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Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp

Posted by @oranbaughn in Brain & Nervous System, Feb 27, 2012

Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp (8 years) has anyone had any sucessful treatment other than drugs


Posted by @1977lizzy, Wed, Aug 10 at 5:29pm CDT

Has your neuralgia diminished???


Posted by @oranbaughn, Thu, Aug 11 at 10:30am CDT

No, it has not. i have just learned to live with the burning, itching, stinging and pain. i have tried everything that i have been able to come across that might have helped. The condition is still very distracting and i loose focus quite bit. I do not do drugs. If there is anyone who has anything that will help, I would like to know about it.


Posted by @1977lizzy, Thu, Aug 11 at 10:52am CDT

My physician is looking into whether a Pain clinic will consider radio frequency ablation for my issues. A friend has had it done twice and it helped for six months. Will keep you posted.


Posted by @colleenyoung, Fri, Aug 12 at 4:20pm CDT

This discussion has been moved to the Brain & Nervous System group


Posted by @rareeby, Tue, Aug 16 at 6:37pm CDT

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.

Edited: 08/16/2016 @ 6:49pm


Posted by @1977lizzy, Wed, Aug 17 at 11:34am CDT

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.


Posted by @rareeby, Wed, Aug 17 at 12:34pm CDT

Again, you are an heroic individual; I had forgotten about the sensitivity to light -- I am somewhat sensitive at all times, and was even more sensitive during the time I was experiencing PHN symptoms. I was more concerned because the manifestation of symptoms occurred first with my "good" right eye; my symptoms were relieved if I used only the other (left) eye that required more correction. Now this right eye has deteriorated in a different way, and I can only wonder if it is related to the PHN.

I wanted to add a further footnote of encouragement to continue your research, using yourself as a subject of one. Please, please keep at it -- read everything you can on PubMed, and ask your doctors for referrals to others so that you may obtain complete copies of their articles, and not be required to pay research services for more than article digests (summaries). If you can find someone who lives near the National Library of Medicine, a volunteer may be willing to copy articles for you at cost, but not all experimental research is published.

Medical diagnosis is a gift, but treatment options are even more varied. Analysis of medical facts is merely analysis of facts. As a non-medical professional, I have analyzed medical facts and partnered these with my own observations to diagnosis. Only if you are living with the medical issues are you able to take into account environmental as well as genetic factors that may not have been studied before, but may become a hypothesis to be tested, based on your experience, your observation, and comparing your notes with others. Either the doctor will respect you more, or challenge your insight -- and if you are challenged, you might want to move on to other providers.

Trust your instincts; insist on progress. Consult with the hospitals at research universities for experts in the field. Begin close to home, and consider medial professionals outside the US, first in English speaking countries, and then in countries whose students study medicine in the US, and speak fluent English (South Korea comes to mind). Chances are you can develop a list of one or two dozen experts yourself. Look for their membership in organizations, and see who has been asked to serve as board member. Check their credentials on line -- consider what research is ongoing at their institutions, and volunteer to have your medical records reviewed to see if you are a candidate for any study that may be ongoing. Medical costs may be offset by study participation.

I am not a doctor, but with respect to unresolved medical symptoms, within my own sphere of influence, I consider myself a good diagnostician. I have diagnosed allergies; proposed an emergency treatment plan for allergic reactions to multiple allergens; advised medical professionals to avoid EMT's treating anaphylaxis as other than a life threatening condition. I have pursued a no medication treatment alternative, for a condition that was later found to be unresponsive to medication.

Encourage medical research in PHN. Advocate for better communication with doctors and patients about treatment protocols. is there a website for exchange of information? If not, we should make one. Don't give up. Being an outspoken advocate for yourself is not selfish; it is merely paying it forward for all others who will come after. Listen to your body, take daily notes, continue to meet and talk with others, doctors and patients, and family members. You don't need to agree to experimental (!) brain surgery, without a brain MRI, and the researcher, or your insurance may pay for most of the MRI. I think that may be interesting for you, and could rule out at least this researcher's hypothesis. Co-pay for an MRI can be $500, so shop around for the best price (varies by a factor of two in some areas) and choose a commercial entity recommended by a neurologist, one with the most detailed scans available (there are two types, 1.5 and 3.0, and I think 3.0 is the most detailed). Ask for the most experienced technician. Consider with and with/out contrast (avoid dyes if you are allergic) for the most information. A neurosurgeon who orders the MRI, may read it for the cost of a co-pay. I agree with your decision to avoid any surgery, especially brain surgery, that is experimental. Now you know the outer limits of your tolerance for treatment -- another lesson learned.

Again, I hope this helps. I understand that this information may become public, and I encourage anyone who reads this to reach out to me, particularly if they are experiencing symptoms post 50 and beyond -- in their 80's, 90's or later.

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