this combination of symptoms is often called "brain fog"

heart palpitations

shaking and sweating

weakness and fatigue (tiredness)

headaches

poor sleep

chest pain

feeling sick

shortness of breath

Some people notice that feeling hot, eating, strenuous exercise or having a period can make their symptoms worse**

It might be worth considering and raising with your G.P. It is made worse by standing after sitting or standing for a period of time.

What I found interesting was that it is considered to be a problem caused by disregulation of the Autonomic Nervous System and it said several diseases including autoimmune diseases like Sjorgren's can cause it. Fibromyalgia is considered by some to be a problem caused by or involving autonomic system disregulation, so I found that link interesting. Apparently POTS can even cause chronic fatigue and nausea after an episode.

Another consideration is peri-menopause/menopause. Surges in oestrogen can cause heart palpitations, excessive sweating and dizziness as well as nausea

Not attempting to diagnose but raising possibilities you may wish to look into. It stands to reason that Fibro can have affect on the nervous system especially if hormones start to fluctuate.

Dizzytwo
DizzytwoModerator in reply to Alanna012

Hi there, if you take a look at the members bio you will see it says he's male.

Alanna012
Alanna012 in reply to Dizzytwo

Oops!

Painny
Painny in reply to Alanna012

Sometimes they don’t declare their gender 🤷‍♀️

Dizzytwo
DizzytwoModerator in reply to Painny

There is no rule to declare your gender. But some do and it may be worth a look to see if they have.

I also try and reply if unsure of gender to include both sexes. Sometimes I think we can forget men can suffer with this horrible illness too xx

wolfiejp
wolfiejp in reply to Dizzytwo

sorry to have caused confusion, i totally get you that not many men get fibro, ive even had a GP say to me oh you cannot have fibro as thats women's illness, needless to say he is no longer my GP

Dizzytwo
DizzytwoModerator in reply to wolfiejp

Not sure that many men don't get it. I just think more men tend to think it's more a woman's problem and refuse to acknowledge their suffering to a GP sadly . There is no shame in having fibro. Or any long term illness no matter what our gender IMO

JayCeon
JayCeon in reply to Dizzytwo

I'm male, learnt good pain-management with a lot more pain than others all my life, and had a fully-fledged fibro-flare for a year now. Praps I'm doing my gender wrong, but all men I know I think would be acknowledging their suffering or staying in bed if they only had half of what I'm going thru... I'll keep this on my mind tho.

Canbedone
Canbedone in reply to Alanna012

Wolfiejp

I resonate with Allana there. I really sympathise and I have only hade a mild version of what you describe and at the worst period of my flares.

Heat Arrhythmia might be at the core and that can cause Angina. FM can amplify perceptions of pain and the ensuing worry can cause panic that will amplify it still further. Amitriptyline is sometimes used to break this cycle - it is an anti-depressant but it is to break the brain pattern not to cure depression per sae. I was also put on Bisoporal to prevent my heart racing but that must not be used with Proton Pump Inhibitors like Lansaprazole. Drug interactions can be severe so it is well worth reading the drug notes that come with you pills - check the items that may rarely interact. Doctors don't always check for interactions so you need to. Every time you see "rare" interactions with another drug you are taking you need to refer that to your Doctor or Pharmacist.

Naproxen is generally one to take with great caution too - only when needed and ideally alone. I was initially put on 500mg and that made me very ill. 250mg for up to 3 days and without other drugs is fine.

Good luck and keep posting to let us know how you get on.

wolfiejp
wolfiejp in reply to Canbedone

damn it im normally so good at googling the hell out of medication before i take them but ive missed the bisoporal/lansoprazole interaction as im on both of them the bisoporal has only been a few weeks now, thanks for posting will get on to google shortly

lovelab
lovelab in reply to Alanna012

hi. I am hypothyroid too and have had chest pains , breathlessness etc when hypo ... there is a link with thyroid and autoimmune diseases ... maybe get tsh tested ...

How are you after bending and standing? Do these attacks happen more frequently when standing in queues? Do they alleviate when lying down? What meds are you taking? Do you have other conditions?

wolfiejp
wolfiejp in reply to Alanna012

Hi, no there seems to be no triggers that we can find, i did at one point think lying on my right side triggered an attack but the past few weeks thats the side ive been sleeping on the most,

When its a bad attack i find moving around helps distract me but only helps sometimes,

Dizzytwo
DizzytwoModerator

I have suffered with panic attacks since I was very young and I can tell you they can hit you out of the blue for no reason. They can come on while watching TV or even wake you up out of your sleep. Your heart feels like it's thumping out of your chest. I can then go weeks even months with no problem. Then out of no where BOOM.

