Shingles and Postherpetic Neuralgia and Pain

Posted by tikigod18 @tikigod18, Jan 13, 2019

Has anyone suffered from LONG lasting neuropathic pain as a result of Shingles, and what treatment do you use for the pain? My daughter had shingles at 21, a spinal cord stimulator inserted and removed, many trigger point injections, all of which may have contributed to the thoracic pain she has. She is now 34, and teaches yoga, but is still on a compound prescribed by a pain management Dr. in NYC what is basically Oxy. I am paying for this, since neither she nor her husband can afford it at around $500 a month. She could not find a physician in Fl. I know who would prescribe this medication after 10 years, thus the use of an out of state physician. I do not want to see her suffer, nor can I discuss much with her since we barely speak, but this expense, coupled with paying for asthma inhalers that are expensive is becoming more and more of a strain. Any thoughts for alternatives are appreciated.

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Theresa, I have a bottle of Gabapentiin sitting here that stares at me every day. I used it a couple of times at night, but woke up just as tired as I was when I went to bed. I stopped taking it after that. I have to have what energy I do have to get me through my days. I can't afford to be sleepy all day. My doctor recently prescribed a very mild Opioids for me, but because it is an Opioid I didn't get the prescription filled. Just 2 days ago when touching the left side of my face directly to the left of my left eye I noticed a dry skin spot that is very sensitive to my touch and prior to that I have been having what I call eye headaches, like my first time with Shingles. Needless to say I am on high alert. So far this spot remains and is not going away. I have been also having very strong electrical sharp pains near the hair line. I am watching it closely, but I don't want to be paranoid. So far not really what I would call tingling. I pray that does not happen. I know I might be my own worse enemy by not taking the drugs, but I don't want to put on any more weight. I lost 20 and put 8 back on and it is a yoyo since then. Prior to this I normally didn't have a weight problem, but I do now. It goes on just looking at food. Thank you and I will keep you posted. Pray it is not Shingles, again.

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I have almost 9 years.. Have spinal cord stimulator ( some help), 800 mg 3x daily still have pain

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@jerid

Does anyone here experience Shingles chronic PHN. I just don't know how to handle it anymore. If anyone has a positive answer to rid ones body of this pain, please tell me.

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Hi Jerid

I suffer with PHN almost 9 years. keep positive, yes it's hard.

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Hello @paulbklyn and @jerid and @patsy0315

Only as you are comfortable doing so, I was wondering if you could share with me what your symptoms are for chronic PHN? Do you have pain, if so what is the pain like, i.e., pins and needles, sharp inner pain, skin pain? I'm asking because while I'm just starting my treatment with recent-onset Shingles my pain seems to be a combination of right-sided deeper pain but also skin discomfort that feels like a sunburn or chapped skin. Does this sound familiar to any of you?

If you have another type of discomfort and are comfortable sharing these details, please describe them.

My neurologist has advised taking the Gabapentin as needed and in the amount needed. I currently take 300 mg at bedtime if I'm having discomfort when I first lay down. I have a bottle of 100 mg so if I want to take less I can. Would you mind sharing what dosage you take?

Right now I'm taking a course of Prednisone and the symptoms are so lessened that they don't require any Gabapentin. I'm not sure how long that will last after I taper off the Prednisone. Were you ever treated with Prednisone at the beginning of your Shingles treatment?

I appreciate you sharing your experiences. It will help me to understand this difficult diagnosis a bit better.

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I have r/s neck and shoulder pain. Sometimes constant, sometimes not. Mostly bad at bed time, very hard to sleep, Gabapentin 3x 800, spinal cord stimulator, they say sometimes it goes away by itself. Hard to wear shirts, jackets as it rubs against my neck. Hope you find relief Paul

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@hopeful33250

Hello @paulbklyn and @jerid and @patsy0315

Only as you are comfortable doing so, I was wondering if you could share with me what your symptoms are for chronic PHN? Do you have pain, if so what is the pain like, i.e., pins and needles, sharp inner pain, skin pain? I'm asking because while I'm just starting my treatment with recent-onset Shingles my pain seems to be a combination of right-sided deeper pain but also skin discomfort that feels like a sunburn or chapped skin. Does this sound familiar to any of you?

