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Newbie: is it normal to feel like you're going bonkers whilst awaiting a diagnosis?

Tray4321 profile image
16 Replies

I spent yesterday morning at A and E awaiting a troponin blood test to see if I'd had a heart attack in the early hours of Sunday morning. I hadn't thank goodness.

Flash back to March/April this year when I first went to the GP for a weird feeling in my chest. Bloods showed Vb12 deficiency and my blood pressure was ridiculous. Was referred for a 24 hour ECG which came back fine despite me having lots of my odd sensations whilst wearing it.

Get treated for VB12. July 2022: Still having weird chest stuff and now shortness of breath/dizzy spells. Think I'm being a bit of a hypochondriac. Go back to GP who reviews bloods and spots stupidly high cholesterol. I'm 42. Sent home with lots of meds and a GTN. Referred to urgent two week chest pain clinic. Try not to panic.

Discover there is currently no such thing as a 2 week wait in the NHS anymore. See GP twice in the interim and A and E once as symptoms of angina seem to be changing/getting worse/couldn't catch my breath/etc.. On the first occasion it was suggested that I was stressed. The second that is was indigestion and the third possibly menopausal. Confidence now in my socks.

Have to wait until end of Sept so see specialist nurse who admits that my symptoms don't fit neatly into a box. Has put me on isosorbide mononitrate and referred for ECG and CT angio.

I have had the Echo which has come back clear. Just waiting on the CT angio.

Meanwhile, I had a funny turn on Friday which knocked me for 6 and put me in bed for the whole weekend. Just walking through town - had to go up some steps. Couldn't catch my breath so sat down on a wall. Took my GTN. All ok. Ate a big lunch (know this is a no no now). Then felt weird on the way back to car. Slept the whole way to the supermarket (I wasn't driving) even though I hadn't been tired earlier. Then I had to be sick in the supermarket toilet yuk. When we got home Friday afternoon I went to bed and I didn't get up again until Sunday teatime unless for the bathroom. Has anyone else experienced this?

Then to top the weekend off I had the worst chest pain wake me and practically levitate off the bed in the early hours on Sunday - hence the GP approved trip to A and E.

So I feel like I'm going mad as on the one hand you're being told to worry about having Angina and present at GP's/A&E, you're being treated for Angina but then medical staff suggest it might be indigestion, lots of tests coming back clear (yay!), could it all be in my head?

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Tray4321
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16 Replies
Milkfairy profile image
MilkfairyHeart Star

I am sorry you are having such a challenging time.

Has anybody considered non obstructive coronary artery disease NOCAD as a cause of your symptoms?

Microvascular and vasospastic angina are often overlooked as the symptoms don't fit the usual angina box.

I live with vasospastic angina, all my, tests which are designed to diagnose obstructive coronary artery disease were normal.

However I had a specialised angiogram which confirmed my diagnosis of vasospastic angina.

I suggest you keep a log of your symptoms. Being woken at night is relevant. It's a classic sign of vasospastic angina. I experience most of my chest at rest and I am frequently woken by chest pain.

Breathlessness is a common symptom women feel rather than chest pain when they have angina.

The BHF website has this information about microvascular and vasospastic angina

Unfortunately these conditions are often overlooked, under recognised, difficult to diagnose and treat.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo....

Be prepared to be persistent. I thought I was going mad too, until I found a Cardiologist who understood vasospastic angina and sent me for the correct investigations.

Tray4321 profile image
Tray4321 in reply toMilkfairy

Thank you so much Milkfairy - I am literally reading through the patients stories on the international heart spasm alliance now - I found the link on here I think through a previous response of yours! It is definitely ticking boxes and has made me feel more confident.

What I'm struggling with right now today is the fatigue. Up until last week I could sort of shake off the angina attacks and crack on but I am absolutely whacked this last few days.

Milkfairy profile image
MilkfairyHeart Star in reply toTray4321

The fatgue is awful I agree.I am sometimes so tired I could cry.

Are you able to pace your activities?

Tray4321 profile image
Tray4321 in reply toMilkfairy

I am fortunate that my self employed job is seasonal so I am quite quiet at the moment!

