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Want to scream!


cmep37
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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!

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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!

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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!

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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 ****. 

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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.

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