If you have another type of discomfort and are comfortable sharing these details, please describe them.

My neurologist has advised taking the Gabapentin as needed and in the amount needed. I currently take 300 mg at bedtime if I'm having discomfort when I first lay down. I have a bottle of 100 mg so if I want to take less I can. Would you mind sharing what dosage you take?

Right now I'm taking a course of Prednisone and the symptoms are so lessened that they don't require any Gabapentin. I'm not sure how long that will last after I taper off the Prednisone. Were you ever treated with Prednisone at the beginning of your Shingles treatment?

I appreciate you sharing your experiences. It will help me to understand this difficult diagnosis a bit better.

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@hopeful33250 Teresa, I'm very sorry to hear you are experiencing this pain. I wish you the best going forward with treatments.
Be well,
Rachel

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The first signs of my Shingles started with inner left eye pain deep inside the eye. At first I never gave it much attention, but when it wouldn't go away even with Tylenol I went to my chiropractor and with a few adjustments it relaxed for about maybe half a day, but returned. He was closed the next day so I went to a different chiro and his adjustment did nothing. Then I noticed like a dry patch of raised skin just to the right of my eyebrow and the hair line tingled. I got on the internet right away and looked these symptoms up and it said Shingles. I thought "I couldn't have Shingles", why I didn't think I could was beyond me. It was a busy day in our small town... football homecoming parade, 50 yr class reunion for a few friends who had asked my husband to take pictures of them on their float. I brushed it off. The tingling and pain continued and actually got worse before the blisters started. The pain was like a bolt of a lighting shiver that went through my entire body. I either had to scream or literally hit a wall with my fist. Whenever I would feel it coming on I would try to psych my self out with mind over matter to try to make it not happen. It didn't work. Then came the blisters. I went to an alternative medical lady in town and she did some hocus pocus stuff on me, that didn't work. I read on the internet where potato skins help to relieve pain so I sat up one night trying that. i also warmed a damp cloth in the microwave just enough to heat it like a heating pad and wrapped it around my neck because by that time the pain was there as well. That worked as long as it was warm, which ended up being yet another all night trial treatment for myself. Finally the blisters got to the point I had to go to the doctor and he thought it might have been a 2nd degree burn from a heating pad I had used a day or two prior seeing him. NOT! That was in the middle of the week and on Sunday I was had. I took a shower and couldn't even get dressed. I wrapped in a towel and told my husband I had to go to the doctor. A different doctor. We went to the emergency room and had to wait about 30 minutes for the on call doctor to arrive and I told him everything, even including the burn theory. He said no way was it a burn. It was Shingles. My left eye was completely swollen shut from the blisters and my forehead was a mess. He wanted me to take an ambulance to a Nebraska hospital where he was told that a eye specialist would be there to examine my eye. My husband took me up and there was no eye Ophthalmologist there for 2 days. It would not have mattered any way there was no way he was going to get that eye lid to open. Long story short they took care of me. Put me on pain IV's and valacyclovir and steroids. I went home after 4 days, but a few days later I returned due to the severe pain I was in. The night before returning I woke up with a scream and tears due to the pain. Another 3 days. I was on Valacyclovir for months because everyone was so afraid of it returning. I had one recurrence of the Shingles about a year later, but I was right on it and my official doctor took care of me that time, which I wish I had gone to him in the first place. I have no idea why I did not. I took the original vaccine about 4 months later and then the new vaccine came out about 8 months after that (that I knew of) and my doctor put me on a priority list for the vaccine. People told me it was a piece of cake to take. Let me tell you I was so sick from the first part of the vaccine. Later I was told the more reaction to the shot the better it was for you to prevent a recurrence of Shingles. The second shot would have been just as bad, but my pharmacist told me to take a couple of Tylenol prior to the shot and it should help me. It did. I still got sick but not as sick. Today I find cold water, ice packs at night or whenever needed helps. Also I found at Walmart a topical called "Pain Away" and it helps from time to time and also Peppermint works, just don't get it in your eye. I think I mentioned before that I swim a lot in the summer and the cool water works great. So I took of swimming a mile everyday during the summer to get me through. It's a long journey. 4 years later and I am still suffering. In July I did a radio frequency treatment to burn the nerve. It worked for 2 weeks and I am back to misery. I am 65 and my Medicare will only cover 2 treatments a year 6 months apart. I only have 4 more months to go. Ugh. If you can find the "Pain Away" topical I really suggest it. If you can't find it at your local Walmart look online. My heart goes out to all who are suffering from PHN. Maybe one day a remedy without drugs will be found for this horrible suffering. God bless all of you.

