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Ice, ice, baby!

Posted , 17 users are following.

Rebel1990
Rebel1990

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!

0 likes, 33 replies

33 Replies

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  • sue2910
    sue2910 Rebel1990

    Posted

    I've had PHN for about 3 years now on my right side, and this from only a mild outbreak that my doctor didn't catch in time. Feels like my entire right side, from shoulder down through my calf, has on a wetsuit that's one size too small, and itchy/painful areas where the shignles broke out. Here's what's helped the most: 1. a deep-tissue massage every couple of months, especially into the area where the shingles broke out. 2. Lyrica (50 mg) once a day (no side effects). 3. Essential oils of peppermind, lavender and tea tree oil - especially helpful for the itchiness. 4. SWIMMING. I recently started swimming laps again, and it has increased the range of motion in my right side. Doctors haven't been much help, because all they have are drugs and weird procedures with pokey things and zappers. Good luck!  This whole thing sucks, and I'm 62. Hoping in a few years to be symptom-free by tackling it on my own.

    • Rebel1990
      Rebel1990 sue2910

      Posted

      Sue,

      You are braver than I am! There is no way I could undergo a deep tissue massage (my pain is on the right side of my face, head and neck) without needing to be peeled off the ceiling. I am very sensitive to touch, particularly by the back of my head and neck.

      While the Lyrica caused some unpleasant side effects for me and I don't suffer from itching, I am with you on the swimming. While I need a cane on land, I can be relatively independent in the water. Great exercise!

      Best wishes for improved health.

  • danagallen
    danagallen Rebel1990

    Posted

    Ice-  agreed.  Couldn't sleep at night without an ice pack (and still don't sleep well anyway).  I have also gone through the pharmaceutical gamut to no avail.  Waiting on a medical marijuana card to try that.  It didn't help you?  I am praying it works for me!  Have you ever found a topical cream to emulate the feeling that ice does?  

    • Rebel1990
      Rebel1990 danagallen

      Posted

      Sorry about the delayed reply, danagallen. In answer to your question, I was recently prescribed a new lidocaine and prilocaine combo cream and it's helpfulness is negligible. It doesn't hurt, but it's not a panacea for me by any stretch. 

      Speaking of stretch, I also have a new freezing spray by Gebauer that is used to stretch the very tight muscles that protect the aggravated nerves. Helps to alleviate some of my neck tension. 

      I hope your medical marijuana search proves fruitful as I tried several different products (from edibles to tinctures to vape pens) to no avail.

      Good luck to you.

  • ron32552
    ron32552 Rebel1990

    Posted

    Perhaps my postherpetic pain is mild compared to some of the posters on this thread, but I have found that peppermint oil (tubes with roller and pump cream from Origins or small bottles from many sources that I pour into generic rollerball applicators) works on my forehead and face for hours.  Prior to an application, even a slight touch of my forehead with a finger is painfull.  After the application, I can place my head on a pillow on the side where I had the shingles attack and can sleep.  
    • Rebel1990
      Rebel1990 ron32552

      Posted

      I am glad you have found a mixture that has provided some relief to you, Ron. I haven't slept on my right side in four years, but am still holding out hope. 

      All the best to you. 

  • anna38464
    anna38464 Rebel1990

    Posted

    I totally agrree...I had the same experience after having PHN for 8 years now...only tough part is you can't carry ice everywhere!   It helps the burning and itching though.

     

    • Rebel1990
      Rebel1990 anna38464

      Posted

      Anna --

      It's amazing how inventive one can be when it comes to preserving ice. I live in the desert southwest, so keeping cool is a matter of necessity in the summer. Insulated coolers can be your friend!

      In a perverse way, it is nice to know that others suffer a similar fate. I am sure that you deal with the constant pain as your new normal, too. 

      I wish you well. 

  • linda15791
    linda15791 Rebel1990

    Posted

    I agree with the ice treatment. It has been 4 mos and i just recently found a proper dx. Have tingling in scalp, followed by extreme, shooting pains in upper rt side of head, ear, temporal area with raised areas, bumps, if you will. Have seen ER, PCP, infectious dis., gastro (I gained stomach wt, nausea, couldn't eat but one meal a day), soon to see ENT doc. All test results neg., but now dx with shingles, am 56, LPN. Had shingles 2x before but not like this painful junk! They want to start me on Neurontin and I will also suggest steroid for inflammation. The ice only works at home- home care nurse for disabled kids- can't bring an ice pack to the job! I will try the herbal topicals- sounds more natural anyway.

    Thanks for letting me know I am not going crazy and that others suffer similarly bizarre affects like me.

    Linda Butchart

    • Rebel1990
      Rebel1990 linda15791

      Posted

      Linda --

      Not going crazy whatsoever. I went through the litany of prescription drugs and, although I have a relatively high tolerance, after so many unsuccessful rounds, I decided I would rather be more sure-footed and clear headed. I have been off the drugs for a couple of years. It's painful and my symptom flare ups aren't muted, but it's a trade off that was best for me.

      My doctor has a couple of other scripts that he may wish to try as well as a few repeated procedures, but that is yet to be sorted out. 

      I hope you find a concoction that is helpful to you. 

  • jaime13831
    jaime13831 Rebel1990

    Posted

    Mi dad is with PHP for the past 7 years already. He is 89 years now. We have tried three nerve blocks, I bought him the ReBuilder Medical and used it for a couple of months but now pain has come back tremendously. He had taken Lyrica for months but now doctor changed to Gabapentin because she said this has lesser drowsiness side effects. We have tried so many different creams with lidocaine and other things and he likes that. Last night my mom put him some ice in his left arm bottom and back in the shoulder and he said he had never felt so good in his life with almost no pain. We will continue using the ice which is so inocuos! Thank se for your note this helped me a lot. Hope everything is good with you now.

    Caroline 

    • Rebel1990
      Rebel1990 jaime13831

      Posted

      Caroline,

      I am glad to hear that something as simple as ice has given your father some relief. All the best to him and to you and your mom as caretakers. 

      As for me, I have had peaks and valleys in the PHN pain realm. Tried some additional injections to no avail, but more appointments with some specialists next month, so I’m keeping the faith. 

    • sheila48912
      sheila48912 jaime13831

      Posted

       This is the gel pack that I use I swear by it: 

       Can be purchased at Amazon 

      Chattanooga ColPac Reusable Gel Ice Pack Cold Therapy for Knee, Arm, Elbow, Shoulder, Back for Aches, Swelling, Bruises, Sprains, Inflammation (11"x14

      Sold by: Motion Store

      $10.49

       

    • sheila48912
      sheila48912 Rebel1990

      Posted

       Rebel,  it is extremely important that not to let anything upset you and  learn to control your stress. Also, rest periodically throughout the day. When it gets really bad for me even though I am on opiates I use the ice gel pack. Somehow it controls the extreme pain. Include a combination of lidocaine and Aspercreme as a topical as well.  Never give up. 
    • Rebel1990
      Rebel1990 sheila48912

      Posted

      You are right on point about the stress factor and I do my best to try to stay even keel (playoff ice hockey doesn’t help!!!). While my pain is consistent, I do experience flare ups about five to six times a day where the pain is heightened for about 18-20 minutes. The ice is quite effective during these episodes. All the best to you. 
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