Undiagnosed condition

[Randomperson89]

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!

[Tos92]

Hi Randomperson89

I’m so sorry to hear about these symptoms you’re having. I can imagine you are quite scared and anxious.

Please avoid doing any exercise and limit any strenuous activities you are undertaking until your symptoms are well managed.

There’s so many members on here which will be able to steer you towards the right direction hopefully, but I just wanted to express my best wishes to you.

Praying it gets better for you.

Tos

[Randomperson89 in reply to Tos92]

Hi Tos,

Thank you for your reply.

I'm not scared or anxious in any way shape or form. I'm a bit dissapointed to be honest. I've basically accepted I probably won't see the next birthday but it would be nice to know what's taking me out.

[Tos92 in reply to Randomperson89]

Some of your symptoms do sound cardiac in nature to me. Others will be able to give you a better idea.

During these episodes, I appreciate it’s probably quite hard, but have you been able to check your heart rate at all?

Have you ever had an angiogram?

[Randomperson89 in reply to Tos92]

The ambulance crew's have been great and always arrived within 10 minutes when called. They get the heart monitor on straight away but I'm either coming to the end of the attack or there is no indication it is my heart. No palpitations, maybe once but the readings are always fine as is blood etc.

They continue with an extensive monitor in the hospital but again no signs of anything wrong.

I havn't had angiogram as of yet.

[Tos92 in reply to Randomperson89]

As you remain very symptomatic, I wouldn’t leave them unchecked or un-investigated.

An angiogram shows if there are any blockages to your arteries and, or narrowing. It can also show congenital heart defects. I have something called a myocardial bridge and this was discovered during an angiogram.

Are you currently under the care of a cardiologist? It might be worth suggesting this to them. Hidden has also mentioned an echocardiogram, which is a straight forward, non-invasive procedure and can also reveal other things about your heart health.

[Randomperson89 in reply to Tos92]

Many thanks.

I'm soon to be under the care of a cardiologist and will assume they will further investigate with the suggested tests.

I was posting on the off chance someone had already experienced these symptoms and had a clear idea what I was up against.

Thanks for your replies.

[Randomperson89]

Hello,

To be perfectly honest I'd imagine it's my sense of humor in coping with it. I'm not overtly dramatic but I'm trying to give you a sense of how bad these attacks are. It is petrifying when they happen, although I'm in double figures now, on each occasion I question if I'm getting back up. However, being in double figures, I'm pretty numb to caring anymore. Shocker.

To be clear, I fully support the doctors and the NHS, the reason this is and will remain annoynomous.

I don't believe I've had an echo cardiogram. I believe it is my heart because it is primarily my heart which is in pain throughout the attack.

I've bungee jumped, that's adrenalin. This is not.

[Randomperson89]

Thanks,

No unfortunately I was discharged after a CT scan but I've reopened the case after another 2 attacks.

To be honest I was relieved when the CT scan came back as negative because I assumed it captured any irregularities with arteries etc.

I'll look into a watch and hope to see the echocardiagram and andiogram soon.

Many thanks.

[Hidden]

My only suggestion to you is to keep a diary which records what you have been doing prior to and during an attack, which you can present to the medics when you discuss your situation with them. Clearly exercise is within the pattern of triggers, there may be other things too.

[Randomperson89 in reply to Hidden]

It's been completely sporadic, sometimes after a few beers the night before, sometimes after a health kick for months. On every occasion it knocks me for 6 and getting out of bed to walk again is a struggle. I'm back at the beginning of the cycle after being in bed for a week and have to start walking again. I'm not superstitious, I'm not into miracle cures or anything of such. I smoked for over a decade and am wondering if it caught up with me. After being cleared on a ct scan I thought I had the all clear. The next stage is awaiting tests on the arteries and tubes. More recently it's been triggered by cologne and hot showers, which threw me as previously it had always been exercise. That made me think it may be the lungs although it is always painful in my heart during an attack.

Regardless, 4 years ago I was a heavy smoker and extremely fit. Unfortunately with my current condition it is seemingly impossible to get back to the stage I was at.

Thanks for the advice. I suppose a diary couldn't hurt.

[MummaSoap]

Hi Randomperson

I just want to start by saying I’m not a medical professional but up until the point regarding cologne, I was thinking this sounded blood pressure related.

Did the attacks from cologne feel different in any way no matter how slight?

I think it could be helpful for you if you could buy a blood pressure monitor and see if you or (preferably) someone else could get the cuff on and take a reading as soon as possible after it starts and then every few minutes until it passes which may give you some insight.

I have experienced something a bit like some of the symptoms you describe but nowhere near to the same extent of severity as you and I’ve never had pain, just a heavy feeling across my chest and back. I feel nauseous and dizzy and a hot wave often washes over me and I’m immediately soaked in a cold sweat. I have on a couple of occasions vomited and struggled to remain conscious whilst doing so.

Sadly I can’t shed any light for you relating to my experiences as I’m currently under investigation to try and determine the cause. What I do know is that a previous holter monitor has picked up SVT (supra ventricular tachycardia) which can be hard to catch on ecg testing so I’m told. What I cannot say with certainty is whether the two are linked in my scenario.

I’m hoping to speak to my cardiologist about getting an ILR (implantable loop recorder) to see if this can determine the cause and help me find a clear path forward. Has this been suggested to you for your situation at all?

Thinking of you and I hope that you can get to the bottom of what’s going on for you!

Best wishes

Soap

[KIMMY60]

You need to see a specialist get your doctor to refer you needs looking into