Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

Hi @findingschools4myboys long time no see! It's like hotel California this place- you can check out but you can never leave!
I've been doing much better but had a brief relapse over the weekend with gastric stuff- nausea bloating and a headache. Feel ok again today though.

@Whatnext2018 I’m not sure whether this is the one you are thinking of but I am on Covid-19 Support Group (have it / had it).

@Whatnext2018 I’m on the covid1in20 Facebook group

Talking of that Facebook group, a yoga teacher on there who is recovering from Covid has kindly made some yoga for recovery from covid videos. I haven’t tried them yet but the first one is here:
zoom.us/rec/play/v5ArIu6u-zs3G4aQuQSDUfAtW9TrfPishCcY8_IEmEexWnkAZ1GiMrsXNrR81VrsnnO6BDVkQYHbnuJi

@Silvergoldsilver thanks for posting about the 1in20 group. Have now joined it.

@Egghead68 That’s the one 👍 thank you!

@Silvergoldsilver Will join this one too, thank you

Is everyone staying in ?

I just don't know what to do. I need to walk the dog, and could do with getting some shopping, but I also don't want to be spreading it. 111 say I don't have it as no temp, persistent cough but we all know that is a mistake to just go in those symptoms I think now.

@Needsomegoodies

Sorry to hear you're suffering with your heart. I'm experiencing the same problems you've mentioned.

Mine is all over the place. It rests fine but will quickly shoot from 50 to 100 when I stand up or sometimes for no apparent reason.

The pounding gets amazingly strong at times. It pounds for most of the day but ebbs and flows in intensity. Like you, it keeps me awake sometimes because it jolts my whole body.

I'm also getting the skipping beat / big thud very occasionally.

If I rest for a day or 2 the pounding is noticeably better the next day. It's still there but it's very low level. If I increase exertion the pounding returns, so it's clearly related to exertion.

I've had 2 ECGs both of which have been clear. I'm having a heart echocardiogram in the next week or so, which I learned yesterday was to look at heart valve function.

I don't think its a mechanical problem though. My fatigue, heart are terrible in the morning but improve over the course of the day.

In the morning I awake feeling SOB, weak, dizzy, shaky and disorientated but by early evening I feel like a different person -- physically and mentally. My heart beat is consistent, it doesn't race on standing and the pounding is muted. I have energy and feel more like my old self again.

Something happens to me in the night. I sleep fine from 9 until 1am and then It's as if my body reboots when I awake from deep sleep 1. I awake from that at 1am with a racing, pounding heart and then drift in and out of physically and mentally painful sleep until 6am. It's like groundhog day.

The heart issues outlined above fit in with the symptoms of PoTS, which can occur as a result of CFS -- or hopefully temporary post viral syndrome.

@MillStone your heart symptoms sound very distressing. Are you taking anything to help you sleep? I wonder if it's a vicious cycle with poor sleep leading to exhaustion and rapid heartbeat the next day.
I am the same, my heart rate is ok on resting but gets very high on exertion. I've now started sitting down after climbing up stairs, avoiding tasks like unloading the dishwasher etc. I am noticing much less fatigue when I am not getting as many high spikes in heart rate.

Who had the menthol taste? Have you still got it? I think mine has gone at last

@TiddleTaddleTat

Thanks, that’s an interesting idea. I’ve never taken anything for sleep. Do you know if calms work? I’d rather use something natural.

I figured the sleep issues were related to PVS or maybe the Omeprazole, which I think mentioned difficulty sleeping.

It’s great that you’re managing your energy spikes. I started doing similar things too and it does seem to be working.

It’s also amazing how laying down for 10-20 minutes with your eyes closed can also recharge your batteries.

@MillStone I take Kalms myself, just the day ones before going to bed but the night time ones are a fair bit stronger. They will have a gentle effect so might be worth trying?
Yes, I wonder if the omeprazole is affecting sleep?
I had to take it a while ago when I had terrible gastric pain, just before I discovered I had developed coeliac.
Slippery elm capsules are worth a try for stomach inflammation too.
For gut stuff, I used something called PepzinGI and ate a lot of homemade Kefir.

@TiddleTaddleTat Thanks for the advice

I’ve ordered some Velerian root pills off Amazon — Same day delivery

Homemade Kefir sounds great! I’m drinking a lot too but it’s from the store. It’s not too bad but I bet homemade is great.

Will look in to slippery elm! My stomach is actually fine, it’s a painful oesophagus that Im taking Omeprazole for.

Incidentally, if anyone else is taking it, would you mind sharing your dose please? I’m on 20mg twice a day but thinking of trying 1 in the morning.

