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.

Hi @tikigod18 it must be frustrating to watch your daughter have such long lasting pain.

I wanted to introduce you to fellow connect members @cdcc @oranbaughn, @sjsmall5286, @joanlee, and @barbarn as well as my fellow Connect moderator @lisalucier as they may be able to offer support and advice?

Back to your daughter, does the pain medication get rid of the pain or help it?

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I had trigeminal nerve shingles six years ago, I’m luck I’m not blind. I ended up with severe itch, eye, forehead to the town of my head which I still suffer with today, it’s horrible I never get a full nights sleep. I saw neurosurgeons at Johns Hopkins in Baltimore, had nerve block done walked out itching my head and crying. So they put me on Lyrica which really did not help bu5 I countinued to take it til 10 months ago when I decided to come off it because I lost six teeth. Now I suffer with severe withdrawal panic, anxiety and agoraphobia. I had to go to a therapist because of suicidal thoughts, but I’m doing much better. I don’t like pharmaceutical drugs anymore, my suggestion for your daughter would be either medical marijuana or maybe CBD oil or CBD gummy’s without THC which you can buy anywhere or order on line. I’ve been using this and it really helps along with the vitamin GABA calm which really has worked numbers. If she chooses to stay in the pharmaceutical drug then I would call the maker and see about getting a coupon to help with the cost. My Lyrica was $300 a month and I got a $30 coupon for a year which saved me a lot of money.

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Hi, @tikigod18 – I truly feel for your daughter – what a long time to be in that amount of pain.

I have had shingles before, and postherpetic neuralgia. The pain and tingling feeling during this time was awful. I was really concerned it might last forever after my husband told me about a work colleague whose postherpetic neuralgia had never gone away. Mine did end up going away: I trialed off of the gabapetin I was taking for it about 6 weeks later, and the pain and tingling had stopped. I can't imagine how hard it would be to not see the pain end, and my heart goes out to her and you.

I also use three asthma inhalers (two are daily, one for rescue), and they really are expensive. With changes every year in insurance, formulary, manufacturer pricing and coupons, I'm working hard the first of every new year to figure out the most realistic plan possible to have inhalers that work effectively at the lowest possible price. I can imagine it would be really challenging to be dealing with the price of these and also a $500/mo pain medication.

I wish I had alternatives to suggest. I am wondering, though, how her mental health is doing, after so many years of pain?

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@lisalucier

Hi, @tikigod18 – I truly feel for your daughter – what a long time to be in that amount of pain.

I have had shingles before, and postherpetic neuralgia. The pain and tingling feeling during this time was awful. I was really concerned it might last forever after my husband told me about a work colleague whose postherpetic neuralgia had never gone away. Mine did end up going away: I trialed off of the gabapetin I was taking for it about 6 weeks later, and the pain and tingling had stopped. I can't imagine how hard it would be to not see the pain end, and my heart goes out to her and you.

I also use three asthma inhalers (two are daily, one for rescue), and they really are expensive. With changes every year in insurance, formulary, manufacturer pricing and coupons, I'm working hard the first of every new year to figure out the most realistic plan possible to have inhalers that work effectively at the lowest possible price. I can imagine it would be really challenging to be dealing with the price of these and also a $500/mo pain medication.

I wish I had alternatives to suggest. I am wondering, though, how her mental health is doing, after so many years of pain?

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@lisalucier: Actually pretty well. She got several certifications in Yoga training and now teaches and works at her Yoga studio. I guess it is MY mental health that suffers. I take ephedrine instead of the inhalers since it is so much cheaper and over the counter. Having heart valve issues, and cardiac artery disease, I worry about just blowing out my heart some day from the ephedrine. Knowing it is used to make meth, I wonder how ANYONE could like that feeling???

Liked by lioness

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@ethanmcconkey

Hi @tikigod18 it must be frustrating to watch your daughter have such long lasting pain.

I wanted to introduce you to fellow connect members @cdcc @oranbaughn, @sjsmall5286, @joanlee, and @barbarn as well as my fellow Connect moderator @lisalucier as they may be able to offer support and advice?

Back to your daughter, does the pain medication get rid of the pain or help it?

