Ice, ice, baby!

Posted , 17 users are following.

I have tried all pharmaceuticals (nortriptyline, amytripyline, keppra, tramadol, Lyrica, patches, ointments, etc.) as well as procedures (multiple nerve blocks and stellate ganglion injection), acupuncture, physical therapy, massage, even medicinal cannibus -- nothing has provided relief. The only thing that seems to help is ice. Is anyone else experiencing a similar situation? Any other options that could be suggested? For reference, my PHN affects the right side of my face and the back of my neck and head. I am coming up on four years since my initial shingles outbreak. Thanks!

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  • Posted

    I'm coming to my 3rd year, the pain as decreased some, getting better

    sleep most of the but 6 pills to take is to much

    They weened me off of Fentany and Tramadol.

    Did acupunture for 5 months no help,the acupunturist said since I

    have it for over a year it might work but she tried.

    in 6 weeks going for another shot different place

    It's all in the doctor and Gods hands

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  • Posted

     

    Hi Rebel sorry you aren't having any luck with the "normal" remedies.  I make an essential oil mix that helps: mix eucalyptus, lavender and menthol oils with a base oil.  Than I spray it on my bad side (I had shingles right side of my brain so if affects the whole left side of my body).  Over my 21 yrs of fighting this, this mix has helped the most.  I also found Japanese style acupuncture & medical cannabis helps some too. Hope you find relief soon.

     

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    • Posted

      Wow, 21 years! More power to you, Jamie. I can only hope mine lessens over time -- nothing yet, but the glass is still half full.

      I will try the essential oils mixture. Perhaps, the calming quality of the scents will at least be relaxing, if not more highly effective.

      I may try the Charlotte's Web strain of CBD. I know others who have facial neuralgia for whom it worked. I tried dry needle therapy and was unsuccessful.

      Wishing you well.

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    • Posted

      Hey jaimie. I would love to know your recipe for essential oils. You ciuld say ive grown to love using them. How many drops to carrier oil. Curious about finding the right percentage of essential iils fornyour dilution. I made a nerve spray but didnt notice it do anything. I used clove and Helichrysum and lavender in a two percent dilution. Thanks and has your pain gone down any over the years. ? Im almost two years in and mines gone down about two notches to be a 7 or 8 in pain. I have the dreaded belt of fire around my midsection. Too scared to use meds so would love to use anything natural. Thanks for your time and hope yours has vanished!!!
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  • Posted

    I'm so sorry for what you have gone through for 4 years now. I had shingles and PHN last December, January, Feb, and my doctor gave me a series of steroid shots in the spots that hurt the most. The medicine in the injection was Kenalog 5 mg, and a little lidocaine. I thought it was going to be horrible to get shots where it hurt so much (my left armpit, left shoulder, left arm) that I couldn't even stand to wear a top, but it wasn't too bad. He said that the steroid stays in the body for 4 weeks, although I got shots every 2 weeks, but only 2 or 3 times. The pain lessened noticeably 1-2 weeks after the shots. I've written about these shots before on this forum because I never read about anyone else getting these shots. They worked wonders for me. I will also say, though, that I got started on an anti-viral medication the very first day I saw the rash, and I've read that that is supposed to shorten a shingles attack. Still, I think that it was the shots that saved me. All that's left now is an occassional irritation or itching spell under my arm, and my back is still numb where the rash was. I'm SO grateful when I read of so many on this site who, like yourself, have suffered for years. I can't even fathom having that awful pain for that long. Ask your doctor about the Kenalog shots. Good luck.

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    • Posted

      Gail -- I appreciate the information on the Kenalog injections. As someone with chronic asthma, I am well-acquainted with steroid injections. One of my neurologists believes that I had a second case of shingles that effected my hip. I have had many a cortisone, not Kenalog, injection in the joint and it hasn't proven the panacea we had hoped. I am very glad to hear that the steroids worked wonders for you.

      Best wishes for continued good health!

