Living with it on a daily basis how do people out there cope withthis horrible pain, I myself have been living with this for 6 long years its like along prison sentence I have constant pain am on a long list of medications am bed ridden at least twice a week the winter here in new zealand makes it worse as pretty cold and the air does not help so I tend to stay indoors alot but hard when I have a dog which needs walking every day. Before I got sick I loved life was the biggest party girl just really enjoyed being a wife and a mother but now I just stay at home please help and share your story and any tips you may have.
Hi Jo,
Some of the things that help minimize the horrid pain for me are;
- microwaveable heating bag
- Emla ( a lidocaine mixed cream) it helps numb the areas of my face for at least 15-20 min reducing the pain I feel)
- oragel/ambesol (cream/gel you place on your teeth)
That’s what I keep in my bag of tricks to soothe the pain.
It’s not much but it works for me.
I too stay at home, had to leave my job due to TN worsening and increased meds. My life changed completely., I’m 42 yrs young.
I’m in Canada so can relate to your New Zealand winters…one thing I do that might help you, ( if heat helps) I buy those “hot pockets” (those little bags people shake to warm up for outdoor activities) I carry them in my purse the odd time I’m out and about or at a family social function, I just shake it up and place in a piece of fabric along my face for some relief.
(( hugs )) for you, Mimi
Hi Jo, I too suffer from atypical neuraligia. It’s not easy and I too struggle with times I can’t get out of bed. I have no advice that Mimi hasn’t already given other to say there’s people here who care and can help in little ways to boost you when you feel bad. When you have no energy or are in too much pain to see your friends, you have a virtual friendship group here of people who understand x
Jo and Others with ATN. I was diagnosed with ATN approximately 7 years ago. I have been managing the pain through medication (gabapentin and Baclofen) as well as nerve blocks of glycerol and steroids from my ENT physician. Things went well most of the time for 5 years. Then the episodes of severe pain became more frequent and lasted longer. I have a high pain threshold and can manage the 24/7 pain as long as it stays below the 10 level. I sought out other forms of relief but all of the major clinics and hospitals in the USA have refused to do the MVD surgery after reviewing my MRIs. For 6 weeks the pain has been at the 10+ - 13+ level 24/7. I have not been able to talk without severe burning stabbing pain in my mouth,tongue and jaw. I also cannot eat solid food, protein smoothies are my savior. Good news is I have lost weight, bad news pain did not subside even after additional nerve blocks. However, as of last Monday after receiving acupuncture for both TN and inflammation of the adrenal glans my pain is manageable. I have had acupuncture before but only for TN and it only worked for a day. The idea to add treatment for the adrenal glands was the idea of my Orthopedic Surgeon (who is a friend) who performed recent surgery on my shoulder. My point is that I felt like I had reached the breaking point with no alternatives and pain I could not tolerate. It was not just the pain it was the diminished quality of life that was depressing. This new acupuncture treatment appears to have finally reduced the “fire and pain.” Try it. I know our severe episodes are unpredictable and appear to be unmanageable. But it’s working for me now. I will keep all updated. If you want more specific information just send me a friend request. Buschman