Want to scream!

[cmep37]

Sorry in advance for the rant!  I had an appointment with my cardiologist this morning - I haven't left the house since July, the hospital is over an hour away in the car and my appointment for 9am but I decided I needed to go as on the NHS in the UK you can only miss 2 appointments before the consultant refuses to see you and refers you back to your GP.  I wasn't expecting much, he had told me last time that I had tried all the available meds without success and he didn't know what else to do with me but I did think he would at least be pleasant about it.  Instead he made me feel like I was malingering, that I shouldn't be experiencing the level of symptoms I am, that the meds I tried should have worked for me and that it is all my fault I am sick.

My appointment didn't start well - I was late and had to walk quite a distance so by the time I got there I was retching loudly and had to lie on the floor.  He sent a nurse to tell me that if I didn't calm down I would have to go to A&E - I was perfectly calm, that was how my body usually react to being upright for too long but as always it's assumed to be anxiety.  Thankfully the nurse listened to me and found me somewhere to lie down for half an hour by which time I felt much better.

He looked at my last Holter (24 hour HR monitor) and said there was nothing much wrong with it as my average HR was 57.  I was having it done for bradycardia, not tachycardia so treated it like a usual day and didn't spend that much time on my feet (if I spent all day walking about I would trigger a massive flare). The last Holter I had done for tachycardia, I did try to behave more like a normal person and my average HR for the day was 102BPM with multiple episodes of tachycardia over 140BPM  but he completely ignored that one.  Even on this Holter there were multiple occasions my HR increased by 40-50 BPM inside 5 minutes where I had indicated on the report that I was standing and when I first got out of bed it increased from 65 to 152BPM in the space of 5 minutes.  He dismissed the bradycardia as well - he said everyone's HR drops at night when they are sleeping - I said that I wasn't sleeping, I was awake until 2 am at least that although a HR of 42 may not be that bad to him, I am very symptomatic and feel like an elephant is sitting on my chest. His next comment was that my HR dropped but didn't stay low - I explained it didn't stay low because it is so unpleasant I get up and move around to increase it as I still have POTS even when I am bradycardic.  Actually now I'm home looking at the Holter results it had dropped to 45BPM at 9.30pm - I don't think that's normal but now he has me questioning myself?  He then commented that with these sort of HRs he can't understand why I couldn't tolerate Ivabradine which I stopped taking due to increased bradycardia.

He then proceeded to say that on my TTT to diagnose POTS my HR had only increased by 32 BPM at 5 minutes, so I barely met the criteria - I was really angry then and told him that my HR had started much higher than normal as I had walked through the hospital and wasn't given enough time to rest before starting the test and that the doctors decided to stop the test at 14 minutes as my HR had reached 172 BPM (an increase of 74BPM) with no sign of slowing. He replied said yes but your BP had dropped as well (it had but only slightly from 132/86 to 114/82) and it's not supposed to do that to be diagnosed with POTS.  I then asked him if he was telling me I didn't have POTS so he backtracked and said that I did but you got the impression he wanted to add "just not as badly as you are making out".   

I said that I had found a hospital in London with a clinic specialising in autonomic dysfunction and asked him if he would write to them and ask for advice on treatment.  He refused and said that even if they agreed I had autonomic dysfunction (IF?? I didn't think there was any doubt. about it ...) there was nothing more they would do that he hadn't already done because he was following national best practice guidelines.  I then asked his views on telemedicine - I am considering seeing Dr Blitshteyn via the internet and I explained her qualifications and experience to him to which he said it was up to me but that he believed American medicine is all guided by money rather than what is good for the patient and that people who may seem reputable on the internet are often not what they seem.  I said many people on this support group had been helped by IV infusions and he said he would not support them, even if Dr Blitshteyn recommended them as they were only for acute situations and that I should be very careful not to believe everything I read/heard online.  He doubted she would be able to do any more than he had but he would review any reports she made if I sent them to him and my GP could prescribe any meds she suggested.  When I said one of my biggest problems was retching and vomiting he said he had never heard of a heart issue causing that kind of problem and that he would refer me back to gastroenterology even though as I explained to him they referred me to him saying it was a cardiology problem - I said I felt like a hot potato that everyone picked up then passed on as soon as they could.

