just had phone call from cardiologists Secretary, nothing wrong with heart, 6 day ECG monitor showed nothing so good news but what is causing me to faint, erratic blood pressure, erratic heart rate ?
My pulse drops from 80 to 40 at rest and back up sometimes in minutes, sometimes in hours. My BP can be high and has caused at least 2 TIA's, MRI showed a stroke. MY BP was dropping on standing but doesn't seem to now but it still goes lower than my normal along with pulse. I don't know where to turn, the palpitations keep me awake most nights recently.
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arnieatmo
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Keep insisting they do more tests. My tests came back ok too but I kept going back and eventually got diagnosed with rare heart problem called a myocardial bridge which is a nightmare
Have you been told further investigations are being ordered, or another consultation appointment with the cardiologist? Have you been referred to a neurology clinic regarding the stroke the MRI showed? Are you scheduled for any follow-up anywhere for any of your symptoms?
I have appt with cardioon 5th to follow up on these ecg results. Stroke clinic discharged me with pills. Pain clinic fobbed me off with "vitamin D" me after full spine MRI was clear despite the previous doc saying 'even if clear we will do everything to discover what's wrong' obviously something wrong as I failed balance tests, strength tests etc. he was brill doc & I was gutted not to see him when I went back. I did ask for him but have been ignored.
Can you book a quick appointment (ten minutes, I call it 'a tenner') with your GP to discuss your feeling of being fobbed off (been there done that but not with my current medical team, amazing what a six mile house move to a different post code can mean!)? I would be worried especially about the stroke - something caused it and you need a detailed explanation of what that something was, and what steps you need to take to prevent it happening again.
Without precise location, are you by any chance in NE Scotland? I ask because my old surgery merged with one across the road and around the corner - and my goodness are the patients not at all happy
I'm quite grateful to the NHS and the care I've received...since moving six miles and registering at the new surgery. Night and day difference, shocking and amazing.
My husband has a different condition but some of the things that bring on a flare are like yours so you have my sympathy, I know a bit of what it's like to cope with those triggers.
I had countless Holter monitors (many different time frames, like 24 or 48 hours, 1 week, 2 weeks), a 2 year implanted loop recorder, many EKG's, echos, angiogram, cardiac MRI, BP/heart rate doctor's office monitoring, etc...but it wasn't until a random day at home that my Omron BP/heart rate/arrhythmia detector cuff picked up an abnormal rhythm and doctor later confirmed it was ventricular tachycardia!
Luckily I had finally received an ICD by that time, but onlyafter a five year wait of practically begging (due to known family history of HCM and SCA) and results of a definitive gene test!
So...sorry this is so long, but it proves my point that oftentimes people need further testing than a short term monitor.
Given your history, I am surprised your doctors haven't suggested further testing.
LOL you're right there. I went to A&E when my heart rate dropped by over 50% at rest, doc said I needed some tests but on checking with his senior on duty twat, told be there was nothing wrong with my heart, you seem anxious (and so would you be sat out there for 4 fecking hours wait).
My suggestion that a Cardiologist may not always be right or the idea that as a patient you can be an expert by experience does not sit well with some.
Yes, the old "it's anxiety" BS diagnosis! My cardiologist that said that had to eat crow after I had ventricular tachycardia and was diagnosed with hypertrophic cardiomyopathy. Of course, he didn't admit he was wrong, but I wanted to rub it in anyway!
This is a copy and paste of what I posted a few days ago.
***I had countless Holter monitors (many different time frames, like 24 or 48 hours, 1 week, 2 weeks), a 2 year implanted loop recorder, many EKG's, echos, angiogram, cardiac MRI, BP/heart rate doctor's office monitoring, etc...but it wasn't until a random day at home that my Omron BP/heart rate/arrhythmia detector cuff picked up an abnormal rhythm and doctor later confirmed it was ventricular tachycardia!
Luckily I had finally received an ICD by that time, but onlyafter a five year wait of practically begging (due to known family history of HCM and SCA) and results of a definitive gene test!
So...sorry this is so long, but it proves my point that oftentimes people need further testing than a short term monitor.
Given your history, I am surprised your doctors haven't suggested further testing.
I do certainly hope you get some swift answers!
Please do keep us updated & take care!***
Besides all the other tests I had that didn't show HCM, I had a cardiac MRI in 2005 and definitive gene test in 2009 that confirmed hypertrophic cardiomyopathy. Finally, in 2009, after all that and them knowing family history beforehand, I finally received an ICD/pacemaker.
OMG how terrible!! to go through all that I feel for you. I've been ill for 12 years in Feb 2020, but with MECFS, Fibromyalgia, nerve damage and stuff but only been the lat year (I think) that been having these palpitations, I will get answers, I'm sure my crap is down to CNS/stress overload.
I am sincerely sorry for your health issues, I can definitely relate with the chronic issues! This is just my heart situation, I also have had horrific misdiagnosed gastro problems for years, DVT/PE, and "lesser" issues such as anemia, thyroid problems, psoriasis, etc... Seems I turned 30 (many years ago and all went down hill! HAHA!
As you can see, a sense of humor plays a big part in my life!
We all have those days (weeks, months??) when we feel like that, believe me! It's not always fun & games by far, but it's definitely a choice one has to make.
I once had an ICD/pacemaker tech ask me how I could be so calm & lighthearted (pun intended) when my ICD malfunctioned and I had to get a replacement (on top of the other things he knew about that I was going through), and I told him, simply, it was my faith that carries me through! And I choose my reactions, my feelings, my thoughts, etc... to have a good impact on my physical as well as mental health!
This is one of my favorite quotes I try really hard to live by..."Worry does not empty tomorrow of its sorrow. It empties today of its strength" ~ Corrie Ten Boom
Good for you, I'm impressed and very pleased it helps you. I've lost faith, I've tried everything, I think I should give up trying to find answers and just carry on as is.
