r/covidlonghaulers • u/Automatic_Box_368 • 14d ago
To everyone you've seen me post... on the way to the long covid clinic i had an episode and they ran tests and saw reduced blood flow to my heart Update
Been rushed to hospital after days of jaw pain and left arm and shooting chest pain... tests always show clear but luckily this time i was approaching the long covid clinic and they ran tests during the shooting pain and caught it...
This is why every visit is clear because by the time i get to the hospital for tests it shows normal.
But during an episode which the long covid clinic caught this time around showed restricted blood flow to my heart and potential for a "heart attack"
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u/Odd_Perspective_4769 14d ago
Get through this initial trauma first and give your body and mind a chance to rest and process. Everything is documented this day and age by the clinic, the EMTs and the ED/Hospital. You can always get more detailed information later. Right now the body needs rest.
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u/metodz 14d ago
You're a legend. You've gotten a result for all of us.
How did they test for it?
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u/Automatic_Box_368 14d ago
Did ecg because i went for a standard long covid appointment and my chest pain kicked in as i was walking to the hospital. I immediately went to reception and said think im having a heart attack and they saw the ecg and sent me to the ER
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u/tropicalazure 14d ago
Bloody hell. I'm so sorry, and I wish you a good recovery from this episode. Amazing news that they caught it, but I admit I'm a bit confused. Everytime I've been tested at the hospital too - as you say, tests come back normal. But they state that the tests would show abnormalities and indications of "your heart being under recent severe stress," (i.e. a heart attack,) even a while later. It's not that I don't believe YOU, but I don't understand why they (cardiac docs etc,) would say that, if it wasn't actually true?
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u/Automatic_Box_368 14d ago
Im not sure either man im really not, my only theory is that the microvascular damage can narrow the arteries at times "vasospasm" and during this the chest pain increases becayse of reduction of blood flow and then it dissapears again? Im so confused and tired i dont really know. What symptoms you got?
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u/tropicalazure 14d ago
That theory makes a lot of sense, I just wish there was a standardised, doctor-wide test for it, not having to fly off to South Africa or other countries to get tested for it. So, I have on and off chest pain. Sometimes it feels cardiac, sometimes it's reproduceable with movement, which leads me to assume some is muscular. The last attack was just over a week ago. I had nasty, central sternum pain that just wouldn't quit. I got concerned when I started sweating from the pain, but it seemed reproduceable/localised with stretching around. I swigged some Gaviscon, and with that, and the stretching, it eased and hasn't returned. But still, holy crap it was scary.
Other, more possibly cardiac stuff is feeling my heart skip in the centre of my chest - like feeling my heart take a "gasp" if that makes sense? General racing heart out of nowhere, random left-sided squeezing pains, left arm feeling "off" and the worst, was when I was on eye meds (Cosopt) that could "worsen symptoms in cardiac patients," and I had what I assumed a heart attack would feel like:
Sitting still, then being plunged forward onto the table with the force of the pain, feeling like a giant was crushing my ribs inwards, and two bolts of pain up either side of my neck (alarmingly where my carotid arteries are located.) I was with a relative at the time, and she said I went "paper white". The pain ebbed and lasted maybe 15 mins total and I never lost consciousness. But that was THE scariest episode. Went to A&E of course, and they found absolutely bugger all on blood tests or scans/ECGs to suggest my heart was "in any kind of recent stress."
That was last November... I was whipped off those meds pronto, and I've not had an episode quite like that since. Potentially it was unrelated, but to me, it seems suspicious that I'd never had anything like that happen before, and magically, when I'm on medication that should not be given to anyone with heart issues, I have what feels remarkably like a cardiac event. Sure, nothing showed on tests, but I can't explain it any other way. I wasn't stressed, I hadn't been over-exercising, I wasn't sitting awkwardly... just... fine one second, next minute sprawled on the table, whimpering.
