Quite a few people, including myself, have or have had POTS and I saw this article describing how it ca be diagnosed in a clinic without Tilt Table test -
medscape.com/viewarticle/99...
Some excellent explanations alongside advice for exercising - wish I had known much of this stuff 10 years ago!
Maybe of particular interest to those who had AF diagnosed after eithe having COVID or the jabs.
Just read the article. It was interesting, concise and comprehensive. Thank you for the link.Regards
It's an interesting article.What she describes is what doctors call a "Poor Man's Tilt Test" which is tried at surgery level to see if a person requires a Tilt Table Test to confirm P.O.T.S or Orthostatic hypertension/ hypotension.
However, her numbers appear a little off. Most cardiologists require you to have either a 30+ spike in heart rate on standing and 30+ drop of heart rate on lying down within 1 minute to confirm P.O.T.S.
More knowledgeable P.O.T.S specialists usually allow for some error but still require the 30 + beat change in heart rate to occur by 2 minutes.
They also take the blood pressure readings just in case you may also have a orthostatic blood pressure problem too.
So if you only took readings at 3-5 minutes as stated most doctors (especially the least knowledgeable or most dismissive ones ) would not count a spike or drop after 3 minutes as a confirmation of P.O.T.S.
The standard " Poor Man's Tilt" usually requires some time to complete which is why it's hard to do in a normal surgery setting. When my test was rechecked by the GP, and my daughter had her initial assessment, we had to have an appointment between surgery hours to allow for the time to rest before the test and the 20 minutes of the test itself.
Usual protocol is to have the patient lie still for 15 minutes then take baseline reading.
Then the patient stands and then heart rate and BP readings are taken at 1,2, 3, 5, 8, 10 minutes.
At ten minutes the patient instantly lies down then the readings are taken again at 1, 2, 3, 5, 8 and 10 minutes. Finally the patient stands and has one final standing reading taken at 1 minute,
The reason the standing test lasts for 10 minutes is that some P.O.T.S patients have a high resting heart rate which can affect the range of swing. So some people are diagnosed with P.O.T.S if they have a heart rate of 100+ beats a minute on standing which continues or rises during a full 10 minutes of standing.
My P.O.T.S was eventually diagnosed because I'd researched how I could get a definitive diagnosis.
I ended up needing to do this because even when I first had "Poor Man's Tilt" Tests done the doctors seemed to get confused about what they were testing ( including a few Consultants and one Cardiologist).
They would concentrate on the changes in blood pressure not heart rate , which is the way to test for Orthostatic Hypertension or Hypotension not P.O.T.S.
This , of course , gave misleading results.
And unless a EP knows what they are looking for it can be missed in Holter tests as I found in my first two efforts!
One of the characteristics of P.O.T.S is that many sufferers will not have a significant change in blood pressure on standing or lying, in fact it will often marginally go down.
Research done , thanks to P.O.T.S UK and Dysautonomia International , I felt brave enough to point out the errors politely in the consultation room and did my own " Poor Man's Tilt " tests at home using my blood pressure monitor taking the results to the appointments. I even got my hubby to film one test so that if they queried the result they could see I was doing it right, Now things were taken more seriously and I was seen by the Cardiologist with the right experience.
The tests led to a 72 hour Holter during which I did two tests per day and marked the times in my Holter Diary as well as the results I took with my own blood pressure monitor.
P.O.T.S was finally confirmed by the Electro cardiologist from reviewal of the Holter readings , but it had taken years to get the diagnosis and I'd spent most of my adult life suffering with P.O.T.S and either having it dismissed or misdiagnosed.
Because of those tests they could confirm P.O.T.S without requiring a Tilt Table procedure.
P.O.T.S does not present on an ECG or an Echo, why? Because they are usually done lying down and although the heart rate may be high you aren't making the change in position that triggers the P.O.T.S response.
Unfortunately, at the time my P.O.T.S was confirmed they also diagnosed Sinus Node Re-entrant Tachycardia ( genetic) and Chronic Dysautonomia. And by that point they noted I was experiencing Arrhythmias and AF. Of course , these could have been the natural progression of my cardio/ neurological illnesses , but I do wonder whether they may have been avoided , or not occurred in my 40's , if P.O.T.S had been found and I'd been given the medication and proper Self Care years sooner.
