Hello all.I've struggled with a health condition for over a year now and am having trouble with a diagnostic. I am 33 and prior to the attacks was fit and healthy. I have been in countless ambulances due to the severity however after further tests in hospital always get the all clear. The issue is the attack only ever lasts for 30 minutes and sods law, after a stress test, heart monitor and xrays I never had any symptoms.
Symptoms.
I always feel it coming on and feel extremely weak, my chest (It feels like my heart) slowly starts to tighten at which point I put myself in the recovery position and wait. The pain slowly increases feeling very heavy, at which point both of my arms begin to feel very painful and my wrists become unbearably painful. Depending on the severity, on a few occasions I violently vomit. At this point I am to weak to talk or move, i'm soaked in cold sweat and on every occasion turn blue. Although on every occasion I get hit with dizziness, on only 2 occasions have I lost consciousness when I havnt taken myself to the ground. I then spend 15-30 minutes on what feels like a fight to stay alive before it passes completly and I'm out for a day or two feeling exhausted.
*Causes
Directly after exercise, it can be 5-10 minutes and I'm currently banned from the gym. I tried swimming but unfortunatly had another attack so had to stop.
More recently*
Twice directly after a shower and what has completely made me freak out is twice after puting on cologne.
Has anyone ever seen or heard of these symptoms before with a niche diagnostic?
Please help!
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Randomperson89
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Sounds very scary for you. I guess it's hard for dox when you're recovered by the time they see you. Is it possible you or someone could film what happens during an attack? Set up something whereby you would just have to press a button when you feel it coming on? So frustrating when all tests come back normal. Maybe ask for a heart monitor which will record it? Good luck. Happy Easter if you can.🤗🐣
No it's not scary at all actually. It's very dissapointing. I don't see how filming it would be beneficial to anyone with such acute symptoms?
I'm honestly seeing if anyone in the thousands of people on a health forum dedicated to heart and lung concerns have had similar symptoms and diagnostic and if a full recovery is possible.
I just meant that you could show to doc how your attack affects you to give them a clue, as you're recovered by the time they see you so have nothing to go on. Good luck finding an answer.
You should ask your doctor for a stress test. So they monitor your heart and lungs and gases while you exercise. They gradually increase the exercise to see what happens. its monitored by doctors, Mostly done in a hospital or clinic. It may give your physicians more answers.
I've had a stress test where they monitored my heart and lungs but I can't imagine they had the equipment set up for gasses? Sods law, on that occasion I had no attack and I waited behind for 30 minutes before leaving.
I've had a CT scan after which I was discharged from the cardiovascular department and have reopened the case with the gp after another 2 attacks.
Thanks for your advice. It's a grim reality when knowing you have to have an induced attack prior to a diagnostic but I'll continue my search for anyone with the same symptoms.
That sounds very distressing but for the hospital not to have diagnosed the condition after so many episodes would worry me too. I have no idea what this sounds like and we're not supposed to diagnose on this forum, however, as the major symptoms involve chest and arm pain, it may be worth talking to one of the cardiac nurses at the British Heart Foundation. They can advise you on what to say to your GP and what tests are available. Testing appears to me to be the way forward for you.
I wish you good luck in your endeavours and the answers you're looking for.
Thanks so much for the advice, it seems to be one of those mystery illnesses. I've already done a round of cardiovascular tests and had no joy. I'm hoping this round catches something or I find someone who's had similar symptoms.
I had 20 years of mystery attacks, collapses etc. Eventually they proved it was very quick, nasty asthma attacks. My asthma nurses, uses an old fashioned phrase, and calls it brittle asthma type 2.
I had few of the normal asthma symptoms, just chest pain, chest tightness, and dizziness, so I ended on the floor, unable to talk or walk.
I was fine before and within a day of the attacks.
My attacks are allergy based, so cologne could easily cause it.
Look it up on Google and see if it is similar to you.
I was diagnosed as the attacks became more frequent, from very rare, then yearly, then monthly, and the cardiac department somehow worked out it was asthma. An asthma nurse confirmed what it was with basic spirometry. Blood tests proved what I was allergic to.
This may be completely left field but have you asked to be seen by neurology? The underlying cause may not be specific to your heart or lungs. My husband and
I both suffer from a neurological condition that has many, not all, of your symptoms and it took ages for it to be finally diagnosed through neurology and given the correct treatment.