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@ethanmcconkey: yes, the pain medication helps. It is just costing me my health, since I cannot afford my asthma medication, so I take over the counter ephedrine, that is not helpful for my Coronary Artery Disease. Sigh…there are no solutions….just venting here I guess. I sometimes hope I go into heart failure, o it will all be over. That is NOT a statement of a plan to end my life; just a thought that it would sure be easier.

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I had shingles in 2004 and have chronic pain. Spend most of my day in bed, in pain and am exhausted. New pain management doctor said I should stop taking methadone. I did. Also stopped Norco, Lyrica, Cymbalta… everything except vitamin B12 monthly injections. I used a spinal cord stimulator for 5 years and had it removed. I’ve been on Medical Marijuana since 12/28/2018. Not a great help after one month. Will continue. Now checking into Stem Cell Therapy. It’s been difficult finding someone with ongoing shingles pain. After 14+ years you are the second person I’ve located. Mine is on the right torso front, side and back. It is the complete area. I’ve had many nerve ablations, injections, appointments with “healers”, chiropractors, acupuncturist and neurologists. My right side spasms often and you can see where the side draws in when this happens. I’m just sorry you are so young. Have you checked into Stem Cell Therapy? I use a cream that has THC and CBD oil. Seems to help a bit. Also tried a product called NERVE RENEW – no change. I also have Crohn’s Disease, fibromyalgia, osteoarthritis, fatty liver… Still hoping to find pain relief.

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@gmaw4

I’m in my 15th year of dealing with PHN after shingles. Has anyone used stem cell therapy to regenerate nerves?

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Hi @gmaw4 I also have nerve pain after having shingles in the left leg 9 years ago. I am on gabapentin 300 mg x 3 at bedtime. Doesn't really help that much. What else is there? I also take paramipexole 0.5 MG 1 morning and 2 at bedtime. I also have chronic pain from neck to lumbar spine. Needless to say I don't get much sleep.

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I’m in my 15th year of dealing with PHN after shingles. Has anyone used stem cell therapy to regenerate nerves?

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@gmaw4

I’m in my 15th year of dealing with PHN after shingles. Has anyone used stem cell therapy to regenerate nerves?

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Hi @gmaw4, I see that you found the discussion titled, "Shingles and neuropathic pain." I moved your post to this discussion as well so the members discussing this topic could see both of your messages. You mentioned a few other diagnoses as well, I'd like to share a few other discussions you may find worth your time to read through and participate in where you feel comfortable:

– Fibromyalgia pain, https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/
– Bones, Joints & Muscles (group), https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/

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@gmaw4

I had shingles in 2004 and have chronic pain. Spend most of my day in bed, in pain and am exhausted. New pain management doctor said I should stop taking methadone. I did. Also stopped Norco, Lyrica, Cymbalta… everything except vitamin B12 monthly injections. I used a spinal cord stimulator for 5 years and had it removed. I’ve been on Medical Marijuana since 12/28/2018. Not a great help after one month. Will continue. Now checking into Stem Cell Therapy. It’s been difficult finding someone with ongoing shingles pain. After 14+ years you are the second person I’ve located. Mine is on the right torso front, side and back. It is the complete area. I’ve had many nerve ablations, injections, appointments with “healers”, chiropractors, acupuncturist and neurologists. My right side spasms often and you can see where the side draws in when this happens. I’m just sorry you are so young. Have you checked into Stem Cell Therapy? I use a cream that has THC and CBD oil. Seems to help a bit. Also tried a product called NERVE RENEW – no change. I also have Crohn’s Disease, fibromyalgia, osteoarthritis, fatty liver… Still hoping to find pain relief.

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@gmaw4: Agree, very hard to find someone in a similar condition. The one with the Shingles is my daughter. She got them at 21, now 34. The pharmacist couldn't believe it and asked to see the rash that spread around her thoracic back area, before he would fill anything. She has been through much of what you have been through.

She actually had cardiac ablations for Wolfe White Parkinson's Disease.

She is married, and her husband couldn't afford any kind of extra expense related to stem cell therapy….I pay for all her asthma and pain medications as it is. She does use marijuana in the AM, and then the Oxy compound her pain management Dr. has made in Mass. and mailed to her in the evening.