While yours may not be what I suffer with all I can do is give my opinion and personal experience. This is why it maybe best to talk with your doctor xx

Malmal
Malmal in reply to Dizzytwo

I've also suffered horrendous panic attacks for a long time, they do come from nowhere and the chest pain and breathlessness that comes with them really terrifies me! Hope you're keeping well xx

I had ice pick like stabbing pains that come on suddenly and intermittently and go as fast as they came on. I’ve done the whole Holter monitor thing and they can’t find anything. Over the years, I’ve noticed a pattern...I would only get these in spring and fall. I do have a lot of allergies so maybe that’s it? Maybe it’s fibro related. I do know those pains trigger anxiety for me. I just have learned to ignore them since tests say I am fine.

wolfiejp
wolfiejp in reply to NDStrong

yes thats how i would describe the pain but i only get a few sharp stabs i think the most ive had in one attack was 6 all in rhythm and then i break out in to a sweat and can feel sick an shaky then either a few seconds or a few hours later i can feel fine.

I try my best to ignore them, some days is easier then others.

ive had a 48 hour holter which only showed a few missed beats, hoping to get one fitted again next week for a week, fingers crossed it gives us a clue as to what's going on.

Mydexter
Mydexter in reply to wolfiejp

I do hope they find out what’s causing this as it’s very distressing, Do let us know how you get on , take care

I always get stabbing chest pains and palpitations I'm diagnosed fibromyalgia I called ambulance thinking I was having a heart attack but my hearts fine its the fibromyalgia in my case x

Yassytina
YassytinaFMA UK Volunteer

Hello there, it is quite scary when something happens to our bodies for the 1st time and we are left without medical answers, I don’t think you are being dramatic we just get very scared of the unknown, I’m guessing you are still in touch with your doctor through all of this , I hope so , my heart does skip beats I have a murmur, which im told can be quite common in people , does your surgery see you for regular checks with your BP, ? Xx

wolfiejp
wolfiejp in reply to Yassytina

no regular checks with my GP for my BP that have put me on bisoporal which has slowed down my pulse but during an attack my BP is still mega high but now instead of my pulse being 125+ its 65ish.

May I suggest you invest a small sum in a fingertip Pulse Oximeter. You can get these easily on web-sites and some/most have a heartbeat waveform display as well as blood saturation/oxygenation.

Take a look on Ebay or Amazon or browse fingertip oximeter on Google.

These devices can be reassuring or soothing or will tell you if you heartbeat is peculiar. You can easily see missed beats, oxygen levels drop and a partner can watch it if you cant. They are really cheap now going from £6.99 to £12.99 and about £40 for medical quality.

Go for one with a rechargeable battery.

wolfiejp
wolfiejp in reply to Canbedone

Hi, yes i was advised to buy a single lead ecg unit, it has shown lots of missed beats but the cardiac dr kyboshed the results and wouldn't even look at my printouts. But your right it has reassured me a few times that im not having a HA.

Oldham65
Oldham65 in reply to wolfiejp

Hi

I do have panic attacks usually brought on by some kind of stress where I can't get my breath, very frightening. I also have costochondritis which for me is pain in the centre of my chest around the breast bone area. I do hope you get sorted soon.

Love and hugs Lynne xxxx ❤️💜

Hi so all my fibro episodes are chest pain I can just wake up feeling like I cannot breath because of the pain in my chest normally left sided but can be right I’ve had several trips to hospital as it always looks like heart problems but it’s not so then they say panic attacks but its not I’ve learnt to cope with the panic side of the pain my symptoms can last from one to 10 days have resulted in many hospital visits but no explanation other than fibromyalgia flair ups I just have to learn to live with it you have my sympathy as there is no rhyme or reason sometimes to how fibromyalgia works

Hi wolfiejp. BP of 165/111 way too high and is hypertension levels, and resting HR of 120 is very high. I suggest getting a bluetooth BP monitor and HR regularly and while you are having these attacks. Get one that allows you to make notes so you can records other symptoms and details when these attacks occur. Amazon has lots to choose from.

