Informing
Our 1st Mission: Informing
Our duty is to provide information about the disease and its treatment.
This is aimed at both patients as well as doctors.
1. The disease
What are its symptoms? What are its causes? Who is affected and why?
There are so many questions that patients and their loved ones, as well as doctors (including neurologists) ask themselves!
It is due to a lack of awareness that cluster headache is often confused with migraine or trigeminal neuralgia. Despite incomparable pain thresholds and marked cycles, this ignorance is one of the sources of the enormous diagnostic delay (2018: 3.7 years on average in Belgium) which leaves the patient in total suffering in the absence of treatment.
2. The treatments
Still, through ignorance, powerful opioid-based painkillers are sometimes prescribed to patients- Tramadol (or Tradonal), Oxycodone, Morphine patches, Fentanyl, etc.
These are unsuitable, even dangerous, and can lead to dependence ! (More information) While they can provide partial relief, they do not prevent attacks from occurring and are ineffective at stopping them.
Their risk-benefit ratio is completely unfavourable and, even if the disease in itself was “just pain”, these treatments can destroy the patient’s health, physically and/or psychologically. They can also cause other illnesses that are far from insignificant!
Toujours par méconnaissance, de puissants antidouleurs à base d’opiacés sont parfois prescrits aux patients : Tramadol (ou Tradonal), Oxycodone, patch de Morphine, Fentanyl …