Shingles and Postherpetic Neuralgia and Pain

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?

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.

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?

@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???

@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.

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.

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.

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

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/

@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.