Alanna012 mentions Postural Orthostatic Tachycardia (POTS). There is a type of POTS that is called hyperadrenergic POTS, or hyperPOTS. It's caused by excess adrenaline. Sometimes excess adrenaline is caused by a tumor on your adrenal glands. Excess adrenaline (stress hormone) can also be caused by stress or anxiety. Anxiety can be the cause of chest pain (angina). Sweating and weakness can come from anxiety, and also from high BP and high HR.

Some medications or supplements can also increase blood pressure. Even if increased blood pressure is listed as a rare side effect, it could be causing increased blood pressure. If you're taking several medications that list increased blood pressure as a possible side effect, then you have an even greater chance of having increased BP due to medications or supplements. Couple potentially BP increasing meds with being prone to anxiety and the adrenaline surge that can drive BP and HR up quickly. Do you drink caffeine? Too much caffeine can mess with your heart, BP and HR, too.

High BP and high HR can make the heart beat irregularly. There are many other causes to heart pain than just a heart attack. If there is an underlying structural abnormality, it could be the cause of pain when your heart beats too fast and when your blood pressure is too high. Or, it could be the cause of your heart suddenly beating too fast and your blood pressure suddenly getting too high. Have you had an EKG and echocardiogram? If you have not, these are the next steps to making sure your is completely healthy. Aside from Holter heart monitors, there are also heart monitors that you can wear for up to a month.

A bluetooth BP cuff really can help provide more info towards a diagnosis. What is your BP and HR when you are not having one of these episodes?

Thanks for your reply, we have looked in to POTS and it does tick a lot of boxes and also an adrenal gland tumour ticks all the boxes as well but endocrine have measured my plasma metanephrines 5 times now 4 times my numbers where between 800-900 and only once was below 500 way back in may 2019 at the start of all this, endocrine have assured me my numbers are not high enough for an adrenal gland tumour and then discharged me with no further investigations...

I went private and had a ct with contrast and they discovered my lad is 50-70% blocked but the cardiac Dr said even with it being blocked as it is it should/would not give me the symptoms ive been having so were back to square one.

the bisoprolol is keeping my pulse slow now ive only had one attack where my pulse went over 70 since taking that medication but my BP is still high during an attack but when im feeling ok my BP is perfect.

Could it be Costochondritis? I suffer with this and have been rushed into hospital twice with a suspected HA vomiting, sweating, high blood pressure and the pain is that bad that I cannot catch a breath, it hurts so much with breathing in and out and I cannot move. It’s mainly central chest pain but radiates to my ribs in the right at the side and round to my back, just a thought 😊

wolfiejp
wolfiejp in reply to Panda1968

Hi thanks for the reply, i had looked at Costochondritis, but during an attack nothing makes it worse ive tried breathing in fully and fully expanding my ribcage and it does not make it worse or better, i normally only get 3 to 5 sharp stabbing pains and then the sweats and feeling sick can start. And then there's like today, i woke up at about 6 am soaked in sweat and feeling sick and just unwell but no chest pain, but i do have a chest discomfort right now, i can only describe it as a deep itch just to left of my chest nearly the same places inside where i get the pains,

Merlio18
Merlio18 in reply to Panda1968

Hi can I just ask did A n E diagnose you with Costochondritis? and what was the treatment plan?

Panda1968
Panda1968 in reply to Merlio18

It was a consultant from rheumatology but the cocktail of drugs I take doesn’t allow for an anti inflammatory drug to be taken as it would have apparently terrible side effects I am currently waiting to go back to my consultant but my last 4 appointments have been cancelled due to COVID 😊

Oh I don’t know then. When it’s so bad I cannot touch the area physically and the only relied is a heat pad on low and total stillness until it passes sometimes its hours, I really hope you get some answers as this sounds very worrying Wolfie 😒

Dizzytwo
DizzytwoModerator

Good morning, may I ask your age? You don't have to answer. But I'm wondering if it's some kind of digestive problem you may be suffering with.

You say it's not got worse and you started with it almost 2 years ago if I have that correct? The only comfort I could take from that is while it sounds really awful and distressing it doesn't sound life threatening. I really think you should go back and speak with your GP. At the least update them on how you are still suffering.

