← Return to Postherpetic Neuralgia (Shingles) nerve damage

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@rareeby

So sorry that you are still experiencing pain; I understand how distracting this can be. I was diagnosed w/in 24 hours of symptom onset, by an exceptional dermatologist, and my eye doctor became a part of my treatment team. Even so, the neuralgia eventually spread from the upper right quadrant (eye, forehead) to the left, altho never to the extent on the second side as on the first. My worst symptoms declined w/in a year, but I continued to experience mild symptoms for as long as three years, and most recently as I write to advise you that you are not alone. Much less than a mosquito bite, but it is still there.

Perhaps, as my immune system declines with age, PHN will be an issue again. For your own treatment, I encourage you to pursue the treatment that worked for your friend, and to investigate medical trials, as well as to seek more than medical support for your pain. Upon referral from my dermatologist, I consulted a psychiatrist, and found that medications to reduce anxiety did not address the underlying cause of the neuralgia, but they did help me to sleep. This was discontinued when my symptoms ceased, but I recommend that you keep an open mind about the relationship of sleep to both pain and anxiety about pain.

Consulting a psychiatrist, especially one experienced in PHN, is suggested as one approach to benefit from a broader view of medications that may improve your quality of life, and also provide information about other medical trials for which you may be qualified.

Being clear about your wellness objectives is an important first step that you have already taken. I wish for you, wellness. I wish you well.

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Replies to "So sorry that you are still experiencing pain; I understand how distracting this can be. I..."

You are very kind to respond in detail. I do take stress Rx and Gabapentin which helps a bit, but with side effects. My M.D. is checking with pain clinic in nearby university medical center regarding the possibility of radio frequency ablation being used for trigeminal nerves. I was in hospital four days before being diagnosed & then given Valtrex in large doses. The blistering on my forehead/eye/scalp didn’t pop out until days of severe unilateral headache. I was on IV Demerol but my family asked for an ophthalmologist consult because I kept saying my eye was the problem. He diagnosed me the minute he saw me. Then I was moved to isolation. My eye wasn’t dilating properly for months so I could not tolerate light…….and driving! I consulted a neurosurgeon who offered an experimental brain surgery. I declined that !! I take Rx for sleeping and use frozen gel pack on my head at night or any time itching/pain gets out of control.

I hope you are feeling better since the time you posted the message and the the pain has diminished or even better, vanished.

I am responding to this post, since you say that the ” neuralgia eventually spread from the upper right quadrant (eye, forehead) to the left”.

I had shingles in my left eye seven months back (March 2017). My eyesight has since returned to normal and the IOP in both eyes is stable and normal. Occasionally, I get pain spikes in the left side of the head and the left eye and the back of the head on the left (the side that got the shingles). I tried Gabapentin and then Amitriptyline 10 mg (once a day) and then back to Gabapentin.

Further, I still get pain and notice some mild redness in the left eye when I get up in the mornings. I also get low grade pain in my right eye and and right side of the head. The neurologist, and the GP say that it will go away. In addition, I sometimes feel lightheaded sometimes in addition to a very mild sense of imbalance (as though I am on a gently rocking boat). This does not interfere with my daily activities, it is just disconcerting. Acupuncture seems to diminish the symptoms and hold them at bay for at least a day.

Wondering if anyone else has heard of or experienced similar symptoms. Many thanks.

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