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  • Posted

    Thanks for the Ice suggestion, I'll try it. I have PHN on the right side of my head, it means headaches all the time. Now coming up to 2 years. In July I'm going to try Pulsed Radiofrequency (PRF): with these words you can find it on internet. It stuns the nerve. They say the effect wears off and you have to go back again and again. Anyway the situation is bad enough here. I'm taking Lyrca, Tegritol, and Neurontin. Significant weight gain caused by the meds, and there are times when all I want to do is lie on the sofa and watch TV. The meds put away the headache by side effects are becoming the problem...

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    • Posted

      Ron -- I can empathize with what you're experiencing in terms of the dreaded side effects. I got to the point where I would rather deal with the pain while completely clear-headed especially since any benefits were negligible at best.

      I am familiar with the PRF and will be anxious to hear your thoughts on the procedure. Both my occipital and trigeminal nerves are affected and I honestly don't know if I could tolerate that procedure. I hope you find relief from it.

      Best of luck to you!

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    • Posted

      Rebel, sorry to interrupt in this old text. About the PRF procedure, I had it a week ago and the pain has gone! There is only a tingling feeling where the pain used to be. So for the time being I'm back to normal. It wasn't a painful or difficult experience, the doc pushed the needle in from the back of my head and I can't say for sure where exactly but I assume the right occipital nerve. She only asked me if possible to relax a bit more if possible because my neck muscles were contracted, rejecting the needle, and she couldn't push it any further. So I tried to relax and apparently it was succesful. I felt the difference the next day and I've been pain-free since 26 July, a week today.

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    • Posted

      Ron

      Good to know you got releif. Are you still fine. Had you taken one time PRF that gave you indefinite time relief. What was your area of PHN?

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  • Posted

    Buy one of those gel ice pads it does help!
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    • Posted

      Sheila,

      I have the old fashioned ice packs, the instant packs (good for travel, too!) as well as the gel ice packs. I can only hope that some new treatment will come along that is at least as effective over the long term. That, or perhaps I'll consider a career in the ice pack industry!

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    • Posted

      Rebel, did I mention the use of Aspercreme with Lidocaine? I roll that on the painful areas 2-3x's times a day in addition to the ice packs. In previous posts I was discussing with the group all of the different medications that I have tried to include having a morphine pump surgically inserted in the abdominal area thus dripping morphine into the spinal column for nine months. It worked very well, however there were consequences and the pump had to be removed. Recently titrated down on the OxyContin ER thinking I could manage the pain without it but only lasted 10 days (no sleep!) and the pain was beyond comprehension! Finally had to succumb to a low dose Fentanyl patch which is a very strong opiate but after much soul-searching realized I had no choice. Sadly, the doctors I have seen over the years have continually reminded me that I will have to live with the drug use the rest of my life even though my mind tells me I can overcome it without, tried several times and failed. After numerous trials/drugs/practices utilizing different approaches that yielded little or no results I had to consider quality of life. Also, use Oxycodone for breakthrough pain although so far much less with the use of the patch. I have attempted eliminate opiates in the past only to discover that there is no way I can tolerate the extreme agony I suffer. Not only do I have PHN over a vast torso region, my back is even more complicated, producing levels of pain that push me to near insanity. My back/neck/hips present numerous and severe inoperable conditions, too lengthy to list them all. Suffice it to say that it is nearly impossible to manage pain eminating from those regions. In short, I am on day two of the Fentanyl patch. I do not recommend it for minor pain or pain in a small region regardless of severity. This is a last resort drug, and a very dangerous one. After refusing to even try it for years these past 10 days of suffering proved too much, enduring levels of pain that reduced me to a sobbing crushed ball of shaking flesh/bone which pushed me over the edge, had no choice so I put the patch on.

      I am unhappy about it BUT within 3 hours I experienced some relief! Due note that I carefully monitor my O2/HR/BP levels because I'm also a heart patient with prosthetic valves. I will continue to update as time goes on, hopefully this will be the answer for me. Keep the faith.

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    • Posted

      I will check out the Aspercreme and hope that provides relief in tandem with the ice.

      You have really been through the mill with all the pain meds you've tried. Unfortunately, none of them provide me any relief, but, even though you have to take Fentanyl to ease your suffering, at least it is seemingly helpful. Desperate times call for desperate measures.

      Hang in there!

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