Orthostatic hypotension (OH) is a sudden fall in blood pressure that occurs when changing position from lying down or sitting to standing. The part of the brain that controls blood pressure is located in the brain stem. We know that the brain stem is one of the areas affected by MSA, which is why people with MSA can experience orthostatic hypotension.
Currently there are several pharmacological (medicine) and non-pharmacological (practical) measures that are used to manage OH, but often they do not control the symptoms fully, so people may still experience symptoms of OH. These include light-headedness, dizziness, fainting and falls.
This project intends to gather data on the impact of OH on people with MSA under the current standard of care. They would like to hear from patients, carers, and family members, who are willing to contribute their experience.
The data collected will be used towards the establishment of a national clinical guideline aimed to help patients, carers, family members and clinicians in the management of OH. Furthermore, it will provide further insight into existing gaps in treatment and the need for new medications for the condition, some of which are not currently available in UK, but are well established in other countries.
We are asking people to complete an online questionnaire that should take about 15 minutes to complete. If you would like to take part, please email scott.johnstone@nhs.net and a member of the team will get back to you.