I wouldn't have minded if he had said I'm sorry I can't help you, I know you are ill but I don't know of any other treatments we haven't already tried.  Instead I am left feeling like he believes I am not that bad, that I am exaggerating my problems and that I have been refusing to take meds that he believes should have worked.  I told my parents I don't see the point in seeing him again - this appointment will probably lead to a flare and I have gained nothing from it..... except a desire to scream!

[MikeO]

Oh @cmep37I am so sorry you have to go thru this. I do feel your frustration as i have experienced some of this as well. My new Cardiologist will downplay the bradycardia/tachycardia episodes (he does get concerned with numbers that fall below 40 and go above 160 consistently) But will at least acknowledge the events can be discomforting and offer med changes if it makes sense to do so.

I really hope you can find a resolution or therapy that will work for you. If i could reach across the pond i would give you a BIG HUG!

[Pistol]

9 hours ago, cmep37 said:

Instead he made me feel like I was malingering, that I shouldn't be experiencing the level of symptoms I am, that the meds I tried should have worked for me and that it is all my fault I am sick.

Been there, seen that, @cmep37! Nonsense - it's what the docs say when they are at wits end and how dare the patient not respond to what THEY thought would help? If their treatment does not help than it is the patients fault? 

 

9 hours ago, cmep37 said:

I was late and had to walk quite a distance so by the time I got there I was retching loudly and had to lie on the floor.  He sent a nurse to tell me that if I didn't calm down I would have to go to A&E

Another sign that this doctor has no clue about dysautonomia or how it works. Obviously he does not know the symptoms!

 

9 hours ago, cmep37 said:

He then proceeded to say that on my TTT to diagnose POTS my HR had only increased by 32 BPM at 5 minutes, so I barely met the criteria

You qualify once the BPM goes above 30 within 10 minutes of standing. You qualify!

 

9 hours ago, cmep37 said:

I said that I had found a hospital in London with a clinic specialising in autonomic dysfunction and asked him if he would write to them and ask for advice on treatment.  He refused and said that even if they agreed I had autonomic dysfunction (IF?? I didn't think there was any doubt. about it ...) there was nothing more they would do that he hadn't already done because he was following national best practice guidelines. 

If HE thinks your symptoms are YOUR fault because YOU do not respond to HIS recommendations - you need to see someone else, IMO! 

 

9 hours ago, cmep37 said:

I then asked his views on telemedicine - I am considering seeing Dr Blitshteyn via the internet and I explained her qualifications and experience to him to which he said it was up to me but that he believed American medicine is all guided by money rather than what is good for the patient and that people who may seem reputable on the internet are often not what they seem.

My sister in Germany has POTS and cannot find anyone to help her with her POTS ( we have a genetic type of HPOTS that runs in the family ). She has seen the autonomic specialist that I see in the US ( where I live ) and she has gotten very good treatment recommendations, and her PCP in germany has had telemedicine visits along with her with the specialist. They all had very good results, because they are willing to work together. 

9 hours ago, cmep37 said:

Instead I am left feeling like he believes I am not that bad, that I am exaggerating my problems and that I have been refusing to take meds that he believes should have worked.  I told my parents I don't see the point in seeing him again - this appointment will probably lead to a flare and I have gained nothing from it..... except a desire to scream!

Well. IMO the only one who seems to be refusing anything is the doctor - he seems to be refusing to listen to you! And that means he is not doing his job! Please dont waste your precious energy on screaming about this doctor! Instead, take a deep breath and have a cuppa!

[sunbun]

As a fellow UK resident this doesn’t surprise me at all and I believe every word you say. I struggled with POTS for a decade before anyone took me seriously enough to investigate it and I had to fight tooth and nail for it to be considered to be anything other than anxiety. I’ve found most doctors and cardiologists here either completely ignorant or downright dismissive of this condition and too frequently it gets shelved as anxiety or some other PC version of saying ‘female hysteria’.

NHS is pretty decent when it comes to injuries or other emergencies but when it comes to chronic or rare illnesses then good luck trying to find any specialist to take your case on. When I asked the A&E dr for some IV saline when I was flareing badly and could barely stand without fainting he just laughed condescendingly and said ‘if you can still swallow you don’t need IV fluids’ and told the nurse to get me a cup of coffee instead. 

Sadly yes there is also a lot of arrogance and anti American sentiment among UK doctors too unfortunately, because they view working for a universal healthcare system as some kind of virtue signalling bragging right and as you said seem to erroneously believe that even esteemed American doctors are all money hungry quacks.