She teaches Yoga, and that helps her pain somewhat. Nice, only in a symbiotic way, to know there is someone else in the same boat. I pray you find some relief.

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@patsy0315

I will take any and all advise at this point. my mom is suffering and I believe this is what she is suffering she had shingles for quite a while back and arm and she had no idea she had them , attributed it to her arthritis , was not until pain was unbearable that she called her life alert and admitted into hospital. she came home and has been in pain since then. We tried to get her to doctor but with the pain meds and other medications she was sent home with she throws up all the time. Its sad .. I decided to google to find out what could be going wrong and found she possbily has PHN. would like to take her to mayo clinic to get her some help but have no idea what doctor to ask for .. any suggestions please…

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Hello @patsy0315 and welcome to Mayo Connect,

I can certainly appreciate the concern you have for your mom. I'm sorry to hear that she is experiencing so much pain and unable to use the meds that might help.

If you would like an appointment at one of the Mayo Clinic facilities, here is a link that will give you information on where to call for an appointment http://mayocl.in/1mtmR63. When you call the Mayo number the person who answers the phone will help connect you with the doctor most appropriate for your mom's care.

You do not mention your mom's age or how long ago her pain symptoms began. Also, have your mom's doctors offered any diagnosis yet? Has she been seen by a neurologist yet?

Liked by Lisa Lucier

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I will take any and all advise at this point. my mom is suffering and I believe this is what she is suffering she had shingles for quite a while back and arm and she had no idea she had them , attributed it to her arthritis , was not until pain was unbearable that she called her life alert and admitted into hospital. she came home and has been in pain since then. We tried to get her to doctor but with the pain meds and other medications she was sent home with she throws up all the time. Its sad .. I decided to google to find out what could be going wrong and found she possbily has PHN. would like to take her to mayo clinic to get her some help but have no idea what doctor to ask for .. any suggestions please…

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@patsy0315

I will take any and all advise at this point. my mom is suffering and I believe this is what she is suffering she had shingles for quite a while back and arm and she had no idea she had them , attributed it to her arthritis , was not until pain was unbearable that she called her life alert and admitted into hospital. she came home and has been in pain since then. We tried to get her to doctor but with the pain meds and other medications she was sent home with she throws up all the time. Its sad .. I decided to google to find out what could be going wrong and found she possbily has PHN. would like to take her to mayo clinic to get her some help but have no idea what doctor to ask for .. any suggestions please…

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Hi, @patsy0315 – postherpetic neuralgia is certainly painful. I had it after a case of shingles a number of years back. My shingles was diagnosed by my primary care provider, and then the treatment for postherpetic neuralgia was also administered by her. I was prescribed gabapentin, which I took for about 7 weeks or so and then my doctor suggested I trial off the med. At that point, my pain had stopped, thankfully.

I moved your post here so that you can connect with others in this thread talking about postherpetic neuralgia. If you click VIEW & REPLY in your email notification, it will take you to the Connect site where you can look at other posts in this discussion.

@tikigod18 @hopeful33250 @hosta @cdcc @gmaw4 also may have some input for you as you try and help your mom with her pain you suspect is postherpetic neuralgia.

Was your mom also given gabapentin, or another medication? Are you saying that at this point, a car ride to the doctor is not doable due to continual propensity to vomit?

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Thank u everyone !! I am reading all the post and what everyone else has gone thru as well … I just arrived at my moms so sorry for late response … yes she was given a script for gabupentin 100mg 1-2 tablets at bedtime … which she has not been consistent with as they where making here sick to her stomach… but she was also taking the tremadol (pain med) and that also makes her sick … she does take a nausea tablet to help with this … after reading the articles I can see how important this gabapentin is … so can I ask how many miligrams did u take each night… I only ask because I am encouraged that u where able to get relief after 7 weeks and we will be seeing her primary care physician tomorrow and I would like to be prepared with all this information to help my mom get some relief from this … she is 88 years old and it’s heart breaking to see her suffer and I can’t help:(

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Oh and yes she was given the viral med at hospital and for home as well which she finished this all took place around February 10th and she is still in pain

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