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Suffering from PHN for 11 months, now a doc says it wasn't shingles any ideas?

By October 10, 2009 - 8:57am
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Have severe pain around both of my eyes. Upper eye lids are swollen, always have a headache and at times my face is painful. Hair hurts my face, my skin feels as if it has been burned. I also am over sensitive to odors, pollution, plants, etc. Recently a Neurologist stated that is not shingles but has no idea and doesn't really care what it is. Meanwhile I seldom sleep, it hurts to move my eyes and by the end of the day I am exhausted. I have been on all the usual meds for PHN.

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Right now we are working on your questions here at EmpowHer.

Quick question, did you have a flu shot recently?

We will look forward to your reply. One we hear back from you, we'll be able to provide you more specific information.

Thank you,


October 12, 2009 - 10:43am


I am so sorry that you're suffering with this, and I'm infuriated that your doctor was not more help. He/she actually told you they don't care what it is? Are you kidding me?

What happened when the symptoms first came on, Kashifa? You say it has been 11 months; did it start slowly or suddenly? Was it just in one area and then it spread, or has it been in the same place this whole time?

Did you ever have a rash? or any small painful spots that later went away? Or little blisters?

How soon did you start medicine for PHN? Are you on any medicine for it now?

Are there any of these symptoms anywhere else in the body? And how old are you, Kashifa?

And where do you live? Is it a larger city with many doctors, or are you limited?

For others who may be reading this, PHN stands for postherpetic neuralgia, a complication of shingles that affects the nerve fibers in your skin. It occurs when the nerve fibers are damaged during shingles.

Kashifa, I have had shingles, and the pain is EXACTLY as you describe. Yes, even a hair hurts. I have told people that even the breeze from a ceiling fan would hurt when I had it. I have so much empathy for you. Please write back with some more information and let us research it some more for you.

October 12, 2009 - 9:01am
(reply to Diane Porter)

Diane, I am seeking another doctor and getting a second opinion. At this point I am having some relief. The stabbing pain behind my eyes is less and I am sleeping more. I did have four tiny blisters close to my left eye. I am also not as sensitive to my skin and the air pressure. Two weeks ago I had a major reoccurance which seems to have started from a cold sore on my lip. I felt the pain all the way up my face, behind my eyes, up the optic directly into my brain. We went to two emergeny rooms but they were over crowded, and what would they do? I am now allergic to so many things; exhaust, soaps, cut flowers, dead leaves and so on. Because of this I am going to see a speacialist in allergies. I have been treating my symptoms as PHN, I take supplements to help my nerves heal which at moments they feel better. I still can't touch mt upper eyelids as they are tender and still swollen. I have also noticed that when I begin to have a reoccurance that my sinuses are so sensitive, I can smell everything and it feels as if I have no filter as if it is traveling directly to my brain. What I have read about PHN is that people have a lessened sense of smell. So I think it maybe good to see a doctor who has a different perspective.
Thanksgiving is coming and that marks one year. I have hope because things are slowly subsiding which as we both know is so great when you realize that you haven't had a headache for several hours.

November 2, 2009 - 7:40pm
(reply to kashifa360)


I am so glad you wrote back to update us. I hate that it has been almost a year for you, dealing with these symptoms. But I'm so very happy that you are getting little bits of relief and that you're getting mroe sleep.

I am interested that you have so many allergies -- did they begin AFTER this all started?

Did you see the doctor's question, below? We are wondering if there's any chance that you possibly had a flu shot last year before the symptoms began?

Please, please come back and update after you see your next doctor and get her or his opinion. I'm very interested in what you learn.

November 4, 2009 - 8:19am
(reply to Diane Porter)

Dianne, I did see an ENT recently and he diagnosed a sinus infection. I did some researching and found that my symptoms fit with Sphenoid sinuitis. I have been taking Augmentin for 10 days and have had some relief. My eyelids are still swollen and I still have a headache but it is less and I have been able to lay my head down with less pain. My symptoms fit with the diagnoses and I am hoping to get well soon. I had a very positive experience with my new doctor and left feeling that he would take care of me and not pass me off to see a shrink because I am crying from intense pain behind my eyes and lack of sleep. I am concerned that my condition was left untreated for so long and the pain around my eyes is still present. I have been researching recovery and trying to find out what I should or could be doing to help the healing time. I have been concentrating on the nerves since PHN was the initial diagnoses.

November 15, 2009 - 9:09am
(reply to kashifa360)


This sounds so hopeful!!! I have my fingers crossed for you that this doctor and this treatment is the beginning of the end of these symptoms for you. Your sentence, "I had a very positive experience with my new doctor and left feeling that he would take care of me" is huge.

What is the next step for you? How long does your doctor want you to take the Augmentin, and when will you see him next?

November 16, 2009 - 10:24am
EmpowHER Guest

Thank you for your question and I am sorry that you are suffering so much. So your physician said it wasn't shingles and doesn't appear to care what you are suffering from? Have you ever thought about getting a second opinion?

Here is information about shingles and it certainly appears to fit in your general explanation of your symptoms.

From the Free Library Website

Medicine Net also provides more information about shingles here http://www.medicinenet.com/shingles/article.htm

I certainly think that seeking a second opinion in this case is necessary, especially when you feel like you received the run around from your physician.

I hope this information helps. Please keep us updated on what you find out from a new physician.

October 10, 2009 - 10:33am
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