Momo

Hi thanks for this post as i can personally relate to what you are going through... I am experiencing the same symtoms and its hell scarey i dont kno what to do as i'm trying to avoid hospitals. The pain itself is unbearable.

I try to keep calm and try to breath at a steady pace.

Dizzytwo
DizzytwoModerator in reply to purple145

Hi there, sorry your struggling. Pain of any kind is debilitating we all understand where your coming from.

May I ask what your GP said your pain was? Why are you trying to avoid the hostpitals? We are constantly been told hospitals have resumed normal services.

I know times are difficult for everyone to say the least. But I would tell anyone who is suffering to please ask their GPs advice. They are the only people who can advise and offer medication if it's needed xx

Momo

purple145
purple145 in reply to Dizzytwo

Im waiting on results... covid is on the rise im just so put off.

wolfiejp
wolfiejp in reply to purple145

Its a horrid thing it really is and i cannot wait to find out what it is and how to fix it, im with you on the avoiding hospitals ive avoided AnE and have only gone in on advice from my GP and 111, never liked them in the first place and now with Covid we have to be very careful.

If like myself you have had 100's of these attacks now and the only way i can look at it is im not dead yet and its that thought alone that is keeping me going.

On a good day my heart seems to be fine, just the other day i moved 3 ton of sand and got the old ticker pumping hard and had no issues at all, yet the next day im having to stop 3 or 4 times just going up the stairs. ive also found that pacing around does not stop the attack but it helps me take the edge off iyswim. Good luck and if you get to the bottom please give me a shout ;-)

Hi Wolfie

I am in the same situation right now as we speak so I know how traumatic it is as when it happens I am up all night so worried as going back to work in a week.

I have alot of health issues fibromyalgia, me, autoimmune thyroid disease etc do you have any other chronic issues ?

Also have you been under chronic stress in the past few years before and during these episodes as I have been A and E during covid as it's been happening all the time on and off for the past 6 months since covid struck But they never allow me to have my bloods so I never no what they test for but it's mainly liver, kidney and heart issues and all come bk fine and then like you I am supposed to be waiting to see a cardiologist but have had no letter as of yet I don't think they test adrenals because the NHS seem to forgot it's connected

It could be Pots like someone has mentioned so I don't no whether you can ask to be tested for that if your still under the cardiologist or get the doctor to refer you.

The other thing it could be which is also connected to your nervous system is issues with your adrenals does it come at certain times of day is anything a trigger as in having a hot shower or having a caffeinated drink or getting to hot say if you have the heating on etc? As I would try cut out anything that you think maybe a trigger.

Research

ADMIN: Please contact OP for links

It's advised to eat low carb and paleo also

I would do some research on this and see if you can get referred. If you can take recordings for 7 days of your blood pressure two in the morning and two in the evening and then take that to your doctor aswell that's what they advised me to do but I haven't done it yet as they maybe able to give you a beta blocker just to curb your symptoms whilst you wait for a referral to check your adrenals usually tho if it isn't Cushing's or Addison's nothing will show up Adrenal fatigue isn't recognised in main stream medicine !

So in the mean time also what you could do which is what I am doing is trying different adrenal supplements to curb my symptoms and going to a naturopath and I am just doing my private cortisol tests this weekend so that's something you can look into as an adrenal supplement might help you also but it might be best to do the test first with your blood pressure so high I also had blood pressure around 135/80 111 when I was in A n E and they didn't give me any blood pressure medication as they said I was to young but depending on your age the doctor might beable to give you a beta blocker and blood pressure medication which might help but I know how ill it makes your feel and it's definitely not a panic attack so I can empathize with you totally

This is the test I bought through the naturopath I am not sure if you can buy a test private through Genova but there are lots of different private labs that do adrenal testing if you do some research

If you read this link it explains the test but it's the American address but good info to help you understand the test

ADMIN: Please contact OP for links

Hope this helps ! You can pm if you need

You are not alone. I am going through the exact same thing.

I have seen a cardiologist who has ruled out a heart attack but I now take several medication (something else to forget to take) for angina. Because I can’t lay still for any period of time they can’t do the angioplasty so I’m as miffed as you.

If you get any good ideas/advice please do share.🤒

if i get answers trust me i'll shout them from every roof top :-)

does it hurt around your spine, in between your shoulder blades at the same time? as sometimes when ones vertebrae goes out of position and presses on the nerve, it can cause palpitations and pain, and quite often the symptoms that you describe

Hi my experience is with similar symptoms and yours sound very familiar to me as I have many that copy yours. There are a variety of angina types that fit your symptoms.