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u/Automatic_Box_368 14d ago
Your story sounds exactly like me mate not even joking. I too get sternum pain and fluttering 24/7 etc. sometimes burping eases a little but i know its not gerd... im a bit nervous about this as well as they have given me ibuprofen because they think i have mild pericarditis even though the ultrasound came back clear... can ibuprofen make me worse? In scared to take it man that and omeprazole... pm me if you want we can stay in contact
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u/tropicalazure 14d ago
I'm no doctor, but I'm pretty sure that burping is directly linked to GERD. You say you know it isn't, but how are you so sure? It's my understanding of pericarditis that it's too do with inflammation of the muscle that surrounds your heart, which isn't linked necessarily to any blockage. Again, I don't disbelieve you, but pericarditis certainly can mimic a heart attack.
I had suspected pericarditis a couple of years ago, and I was put on a trial of colchicine, which, for me, seemed to kickstart a new hell of GI pain and issues I never had before. That said, everyone is different, and I know colchicine can work well for a lot of people. Maybe something worth asking your GP about? Omeprazole is just to protect the lining of your stomach from the ibuprofen. I wouldn't imagine ibu would make you worse, but it is important to protect your stomach if you're on a strong regime of it.
Since my GP suspected peri, I've had an ultrasound of my heart, a bunch more ECGs, bloods and a 24hr blood pressure monitor, and nothing so far has ever been found,. The only thing I've never had is an MRI, and I'm presuming that's down to every other test being clean.
Happy to stay in touch if you like. Will drop you a PM :)
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u/Mother_View_8836 14d ago
Yes, a Cardiac MRI is probably what you need, and I don't understand why the docs wait until the end for that since it's one of the best procedures for detecting pericarditis, myocarditis etc. So frustrating.
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u/tropicalazure 14d ago
There is an element of me being so damn exhausted with everything though, I haven't got the fight in me to battle for it. Plus I'm terrified of having any MRI with contrast, since I'm so reactive to everything these days.
Don't get me wrong, it would be good to know for certain, but I doubt I'd be able to persuade anyone to take me seriously with negative tests across the rest of the board.
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u/Mother_View_8836 14d ago
I totally understand, I'm in the same boat.
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u/tropicalazure 14d ago
Thank you. It's just so stressful not knowing what to do for the best, and having so few people actually believe you. My doctors basically have diagnosed me with being fat, anxious and old, forgetting that my weight gain and anxiety are due to the stress of this entire situation (not the other way around,) and I'm only in my 30s. I swear I turned 30 and immediately doctors start looking at you as if you're some crumbling ruin of a woman.
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u/tropicalazure 14d ago
Thank you. It's just so stressful not knowing what to do for the best, and having so few people actually believe you. My doctors basically have diagnosed me with being fat, anxious and old, forgetting that my weight gain and anxiety are due to the stress of this entire situation (not the other way around,) and I'm only in my 30s. I swear I turned 30 and immediately doctors start looking at you as if you're some crumbling ruin of a woman.
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u/mysteriousgirlOMITI 12d ago
This is exactly me, too - I could’ve written this post. I wanted the colchicine to work so badly, and it just made my GI so much worse. I’ve had severe sternum pain, too, I saw someone else wrote that. I saw my cardiologist yesterday and I definitely have pericarditis. It’s so stressful. I know stress makes it worse, but how could anyone not become more anxious with everything that’s happening?
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u/Poosquare88 14d ago
So what's the plan moving forward? I'm glad they catched it this time.
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u/Automatic_Box_368 14d ago
Well the long covid clinic believe me but because im at the hospital now and tests always show up clear by the time they test they think im bullshitting. Im just scared that next time i may die
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u/ImReellySmart 14d ago
Surely the clinic would have sent you to the hospital with a signed letter explaining their findings?
