Living without TN

I don't miss trigeminal neuralgia. That may seem an odd thing to say and very much like stating the obvious, but even though I've had what seems to be a successful MVD i.e. no pain, no meds, there's not a day passes that I don't think about it, even after 16 months pain free. I do of course have a constant reminder in the slight tingling numbness on the left side of my face. I was advised that it may take up to three years to go, if at all. If it doesn't, it's so mild it won't be an issue. I'm already thinking that it's permanent as the feeling hasn't changed since my MVD.

It's only just recently I realised how traumatic the whole experience was for my wife (and the rest of my family) after she really opened up about it the other week. She was a tower of strength throughout the worst of my TN, but it's taken it's toll on her. I've asked the question before, would I have been as strong as her if the roles were reversed? I would like to think so, but when you consider that she had to continually pick up the pieces for around eight years, I honestly don't know if I could have shown the same resilience and mental stamina. It's not only that she had to deal with me literally screaming because of the pain, in the aftermath, I would be so heavily drugged that my contribution to any semblance of a normal family life was non existent. The upside to this is that our relationship is ferociously strong. It was strong before, but just seems better now. My wife might offer a different view as she constantly talks about trading me in for a newer model.

I still find it difficult to talk really openly about TN even though I never made any secret of the fact I had it. Talking about it has the ability to bring the rawness of my experience rushing back and evoke very strong emotions. That's perhaps the reason I keep this blog going, even though I don't post nearly as often as I did. I don't mean to sound negative, because I'm not. I am leading a normal life, I have another new granddaughter, that's three in total, I golf, go holidays, enjoy family occasions etc. In fact, I am all the more appreciative of my life now, having previously taken my good health for granted.

I cannot thank the members of the Living with TN website enough. Again, I've said this before, there is a wealth of ignorance among health professionals who deal with TN only rarely. That's not a criticism, just a statement of fact. I was lucky in that my GP was onto it in a flash (pun fully intended) and started me on the medication which was to be my constant companion for the next eight or so years. I was referred very quickly to a neurologist, had the necessary MRI scans (four in total) and ultimately, my MVD. That it took eight years to reach that point was more down to my own resistance to allow anyone to poke around inside my head rather that any sloppiness on the part of the NHS.

The Living with TN website allowed me very quickly to access the information I so desperately needed. The empathy and support I received form fellow members was outstanding. I reached a point where my doc said I knew more about the condition than he did. You can read all the technical manuals, research papers etc. you want, I did, but it's only by tapping into other sufferers experience that you really begin to understand what this terrible affliction means. The information, advice, but most of all the previously mentioned empathy and understanding which are part and parcel of this community gave me the prop up I so badly needed from time to time.

So onward and upward dear friends. I'm currently planning a trip to New York which will be in at the end of March, if not then, May. It's funny that while I was working, all I wanted to do was lie on a beach or by the pool, but now, every break we have, we try and tick something off our bucket list. Maybe it's just an age thing. I'm thinking Japan and China for next year.

Thank you for posting this! My nurse practitioner diagnosed me very quickly as well. But since my diagnosis in August, I have had to increase my meds 3 times and now I am having breakthroughs again. Thank goodness they have referred me to a neurosurgeon. I see him on the 16th. I am hoping he can get me on a better combo of meds so that I can hold off for just a little while. If that doesn't work, then I will go ahead with the MVD. I will have to do it in July or October because of work. I have a little beach vacation with my husband in May. We got a beautiful condo right on the beach and you can open the french doors from the living room OR bedroom and go out on the balcony! Enjoy all your vacations! I think this TN thing gives us PTSD.

Dear Jim,
Thank-you for continuing to come back and sharing your journey!
I could relate to so much of what you wrote, especially regarding your wife. My husband has had to take it all on, I can’t even drive anymore, it’s been a year. He never complains, and I feel very blessed.
I’m so very pleased that you are doing well and enjoying life.
I very much appreciate your post, it was timely for me today.
Continue enjoying those grand babies and life in general, with gratitude,
Mimi xx

You have posted a wonderful story, one of hope and inspiration. I have been 3 months pain free post MVD and there is not a single day that goes by that I do not think about this horrific condition. I try to make the most of each and every day more than I ever did before. I pray for an answer for this disease so that no one would ever know that kind of pain. Your wife is a truly remarkable woman and I hope you tell her that everyday!