In Limbo

[Tink6467]

I developed a wheeze/whistle at night at beginning of lockdown and was diagnosed by telephone with asthma (at age 56) and given inhalers. (Have not yet had lung function test due to Covid) so still not really confirmed. I then developed chest pains which feel like they are where you’d typically recognise your heart to be (not central). I have mild chest pain almost every day (and an extremely stressful job/ stressful personal life of late/ I’m overweight/never exercise). Was referred to cardiology (not actually seen anyone) and have had a chest x-ray which showed no heart enlargement. But was told via GP that the mystery cardiologist thought I had angina based on my symptoms and GP prescribed a spray and was told I would have an angiogram in 6-12 months. Stuck in traffic on M25, BH weekend, I used spray, felt terrible and opened eyes to find my husband sobbing saying I’d stopped breathing and had a seizure. I was fine after but clearly have been since told not to use spray. I have had 2 ‘snapshot’ ECG’s at docs/all good and I never experience an increased heart rate. The chest pains are Really unnerving but apart from ‘get to A&E if they get really bad’ I have no treatment or real diagnosis. I’m now not allowed to drive because I advised GP of the seizure. My cholesterol is slightly elevated but not enough to medicate.

I’m scared the mild pains might develop into something worse. (Occasionally I get a piercing sensation) Some days I wonder if I’m overthinking it, some days I’m convinced I’m going to have a heart attack. Does anybody out there have any advice for me? This has been going on for 5-6 months and I still feel no nearer to an accurate diagnosis and a 6-12 month wait seems forever.

[funnyfennel]

You poor thing, its always difficult when you dont know what is wrong. I started with a wheeze and asthma diagnosis, but turned out I have a Mirtral valve problem, however my heart is enlarged and they could see the problem on the Ultrasound, so not the same as you. But before all this, I found sleeping with a few pillows allowed me to breathe more easily....just a thought. Good luck

[Tink6467 in reply to funnyfennel]

Thank you so much for your reply, Very interesting you started with an asthma diagnosis. Will definitely add a couple of pillows tonight. Hope your problem is treatable?

[funnyfennel in reply to Tink6467]

Yes, am on the list for a valve repair or replace this year, so it should be sorted out thank you. Meanwhile I am breathless if I exert myself, so activity is limited. Best of luck with your diagnosis .

[Tink6467 in reply to funnyfennel]

Oh that’s good to hear. Best of luck with it 👍

[woodlandwonders]

Hello,

Sorry this is a bit long.....

You sound like me. I have severe aortic valve regurgitation. Up until now I've had no symptoms.

About the same time as you, I was admitted with breathing problems, chest pain, severe fatigue. I was discharged with possible copd and a concern my heart is no longer coping with the leak. I have an emergency referral to a new cardiologist and for lung function test. Then Covid hit and I have not had either

So how to help you....

The pillows really help, I practically sleep sitting up now.

You obviously know that the stress in your life is really bad for you. I'm assuming you can't quit work or change your personal life so you need to find a mechanism to manage it. Lots of people use Tia chi or yoga but simple breathing exercises, in a dark room really help too.

Keep on at your GP for that angiogram appointment. Make sure they are fighting your corner. Dont sit there quietly. Maybe it's worth a mention that both people who have replied to you have serious valve regurgitation ?

If you can, go private for the tests. You will have your answers alot sooner. They can refer you back to the NHS when you know what's going on.

The people on here are great for scooping you off the floor so dont be afraid to vent, cry, or worry on here. We all get it.

Take good care x

[Tink6467 in reply to woodlandwonders]

Thank you very much - that is all really great food for thought. My GP usually calls and ‘checks in’ with me every other week. I shall discuss that with her and maybe she might have a good suggestion who to go to for a private consultation?. I know she’s as frustrated as me with the waiting list, She did say as I had the seizure after using the spray she would try and push for an earlier appointment so I’ll see what next week brings. Thank you so much - will definitely mention all this to her. It really helps not to feel alone. I tend not to share with my husband because he is so worried and I feel like I’m adding to his anxiety. It’s just so great to share 😀

[woodlandwonders in reply to Tink6467]

Share anytime, there Is always someone listening here and we all know how scary it is.

I'm so, so sorry to hear what you have been going through these last months. Just heartbreaking. The symptoms you have been experiencing would be enough, but with all your grief, I dont think even a superhuman could process that.

It's great your gp is looking out for you and I would definitely ask for reconmendations if you can. I'm assuming you are inside the M25 somewhere? There are some great heart hospitals there. You could probably even see your mystery Cardiologists (apparently its alot safer for them/you when you pay

I really hope you get the care you need and soon x

[woodlandwonders in reply to Tink6467]

Philco37 post, titled Glyceryl Trinitrate might interest you too

[Mikedabike]

Again a purely personal viewpoint, but to me this sums up perfectly all that is wrong with medical treatment during the current Covid crisis. I would argue that you need a full batch of tests to ensure you are given the correct treatment. Like I say it’s a personal view, but I find it appalling that you have been prescribed medication like this.

[Tink6467 in reply to Mikedabike]

Have to say that is exactly what my husband says. I’m still using steroid inhalers for ‘unconfirmed asthma’. Obviously spray had terrible effect for ‘unconfirmed angina’ . Pericarditis was suggested at one point, but as my heart wasn’t enlarged on chest X-ray that has been discounted. As I lost my sister- in-law, my father-in/law and a close cousin (only 48 years old) since lockdown (father-in-law’s ashes still in our house waiting until family get together is possible) and my son suffered a brain injury in a car accident, broken heart syndrome was also suggested as it has been an extremely stressful time as you can imagine. But I believe blood tests have ruled out that diagnosis. And I don’t feel any increased heart rate. That’s the bit my GP can’t make sense of she says. Just chest pains and breathlessness.

Guess I’ll see what next week brings 😬

[Fluffybee in reply to Tink6467]

Hi Tink6467

So sorry you’re going through the turmoil of not being correctly diagnosed, meds, after effects of corona virus within the medical profession, etc etc

It’s the not knowing what you’ve got I think is one of the worst stresses, I’ve been there and so many people on here have also.

Your family life is so traumatic and each one a massive blow to you.

You’ve certainly come to the right place, always someone hear to talk to, Ive said many what I feel is a stupid question and have been reassured and loads of kind words, makes me feel so supported and I know you’ll feel the same way to.

Best of luck, let us know how you get on!!