I’m not surprised at all that he immediately shut down the idea of a dialogue with Dr Blitshteyn, again another combination of ignorance, arrogance and probably some subtle sexism too, sadly a lot of these male specialist doctors are narcissistic and have a not so subtle bias against female patients and specialists, even women who outrank them in terms of qualifications. I seriously envy the American posters who have so many great cardiologists and POTS specialists available at places like Vanderbilt and the Mayo clinic who know all about this condition and are well versed in it. I can count on one hand out of the hundreds of UK doctors I have talked to since 2011 who knew what POTS was. The only suggestion I can make to you is to self refer for a private consultation with a different cardiologist (usually costs between £150-200) preferably one who is familiar with dysautonomia and see if you have any better luck finding one you are compatible with because quite frankly your current one sounds like a uncaring patronising ****. 

[Guest KiminOrlando]

I am so sorry you guys go through this. Reading posts from the UK scare me because I am afraid that kind of Healthcare is coming to the US. 

Digestive problems are part of dysautonomia. Every time I get tachycardia and feel like I am going to faint, I get nauseated and feel like I may lose control of my bowels. It triggers peristalsis. I don't know why. I cannot get out of the shower and eat dinner. I need at least 30 minutes to an hour to recover. 

I wish there was something I could do. We still get diagnosed with 'hysterical female syndrome' too.

[Nelson G.]

I almost cried reading this @cmep37  Because 99,7% of the times I went to see a doctor it came out to be like yours.

Can I rant here as well?  maybe we need a rant zone LOL:
I wonder what will happen when I see a cardiologist (hopefully soon) because I am dealing with something similar,  since November I was dealing with awful vasovagal response to eating/swallowing, peeing and standing, and maybe when I have bowel movements, it kinda got better for a while,   but lately it got very bad,  it became plain low HR,  around 58-66,  which sadly,  for a cardiologist is not alarming, the thing is that ever since I got diagnosed in 2015, my HR was more on the faster side,  around 78-100 when resting.  And boy that I feel awful with this new low HR.  I feel like passing out all the time even when resting, or like my heart is about to stop because I am not used to it. 
2 weeks ago I was eating dinner and my HR was so irregular, it was fast after sitting and after a few bites it was reeeally  slow, almost struggling to beat,  I touched the left side of my chest out of instinct,  and felt a bit of pain, that later was increasing,  I tried not to panic,  but then I felt my heart ‒I swear to god‒  like it had stopped for a moment and I immediately felt like collapsing and my eyes struggling to focus on things, I thought 'this bad',  so I told my parents to take me to emergency,  the doctor, pretty nice lady at first,  asked me why I was there, so I told her everything (my chest was still in pain),  and she asked for an ECG right away,  I went there, and as soon as she read it, she looked at me with UTTER DISGUST.  And told me 'You've got nothing!'.   BUT SHE NOW SEEMED ANGRY AT ME.  I WAS LIKE HAPPY THAT MY HEART WAS FINE, BUT AT THE SAME TIME I FELT EMBARRASSED? and she listed aaaalll the things I didn't got, 'You don't have arrhythmia, you didn't had a heart attack, you didn't had a stroke, ischemia' and endless stuff,  I wanted her to stop, I had gotten the message,  but she was like in this 'get over it' and 'get out of here' tone?  I thought my skin was already hard enough after so much crappy experiences,  I've been treated worse after 'having nothing',  but this one really made me cry on the way home,  she really made me feel guilty and embarrassed. 

