The meeting was well attended with several new faces including some ‘visitors’ from outside Cheshire. Everyone was very welcome and we had a good discussion.
Many people had attended the recent national zoom presentation led by Giorgio Lambru. We were impressed by the multi-disciplinary team who work in the Facial Pain clinic alongside him. It sounded like an excellent arrangement but unfortunately it is not replicated around the country.
Everyone shared their story or gave a brief update since the last meeting. There was a lot of discussion about medications and the difficulty of managing side effects including a rash, tiredness and cognitive impairment. A couple of participants struggled with carbamazepine and /or oxcarbazepine because it caused them to have low sodium levels. One member struggled with his medication because it interacted with another he was taking for a separate condition.
Several members choose to take supplements such as vitamin D, vitamin B12 and folic acid and feel this helps them.
Two members were waiting to have scans to further investigate their symptoms. One lady was due to have a CT scan and one lady was waiting for an MRI scan. For anyone nervous of having an MRI scan, the consensus approach was to close your eyes! Some people found they were able to have music playing during their MRI scan. This helped to distract them from the loud noise of the scan and provided a different focus. Some used breathing techniques to calm their nerves.
Sadly, there were some members attending who were experiencing a lot of pain. As consultations are even more difficult to secure during the Covid pandemic, we talked about the importance of being well prepared for appointments to help us achieve the best outcomes. It was suggested that members have notes ready to help them give a detailed description of their pain and their triggers. We sincerely hope that these members find some effective treatment soon.
If you would like to attend the next meeting, please email email@example.com
Helen Clayton, Cheshire Local Support Group Leader