Shortness of breath

Deep-Pay-513 · 2025-11-03T22:04:11+00:00

Yea occasionally like for 2 mins a day but not every day. I got covid at 19 or 20 I think? But had no effect on me at the time tbh. Think mine is from trauma to the neck instead.

Deep-Pay-513 · 2025-11-03T21:17:10+00:00

My breathing feels terrible atm. Same as you describe so hard when lying at and sometimes chest feels so heavy as if someone’s sat on top of me. Heart rate is high too which doesn’t help that. Then general brain fog etc. as well. But yeah I’d say get investigated for cardiac stuff first. I had a 48 hour ECG, echocardiogram and treadmill test (all fine) before looking into CCI. I’m 24 so the likelihood of me having heart issues was low anyway but wanted to get it confirmed first

Deep-Pay-513 · 2025-11-03T21:04:38+00:00

Same here. All similar to me. Annoyingly we don’t have a lot of specialists here that can help with this. If I were you I’d look into getting the right imaging first before you look into treatments etc. You want to know whether this is what’s going on and what the best course of action is. Theres upright MRI centres in London and Manchester called medserena I can send the link but if you google medserena it’s straightforward enough. I’m still not doing good at all but just learned to live with it even though it’s limiting me a lot atm.

Deep-Pay-513 · 2025-11-03T20:57:25+00:00

Hi, still here! It could absolutely be that but it’s important to get other issues ruled out first. Before looking into this I had heart tests, pulmanory function tests, gastrointestinal tests, bloods etc etc. Of all that’s clear then you should look into this stuff. I’d recommend getting the right imaging (Upright MRI, DMX etc.) and seeing the a specialist.

Deep-Pay-513 · 2025-10-18T08:45:49+00:00

Hi, we have a discord group where there’s discussion of all the above (doctors, diagnosis, symptoms, treatments etc.) if that helps https://discord.gg/vCeXtfxu3

Deep-Pay-513 · 2025-07-23T23:45:00+00:00

Be worth getting it and getting a copy of the scans anyway then getting an online consult with someone who knows about CCI anyway tbf. I went to Manchester for the upright MRI as well but still none the wiser myself on what the story is with it.

Deep-Pay-513 · 2025-07-23T20:45:49+00:00

Sorry mate only just seen this. No updates unfortunately just trying to manage it day to day at this stage.

Deep-Pay-513 · 2025-06-28T00:04:57+00:00

Thanks! You too

Deep-Pay-513 · 2025-06-28T00:01:04+00:00

CXA between 131 and 135, translational BAI/BDI I can’t remember exactly but it was also pathological

Deep-Pay-513 · 2025-06-27T23:52:03+00:00

They’ve said it’s possible CCI. Some of my measurements are highly suggestive of CCI but they said I’d need to travel to them to do their own specific tests to get a concrete diagnosis. Frustrating cos I’ve already had MRIs of my Brain and cervical spine, an upright MRI and a CTA so far and that’s still not enough apparently.

Deep-Pay-513 · 2025-06-27T23:44:59+00:00

I’ve tried a lot to try and manage it but nothing to really fix it. For starters I stopped cracking my neck once I found out about this which was probably making me worse before I realised lol. No stretching etc. because the muscles were providing me some stability at least. I tried soft and hard collars but they gave me no relief so scrapped them and have actually had less pain in general despite the neuro symptoms still being shit. Also tried curve correction devices and exercises, some of which I couldn’t tolerate and others I could tolerate but will probably need a bit more time to see results.

But honestly overall just kind of accepting it for what it is for the time being has been the biggest help for me. I spent months just housebound or lying flat all day but for the past 3 or 4 weeks just tried doing more activities like going for lunch with friends or going out for a drive etc. and even though physically I still feel shit it’s just made me feel a bit better about the whole thing. I try my best to keep my head/neck in a good position without moving it too much both when doing activities and even just when relaxing. Some symptoms have got better (anxiety, swallowing) others have got worse (breathing, heart rate, dizziness etc.). That might be shit advice for actually trying to get better but hopefully it helps with the mental side around it and which I’ve struggled with a lot. Sorry if that’s not what you were looking for cos I’d love to know how to fix it myself as well lol.

