Dysautonomia, POTS, and the brain blood flow test – is this what we’ve been missing?

I’ve been told by doctors countless times that my ongoing distressing symptoms must be ‘all in my head’. Although I have been diagnosed with Dysautonomia / POTS, it’s been assumed that my dysautonomia / POTS is under control. Why? Because since I started meds in 2018, my heart rate and blood pressure have, until recently, been considered ok. (I’m going to ignore for the time being the ableist, diminishing nature of this statement!).

Have I finally found the answer as to why the docs tell me I’m fine, when my symptoms are telling me that I’m definitely not fine?

What I’ve discovered in the past few weeks is that in a way, the problem is In My Head….but it’s physical, not psychological!

I’ve been searching for 9 years for something to explain my ongoing symptoms – the ‘trapped in my head’ collapses that can last hours, the sudden panic attacks out of the blue, the exhaustion, the drunk feeling, the derealisation, the cognitive issues, the fuzzy eyesight, the shakiness, the weakness and the sudden digestive distress. When explaining what it feels like to doctors, I’ve always said:

‘it just feels like I don’t have enough oxygen going to my brain’.

Well, I now know that I probably DON’T have enough oxygen going to my brain!

Medical Ignorance and medical gaslighting

It took me 3 years of researching to work out for myself that, contrary to what multiple healthcare professionals had insisted, I didn’t have ‘just anxiety’. I have dysautonomia / POTS.

It has taken up to this point – another 6 years – to start to overcome the gaslighting I have internalised. To start to believe that there is a reason why I still have crippling symptoms and now collapses even when my blood pressure and heart rate are ‘fine’.

I now think that, contrary to the cardiologist’s conclusions, my tilt table test results in 2018 were not ‘normal’. That just because my blood pressure and pulse rate remained stable during my weird trapped-in-my-brain-unable-to-move-or-think-or-open-my-eyes ‘episode’, it doesn’t mean that I wasn’t experiencing dysautonomia. I was probably experiencing pre-syncope / half blacking out! (One of the most distressing feelings I’ve ever experienced).

And there is probably a reason why I’ve always found that extra rehydration salts alleviate my symptoms so much, even when they don’t change my blood pressure. (I was told by my cardiologist at the time that it must be a placebo effect because my blood pressure doesn’t change when I take the salts, that I must stop taking them now, and was then threatened with having my fludrocortisone taken away).

What if my experiences were never purely psychological, and were not due to the placebo effect? What if there was another explanation?

Well, I’ve found out that there is another explanation – I could still have, despite my BP and heart rate readings looking ok, reduced blood flow to my brain (otherwise known as cerebral blood flow reduction).

I’m starting to question whether the diagnosis of dissociative seizures that I was given by my neurologist is now valid…

side-mini-rant: When are we as a society going to ensure that our medical professionals have a solid education in scientific theory? That the absence of double placebo controlled trials doesn’t prove that a well constructed theory is categorically wrong? That an absence of double-placebo controlled trials doesn’t mean that patient’s experiences can only have a psychological explanation? That science is constantly moving and changing, that we must revise our knowledge and strive for new theories if we are to consider ourselves scientific?

Evidence? Peeps, check this paper out!

Take a look at this research paper published in 2020.

The researchers found that, for the patients with M.E/CFS who took part:

• 90% of the patients with M.E/CFS had abnormal blood flow to the brain during their tilt table testing.
• Orthostatic intolerance symptoms of the M.E/CFS patients were related to reduced blood flow. Symptoms include dizziness or light-headedness, fatigue, palpitations, leg muscle weakness, breathlessness, blurred vision, altered hearing, neck-shoulder muscle pain, low-back pain, chest pain/chest pressure, concentration problems, perspiration, head ache/pressure on the head, tingling feeling of hands, and nausea.

Do you follow the startup Lumia, who are designing an in-ear device to measure blood flow to the brain? I believe their work is based upon this paper, among others.