P.O.T.S can begin at anytime time, in fact, many young people can suffer acute periods of P.O.T.S or chronic P.O.T.S is triggered in the teens or twenties because of the effect of hormone changes,Stress or other illnesses.
If you have a genetic risk for P.O.T.S, or an underlying condition that P.O.T.S or Dysautonomia are linked with, they can begin because of any type of Stress.
So it is common for P.O.T.S to be triggered by any infection , not just COVID, an injury , by the impact of other chronic illnesses, or prolonged periods of physical or mental overactivity. In fact , many healthy and athletic people can develop P.O.T.S , as like Fibromyalgia, it is classed as a condition triggered by Over Exertion.
Despite a life of illness , when I developed more severe symptoms of P.O.T.S and cardiac Dysautonomia it was probably the most life changing blow so far ; affecting how I can move and limit my lifestyle options in ways my other illnesses didn't do before.
At some point I may need a wheelchair , but at least I'm still able to get around with sticks for now.
If you have P.O.T.S you need to use Self Care to help reduce the symptoms.
Moving positions more carefully, drinking more water especially before you move and exercising, you often need more salt each day, Compression clothing and breathing techniques help .
Eating lighter meals, keeping legs raised while seated, not getting overheated and pacing your activities can also alleviate the risks.
Exercise is useful but better exercises require less positional change of the head ... No gymnastics or rapid ups and downs of the upper body.
Walking on moderate surfaces, aqua exercises , swimming (taking care on leaving and entering a pool) cycling on even surfaces , Tai Chi , Qui Gong, Low Impact pilates , badminton , moderate rowing , dancing are all P.O.T.S friendly activities .
It's all about even movement and steady head positions so unusually some yoga types , a tennis serve or even golf can floor you.
If you have severe P.O.T.S Self Care alone is not enough but there are medications to help .
I've just included this long reply in case it helps people whom may have P.O.T.S or think they do and require testing to know what to ask about and how their tests should be completed in a surgery setting.
Stay Healthy , Bee
Such an excellent reply! Thank you so much for this informative explanation.
I started talking on this forum about POTs when I knew absolutely nothing about it, no-one had ever mentioned this to me. I found dysautomnial, STARS (AA) and POTS Uk via a FB page via a reply to a query I posted.
Always had symptoms from childhood but it was always ignored or passed over so it wasn’t until I was in my 50’s and went to the dentist and after I had had local for a filling and I passed out as the chair went down that my dentist (of all people!) suggested this might be a problem. Then I developed AF and things got a LOT worse! It was only after visiting the STARS Patient day that I really started to learn just how disabling this condition is as so many people I met at that convention were in a wheelchair and most under 30.
To complicate matters I then developed Myasthenia - an autoimmune condition which as you will know is quite common with dysautonmonia. Interestingly - I improved after recovering from COVID which I was really ill with in 2021.
I have struggled with all of the medications which just throw my whole system out of whack and found self care very important however, arrhythmias become so bad that it was either amiodarone (NO! Not for me) or Pace and Ablate - which I reluctantly agreed to and so glad I did! I was given a RST pacemaker and this worked so well for me that I cancelled the Ablation of the AV node. Pacemaker improved my QOL in so many ways, yes I still have occasional arrhythmias but I don’t need to worry about syncope, my BP is steady and doesn’t crash into unreadable, I rarely get HR exceeding 130 ish even in AF, I can stand in queue for more than 5 minutes.
I think we need to shout a lot louder as I am convinced that this condition is under reported, mis-diagnosed, misunderstood and often dismissed as unimportant.
Thank you so much for replying as I feel I have found a comrade in arms. Best wishes
Both POTS and Chronic Dysautonomia are misunderstood by doctors and get overlooked , or in many cases misdiagnosed as an Anxiety related disorder .And , when you finally get diagnosed most of the less knowledgeable consultants just give you the self care techniques to try , look you square in the face and reply , " This will work , don't worry P.O.T.S isn't that bad "
You know you need a second opinion when you hear this , if you can find one.
But then you come across this in day to day life too. P.O.T.S, and Chronic Dysautonomia in the early years, are some of those " invisible illnesses" with a mighty sting in the tail , much like Atrial Fibrillation is.
So much like other invisible conditions people can treat you like there's nothing wrong with you , or you're making a fuss .
Nobody , including Cardiologists , acknowledge that a condition that you can't see and operate on can end up being more disabling and impact your quality of life far more than the big name cardiac diseases.