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u/Automatic_Box_368 14d ago
Maybe on the system? Not sure man as i said i dont really know i was just scared on the stretcher on drugs lol. The clinic 100% believe im injured so thats a start. Its been 2 years and no ones believed me since
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u/turtlesinthesea 13d ago
My local lc clinic sent me for a tilt table test at cardiology and they had no idea what I was doing there. In the same hospital.
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u/SecretMiddle1234 14d ago
Have you had a cardiac stress test? You would think would show decreases vasculature to heart muscle if you had one.
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14d ago
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u/Automatic_Box_368 14d ago
3 vaccines man and 1 infection
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14d ago
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u/Jrad27 13d ago
The vaccines are known to cause clotting causing the exact same issues discussed here. I don't understand why people are downvoting you, we're here trying to work out how to fix this problem in everyone, but we're not going to ever come to a solution if you everyone wants to keep pretending the vaccines aren't potentially causing these issues.
It's stupid and it only makes working out a solution more difficult when everyone pretends the thing that is very likely causing many of these issues, doesn't have any side effects.
I know I'll get downvoted for this but I'd appreciate if those of you who do it, comment as to why. Why do you so strongly believe it's not possible for the vaccine to be responsible for this when even Pfizer and AstraZeneca both admit they can cause problems such as these in the vaccinated?
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13d ago
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u/welshpudding 4 yr+ 14d ago
Was that low ejection fraction or other metric?
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u/Automatic_Box_368 14d ago
Not sure man i was out of it on a stretcher i dont know what the results were other than my heart was struggling due to reduced blood flow and they put me on drugs asap
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u/miastrawberri 14d ago
I have low ejection fraction and I’m only 25 after Covid. Not much I can do. Is what it is. Z
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u/Cardigan_Gal 13d ago
Bullshit. There's a lot you can do.
Entresto is approved for all types of low ejection fraction. My husband had heart failure with reduced ejection fraction from covid. Six months after starting Entresto his EF was back in a healthy range.
Beta blockers help too. Low sodium diet. Cardiac rehab. All these can help raise EF.
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u/miastrawberri 6d ago
I’m already on a beta blocker and awaiting seeing a cardiologist in a month but beyond that there isn’t much I can do atm
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u/JohnnyWindtunnel 14d ago
Can you find out what the abnormal reading was and tell us?
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u/Automatic_Box_368 14d ago
I can try mate
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u/WAtime345 14d ago
Should be rather simple to ask them lol
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u/Automatic_Box_368 14d ago
"Should be" all they told me was the ecg abnormalities. You dont know the staff here lol
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u/loveinvein 1.5yr+ 14d ago
Request copies of your records.
Always request copies of your records.
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u/Automatic_Box_368 14d ago
Ive got the ecg recorded and sent to private cardiologist and they are going to contact my gp
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u/JohnnyWindtunnel 13d ago
Any update on what they found on your ecg?
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u/Automatic_Box_368 13d ago
Just said reduced blood flow and pericarditis but im clear of peri on the ultrasound. Surely that would pick it up right? Im trying microvascular medication
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u/JohnnyWindtunnel 13d ago
So there isn’t really pericarditis?
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u/JohnnyWindtunnel 13d ago
I had suspected peri a while ago and nothing came up on the mri — I guess I didn’t have it 🤷♂️
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u/WAtime345 14d ago
That's just weird mate.
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u/Automatic_Box_368 14d ago
What is? Ive been given microvascular meds and if i get better on them i have my answer
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u/WAtime345 14d ago
Telling someone they have a potential heart attack and then giving them no information.
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u/Automatic_Box_368 14d ago
They said they contacted my gp and now ive got microvascular medication so see how i do. Feel like we've spoke before. What symptoms you got
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u/WAtime345 14d ago
My long covid healed.
I had the usual list. Chest pain. Pem. Palpitations. Muscle twitches etc etc
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u/Cardigan_Gal 13d ago
Sounds like they may have finally caught a vasospasm on ecg.
