The third (and virtual) meeting of the Nottingham TNA Support Group took place on the 28th of November run by John Vanhegan with Helen Clayton as host. Seven attended – including two new faces.
Much good news was reported (we could certainly use it lately) by several of us being pain free at the moment. In my case it’s a combination of my meds working and going through a good patch. Other members reported the same but another trumped us all by reporting some treatment which had a remarkably positive impact. After seeing a succession of GPs with no beneficial results a friend suggested she contact a Cranial Osteopath for a Zoom consultation. They spotted an unknown tendency for her to tilt her head to one side slightly which was thought to be contributing to the TN by restricting blood flow to one side. Some simple exercises and ongoing yoga for the face have resulted in her being pain and drug free since. While this is not a course of action recommended by TNA we were all very pleased for her.
One member reported some frustrating experiences with medical professionals. Her dentist referred her to a Maxillofacial surgeon who was initially disbelieving of her pain and it was only when a flare started during the consultation that she was believed. She was later put on a low dose of Amitriptyline which was of little help. On holiday some time later she was in enough pain to call 999 only for a paramedic to also dismiss her TN and gave her a couple of paracetamol for it. Subsequently, her GP and a hospital visit have progressively increased the dose of Amitriptyline resulting in being pain free at the moment with no significant side effects.
Another member is planning to start a support group for members under 25. She told her own TN story and reported similar problems with people not being familiar with TN, especially in someone so young, resulting in getting help not being straightforward. After some serious side effects of Tegretol and an MVD she is now managing to live with the pain using Amitriptyline and some CBT (Cognitive behavioural therapy) support.
A previous attendee has good results with just Tegretol but it was suggested she explore moving to the slow release formulation to make it less likely that the pain will break through early in the morning.
The sensation of ants crawling across her scalp was the start of another member’s TN and she was fortunate enough to be given an early diagnosis. Tegretol helped her for a while but lost its effectiveness over time. Any wind or draught on her face is the main trigger now. Pregabalin and Amitriptyline now work well but the short term memory loss issues trouble her. Her GP leaves it to her to self-medicate by changing doses to suit how she is. Mine does too and it works well for me.
One member tried without success to join us by entering the meeting ID and password rather than just clicking on the link. I contacted her later to make sure she was OK to do it for the next meeting.
We all agreed to continue with Saturday meetings starting at 2 o/clock and the next one will be soon after the forthcoming TNA presentation Zoom which is on January 21st. I’ll send details round in the New Year.