Shellac profile image
Shellac

Like me back and for a@a@e over the years doctors always said its muscular forward to may 2022 had ct scan and found a severely blocked artery still severe pain had provocative angiogram and got MVD so not all in my head and not muscular 😫😫😫😫see if you can get tested for MVD

Tray4321 profile image
Tray4321 in reply toShellac

thank you Shellac. What is MVD?

Milkfairy profile image
MilkfairyHeart Star in reply toTray4321

Microvascular dysfunction another term for microvascular angina.

JeremiahObadiah profile image
JeremiahObadiah

Vit B12 deficiency causes amongst other things- overwhelming fatigue, shortness of breath, dry mouth, difficulty in swallowing, irritably. It can be a side effect of some medications.

Injections do work but not necessarily with instant results. Hopefully being treated for that will alleviate some of your issues and show up what is not related to the deficiency.

Try to eat well. You can buy VitB12 flakes, one brand is called Engevita, which you sprinkle on food. It tastes pleasantly cheesy.

Tray4321 profile image
Tray4321 in reply toJeremiahObadiah

Thanks Jeremiah - I had the injections and am now taking oral supplements. All of the issues I had been experiencing (and some I hadn't even noticed as the deficiency crept on so slowly) are better. As Vit B12 can affect heart function I naively thought that once my levels were normal that my chest issues would alleviate. Fingers crossed it is just a passing phase. Roll on my angiogram next week😀

JeremiahObadiah profile image
JeremiahObadiah in reply toTray4321

Let us know how you get on. Hopefully you’ll get some answers and reassurance.

From seeing a close relative who collapsed and had to have blood transfusions due to B12 deficiency, her recovery since with 3monthly injections has been slow and steady, in a similar way to the slow onset, but now looking back, a dramatic improvement . At one stage she had been only getting up for an hour or so at a time and was always crochetty - total overwhelming fatigue.

Best wishes for next week.

Shellac profile image
Shellac

Microvascular dysfunction

ETHEL103 profile image
ETHEL103

Goodness you are going through the mill.In these times now since covid if you are like myself and have some degree of health anxiety everything seems worse because in your mind you know that you just can't get to a medical professional as you used to.Its like the safety net has been taken away.My anxiety has increased big time since covid so I know exactly how you feel.There will be many on here feeling the sameVERY BEST WISHES.

fishonabike profile image
fishonabike

in response to your title: yes, in my experience it is normal to feel like you are going bonkers while you wait for a diagnosis

you want your life to get back to normal and you want some certainty but you seem to get a vague and confusing picture from the medics, where you expected some answers - you may even be imagining all sorts of "worst case scenarios"!

unfortunately, whatever we hope, believe and expect, doctors can't always cure us straight away - it sounds as though your Vit B12 deficiency has been going on for some time, although you were not aware of it - this will have had a variety of effects on your body, some of which caused you to get help - other members have explained some of these

meanwhile you are fed up and just want to feel normal again and understand - but the medics are slowly building a picture of what is going on in your body, the injections will take time to sort out a problem which has become long-term (chronic) and your body needs time to adjust

there is a possibility that there may be damage which will take longer to resolve, so maybe you could try to slow down a bit while you body sorts itself out and the doctors find the best ways to help - if you are tired, rest, your body needs recovery time - if you are out of breath, you are not getting enough oxygen to where it is needed so slow down, working without enough oxygen makes bigger demands on your heart and lungs, they don't like that!

I hope things get better soon and the doctors can give you some helpful answers soon, meanwhile try to be gentle with yourself, you aren't going bonkers!

Fourwhitesheps profile image
Fourwhitesheps

I too am waiting to be diagnosed. Referred to rapid chest pain clinic ecg abnormal told i have had suspected heart attack and sent home with Ramipril and Bisoprolol as a precaution. Waiting for an angiogram. My muscle aches are absoloutely horrendous and all sorts go through your brain. I just want to know what it is so I know and can stop second guessing myself. Cannot get a doctor to ring me my surgery has booked an appointment for the 28th. I have had this going on for 8 weeks and feel so anxious with it all. I hope you get the answers you are looking for

Tray4321 profile image
Tray4321

Thank you for your lovely and thoughtful reply fishonabike :-)

Tray4321 profile image
Tray4321

Thank you Fourwhitesteps - best of luck with your journey too

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