Yep! My congenital heart disease was misdiagnosed as anxiety and/or depression for 25 years and then told my endocarditis was anxiety even when I was on the point of death... now I have a real mental health condition, PTSD!
It's brilliant what they've done, I've read this. I'm a bit obsessed with reading everything I can find about the subject now! I agree it's because of sexism and partly because once they give a person a mental health diagnosis they put everything down to that, I've found out it's called diagnostic overshadowing, and it's one of the reasons why people with a mental health diagnosis have a life expectancy 20 years shorter than the average person. Of course, the current narrative is that people with mental health conditions are afraid to ask for help with physical illness, neglect themselves and live unhealthy lifestyles, but as far as I can see, we are often misdiagnosed with mental health problems, and whether or not we have real mental health conditions, we beg for help and get turned away.
Awful I feel your pain. I have congenital heart problems too. Myocardial bridge which is a nightmare to live with and the cardiologists dealing with it are another nightmare. I wish you well
I have a horrible feeling it might be anxiety, i do suffer bad with it despite the clonazepam. But from what I've listened to on youtube anxiety is more like a tachycardia symptom not the bradycardia that I'm getting.
Understand what you're saying tho, they don't do our stress levels any favours!
Hi Arnieatmo, I agree with what you've listened to, I've never heard of anxiety making anyone's heart rate drop to 40. Has a doctor told you that your symptoms must be because of anxiety? I would push for more tests, and perhaps ask them whether the symptoms might be because of any other physical health problem. It must be very difficult and scary and I hope they get to the bottom of it soon, sending best wishes and I hope you slept a bit better last night X
Senior doc on duty at A&E said I seemed anxious when I was called in and so as far as he was concerned .. nothing wrong. I see cardiologist this week after my all clear ECG, see what she says and ask plenty of questions. Thanks for your kind words, HR & BP have been high this week, no pattern or triggers. x
Stupid A&E doc, he should realise that being ill enough to go there would make most people anxious, and that people with anxiety issues get sick too! How invalidating and upsetting for you. I hope your cardio appointment goes better, good luck, let me know how you get on xx
This has been a topic often expressed by the concerned Patients over..
let's say, several decades?
Politicians never seem to want to address it
except on a small scale sort of way.
Example: obesity kills campaign by a well-known charity.
As far as I am aware, insulin resistance/diabetes has been a
major risk factor in several diseases other than "mainstream" Cardiac diseases.
NHS cannot keep dishing out free heart bypass ops whilst they still are. That itself costs a fortune. At the end of the day, clogging artery is a result of a long-term lifestyle problems that need changing. NHS can't keep saving people, who love to carry on the way they did over the past several decades i.e. dependency on fast food, processed meals, smoking, excess drinking. Some people "hate" to hear that. But that's just the fact. NHS got to tackle underlying causes (early preventative measures) to cut the bypass costs and all the expensive rehab programs that follow.
I do admire Patients who radically changed their lifestyle after the bypass, however. These patients are so inspiring. But those who keep expecting the NHS to "fix" them again for FREE to clean up their lifestyle problems down the line, I have no respect, to be honest. Nobody likes a change in their lifestyle, but NHS can't afford it.
This still leaves no/little money left to deal with other types of Cardiac conditions (likely chronic in nature) and you are sent home after branded as "a time waster", treated like wasting their precious resources. Many of us who have systemic chronic illness(es) are punished by the system.
Ageing is a big driving factor in a number of chronic diseases. As we grow older, we develop several conditions. How would the NHS deal with us? They need to review the situation, urgently. Mine took about 10 years to finally be taken seriously.
I get to read women, who had serious heart events/strokes were dismissed as "anxiety" and told to go home without any sort of treatments is really "criminal" to my mind.
NHS is great on something but they are not very good at others.
I used the private care provisions in crisis (I had strokes, Cardiac related). If I did not have access to the private care, I would have been much worse off.
But if someone is on a "clogged artery" conveyor belt at Vascular Clinic or Cardiac department, you are more or less a priority on the NHS. That's their main customer base that they deal with.
But they also got to realise that there are other groups of Patients, who need their help on the NHS.
My perception changed recently after sharing some time with a couple of other patients, who are not interested in lifestyle change whatsoever. I do not feel they were unusual. One was on 30 medications for the diseases associated with diabetes, including blindness. She already lost some toes and refuse to change her diet, a big fast food fan. Now, she's telling me the condition is affecting her Brain.
Well, no brainer. Heart and Brain are connected.
I often did wonder if it's only a small minority of Patients, who decided to change their lifestyle. Others, simply expect the NHS to give them a solution, more bypass or more medications without any lifestyle change.
No. I don't believe that it's the fault of people with unhealthy lifestyles that this happens. I believe that it's due to stereotypes about women and people with real or erroneous mental health diagnoses. I certainly don't think people with obesity are given more medical attention and help than anyone else. In fact they're another group who are often dismissed by doctors telling them they just need to lose weight even for unrelated problems. Additionally, many medical conditions, eg pain preventing exercise, make it far harder for people to lose weight, so it's hard to judge whether a person is fat because they're ill or ill because they're fat.
Get your thyroid blood test. I was overnacrive (hyperthyroidism ) my heart was nearly jumping out of my chest. It’s a horrible feeling. Good luck
Well I see the cardio, my BP at the time was 182 and it has been high this last few days 160 to 170 along with a constant headache, however she averaged my readings and said she was happy, blamed the days reading on white coat syndrome!! Sending me for possible tilt test or under the skin monitor as the 6 day ECG didn't show anything when I fainted.
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and all went down hill! HAHA!
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