Here are some key excerpts from the paper that you could highlight to your healthcare professional:

A novel finding of this study is that those who had a normal heart rate and blood pressure response on head-up tilt also experienced a comparable cerebral blood flow reduction.

…strong association identified between the number of orthostatic symptoms reported during the head-up tilt test and the degree of cerebral blood flow.

…Patients with orthostatic intolerance symptoms in daily life have a significantly larger cerebral blood flow decrease (28%) than patients without orthostatic intolerance symptoms in daily life (12% decrease).

[In this experiment] the largest group of ME/CFS patients were those with a normal heart rate/blood pressure response. Of this group, 82% had an abnormal cerebral blood flow decrease as defined by the lower limits of normal. These patients would have been misclassified as having normal hemodynamics using just heart rate and blood pressure changes during head-up tilt test.

Slipping through the net – POTS, EDS, M.E/CFS, and Long Covid

These findings have consequences for anyone experiencing orthostatic intolerance, for example anyone who has POTS. And this will include soooo many people who have no idea that their symptoms are driven by orthostatic intolerance – for example people who have M.E/CFS, Long COVID, undiagnosed Ehlers Danlos Syndrome (EDS), or undiagnosed Hypermobile Spectrum Disorder. We need better diagnostics – the active standing test (also known as the Poor Man’s Tilt Table Test) and the head -up tilt table test are not fit for purpose.

Also, if you do have a diagnosis of dysautonomia or POTS and are on meds but still experiencing symptoms, bear this in mind – if you are told that your symptoms can’t be the dysautonomia or POTS because your blood pressure and pulse rate are looking fine…that’s not accurate. If you’re still experiencing symptoms, know that those symptoms are very real. Doctors often don’t have access to the right tests to accurately determine whether your dysautonomia is well-controlled.

I also wanted to mention that there are some preliminary results from other researchers that suggest people with M.E/CFS may have reduced blood flow to their brains even while lying down. Watch this space!

How is this going to change my outlook?

Firstly, I’m going to trust myself and my instincts. Yes, techniques for lowering my anxiety levels are incredibly helpful. But they’re not the only factor. My body truly is finding it difficult to sit or stand up, to eat, to digest. So I can give myself grace and feel empowered to use my nervous system regulation techniques, knowing that the panic may stay because my body is struggling to keep enough blood flow going to my brain. And that’s ok. Let’s work with that, rather than focussing purely on the psychological aspect and pushing myself too far with exposure, or expecting that my psychological health is going to to fix everything. I’ve put myself under too much pressure, and it appears that pressure has also been misdirected all this time.

I’m going to use my powerchair a lot more. If I go to the grocery store without it and start to feel hot, shakey, nauseous, and panicky, I’ve always assumed it’s because I’m anxious about being out and about. But it may well be that I’m just standing still for too long. When I think about it, I spend most of my day with my legs up – sitting on the floor, reclining with my legs up on the sofa, or laying on my bed. I’ve sat like this for years, come to think of it. And when I am up and about for small snippets of time, I’m moving around so my calf muscles are working to pump that blood up. No wonder cooking makes me feel soooo awful!

I also wonder whether this missing brain blood flow piece is the reason why I am finding that the M.E/CFS and Long Covid apps for pacing are not tracking that well with my symptoms.

I feel a massive weight that I’ve been carrying for 9 years lifting. Researchers are on it now. And they’re getting somewhere. And Lumia is making strides – I am now watching them like a cheerleading hawk! Perhaps we will see better clinical diagnostics in the next few years. And maybe some treatments.

I’m so excited by the progress that’s happened in the last 4 years, thanks to researchers who are not afraid to question the status quo and to push new ideas and theories. Before, I felt like us patients were totally on our own, and it’s such a lonely place to be. Now, it feels like there might be a device available in the next few years that can validate us and help us to manage our condition. Perhaps we won’t have to scrabble around in the dark in the future, and perhaps we can finally have that ‘proof’. The proof that can change the tide on the dismissal and disbelief so many of us have been subjected to by those who are supposed to care for us.