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tikigod18
@tikigod18

Posts: 41
Joined: Sep 12, 2018

shingles and neuropathic pain

Posted by @tikigod18, 2 days ago

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.

REPLY

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

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???

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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?

Jump to this post

@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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