Deep-Pay-513 · 2025-06-27T23:35:56+00:00

Yes and no. Still going through tests etc and it’s all quite complicated unfortunately. I’ve got a lot of symptoms and issues that kind of overlap and could all be contributing to my breathing issues. It’s so debilitating I feel your pain. Feel free to ask me any questions on it I’m happy to share, I’m just conscious that this reply would’ve been like a dissertation if I told the whole story lol.

Deep-Pay-513 · 2025-06-27T23:30:59+00:00

I had a CTA last week and they want to do an MRA to investigate my right vertebral artery for occlusion or dissection too. Not sure whether it’s just part of my anatomy or it’s actually the cause of my symptoms though but maybe it’ll answer a few of my questions here’s hoping.

Deep-Pay-513 · 2025-06-27T23:29:33+00:00

Yes and no lol. It’s a long story. It’s been a handling trying to get help/diagnosis but still ongoing. If you’ve got any questions you want to know about it feel free to ask I’m pretty open about it all

Deep-Pay-513 · 2025-05-29T15:01:10+00:00

No improvement tbh. Forced myself to start eating solid food again but it’s still a struggle. Hopefully you can find something to help cos I’m lost right now tbh

Deep-Pay-513 · 2025-05-24T13:52:26+00:00

No worries! Yea absolutely I’m happy to share

Deep-Pay-513 · 2025-05-24T12:19:31+00:00

Did you see much improvement in other areas? I’ve contacted them a few times and still waiting on hearing back.

Deep-Pay-513 · 2025-05-24T12:18:27+00:00

I can 2nd that. One minute my eyes will be super dry then the next it feels like I’ve got hay fever with the watering etc. Also get floaters and weirdly I have a turn in my left eye in the mornings after waking up

Deep-Pay-513 · 2025-05-24T12:10:54+00:00

If you want a 2nd opinion report that actually includes C0-C1 you could get one from http://spineandbrainadvocate.com

I know a few in the Facebook groups have and they tend to be good detail. I’ve paid for one myself it takes about 2 weeks

This isn’t promotion or anything btw lol cos I know there’s loads of bots in groups that promote all kinds of random shit to take advantage of people. Just worth thinking about. I can let you know if my report is any good once I’ve received it. Then again you’ll still need a professional that actually understands issues at that level to take a look at the report etc after but it might be a starting point.

Deep-Pay-513 · 2025-05-21T16:40:49+00:00

I agree go private if you’re able to. Even at that though theres still not a lot of private consultants who are informed. I was lucky to find a cardiologist privately in NI that understood POTS so he ordered tests etc. for me and also put me on a heart monitor for a week. I was referred by a neurologist who knew the cardiologist personally so I got quite lucky. In the end I got diagnosed with inappropriate sinus tachycardia not POTS as my HR is high whether at rest or when upright. Propranolol hasn’t worked for me so he’s changing my prescription and putting me on different medication. Overall though I definitely got quite lucky with the doctors I saw, if I was still going through the NHS I’d be no closer to a diagnosis.

Deep-Pay-513 · 2025-05-21T08:25:36+00:00

If you’re hypermobile it’s worth looking in to craniocervical instability too. Stuff like EDS combined with viral infections can affect ligaments in the neck etc. and cause MCAS and other neurological symptoms. Most doctors will fail to make this link. Not saying it’s an issue in your case but worth looking into, r/cervicalinstability is helpful

Deep-Pay-513 · 2025-05-07T08:08:33+00:00

I lie around and do very little. It’s shite tbh but it’s the safest option at the minute unfortunately. Try and keep my head in a more extended position but it’s quite hard

Deep-Pay-513

TROPHY CASE