Postherpetic neuralgia (shingles): Looking to connect with others

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.

My father is undergoing chemotherapy and experienced severe shingles as a side effect. He’s suffering and can barely sleep. Has anyone tried CBD or THC topicals?

My “severe shingles” diagnosis was nine years ago in January, and it WAS a life changer. A couple years later I woke with a strange neurological condition called Horner Syndrome, as well as Burning Mouth Syndrome. At this point, I was accepted to be seen at Mayo. The outcome was naming my problems, not solving or curing them. I’ve come to realize that it’s up to me to figure out how to live around this demon in my head.
I take Gabapentin (400mg, at 8am,2pm & 8pm) having tried Lyrica a couple times and found it to be no improvement. I tried Electrically Assisted Acupuncture at a hospital, but a few treatments effected no change. THC and CBD were tried (this from a girl who never even smoked pot!)….my desperate attempts just failed. I was prescribed nortriptyline, along with the Gabapentin (also used for depression). It didn’t diminish the pain, but I felt like I wasn’t giving up. Imitrex, Nurtec, Duloxetine: no help and obvious side effects.
When this started, I would wrap my head in cold, wet towels….now I’ve got it down to sleeping on ice packs. Before bed, I spray the affected part of my head with pure aloe Vera & slather my forehead with Aspercreme w/Lidocaine (I use it in the morning also). Trying to eat healthy can’t hurt. I found that fried foods of any kind accelerated the pain level. A good friend who’s an optometrist reminded me of a neurologist having once mentioned Botox being helpful. I’ll keep you posted on that one! Wishing you blessings.
Wish I could honestly help!

4 year post hepatica neuralgia @ LSFace
I’m interested in communication with individuals with similar issues.

@yogat, you might be interested in this related discussion:
- Anyone have Postherpetic Neuralgia from shingles on the face?https://connect.mayoclinic.org/discussion/postherpetic-neuralgia-1/

I have had PHN since March 2020. It was during Covid and I was misdiagnosed by an eye doctor during a zoom call. I ended up with shingles in my eye and forehead. No misery like this. I take 100 mg pregabalin 3 times a day. It helps some but nothing stops constant burning and itching of my eye and face. I keep a face roller in the freezer which can be soothing but the worst thing is knowing there’s no solution.

I have PHN. Got shingles in July the minute I turned 60. On my right side. Bending, twisting, lifting anything that stretches the oblique muscles is uncomfortable. It's like I have a belt on that I can't loosen. I'm on 200mg 3x/day but trying to wean off. ((Hugs)) I had also added magnesium to my diet after watching some YouTube videos. There is also a thing called Scrambler therapy that I need to look into.
Good wishes!