Start a shingles phn support group?

I would be there - I have it too. I would love to hear how people are dealing with this.

I think it is helpful to others who are going through a similar thing so I will continue to share without whining too much.
I always have a band of pain around my torso. The band never leaves me but I can distract it with aleve a ibuprofen. I was in bed for four months since December but now i do things daily but must rest frequently. It is worse at night.
On a positive note, my family is very supportive.

Sara - I have that band also - along with the nerve pain and surface pain in that area. It is 4 weeks. The rash is going away, the pain is not. I was told not to take Aleve long term, it can cause intestinal bleeding, so yesterday I bought Tylenol. I take that along with the Gabapentin; it allows me to function. At night, to sleep, I take 300 mg of Gabapentin, and I sleep all right.
May we both - be pain-free one day.

I’ve been living with post-herpetic neuralgia (PHN) on the left side of my head for three years, ever since a shingles outbreak. This damage in my case the pain is constant and debilitating. I was originally prescribed gabapentin, 600 mg three times daily, but I had to discontinue because of severe side effects — brain fog and extreme swelling. My neurologist transitioned me to pregabalin, which I’m still taking. I also use 5% lidocaine patches and cream daily — I keep them in every room of my house, in my car, and at my desk at work, just to get through the day. Every morning I add an antihistamine tablet to reduce nerve irritation, but my symptoms persist. On bad days the pain radiates through my nerves esp on my forehead and eyelid making it hard to concentrate or keep my eyes open. I often experience dizziness, and about once a week I’m so fatigued that I fall asleep in the afternoon and still need a full night’s sleep afterward. This condition has dramatically reduced my quality of life. I feel like a shell of who I used to be. My husband worries about me constantly, it’s difficult for both of us to accept that this may be my new normal.