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Shingles and Postherpetic Neuralgia and Pain
Brain & Nervous System | Last Active: May 7, 2023 | Replies (189)Comment receiving replies
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?
Replies to "Hi, @tikigod18 - I truly feel for your daughter - what a long time to be..."
All my doctors and in my online PHN group, tell me that sometimes it gets better over years, but PHN never goes away. Very difficult to live with as its not common. I have tried gabapentin, Lyrica and on and on. I can tell you that I have changed during the 5 years of chronic pain, I have endured. I don't want to go anywhere. It hurts to dress (hypersensitive skin), to sit, to drive, to walk...I am miserable to be around. It has not been a positive mental health experience. I am desperate and have spent a lot of $$ and time to get relief. I get no pain pills. I think you have to be at deaths door before you would get any pain meds. I have tried all of the alternatives: spinal cord stimulator, peripheral nerve stimulator, Calmare therapy. Honestly, I am worse. Maybe the Mayo Clinic can help? I don't know who to turn to.
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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???