That must b really scarey for you….as fraid said…would b an idea to film episode. Hope they get to the bottom of the problem soon so you can get back to living your life.
sorry to hear this happening to you, very frustrating not to get an answer yet. As a diagnosed asthmatic for 25+ years it’s painful getting to understand what exactly is going on and how to manage it and it’s a frustrating process ( at least for me for a long time). My thoughts are (a) keep doing what you’re doing, ask qs (it will be figured out - eventually). (b) a&e manage symptoms and yes they can diagnose but do way more and go ask for doctors that are good at diagnosis, frankly some are better than others. I’ve had a&e doctors think I was drunk / on drugs when I couldn’t speak and therefore got a gp letter for my bag so if I ended up in a&e I handed the letter to the docs and it cuts out a lot of time to get a neubiliser. (c) do exactly what you’re doing ask on these forums maybe someone might know (d) if there’s a sports clinic / sports physio go there see who they might recommend. A video is good if even to cut the qs on what exactly happens as it wastes your time when nurses /doctors are wondering what to believe, they come accross lots of people so I understand why they do but it just cuts through it quicker if you’ve a video. I’ve had a&e think I’ve had a stroke because I couldn’t speak, if it’s sports induced ask the sports community - you might catch a break. So very sorry this is happening to you, I’ve no doubt you’ll get to the bottom of it, just keep asking qs ( as you are). I know what a pain in the ass not knowing how to manage a condition is - don’t give up. If someone isn’t helping find someone else.
First, let me again point out that I'm not a physician (or any other kind of healthcare provider), but have firsthand knowledge of what it's like to go years without finding a doctor who 1) believed me about what was happening, 2) was determined to figure it out -- and ultimately did -- diagnosing me with an extremely rare disease, but it took a team of doctors working together to do so.
If individual doctors haven't been able to diagnose you, a team might be the right approach.
2) Instead of individual physicians/specialists, you might also benefit from being examined/tested/tracked in a major research hospital.
I live in the US -- I pretty sure things ate different in the UK, but maybe not so much in this area. Major teaching medical schools are also usually affiliated with major researchers. I'm lucky to live in Washington DC, where eventually all my doctors were at one major uni-med sch--hosp. I also have been referred to the Us National Institutes of Health (nih.gov) -- y'all probably have something similar.
3) You need every possible bit of evidence to show doctors. Remember they are trained to follow scientific evidence, develop hypotheses, and eventually narrow it down to a diagnosis. That's a long process in uncommon cases like ours.
You said you turn blue -- how do you know? Where? For how long?
It sounds to me like you are describing an anaphylactic reaction -- but luckily one that doesn't deteriorate to death. The collapsing, inability to talk, profound weakness that persists -- are symptoms most of us with a history of anaphylaxis will recognize.
Do you have a pulse oximeter at home? A portable blood pressure machine and self-inflating cuff? Carry them with you at all times. Do you have a smartphone? Make sure you have enough memory and know how to record videos. When you feel one starting ask someone to video it (and get their name and contact info for more questions later).
And I'd make certain to have emergency medications on hand, just in case this is ever trigger by a reaction to a food, bite/sting, inhaled substance (doesn't have to be perfume), etc. Carry LIQUID Benedryl (I have no idea what it's called in the UK). If you're having an internal reaction, you might have trouble swallowing a tablet or capsule. The liquid will go down easier, it's the child's dosage so you can take a lot of it without a problem, and it won't hurt you if you AREN'T having an allergic reaction. (It's frequently recommended as a mild sedative, so it may make you sleepy, but it's unlikely to cause any problem.)
But discuss WITH AN ALLERGIST first.
Write back and let us know how you do. And try to get seen in a research/med school -- all those bright students wanting to solve the mysteries are just what you need to scour medical journals, check your symptoms against rare conditions, and fond ways to treat it without a firm diagnosis (also not uncommon in the world of rare diseases).
You could try having a chat with your GP about whether these are panic attacks. I am not downplaying the scariness of them at all - you need some answers. I am just suggesting that examining the possibility might be helpful.
Yeah I have questioned it myself but in all honestly in each attack it tends to be the first aiders having a panick attack. I usually calmly direct them as to what to do, untill I can't speak anymore and the ambulance arrives.
On each occasion after not finding the issue I have been advised it may have been a panic attack and anxiety.
Reason insues however, without further tests there can be no diagnostic.
I obviously want to rule out if it is my arteries etc. The small thing's nobody can see unless checked. Unfortunatly the very same things which allow for speculation.
I had a long respectable career prior to my demise. I'd like to hope I'm telling the truth when I can honestly say, I am not scared in the slightest, just dissapointed and frustrated. I generally don't suffer from anxiety.
I'm sure we'll get there eventually.
I was hoping somebody had experienced this and had a solid diagnostic. After a few days on what has to be one of the more comprehensive forums I can only assume it is rare. Lucky me.
I'll go through the motions with the cardiology department and fingers crossed it's an inhaler or a pill 🤷♂️
I agree with the thoughts above re anaphylaxis that did cross my mind, but I’m no expert, I carry epi-pens since I had covid vaccine but I’m not an expert in the area, I recently watched an episode of bindi rescue and it was fresh in my mind that cold water caused anaphylaxis reaction …. I don’t know what anaphylaxis really is, I only know the throat closing which is what has happened to me, but ask the doc as from what I read it’s way more than throat closing.
Here's an update for anyone else who may have to endure this absolute rubbish. Unfortunately, I have been rejected by the cardiovascular department twice after appealing and referred to a neurologist so they can study my brains. They have already previously said it doesn't sound like it's neurological after a consultation over the phone. The world has gone mad. I wish you better luck.
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