P.S. The pain is everyone of those you mentioned. I get such sharp pin and needle pain it makes me stop and actually stop what I am doing to try to relieve it. I actually get what I call electrical sharp pain. Sensitive to light. I have grown to like the darkness when needed. Dinners are done by candle light. Special blue light computer glasses are required. My left eyeball swells and is dry. I constantly use eye drops. The variety of sensations or pain are endless. 🙁

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@jerid

Theresa, I have a bottle of Gabapentiin sitting here that stares at me every day. I used it a couple of times at night, but woke up just as tired as I was when I went to bed. I stopped taking it after that. I have to have what energy I do have to get me through my days. I can't afford to be sleepy all day. My doctor recently prescribed a very mild Opioids for me, but because it is an Opioid I didn't get the prescription filled. Just 2 days ago when touching the left side of my face directly to the left of my left eye I noticed a dry skin spot that is very sensitive to my touch and prior to that I have been having what I call eye headaches, like my first time with Shingles. Needless to say I am on high alert. So far this spot remains and is not going away. I have been also having very strong electrical sharp pains near the hair line. I am watching it closely, but I don't want to be paranoid. So far not really what I would call tingling. I pray that does not happen. I know I might be my own worse enemy by not taking the drugs, but I don't want to put on any more weight. I lost 20 and put 8 back on and it is a yoyo since then. Prior to this I normally didn't have a weight problem, but I do now. It goes on just looking at food. Thank you and I will keep you posted. Pray it is not Shingles, again.

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Hi @jerid

I would encourage you to see your doctor (or perhaps a walk-in-clinic) and have someone take a look at that. If you start taking some anti-viral meds within a short period of time you can often short-change the Shingles process. Having facial shingles can be more serious as you well know.

Will you contact a medical professional?

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@hopeful33250

Hello @paulbklyn and @jerid and @patsy0315

Only as you are comfortable doing so, I was wondering if you could share with me what your symptoms are for chronic PHN? Do you have pain, if so what is the pain like, i.e., pins and needles, sharp inner pain, skin pain? I'm asking because while I'm just starting my treatment with recent-onset Shingles my pain seems to be a combination of right-sided deeper pain but also skin discomfort that feels like a sunburn or chapped skin. Does this sound familiar to any of you?

If you have another type of discomfort and are comfortable sharing these details, please describe them.

My neurologist has advised taking the Gabapentin as needed and in the amount needed. I currently take 300 mg at bedtime if I'm having discomfort when I first lay down. I have a bottle of 100 mg so if I want to take less I can. Would you mind sharing what dosage you take?

Right now I'm taking a course of Prednisone and the symptoms are so lessened that they don't require any Gabapentin. I'm not sure how long that will last after I taper off the Prednisone. Were you ever treated with Prednisone at the beginning of your Shingles treatment?

I appreciate you sharing your experiences. It will help me to understand this difficult diagnosis a bit better.

Jump to this post

Thanks all. Seems another shot of shingles vaccine is needed. Fyi after getting shingles despite vaccine. I got a torn retina spot where shingles was.

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Hello @manila,

As you are new to the discussion on Shingles, it sounds like you have previously had Shingles near the eye, is that the case?

If so, please share a little of your story about your Shingles experience. Please share only as you are comfortable doing so.

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