Just got result of antibody test (venous blood from clinic, Abbott test) and it’s negative. I’m gutted as now I feel very vulnerable. Either this isn’t COVID in which case I really couldn’t cope if I got that too or I haven’t developed antibodies in which case I could just catch it again (and I’m not sure I’d cope). I’m also concerned that this means the docs will start to label my symptoms as anxiety etc.

I know others have had similar experience though which is reassuring. I’ve had changes on chest X-ray (now resolved) and bloods that suggest I’ve been fighting something (low white blood cells) so it can’t just be in my head.

@MillStone sorry you’re suffering with heart symptoms too. It’s very worrying. Hopefully your echo will provide some reassurance or answers - do let us know how it goes.

Thanks @Needsomegoodies will do! How is your heart?

@Needsomegoodies. Sorry you're so disheartened by your test result. It must be frustrating. 1 in 7 people won't produce enough antibodies to be detectable (according to the doc on radio 2 yesterday anyway).

@Needsomegoodies, sorry to hear about your negative result too. I've just had a venal one today and fully expecting it to be negative too as a private one I had was a few weeks ago. Apparently a lot of people fight the virus off with T cells - some people have a positive swab and still test negative for antibodies. I know exactly how you feel re; vulnerability. When my result comes back, I'm going to turn it back on the doctor and say this must be another health issue that needs investigating then and ask for other tests, even if I have to go privately.

@MillStone, the heart issues sound awful - did your blood test include a test for any heart issues ie; raised troponin? Apparently it's very common for viruses to temporarily affect the heart but issues resolve when you get better. Glad you're getting an ECG which will give them a fuller picture.

@Needsomegoodies sorry about your antibody test. Mine was negative too. Birmingham NHS are telling people there is a 20% false negative rate due to mounting just a t-cell response etc in some people.

Day 80/81 and I feel fine (although slept badly with night sweats). Worked all morning and might risk a short walk. My heart-rate’s still high though and no sign of a cardiology appointment yet.

Hey @Lightsabre good luck with the test result Pressing thumbs for you.

Thanks for the info. Hope it does. Yes I had A troponin test about 5 weeks ago when I first attended A&E for an ecg and X-ray. It was fine then and my heart was significantly worse. I had another ECG a few days ago which was fine.

On last week’s bloods, I wonder if troponin was a repeat test.. I guess yes because of the heart investigations and the call for a heart ultrasound (echocardiogram).

CT scan of lungs is in a few hours. Don’t think I will get any results for a few weeks Until all tests have been made.

It seems like no matter what test anyone has it’s always clear!!!

Hope your day is going okay.

Hey @Egghead68 have you had your 24hr ecg yet? Hope you’re well.

@Needsomegoodies I'm sorry about your results. I too had a negative antibody test and completely understand how you feel.

To you and @MillStone I've had very similar problems with my heart too, and also a feeling of being in a continual heightened agitated state. I got a private referral to a cardiologist who said there was no damage but I was experiencing arrhythmia, as a result of a virus. It did give me some peace of mind. I still get days when I experience these symptoms but they're not all the time now. They're the pits.

@MillStone I've been taking 1 omeprazole a day until recently but just increased to 2 to see if it can sort out my current oesaphagus problems. I just asked my GP if I could change to a different medication, famotidine, which is very popular in the States and less side effects but apparently there is a nationwide shortage.

Just had yet another phone appointment with my GP. He's very patient and we spoke for about 20 minutes but getting a bit rankled that I can never have a face to face. He's totally onboard with long tail symptoms and possible false negative antibody tests. However he wasn't much help with my swollen oesaphagus. He says there's speculation among his peers that what we're experiencing is related to damage to the vagus nerve (an idea that has been floating around on forums for a while) and therefore I should go on antidepressants to try and calm my nervous system. I sort of get this, and he's definitely not saying it's all anxiety, but at the same time it is just speculation and I sort of feel a bit dismissed. Oh and blood tests back... all normal of course!!

hey @fedupofbed thanks for the info and sorry your struggling with your oesaphagus.

Damage to the Vagus nerve. That sounds bad. Any mention on it repairing itself?

Hi @MillStone. I am glad you are getting all these investigations done. Still no word on whether my local hospital has accepted the urgent referral from 24-hour ECG and echo. I’ll try chasing again tomorrow - it’s exhausting. On the whole I think things are heading in the right direction though. My resting heart rate this morning is 84 (yesterday around 100) and sometimes these days (but not every day) it gets into the 70s in the evening.

Hey @Egghead68 great things are going in the right direction. Yesterday I noticed you said you we’re keeping your HR under 60%, maybe that’s really helping too.

Hope you get the hospital appointments sorted soon. That’s really frustrating.

I’ve found breathing exercises and mindfulness really help lower my heart rate.

I just googled Vagus nerve healing and it lists breathing exercises as a great way to stimulate it.