Just seen neurologist having been referred by cardiologist. He feels not neurology issue, definitely cardiac related as brain is being starved of oxygen. Took video of event to observe and put on record. Will undertake a head and spine scan just as a precaution. Beyond pissed off with people passing the buck. My walking window has gone down to 6 minutes. This is NOT A LIFE.
Somebody take charge...I am on a cardiac ward in a centre of excellence. I have been in the system 6 months, someone use your knowledge and skills to diagnose and offer a relevant care plan please.
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Dicky-ticker
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I am beyond frustrated, I have been seen by registrar twice in 2 months, the initial meeting and a follow up appointment to discuss how things were progressing. In this time I have had numerous tests and assessments which threw up lots of results. I have been given Bisoprolol, Metropol (too high dose and stopped) offered Calcium Channel Blockers (refused by pharmacist as unsuitable for my BP) Midodrine (for low BP - which I didn't have and caused me to have racing heart and very high BP - which was stopped for safety as in danger of having a stroke) I paid to see 'consultant' in the middle of this, who instigated more tests.
Finally admitted and seen a registrar, a senior consultant and my own consultant, who said refer to neurology.
I don't fit the heart model as per the text books, but somebody must have come across a heart that has extra beats, missed beats caused by faulty electrics. A BP that can go from 166/101 down to 111/58 with HR from 58 up to 126 and exercise induced episodes of feelings of being unsteady, legs don't work, appear drunk, breathlessness and pins and needles in hands.
Anyone out there got a possible diagnosis, you don't have to be qualified, just experienced in being outside the box.
It's not POTS I haven't go low BP, they tried that gem when introducing midorine and raised my BP and HR to dangerously high levels. Which is why I was admitted. Hoping my consultant pops in to see me tomorrow, so we can discuss, further. They have to find a fix to clear the bed. Refusing to leave till they do .
I have Thousands of Extra Beats, Missed Beats and Actual Pauses That's with a 7.5 mg Bisoprolol.
My BP has been low 90/60 and my Pulse has been down to the Low 30s Just checked BP 133/70 with a pulse of 67 From dropping down from 10mg Bisoprolol to 7.5mg Pulse has improved to between 50 to 70 bpm.
My BP can still Rise and Fall quite dramatic but since being on Entresto it has become a little more stable !!
I to can have a feeling of Walking Sideways even though I do walk a Straight line. My Heart Failure Nurse puts that down to BP dropping on Exertion / Standing and Pulse Increasing to Compensate.
Currently Moderate Heart Failure EF around low 40s. Had CABG and Stents since CABG. I do have a permanent perfusion defect of 16 % which is untreatable. I think the only thing being monitored closely is the QRS on an ECG because it is widening, despite medication oh and my Ejection Fraction which is low 40s but has been down to 27 %.
I don't really have any pain, uncomfortable at times and Breathless from out of the Blue with or without Exertion but hey ho still here !! Taking my wife out for Lunch to a quite posh restaurant for her Seventh Birthday today.
Hope that helps a little I think I do understand what's gone on and is still going on with my Heart !!! ( I Hope ) not quite LOL just a Smile
In my long nursing career I took care of a patient with pseudochromacytoma which is related to fluctuations in the catecholamine and Adrenalin levels. I am NOT suggesting this as a diagnosis. But it gives a good explanation how stress and hormones affect the body and can mimic different health problems. journals.lww.com/jhypertens...
Not good news, and I, like others, share your frustration - pass the buck is not the way to inspire confidence just when we need it the most. Yet we're seeing it more and more often these days and sadly it's not just the NHS doing it, it's private as well (heh. ask me how I know this).
Now this isn't good,you need one person to listen and get to the bottom of it once and for all. Your brain being starved of oxygen has to be a too higher dose of Bisoprolol. I wonder what would happen if you come off all tablets? The way I see this is I am ruling things off by researching and I for one cannot tolerate any tablets, even that doesn't sink in with most professionals.
Could you have had a viral infection such as the flu as apparently this can enlarge the heart and cause faulty electrics which is what I think mine might have been? 🤷🏽♀️I do hope you get some answers. Wollf-Syndrome and Ashman beats? Maybe.
I think I am sensitive to BB's had Bisoprolol 1.25mg upped to 2.50mg whilst on ward. Did stop for fortnjght under GP supervision of GP to see if that relieved collapses. No difference. Had other BB 100mg out me in a state of coma for whole weekend, stopped those. Put me on midrodine and stopped those on admitting to hospital. Not got cold or virus. With video evidence, hopefully one of these ever fellows will think, before they guess a diagnosis. Will Google wolf syndrome now. If I could post my video on here I would. Answers on a postcard please.
Morning I had a h a in March this year and an over active thyroid that also causes the bp and heart rate to do cartwheels
I wear an Apple Watch I have a kardia Ecg reader you can get them on amazon also used by out patients works with your watch and also a blood pressure monitor
I also get high and low heart rate if I have eaten something my body is sensitive too I.e no dairy
Just extra questions hope this helps
I use all the above to help inform the medics when I am away from them
I hate how they 'threatened' you with neurology. My 'threat' was a psychiatrist … (who went on to diagnose cptsd…. but as I said to him, I'm not worried who diagnoses my problem as long as they get it right)...….mind you, it didn't stop me from having that mi which 'seriously' damaged my heart big time. My father died in his forties, both my brothers have the same probs. My daughter's journey has just started ! There's no weight/alcohol/smoking probs - just good old genetics ! Yes, there are scans and tests etc....but why don't they just LISTEN to you. All the best, thinking about you and all the other casualties of the health service. My daughter and grandchildren pay insurance and use the private services.
Believe me I didn't want to 'not believe' what the nhs were saying - but knew differently. So I went to see an Electrophysiologist (EP) privately - about £250....who then referred me back to the nhs.
U need to see an EP Electrophysiologist. U pays yer money and then get referred back to nhs. They're heart specialists first and now look at the 'electrical physiology' of the heart. I have too many ectopics with different names. Too many ectopics ARE bad for the heart. Started in my late teens.
I've already paid privately in August to see my EP privately £200 +£55 ECG +£84 to private hospital. He organised the MRI and treadmill test. Then reverted back to NHS, this sadly meant going back into the out patient drawer till diaries October appointment.
My care has been abysmal sadly, and I think the hospital are now realising this, after viewing my timeline, because its truly dreadful.
I wish you well in your 'cause'.
It shouldn't need to be a cause, but NHS has to operat eon a restricted budget and I'm quite sure decisions now are made on best use of funds - ans yours seems to be taking too much of Cardiology budget.
Sorry if I sound cynical - but i spent a year fighting for a diagnosis of Lymphoma - only to be passed off as having some sort of unique hernia. 6 meetings with ever increasingly 'knowledgable people' - all of who greeted me with "ah yes, you're that chap with the odd hernia".
Then one day I got a phone call - they were in a flap, they didn't know how they could've missed it - but sorry to say I may have Lymphoma and it needs to be treated ASAP.
Needless to say all went well - but now I'm told I'm 'enoying a bout of heart failure (only in the UK)' - I find myself all rather laid back as to how this is going to pan out.
But like you, I shan't sit on my laurels waiting for budgetry concessions.
So once again I say 'good luck' with getting your conditon suitably diagnosed and treated.
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