Shingles and Postherpetic Neuralgia: What helps with Pain?

@pschulte You have my prayers this morning !
Having shingles in Jan 2017, and dealing with such similar problems, I just need to tell you that you aren’t alone….and we’ll all, somehow, get through this together. My eye doctor did an amniotic disc implant, which helped the scarring. It was like wearing a contact lense and was painless. My sister came up with a shampoo at a Health Supplement Store (it worked, using cool water). I do still put off haircuts longer than I should! Ice packs help & I have a refreezeable one called a Headache Halo (Amazon) that helps to get to sleep. This is an “I can do this!” situation.
All the best, margie

@margiem You have my prayers also.
You have been dealing with this since 2017......gosh. I am going to ask my eye doctor about the disc implant. I still can't see out of my eye and the pupil doesn't dilate. I'll have to try headache Halo. Washing and drying my hair is miserable. I haven't gotten my hair cut. I just keep trimming the banks. I just don't want anyone to touch my head. I am going to keep you message and I am here anytime you want to vent. I have an appointment with a pain management doctor. I don't want any narcotics.
I'll let you know if they are able to do anything. I'm sure the first appointment is just a consultation.
Wishing you all the best. I don't know how we do it.
Patti

@pschulte Thanks for your compassionate note! I trimmed my bangs yesterday and said a prayer for You. I want to tell you that I can actually wash my hair in a nice hot shower now…it took awhile, but there’s a morsel of Hope. Stay away from shampoo containing perfumes or preservatives. The Ambio disk on my eye reduced the scars on the back of my cornea. To help with the evening/nighttime stabbing/throbbing, when my head feels like a radiator, I keep a small spray bottle of aloe vera in the refrigerator. Other than the hospital administered drugs at the onset, I have taken Gabapentin. Presently, I’m having a less than wonderful time, trying to eliminate or at least reduce the amount. The pain management answer I was given was for pain blocker injections. One in my forehead at Mayo Clinic helped somewhat for a very short time, but the injection site was so painful. A couple more in slightly different areas had similar effects. I wish you success in finding helpful solutions and be proud of yourself for avoiding narcotics! You probably have a microwaveable mask for your eyes? My ophthalmologist told me that the absolute worst part of what I (we) have is that I (we) LOOK FINE!
With hugs, Margie

Hi all,
I have postherpetic neuralgia. The pain and burning are terrible. Mine actually started in my eye. Since November 21, 2024 I have had this pain and was hospitalized because I ended up with Encephalitis. My opthamologist is working on my eye. I can see out of it just a bit now. The pain and burning in my head and eye are horrible. The nerves are so messed up. My head feels numb, but burns and still get stabbing pains. Washing and drying my hair is so painful. I don't think I will ever be able to get my hair cut again. I was wondering if anyone used the Cold light therapy around or directed at you eye. My Neuralgia it exactly half of the right side of my face that is in pain. I try the link, but it does not work anymore. I looked on Amazon for the Cold laser therapy but don't know what one is the correct one. Could some one direct me to the cold laser you have been using that works. I need all of the help I can get. Thank you.

@pschulte Hi Patti, I never meant to ignore your query about Cold Laser Therapy. Since I’d not even heard of it, (and I’ve lost count of the number of Dr.s I’ve seen since this adventure began, non of whom ever mentioned it), I’ve been reading a lot. We do need to be our own advocates, without putting ourselves in the Guinea pig category!
A few years ago, a neurologist suggested I have Botox injections (yes, I am a wrinkly old person….but this would be to help the pain from PHN) My ophthalmologist consulted a friend/neurologist and they agreed not to take that route. The proximity to my eye could cause many more problems than it would resolve. Reading possible Cold Laser Therapy side effects mentioning retina damage is scary too.
I do take a drop of Aspercreme with Lydocaine (over the counter) and rub it on the right side of my forehead, down to my cheekbone, not near my eye or on my eyelid. It “calms” the nerves a bit. That’s become part of my bedtime ritual. I wish you Sweet Dreams!
Margie

Would Gabapentin and or Cymbalta (duloxetine) used for nerve pain be helpful?
Check with your primary care clinician.

@marietter Thank you I have just come of Gabapentin and gone onto Pregabalin the other one you suggested I felt like a zombie on them so a no no for me thank you anyway

@burchy2026 My primary care felt that Pregabalin would work better than the Gabapentin that my pain FNP prescribed. So I may change. The pain clinic felt that Pregabalin had to be closer monitored. So far I’ve not had any strange side effects. Hugs my friend. Keep smiling!

@pschulte Hi Patti, I never meant to ignore your query about Cold Laser Therapy. Since I’d not even heard of it, (and I’ve lost count of the number of Dr.s I’ve seen since this adventure began, non of whom ever mentioned it), I’ve been reading a lot. We do need to be our own advocates, without putting ourselves in the Guinea pig category!
A few years ago, a neurologist suggested I have Botox injections (yes, I am a wrinkly old person….but this would be to help the pain from PHN) My ophthalmologist consulted a friend/neurologist and they agreed not to take that route. The proximity to my eye could cause many more problems than it would resolve. Reading possible Cold Laser Therapy side effects mentioning retina damage is scary too.
I do take a drop of Aspercreme with Lydocaine (over the counter) and rub it on the right side of my forehead, down to my cheekbone, not near my eye or on my eyelid. It “calms” the nerves a bit. That’s become part of my bedtime ritual. I wish you Sweet Dreams!
Margie