From your post I can’t tell if you are also being seen by a cardiologist regularly.

I’m assuming that you were given a stress test because that’s the usual first test. The gold standard test to follow would be to have an angiogram especially if your scan shows 70% occluded but you haven’t mentioned this. Cat scans aren’t definitive but are sometimes used as a first step. There are several others that also could be added like Echocardiogram, Doppler Ultrasound and so on.

In my experience I have found that many doctors, cardiologist and hospital’s A&E seem to “ignore” or not follow through with patients who don’t fit the usual form of angina symptoms.

In 1997, when I suffered my first recognisable episode of chest pain it began was after I had been out in the snow too long. I came in and sat down with a blanket to keep warm while watching TV for a few hours. Then about 3 hours later as I was going to sleep began having sharp center chest pains that felt like something was pushing heavily on my chest. The pain bore so painful and felt as though it was tearing or or crushing through to my back and into my shoulder blade. The pain continued to progress to my right shoulder as well from center chest across and around to my right side. ( Not knowing anything about heart issues at the time, I have since found out that this is different than standard/ most people’s angina presentation. )

This episode was spasmodic and increasing intensity continuing for about 30 minutes. It was scary but not painful enough to call an ambulance. Eventually this settled. The following day while dropping my child at school I was walking slowly down a short hallway when I suddenly became very weak in my legs. I began feeling like all the energy was dropping out of my chest and caused me to collapse. This was the first time I wound up in the hospital for heart related issues. I was told the two episodes were probably connected and that my heart enzymes were mildly elevated but not worryingly. I was kept in hospital 3 days for observation.

This was 1997 and I was put in care of a cardiologist.

After many episodes and having similar painful attacks where some required ambulance attendance because they went on too long and several grew to unbearable pain. These were always followed in a few days by visits to my cardiologist. I was sent for a full body CT that indicated I had a high probability of high level blockages in my Arteries. This was followed by Doppler, Echo, and a few more tests. Eventually I was scheduled for my first angiogram. Scarily, during the angiogram my heart started responding to the probe by having an Angina attack that caused the procedure to be terminated instead of a stent being put in. This was followed by further angina attacks and tests scheduled but I felt I still lacked an explanation or diagnosis of what was wrong. Unfortunately, a year or two later my cardiologist died of brain tumour. It was 2008, and I also had been seeing a Neurologist for the past 4 years for a variety of issues including migraines and pain due to TOS (Thoracic Outlet Syndrome]) During her tests for these problems she became aware of my heart issues and unusual angina attacks and directed me to a Cardiologist in her circle of referrals with specialty in unusual forms of Angina. This cardiologist also operated on staff for Cedars-Sinai Medical Center in LA.

As I had told my other doctors, I explained to him that my attacks occur while resting, dozing, eating, watching TV or other sedate activity and often happened in the morning while lying in bed. These never occurred while I’m active. I had never been able to manage finishing a proper stress test so I had to be given a chemical stress test at his office. I found this to be a painful and stressful process as it also mimics the feeling of a heart attack as it begins. This is where I was finally diagnosed with Prinzmetal Variant Angina

( Note as I had done quite a lot of reading about my symptoms over the years before he told me his diagnosis I asked if it could be the Prinzmetal Angina that I had read about. He laughed and asked if I wanted a job because that was his diagnosis.) This was followed in a month by another angiogram. However the LAD ( Left Anterior Descending / main artery ) wasn’t able to have a Stent put in after a Balloon Angioplasty because the 90% block was in an impossible position. This had to be cleared by Coronary Rotablation.

2020: Recent diagnosis & additions

Jan 2020- AFib (Arterial Fibrillation.) [blood thinners added]

July 2020- SSNHL (Sudden Hearing Loss Left ear)

[Steriod injections in L ear to try rescuing my hearing.

Injections followed failed attempt to use oral Prednisolone (60mg) / resulting in two same day PVA Angina attacks with BP spike of 225/95 resulting in 14 day hospital stay and rise of Troponin enzymes]

Sept 2020 - New BP med Isosorbide Mononitrate.

