Hi Friend
If you have been told your symptoms are anxiety, IBS, panic attacks, "just hormones", deconditioning, or in your head, this newsletter is for you.
The condition I see most often in my clinic does not have its own NHS pathway. It does not appear on most GP differential lists. It is taught in roughly six hours of an entire medical degree. And it affects an estimated 70 million people worldwide, the vast majority of them women.
It is called dysautonomia.
What dysautonomia actually is
Your autonomic nervous system runs every process you do not think about. Heart rate. Blood pressure. Body temperature. Digestion. Sweating. Pupil response. Bladder. Bowel. Sleep. Immune function. Hormonal cycling. It has two arms: the sympathetic (fight or flight) and the parasympathetic (rest, digest, repair). They are meant to balance each other thousands of times a day.
Dysautonomia is the umbrella term for what happens when that balance breaks. The signal between brain and body becomes unreliable. The thermostat is broken. The plumbing leaks. Standing up feels like climbing a mountain. Eating a meal triggers a flare. Heat tips you over the edge. Sleep does not refresh. Exercise makes you worse for days.
It is not anxiety. It is not deconditioning. It is a measurable physiological problem, and once you know what you are looking at, the patterns are unmistakable.
Why almost every chronic illness patient has some form of it
Dysautonomia is rarely the original villain. It is what happens when several other things go wrong in sequence. Look at the conditions I treat most and you will see the same nervous system at the centre of all of them.
POTS is the best known form. Your heart rate jumps by 30 or more beats per minute on standing without a drop in blood pressure. The cause is usually blood pooling in the legs and abdomen, low blood volume, and a sympathetic system overcompensating to keep blood reaching your brain. The average diagnostic delay is 7 years. Most patients are told they are anxious before anyone takes their pulse standing up.
MCAS sits next door to dysautonomia and feeds it. Mast cells live alongside autonomic nerves throughout your body. When they release histamine, tryptase, prostaglandins, and dozens of other mediators, those mediators speak directly to autonomic receptors. Heart rate climbs. Blood vessels dilate, then constrict. Gut motility crashes. Sweating goes haywire. Worse, autonomic flares activate mast cells, and mast cell activation worsens autonomic instability. The loop feeds itself.
hEDS is the structural piece. If your connective tissue is loose, so are the walls of your blood vessels. Blood pools where it should not. Veins do not return blood efficiently to the heart. The gut moves slowly. The bladder behaves erratically. Around 70 to 80% of hEDS patients meet criteria for POTS. The two conditions are so often paired that finding one should trigger screening for the other.
ME and fibromyalgia sit on top of all of this. Both involve documented small fibre neuropathy in a large subset of patients, and the small fibres include the autonomic nerves. Heart rate variability is typically very low. Orthostatic intolerance is common but rarely tested. Post exertional malaise, the cardinal feature of ME, is partly an autonomic crash layered on cellular energy failure.
The unifying picture is this: damaged or overstimulated autonomic nerves, blood that pools where it should not, mast cells firing into the same nervous system, and a brain that has learned to keep the body in a low grade fight or flight state because it does not feel safe.
What can be done
There is no single cure for dysautonomia. But there is a great deal that genuinely helps, and most of it is never offered on the NHS unless you push hard.
Get a real diagnosis. Ask your GP for an active stand test (cheap, takes 10 minutes), referral to an autonomic clinic. If small fibre neuropathy is suspected, a skin biopsy is the test. A wearable that tracks heart rate variability gives you usable data day to day.
Fix the foundations first. Not optional, not glamorous, and they work for most patients before any medication does.
Salt: 8 to 12g a day if your blood pressure tolerates it. Most patients are chronically under salted.
Fluid: 2.5 to 3 litres a day, ideally with electrolytes.
Compression: waist high, 30 to 40 mmHg. Knee high garments do almost nothing for serious POTS.
Sleep elevated: raise the head of the bed by 4 to 6 inches. This trains overnight volume regulation.
Recumbent exercise: rowing, swimming, recumbent bike. Avoid upright cardio early in reconditioning.
Heat avoidance: this week especially. Cool flannel on the neck, electrolytes in the fridge, plan activity for the cool hours.
Medications worth a serious conversation with your doctor. None of these is first line for every patient, but all are worth knowing about.
Low dose beta blockers (propranolol, bisoprolol) for hyperadrenergic POTS.
Ivabradine, licensed in the UK and useful when beta blockers cause fatigue.
Midodrine for orthostatic hypotension.
Fludrocortisone for volume expansion.
Pyridostigmine to support the parasympathetic side.
Low dose naltrexone for the inflammatory and neuroimmune component.
Mast cell stabilisers (cromolyn, ketotifen, H1 and H2 blockers) if MCAS is in the mix.
Retrain the nervous system itself. This is the piece most clinicians forget. The autonomic system is plastic. It learns.
Heart rate variability biofeedback: 10 minutes a day of slow breathing at around 5 to 6 breaths per minute, ideally with live feedback from a wearable. The evidence base for this in dysautonomia is one of the strongest of any non drug intervention.
Cold exposure: short, careful, not for everyone. A face dunk in cold water activates the vagus nerve immediately.
Polyvagal informed therapy: not the same as CBT for anxiety. This is body led work that targets the nervous system, not your thoughts.
Sleep: protect it ruthlessly. Poor sleep collapses autonomic function within days.
What I tell every new patient
You are not broken. Your nervous system is dysregulated, and dysregulated systems can be retrained. The reason you have not got better yet is that nobody has named what is actually happening, and nobody has given you the right combination of physiology, medication, and nervous system retraining at the same time.
If this rings true for you, the next steps are simple. Print this email. Take it to your next GP appointment. Ask for an active stand test, salt and fluid loading, compression, and a referral to an autonomic clinic. If you want a thorough workup and a treatment plan that pulls all of this together in one place, that is what we do at Mend.
One last thing before you go.
The single most asked question I get from dysautonomia patients is "which magnesium should I take?" The honest answer is that no single form does everything a dysregulated nervous system needs. Glycinate calms. Taurate supports the cardiovascular system. Malate supports cellular energy (the missing piece in ME and fibromyalgia). Lactate is highly bioavailable. Citrate adds tolerability.
That is why we built Mend Magnesium Five in One. Five complementary forms of magnesium in a single capsule, formulated specifically for the chronic illness nervous system. No fillers your mast cells will object to. Third party assayed at 101.7% of label claim.
Launch is weeks away. The first 500 on the waitlist get founders pricing and early access ahead of the public launch.
Stay well
Dr Ahmed
This newsletter is for general education and information only. It is not personal medical advice and does not create a doctor patient relationship. Always speak to your own GP, specialist, or pharmacist before starting, stopping, or changing any medication, supplement, or treatment, especially if you are pregnant, breastfeeding, or have other medical conditions.
