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Pain Management-Quality of LIfe
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markwilson3578 posted:
I am a victim of Ramsay Hunt Syndrome-Type II, a rare neurological disorder with severe postherptic neuralgia. The pain has dominated my life in several ways since the onset back in January. If anyone can provide insight concerning improving pain management, please email me. I require specific information regarding suggestions concerning what pain meds are effective, what provider specialists would be involved, and any ideas as to how to better manage this deblilitating illness I wil carry the rest of my life. Thanks.

Best Regards

Mark Wilson
markwilson3578@gmail.com
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Caprice_WebMD_Staff responded:
Hi Mark and welcome to WebMD,

I hope you'll keep checking back here as members and our experts respond on the board itself and not via email.
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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Klslns8483 responded:
I've recently been put on gabapentin for my chronic pain condition. It didn't really help for that but amazingly it helped my diabetic neuropathy. I have almost no symptoms anymore. It's an antiepileptic but it has finally been FDA approved for posthertic neuralgia. You may want to find a good pain management clinic as I was told a few days ago that my other condition will be with me for life and to pick a clinic that I want to stay with for life. I've been to a few different pain clinics. If your insurance covers I hear Lyrica is great or Cymbralta. Mine doesn't cover it so that's why i'm on gabapentin (Neurontin). hope this helps.
 
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annette030 responded:
I looked up this disorder in my Merck Manual. It is also called Herpes Zoster Oticus. It is Shingles affecting the 8th cranial nerve. The book said it could be self limiting and symptoms might go away, or it could be life long.

If it just started in January, but the blisters have cleared up, it is still a wait and see thing. The book says pain from PHN, hearing difficulties and facial paralysis are common symptoms.. Do you have anything other than pain at this point?

Take care, Annette
 
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annette030 replied to Klslns8483's response:
I have found gabapentin works better for me than Lyrica or antidepressants for my chronic pain.

My internist pcp manages my chronic pain, I guess using a pain clinic or not depends on where you live.

Take care, Annette
 
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An_247494 responded:
Mark,

I also suffer from neuropathic pain due to Shingles. I have found that Lyrica works well for me, along with pain medication. Since Lyrica makes me very drowsy, I take it at night and I wake up with a positive outlook, which is one of the benefits of the Lyrica.I also have chronic back pain due to disc issues, for which I am prescribed a strong pain medication which stays in your system longer than most-it is methadone, I also know of someone else who has advnaced neuropathy, and he is prescribed morphine, which is quite a strong pain medication. I am not telling you the answer is pain meds, because you will most likely have to take them for the rest of your life since your body will depend on it. However, I was told I will have this neurpathic pain for life. I know there are other opinions on this, but Shingles is in your system from having chichen pox, and is there for the rest of your life, whether or not it flairs up.

I hope you feel better soon, and are able to get some answers from all of the info given by all the people who have replied.

Sue .
 
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dmelton454 responded:
I also have been the victim of long term pain. I have bulging discs from the base of my scull to my lumbar. I have had my lumbar fused and my right knee replaced twice. Mark, the best asvice I can give you is to get with a good pain management doctor and try to establish a long term relationship. Long term pain sucks any way you look at it. Do research. Be a part of your own health care. Do not always just go with the doctors advice. Seek second opinions. Do research on the web. Be informed and make informed decisions about what to do for yourself based on what you feel is best for you.I hope that you can reduce or eliminate your pain.


Regards

Don melton
dmelton@gt.rr.com
 
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helenjanemueller responded:
A good pain doctor, whether your pcp, or a pain management specialist, is a must. Gabapentin is a good place to start, it is available as a generic. If it should stop working, as it did for me, you can then go to Lyrica, soon to become off patent. I started gabapentin for diabetic neuropathy about a dozen years ago, went to Lyrica eight to nine years ago. Tho I am at max strength, with a bit extra at times, it contains the burning and reduces it to a background level. At this point, I have been diagnosed with fibro, which adds its bit to the neuropathic pain.

I have been weaning off opioids so that I can try low dose naltrexone. This is no longer experimental and available more than before. People with RA, MS and cancer, all painful conditions, have found help with ldn. Something to consider for the future.

Then there are the devices, implants usually, that interfere with the pain signals to the brain. Jerry Lewis wears one and said it gave him his life back.

MInd body modalities, such as guided meditations can reduce the perception of pain - with no side effects. I would suggest you begin with any Bernie Siegel book. Chiropractic and acupunture are two other mind body treatments to consider.

Depending on your time frame, online and in person support groups, where you can make connections with people who also have chronic pain, regardless of cause, can provide information, safety and a place to vent. Search yahoo for groups, join as many as you can handle. Contact a local hospital and ask about local support groups.

I want you to know that you are not alone; while other people may find your suffering unbelievable because nothing shows, here we understand, believe and sympathize. Glad you found webmd.

helen


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