Reaction/ Heart attack symptoms and near blackout. 4 Hours later started Aural Migraine all afternoon and some headache bouts. 6 PM > after dinner PVA angina attack came

[GTN used, required hospital stay 2 days and raised Troponin levels]

Notes 2020:

Further complications with return of frequent angina symptoms.

Addition of a new trigger being certain medications (ones with allergic type response)

PVA/ Prinzmetal Angina has been increasing frequency and negative responses.

BP Blood Pressure spikes 180/80 up to 225/95 [proving difficult to manage - several new drugs have been added to help]

Recent Angiograms 2019 & 2020

(“messy” LAD but not blocked so again no Stent / PCI as it’s now referenced)

New procedure MRI Heart Stress/ No Stress Test (Couldn’t tolerate it either / test was halted by the Radiologist due to my pain of Angina attack trigger new drug injected for stressor)

Diagnosis is still waiting and after several stints in hospital the [discussions have turned to Microvascular Angina / Cardiac Syndrome X]

That’s as much as I can remember at this stage. I’m hoping that some of it provides useful information. If you want to ask me anything about my experiences I’m happy to help.

I have surely relayed far more than necessary but wasn’t sure what would be useful to you.

Thank you kaspinallsgr you certainly have given me food for thought and will take a while of researching...

to answer your question im under one cardiac Dr atm and had been given a clean bill of health by my previous cardiac dr " back then we thought it was a endocrine issue so only had a resting ecg which said i was fine, The attacks have no pattern, i have a Holter monitor since Saturday and up until this morning i have a total of Zero attacks , i thought i was going to be handing the monitor back tomorrow with out having recorded any attacks but today ive had a few mild ones,

The not knowing is what's getting to me now, its been over 18 months of not knowing if this attack " is the one " fingers crossed ive only been taken to the emergency room twice and they checked my troponins and then discharged me with a reassuring smile saying it wasn't a heart attack....

I just wish to find out what ever it is take it on the chin and move on no matter how good or bad the news is.

thank you all for your reply's, If i get to the bottom of it I'll make sure i post back just encase it helps someone else

Hi Wolfiejp. Good luck with getting a complete diagnosis. Every time I think I’ve got a definitive answer my body throws in another twist or new guidelines puts everything in a different category. I wanted to say, try to get multiple (at least 2) opinions because much of this is based on opinions. Just this past month in one of my emergency trips to A&E (aka ER in US) 3 Cardio docs that were working on my case gave me 3 different responses as to what my symptoms of Prinzmetal Angina attack plus Troponin numbers, scans, and bloods meant in regards to a diagnosis:

Mild heart attack, Not Heart attack,

Holding me in and watch if the Troponin numbers keep going up then decide. Like you I get more upset over vague answers. I want to know what is the correct (?) answer... if that’s even possible. You would think after 20+ years, two countries, and the many Cardio docs who who have reviewed my symptoms that there should be a correct diagnosis by now. Sometimes I feel like I should be granted a medical degree with all the reading and research I’ve had to do in order to communicate with my docs. I don’t know about your docs but I find if I’m able to communicate with language or specific words that they’re expecting to hear and which relays my symptoms more accurately then it seems I’m understood better. In particular, during emergency situations when I’m trying to explain what’s happened it’s really difficult to give a calm thorough explanation of the exact intensity, type of pain, and all related important symptoms that occurred during “the event.” Plus needing to make sure my questions are worded direct and to the point so I’m not left wondering if the docs on duty who are tending to me follow up with accurate and in depth communication to their lead cardiologist on duty who then in turn relays that information to my own Cardio. I’ve noticed many times there is quite a bit of variation because of the doctor shorthand notations. The numbers can all be accurate but the interpretation varies.

Finally, in talking about communication, the one thing that oddly gets to me is when I’m on an ambulance cart being rushed into an emergency room whilst in a lot of pain, having difficulty breathing, scared and intensely focused on if I’m going to live or die the question I dread to hear is always worded the same; “So what brings you here this evening (morning or whatever)?”

Everything that’s just gone on explodes into fragmented pieces of memory that’s too difficult to pull together. I get so stressed out knowing that question is coming because it always feels like what I’m going through must seem so trivial to the questioner to be worded in such a way that feels like they’re asking what have I been up to this week?

I’m sure this doesn’t bother most people but that has always pushed my buttons.

I do hope you get the answers you want much sooner than I have been waiting. Please do let us know how things go.

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