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New here. Had PHN on face for 18 months.

Posted , 7 users are following.

3d_in_Ky
3d_in_Ky

Wanted to join and thank everyone here for helping me to at least not feel alone in this excruciating journey.

Bless you!

Dwight

 

0 likes, 15 replies

15 Replies

  • jeaneen09890
    jeaneen09890 3d_in_Ky

    Posted

    Hi Dwight. Welcome. I am newer to the site also. It has helped ease my sense of isolation. I had Shingles develop on Dec 2015. Have had PHN since. And it has, at times, well many times, felt like an excruciating journey. You can likely see my previous posts for more on my PHN history. Jeaneen
  • babs99203
    babs99203 3d_in_Ky

    Posted

    Hi Dwight, it's a shame you have to be here, but I'm glad you found us. It definitely helps to share what you're dealing with and to be in touch with others. My PHN is in my back and to a lesser degree, my chest, so we each of some differences in how it affects us, but so many of the other issues such as disappointment, frustration and isolation are common. There are others with PHN in the head area so they may have specific tips for you. I've often thought of the difference between my case and others like yours.  I've learned what activities or motions (reaching, bending, lifting) can make it worse. So I can either avoid them, not always possible, or at least know what I did. In your case, is it more constant or does something like chewing or sleeping wrong set it off?

    How long have you had it? My shingles started 10/25/2016 and it's been improving, very slowly, but it IS improving and I'm decreasing my Gab so the side effects from that are lessening.  Welcome.

  • charlie58834
    charlie58834 3d_in_Ky

    Posted

    I want to report a new medication that is working really well for me. For about six months now I’ve been using an eczema cream on my forehead and scalp for PHN of 27 years duration. It is the best thing I’ve tried. It’s the only treatment I’ve found that decreases itching, decreases pain, AND takes away the sort of numb feeling I have in the affected area. This cream, I believe, is similar to kenalog that is being used with some success in clinical trials. 

    Anyway, I can use really tiny amounts that don’t even gum up my hair, with good results. I’d like to see if some of you might try it and see if it helps. I purposely used it off and on for six months, not wanting to jump to a positive or negative conclusion that might be based on placebo, or on pessimism. But on days when I use it I really do have good control of symptoms. So, if you are interested, talk to your doc. My dermatologist prescribed mine for eczema. He does not seem to be overly concerned about side effects (I’ve noticed none). I think most docs would be willing to give it a try since PHN is so difficult to treat. 

    Please let let me know on this site if it seems to help or not, but try it regularly for a week or so before deciding if it helps. 

    • jeaneen09890
      jeaneen09890 charlie58834

      Posted

      Hi Charlie. What is the name of the cream? Glad you’ve found something that helps.
    • charlie58834
      charlie58834 jeaneen09890

      Posted

      Sorry, I wrote it in the text but I’ve been having trouble with this site’s program, and I guess it got kicked out. Triamcinolone acetonide. 
    • babs99203
      babs99203 charlie58834

      Posted

      This could be tremendous news! I tried a new cream a few weeks ago, but it didn't work. I communicated directly with the researcher who created it, and he agreed that PHN is one of the most difficult things to treat. Is this prescription only?

       

    • charlie58834
      charlie58834 babs99203

      Posted

      At least in US, prescription only.  It was not expensive using my Medicare part D prescription plan, but don't know what it might cost if you pay full price.  I think it cost me around $20 for a pretty good-sized tube. 

    • babs99203
      babs99203 charlie58834

      Posted

      I found it on Good RX for about $5.00 without the acetonide listed. That was 70% off the regular rate. I have no drug plan and a $7300 deductible so I sometimes use that for buying me meds. They list it as Kenalog and being used for mouth sores. Interesting. I was considering using it, but I just realized, I have a much larger area to cover, as it's my back to front which are affected. I wonder how long it would last? But 3d, I'd sure consider it if I were you. I'm sorry you haven't gotten more relief. As many of us have gotten it knocked down to under 5 with our meds/lotions. But generally it does improve, so I hope you'll see that. Gab or Lyrica didn't help? They mess up the nerve signals and as much as I detest the drug and it's side effects, it's worked for me.