It has no cure it can only be managed , and there is no surgery that efficiently can be used by all sufferers. for it, so doctors aren't interested in specializing in them.
My go to phrase eventually before POTS and Chronic Dysautonomia were diagnosed was,
" I don't have these symptoms because I have Anxiety , but I am occasionally anxious because I have these symptoms and no one has found the cause....there is a big difference between the two."
Many people suffered from acute forms of dysautonomia ( Autonomic dysfunction) after having COVID , as many people do after suffering any type of severe illness, surgery or injury,
It is just that doctors don't give it a name and an explanation which makes it more distressing for the patient.
Your Autonomic Nervous System becomes disrupted after a long illness , accident or surgery because of the previous stress and change of function it experienced. This is Acute Dysautonomia.
Acute Dysautonomia is why you need to slowly build yourself back up to strength and pace your day carefully after an illness because it can trigger lots of functional symptoms like muscle weakness and fatigue, dizziness, palpitations, tachycardia , fainting, frequent need for the toilet, indigestion , IBS, brain fog and forgetfulness , feelings of anxiety for no apparent cause,poor sleep and sweats and chills.
If you already have a cardiac condition it can trigger more events of AF or arrhythmia until you are properly recovered. If you already have P.O.T.S during or after illness this will also get worse. Listening to your body is key to managing POTS or getting over acute dysautonomia caused by an illness or surgery.
If you just try to power through the symptoms like you would before AF or you develop any type of chronic health condition the autonomic nervous system won't let you , it's like an overblown balloon with the air let out , so that's why doing too much , too soon even for a few minutes can have you on your back with symptoms for days afterwards.
Eventually, not listening to your body and the dysfunction it is feeling under daily activity can cause your body to trigger the development of other health issues , particularly if you are at risk from genetics or family history to have them ...., no matter how well you'd looked after yourself for years before.
Chronic Dysautonomia is different and a lifetime medical condition in itself which usually has a cardio neurological problem at its core . It is disabling and it's not surprising that the unofficial slogan of the members of the community is , " Standing is my Cardio".... It really is!!!
Depending on the severity of your previous illness or chronic health condition can depend on how long acute symptoms of autonomic dysfunction affect you .
Most people with other Chronic Health conditions need to cope with autonomic dysfunction to some level a lot of the time, which is why it's so common to find someone with Ehlers Danlos Syndrome , Fibromyalgia or Lupus may also have P.O.T.S , or I.B.S or the often disabling conditions of Chronic Dysautonomia or M.E/CFS.
My hope was that after COVID and Long COVID was being researched that people , especially GPs would be provided more information to help and provide patients as acute dysautonomia is a big part of the treatment of symptoms caused by Long COVID but , unfortunately, there still seems to be little movement on this.
It isn't surprising, both P.O.T.S and Chronic Dysautonomia are at heart , if you pardon the pun , neurological cardiac conditions,
Yet despite the fact that the autonomic nervous system regulates all the major basic functions in the body few Neurologists know anything about Dysautonomia or how to treat it and you get sent to Cardiology, where it isn't really there specialism either.
There are very few specialists in P.O.T.S in the UK , and there are even less options to get specialist help or a diagnosis for Dysautonomia, basically one centre in London if your area hospitals come up wanting and if you live in the regions you have to battle with your hospital Trust to be sent there .
A battle that few of us have the energy to fight if we have the conditions we need to talk to them about.
There aren't even any forums for P.O.T.S or Dysautonomia on HU which goes to show how little word is getting out or accessible support is available despite so many people actually suffering from P.O.T.S or acute periods of dysautonomia globally.
There have often been times when I thought about starting a forum for it in here myself.
It's a challenge , but I'm sure you will be up to it.
Keep Calm , Keep Pacing , Keep Positive , take care , Bee
PS - I once was Blue Lighted to A&E because I had been in AF for over 72 hours and couldn’t lift my head off pillow without passing out. I was in A&E for about 18 hours whilst they found me a bed on the ACU. During that time every doctor in the hospital (it felt like) popped their head around the door and asked me to sit up - I warned them I would faint but no they wanted me to do it - before I got to half sitting the alarms on the monitors started shrieking, everything went black and I came to watch doctor shaking their heads saying - ‘never seen that before’ and walked out of the cubicle!
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