Since the ramping up blog, things had settled down a bit, only a few odd spikes of pain. One episode of sudden pain caused by scratching my upper lip. The first time that has happened. But on the whole everything seemed relatively quiet.
Then this week I was taken by surprise by a chill northerly breeze, instant pain which has not settled down, feels like a cheek made from cracked glass, cold but hot, or skin that is stretched taught. Such odd sensations this TN thing can create.
I must see my neurologist sometime, wondering whether to go through the neuromuscular network, or to arrange a separate meeting with a neuro. I’d like to see just one person, but if they consider the TN to be a separate condition from the neuromuscular disease I have then there will be unnecessary delays. I think it will be best to contact the NMD network first to see if it’s worth going through them rather than general neurology. I’m fairly convinced that my primary neuropathy is the cause of my TN, so to me it makes perfect sense to go down this path…
Jon, How good to hear from you again, I was wondering how you are. Not good to hear of your new symptoms though, especially with your response to cold wind. I would think it would be useful to see someone sooner rather than later with autumn frosts approaching.
Hi Pat,
I’ve had a busy month or so. My son got married, and all went well on the day. Thankfully I had a quiet period with the TN.
I don’t like the cold weather, seems to bring out the worst of my many ailments. It looks as if TN will be added to the list.
How are you coping with the pain at the moment. I think the key is to keep an open mind on all possible pain relieving methods and find the ones that suit.
ttfn,
Jon
Jon, I’m glad that you were well for the wedding celebrations. I’m doing better than I could have believed: eating without much difficulty and cleaning teeth without pain. The jaw exercises seem to be working now after some difficult times. I went on to 20mg amitriptyline when things were really bad so the next questions are “Am I only in remission” and “What happens when I try to go drug-free”. Meanwhile it’s nice to move forward instead of treading water. Take care x
Hi Jon,
Sorry about the wind. That always concerns me. I had 3 l/2 great days followed by today which as been terrible. And I really don’t know why. It did rain but then it rained on Saturday and I did great.
So maybe tomorrow will be better. And I really hope it is better for you.
Liz