Medical care for patients who have a diagnosis of POTS remains hugely unsatisfactory. POTS or rather dysautonomia is a very heterogeneous condition.
No two people are exactly the same. There is no one single etiology that can even sometimes be identified. Often the patient who is really suffering looks alright from the outside.
Many doctors, largely out of ignorance or perhaps arrogance, don’t even believe in the condition. Many don’t know enough about it to start treatment.
Research into this hugely debilitating condition is only being driven by a handful of institutions with limited funding and a limited number of patients to recruit. Given the lack of big robust evidence, doctors tend to be unwilling to try out new medications which may through small studies have been shown to possibly benefit some patients.
Because doctors are reluctant to try out new meds, we don’t develop any experience and the treatment of the patient remains stagnant. It, therefore, becomes imperative for patients with POTS to become as informed as possible and become their own advocates.
In view of this today I wanted to talk about a medication that has been shown through small research studies to help some patients with POTS but one which is not being prescribed much because many people don’t know about it.
This medication is called Pyridostigmine. It is also known as Mestinon. Pyridostigmine: The science: In POTS/dysautonomia, there is an imbalance between our flight and fright response which is largely mediated by adrenaline and noradrenaline and the contrasting rest and digest system which is medicated by a neurotransmitter called Acetylcholine.
Much of the medications we use are designed to blunt or damp down the flight or fright response. However, it is possible that if we exaggerate the rest and digest response we could achieve the same result in a different way and in so doing it offers us another therapeutic target. Acetylcholine which increases the rest and digest responses is broken down by an enzyme called acetylcholinesterase.
If we had something which could stop the breakdown of acetylcholine by stopping the acetylcholinesterase enzyme from functioning, we could increase the rest and digest responses. This is where pyridostigmine comes in. Pyridostigmine is an acetylcholinesterase inhibitor and therefore should increase our rest and digest responses.