  • 3d_in_Ky
    3d_in_Ky

    Posted

    Hi again everyone. My shingles started on 9/22/16. It manifested itself as a toothache in a crown. Pain in the tooth was incredible. My dentist was out of town so a student looked at my tooth and couldn't find a problem. A few hours later the whole deal set off reoccurring pancreatitis. Off to the ER with toothache and pancreatitis. Stayed 3 days. Morphine didn't touch the pain in mouth and the pancreatitis pain was even less than my tooth. Finally saw my dentist five days after the ordeal started. He took one look and said there was shingles on my face. No tooth problem. Started anti viral meds, but at this point way too late for me.

    So my PHN is in my trigeminal area. It was chin to ear, now basically settled on the right side of my chin for about 3 inches.

    With no meds my pain is a 10 and unbearable. Tried most of what we all have tried. Settled on Nortriptaline, 5mg Percocet and a Lidocaine type topical cream, which at this point is really taking a toll on my face.

    This combo knocks the pain down to 7-8.

    Can't work, sleep mostly. I am 64 and have a wonderful wife and 2 sorta kids (17-20).

    VERY BLESSED! Just in a lot of pain lol!!!

    I will pray for this group daily

    God bless

    3d

    I'd be willing to try the cream Charlie.

    What is the cream called?

    Ok, sorry for the long post but that's me...

     

    • charlie58834
      charlie58834 3d_in_Ky

      Posted

      Hi 3D. Triamcinolone acetonide. I have been using Aspercreme for 27 years with good results. It seems to work really well with itching, and quicker than the TA cream, but the TA cream works on more symptoms and lasts longer. 
    • jeaneen09890
      jeaneen09890 3d_in_Ky

      Posted

      Hi. Don’t apologize for longer posts. We are all trying to cope with the disruption in our lives due to PHN. So sorry to hear that your pain still at a 7-8 with treatment. I say this as I just took my first 5mg Percocet of the day.

      My pain started in my right upper quadrant. I had severe pain for about a week. Ibuprofen or acetaminophen didn’t touch it. I then developed what I thought were hives due to pain and stress. Didn’t call my PCP to report. A few days later my husband insisted we go to our ED I was in so much pain. ED doc thought it might be my gall bladder. We live in a small town and I then had an appointment with a gastroenterologist at the University of Michigan. Got in on a cancellation. 3 hours from our home. His 4th rule out was herpes zoster but he didn’t order the lab work to test. Would have been too late for antiviral for me too. So I had gall bladder surgery and the severe pain continued. Went through more tests and a couple of different diagnoses until the young NP I see here questioned one day “I wonder if you had shingles...” She ordered the lab (had to be sent away) and the value was “off the chart...” So it took about 4 months to finally get a diagnoses. I have had numbness and tingling on the right side of my face.Went to my dentist twice,because it felt like dental pain. But nothing there like the pain u are experiencing. My pain starts in my right side and then runs up into my right shoulder and encircles my trunk. I take Lyrica, am on a new antidepressant and have Percocet for breakthrough pain. Also have lidocaine patches to use. Sometimes I think they help. Have also worn an abdominal type binder-sort of like acupressure.I am 66 and my husband and I had just retired when my PHN journey began. 🙁 It has been extremely cold here in Michigan and I have not ventured outside for 8 days. Cold makes pain worse. So please never apologize for long posts. God Bless you too. I have a wonderfully supportive spouse but this sure isn’t the retirement we planned for. This site has been very helpful for me too. Jeaneen 

  • Surfmurph0
    Surfmurph0 3d_in_Ky

    Posted

    Hi everyone 

    it is 3 years since I contracted ophthalmic shingles and have suffered excruciating pain since.

    there is a glimmer of hope,howeVer.

    i am on a trial in Liverpool ,receiving Botox injections every 12 weeks.

    initiaaly, I dad immediate relief which proved very emotional .

    i am due to receive my next cycle in a couple of weeks time and ,although the pin has come back , I would class it as slight auto moderate.

    i understand that the Botox has a cumulative effect, so fingers crossed.

    I WOULD ENCOURAGE ANYONE TO ENQUIRE ABOUT THIS TREATMENT TYPE.

    Good luck everyone.

     

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