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How does TN affects our families

How does Trigeminal Neuralgia affect our families and others as well as ourselves?

I think I know the answer to this question but for now I shall keep my thoughts to myself. First of all here is a bit about me: I am Tom Pritchard, I have TN, I'm married, I'm 60 years of age, I am an ordained minister in the Church of England, I'm recently retired, I live in West Cornwall; and am Local Support Group Leader for Cornwall.

TN was first diagnosed many years ago when I went to a Dental School for emergency treatment complaining of "ramping toothache" and a pain like an electric shock going up the right side of my face. I was given Tegretol until it could be arranged for my wisdom teeth to be removed. The four teeth duly being removed, the pain went and I came off my medication. Nine years ago the pain returned suddenly and it was confirmed as TN. After a series of tests, I had a nerve block at Truro Hospital; the pain which had led me to bang my head against a wall went immediately.

In January 2006 the pain returned with a vengeance one day. I knew what it was but kept quiet, just hoping against hope that it would go away. Over the next fortnight or so, it increased in both frequency and severity. At this time I was the Vicar of Llangollen, in North Wales. The GP again diagnosed TN and I was back on Tegretol. The pain increased, the side effects meant that with an increasing dose I became unable to either read or drive, or function as the Vicar of a very busy Parish. The stress of meetings exacerbated the pain and eventually I felt that there was no alternative, other than to tender my resignation to the Bishop. The Bishop was supportive and suggested that I go on long-term sick leave. I did not think that this was fair to anybody, especially those in the Parish. So I returned with my wife to our own cottage in Cornwall, hoping for an MVD at some time.

Just before leaving Llangollen, the GP changed my medication and I was prescribed pregabalin; the pain eased, I could resume driving and was again able to read and write. Back in Cornwall again, it was suggested that I might like to take over the part-time post of Priest in Charge of two small Parishes; I jumped at the chance. The people in Mylor and Flushing were very welcoming, and fully in the picture about my TN and that I was awaiting a MVD. The MVD was eventually performed at Derriford Hospital, Plymouth, and initially seemed very successful. I had exactly four weeks without pain and then back it came again. Once again, I have had to leave a post and am now retired fully. I am currently on gabapentin. The surgeon was excellent.

My family have been put through the hoop with all this. Years of pain, procedures, tests, medication, my mood swings, house moves, changes of post, etc. They have stuck by me and, as a Christian, I thank God for that. I have been grateful that others have been prepared to take some of my load; driving me from church to church, reading all the things that I couldn't, helping with house moves and a hundred other things; praying for me and my family and asking how we are.

Does all of this seem familiar to some of you? I am absolutely convinced that it is the TN sufferer who has the direct pain but the families look on and share it. Families share the ups when there is remission and the downs as well. Much has been written about the medical aspects of TN and there is no doubt that great advances are being made and probably, in the not too distant future, TN will be conquered. I just wonder how much has been researched and written about the social side of TN and this is where I reflect upon my own experience. Do you know someone, maybe you, who has had to give up or change work because of TN? Have you had to make a house move? Has your social life changed? Have hobbies and interests changed? What adjustments have your family had to make for your condition? These kinds of questions interest me and I am willing to undertake research into them, if it would help others now and in the future.

To answer my original question - Yes, TN does affect those around us in many different ways. Perhaps you could let me know any examples of the social side of TN. (Your reply will remain anonymous if you wish.)  Please contact me via the TNA UK office.

Page last updated on 20 Nov 2014