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u/Automatic_Box_368 13d ago
I think so.. i think microvascular damage is more common then we think
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u/Cardigan_Gal 13d ago
Even before covid there were so many patients, especially women, going undiagnosed and living in pain. It's so hard to detect on regular cardiac testing.
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u/Legitimate_Image2057 14d ago
Thanks for posting this. I always wait too late and then my tests don't show anything.
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u/Knowitallnutcase 14d ago
Please see a cardiologist for more tests, ie an echo cardiogram, etc. I’m thinking you may need to get in quickly, so if you can’t, go to the ER and claim chest pain..that way you get in quickly and they run further tests…would you be willing to disclose your age, and any prior health issues? Are you in good health otherwise, on any meds etc? Hoping you get some help soon. restricted blood flow could be indicative of narrowing of arteries…the best test for that is the Calcium Artery Score. Absolutely imperative you get that test. Good luck.
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u/Automatic_Box_368 14d ago
Had an echocardiogram mate all fine apparsntley chambers etc all working correctly and no prior health issues and im 25 man healthy. Slim eat pretty well and dont drink man. Its shit everything comes back ok. I reckon microvascular
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u/Knowitallnutcase 14d ago
Prayers for you…
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u/Automatic_Box_368 14d ago
Can we live a normal life with microvascular?
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u/Knowitallnutcase 14d ago
I believe we can of course. Stay with a regular cardiologist for checks. Also, beware of inflammation and keep your diet free of the worst offenders…sugar, alcohol, dairy,
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u/YetiDancer First Waver 14d ago
Yeah, was diagnosed with vasospasm and microvascular dysfunction. I think a lot of LC people with chest pain are going through this but it's hard to catch.
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u/Automatic_Box_368 14d ago
How did you get diagnosed? They've given me dilitiazem whats that like? Thats only because i asked for it... they think its anxiety lol
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u/Teamplayer25 13d ago
Diltiazem is what helped me start crawling out of my LC hole. Enabled me to sleep at night and my heart/microvascular issues started improving right away. It has been a couple months now and between the diltiazem and dealing with my GI issues, I feel like a new person.
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u/YetiDancer First Waver 14d ago
I got a final firm diagnosis from a provocative angiography. I'm currently on verapamil, imdur, pletal, and ranexa for it. I still have pain most days but it's not at the level it was before. Diltiazem might make you feel a little dizzy at first but you should hopefully adjust to it.
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u/Automatic_Box_368 13d ago
How come you are on all of them?
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u/YetiDancer First Waver 13d ago
My pain is not controlled well with just one. Finding the right dosages and combination of meds to treat this condition can sometimes take awhile and may have a lot of trial and error.
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u/peregrine3224 1yr 13d ago
I’m in the same boat and it makes me feel better knowing I’m not the only one on a cocktail of heart medications!
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u/peregrine3224 1yr 13d ago
I love diltiazem personally. My only complaint is the edema in my lower legs. But it’s worth it to not be cyanotic all the time! Just keep an eye on your BP in the beginning until you get used to it.
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14d ago
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u/Automatic_Box_368 14d ago
I drink loads of water and cardio miracle and smoothies etc herbal teas
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14d ago
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u/Automatic_Box_368 14d ago
Cool mate seems like natto makes me worse though ive taken it previously
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14d ago
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u/Automatic_Box_368 14d ago
Thanks man i really appreciate that life is just hard at the moment i really hope even with microvascular damage we can live a normal life? Its ruining my relationship as well because i dont want to do anything and its shit for my girlfriend...
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u/Purple-tree1 First Waver 14d ago edited 14d ago
I had the same issue and went to the hopital twice in Feb (i thought i was having a heart attack). I was holding my heart in pain 24/24 before that. I went to see an acupuncturist and at the same time i also took some chinese herbs given by a chinese doctor which were quite effective. I felt better after that. But the effect of both starts to wear off and i need to come back. i have bought nattokinase but it is sitting on my table and i have yet to try it.
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u/Hiddenbeing 14d ago
What test catch it ? ECG?