Mayo Clinic Connect
Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp (8 years) has anyone had any sucessful treatment other than drugs
Has your neuralgia diminished???
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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.
Liked by marystefy
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.
Liked by Colleen Young, Connect Director, marystefy
This discussion has been moved to the Brain & Nervous System group https://connect.mayoclinic.org/group/brain-and-nerve-diseases/
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.
Liked by Colleen Young, Connect Director, barbarn, marystefy
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.
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.
Liked by marystefy, sjsmall5286
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.
I am a 55 year old female and I am just getting over shingles, I have/had in my left eye area, My issue is I get a very hurtful burning, my eye waters & closes down, Its like my left side is having a seizure. It has me in tears for at least a minute , This happens to me about 4 times a day , ,
I am on Gabapentin 600 mg, But I can only take that at night because it knocks me out. I am also on oxycodone 30 mg every 4 hours .OTC meds also put me to sleep.
This happened to me while I was driving, I had to pull over till it passed. Is this happening to anyone else?
What can I do to stop this?
Hi, @sjsmall5286, and welcome to Mayo Clinic Connect.
I've also personally had shingles and had to take gabapentin for postherpetic neuralgia. I did not happen to experience any side effects.
Here is some information on gabapentin on Mayo Clinic's website: https://mayocl.in/2MnHrD5.
You're describing a side effect that seems to merit calling your prescribing doctor immediately to bring it to their attention and get help.
Would you touch base later about what your doctor says?
I never did receive a worthwhile reply to my shingle problem. it has now been almost 14 1/2 years since i developed the PHN. it has not gotten any better or any worse in the last 10 years. It still hurts, stings, itches and burns 24/7, also it has blinded me in my left eye. (lot of infection and scarring of the cornea) As previously stated, I have tried every drug available, all they do is mask the pain on a temporary basis and make you goofy. if there is any kind of help out there, i sure could use help. The only new thing that I have heard, is the radio frequency ablation. That is a new one on me, if anyone has any experience or knowledge about this type treatment especially concerning the radio frequency ablation vs. PHN or any other treatment vs. shingles and PHN I would appreciate any information I can get. I would like to hear from any Doctor, Clinic or individual concerning any information about shingles and PHN. Thank to everyone. Oran Baughn
Liked by Lisa Lucier, Connect Moderator, barbarn, marystefy, sjsmall5286
After nine years, I'm finding gabapentin the most helpful. Three times a day makes me unable to function well, so I take 200mg morning and night. A neurosurgeon at Vanderbilt told me to never let anyone touch me with radio frequency ablation. I've since gone to a pain management specialist and a new neurologist. I now use a compounded cream along with my gabapentin and can tolerate my symptoms pretty well. I also take a stress med. The topical cream contains lidocaine, gabapentin and several more drugs.
Oxy…yikes. Hope you can get off that. I can't take 600 mg. gabapentin either so I take 200mg morning and 200 mg evening. I also now, after 9 years, have a topical compounded cream to apply several times a day to my forehead, eyebrow area. I went to a pain management anesthesiologist and he had this put together for me. It contains lidocaine, gabapentin and several other drugs. For several years my eye didn't dilate properly and that led to extreme light sensitivity. Your symptoms may go away at this point. Most do. Only a few of us have years of problems. In my case, I wasn't diagnosed & put on anti-viral promptly. I had a severe headache and no blisters until the fourth day.
Liked by Lisa Lucier, Connect Moderator, marystefy, sjsmall5286
I have had shingles. Ironically stress actually makes shingles erupt. The good news, if you see someone who can help you self-calm, you can influence (to a degree) your shingles episodes. I would check with a hospital professional about stress management. I just had a friend with eye shingles. I would stick closely to what the good doctors advise you to do. For Ron. Your well-being is my commitment
Tomorrow I am going to try CBD hemp oil herbal drops. Biggest concern is that they are not regulated by FDA, but I am trying to be careful about purchasing from a reputable dealer. From my studies, I do not believe the drops will cause any further harm – so… what the heck!?!? I seem to have PN, RLS, and PHN all in/on the same leg – so a good night's sleep is a dream I have…
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