Anyway, ever since,  my HR is still very irregular,  and I feel in general very POTSy, way way more than usual,  blood pools to my feet easier than ever,  specially at night, and while that happens I get an uncomfortable slow HR with palpitations, when standing or resting I also get palpitations and low HR out of nowhere, and it makes me feel like collapsing, my knees become rubber,  and if I am resting I feel lightheaded,   I've been doing cardio exercise with no issues (in fact the best days are when I do cardio)  but resting days SUCK,  these palpitations feel like my heart/valves are not doing well at times.  So I want to get a Holter, and an echo... but  no matter how bad I feel,  I kinda get the feeling I only meet criteria for Holter...  I am still very young,  so it is very hard to get an echo even if my last one was 8 years ago, but back then I had similar symptoms along with heart murmur and unbelievable chest pain (way worse to what I've been feeling lately,  with the one I've been feeling lately I can still talk and shake it off,   8 years ago it was such a pain I would stop talking mid sentence and I would soak in sweat  out of pain, while touching my chest,  it was pretty scary, not even the docs dare to say it was nothing, well, that before the several echos that were normal,  then they were like 'it's nothing').  Still,  I haven't fainted or collapsed ever in my life,   I only have awful near syncope and since I am always at home I sit or go to my bed right away,  so with no loss of consciousness the doc is obviously going to be like 'well you ain't doing that bad are you'  regardless the fact that I haven't been able to leave the house in years.  All I want is to know if my heart structure is still fine, valves and everything,  I want peace of mind, in fact, I believe is the most prudent thing to do.  IRONICALLY, like  al the handful of doctors I saw on emergency the last 2 months,  I also believe it seems to be neurocardiogenic/vasovagal mediated,  and well... the answer to my stuff seems to be the good old "you've got POTS/dysautonomia";    One of the doctors I had in late november, I remember,  young lad, full of energy,  was like 'yeah, well,  if dysautonomia is the answer to any of the symptoms you may feel that might be bias/slant'  you know? like, saying oh well it's your old dysautonomia could make them slip past something else, and I was like WOW I've never had a doc with such attitude.  Well... 6 hours after routine tests he was like 'just avoid hitting your head if you have syncope',  it didn't surprised me at all we pretty much ended up answering all my symptoms with dysautonomia, but I feel bad for him as I felt I wiped out a bit of his youth specially when after he went on to touch my throat for any lumps or thyroid issues, he dropped his hand in a clear sign of 'd*****!'  hahahaha I may sound crazy,  but I actually laughed a bit behind my mask,  because he had such attitude of 'I am going to find your problem here,  and if I don't, then in here!'  and in my mind I was like 'doc if only you knew how much other doctors have tried already'.   I still had fun that day, I wish at least they tried like this guy.

Which brings me to...  aside from his full of youth attitude,  I had fun because he accidentally gave me an IV lol... it was part of the routine in case sudden nursing care was required given my symptoms... but boy that I felt AMAZING.  BAM! like new, when the nurse told me to get ready for IV I was like OMG it's been SEVERAL years since I got an IV I wonder if I will actually feel better (given the fact I wasn't aware it was a bit common for dys/pots patients to get casual IVs),  and I did felt amazing...  
My hope was to tell my cardiologist if I could get an IV every now and then... but reading OP...  In the UK/Europe...  getting told all those things about 'not believing everything you read' ... man,  I will try,  but I come from a country where health care SUCKS not only because of bad doctors but because of resources.  Third world as h***!,  I can't hope for much,   It's hard to explain anything to them when they act ecclesiastical when it comes to medicine,  which sucks when most of us kinda get the feeling we know a thing or two about dysautonomia that they either ignore or are skeptic.  I still remember when in 2014/2017 I had to explain two doctors what was dysautonomia, I am not exaggerating.

[Guest KiminOrlando]

On 1/12/2022 at 2:12 AM, Nelson G. said:

I only have awful near syncope and since I am always at home I sit or go to my bed right away,  so with no loss of consciousness the doc is obviously going to be like 'well you ain't doing that bad are you'  regardless the fact that I haven't been able to leave the house in years.  All I want is to know if my heart structure is still fine, valves and everything,  I want peace of mind, in fact, I believe is the most prudent thing to do.  IRONICALLY, like  al the handful of doctors I saw on emergency the last 2 months,  I also believe it seems to be

My opinion... don't sit. Don't get in bed. Faint at their feet. This is what got me help. Losing consciousness in my area requires them to fill out paperwork on the 'incident'. It gets documented and people start caring. I went for years trying not to faint and had doctors tell me it was all in my head and I wouldn't actually faint. They really hate to fill out that paperwork. 

[ramakentesh]

You may want to try a neurologist rather than a cardiologist.

[Nelson G.]

On 2/15/2022 at 11:33 PM, KiminOrlando said:

My opinion... don't sit. Don't get in bed. Faint at their feet. This is what got me help. Losing consciousness in my area requires them to fill out paperwork on the 'incident'. It gets documented and people start caring. I went for years trying not to faint and had doctors tell me it was all in my head and I wouldn't actually faint. They really hate to fill out that paperwork. 

Hmm.  Them telling me 'just avoid hitting your head'  kinda has a new meaning after reading your comment tbh.

[MikeO]

It was a standing joke at Cardio Rehab (no dying or falling allowed) because there is too much paperwork involved. In reality that was an accurate statement and the nurses dreaded having to fill out all the forms.