Worsening PHN

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In March 2011, I was diagnosed with severe shingles in the S3 Pudendal Nerve Distribution (basically, in the vagina). It seems as if this must be quite rare as I've never come across anyone else who has developed it in this awkward area. Shortly thereafter the PHN began - and has never subsided. I'm pretty sure that stress and fatigue exacerbate the problem. After 3:00 pm, it definitely worsens. The only relief I get is if I take an ice-cold Sitz bath, apply Lidocaine/Prilocaine Rx cream and lie down for 15 minutes. Not easy as I am a Nanny for two toddlers! The bigger problem is that my Rx Insurance will no longer authorize the cream! I'm at my wit's end as that's the ONLY thing that helps! Does anyone know of any other topical ointment that might numb this horrific pain? It's as if I have a fiery cactus inside me, or hot blades! It's embarrassing to talk about for sure. No oral meds have helped at all. I was on very high dose Gabapentin for months - to no avail. Any suggestions would be greatly appreciated. The last 2 weeks the PHN has become much, much more painful. I can hardly bear it. Thank you!

Patricia

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18 Replies

  • Posted

    I hope you are in the care of a medical provider with substantial experience in the treatment of shingles. I got ophthalmic singles in July 2013, resulting in post herpetic nueralgia (PHN). I suffered pain, numbness, tingling sensation, etc., for about 2 years. Today I have a mild case of PHN; periodically I will take 1 or 2 valacyclovir tablets (500mg each tablet) daily if need be under my doctor's instructions. If you have not taken Shingrix (new vaccine requiring 2 doses within a certain timeframe), I suggest you discuss this vaccine with your medical provider. Shingrix supposedly has a 90+% probability of preventing shingles or preventing the return of shingles. Wish you the best.

    Ps. I took the Shingrix vaccine in 2018. I rub my head and face several times daily with a cold wet towel for mild itching. To my knowledge there is no cure todate for PHN.

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    • Posted

      Thank you, Hector. I'm grateful for your response and input.

      To be honest, I need a new Primary Care physician. He seems to have no idea about Shingles/PHN! I think patients know a lot more about this wretched "disease" than many doctors. Merry has more knowledge about the condition than any other medical professional I've encountered!

      Trish

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  • Posted

    I agree it seems to be uncommon, but I have heard of others. I think it's more likely that most people don't talk about it. Unfortunately I also agree that stress, fatigue and activity can worsen the pain. I had to quit my job due to the PHN and gab side effects. Which brings me to another issue. Few people realize that gab needs to be SLOWLY reduced over months or even years if the person, like me, is very sensitive to it. Groups recommend 10% or less over a 4 week period. As you reduce, you can go thru withdrawal and increased pain is a common side effect. It took me a while to realize that, and joining other groups regarding gabapentin I learned more.

    I use Aspercreme pain creme with 4% lidocaine. Check to see if an over-the-counter product may help. I didn't use the patches as they were too expensive, but the OTC ones had only slightly less lidocaine in them and helped, but I found the cream much easier to work with.

    You may also have recurring shingles, or have a new case. Not all shingles have a rash, mine didn't. I was diagnosed with shingles, 3 years ago. The gab didn't help, but as I slowly reduced it, my pain has improved. I believe my PHN was resolving on its own and the gab and withdrawal cycles was creating increased pain. I avoid aggravating the area (it's my core, back/chest/shoulders) by limiting my lifting, twisting reaching etc. That prevents the nerves from firing up too much. As you mentioned, you job may be adding to the problem, but maybe you can find ways to modify the activities a bit.

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  • Posted

    Trish,

    Do you live in the States?

    1. Google( lidocaine 2.5 and prilocaine 2.5 cream goodrx)

      You can buy the cream for approximately $ 22.00 with the Goodrx coupon. It will show you the cheapest price at a pharmacy in your location. You then show on your smart phone, tablet, computer, the price to the pharmacy staff. The goodrx coupon has helped me tremendously with many of my medications.

      OR

    2. You could alter what I did when I have had Herpes Zoster-Shingles on my right scalp : Squirt

      Bactine, which has Lidocaine , onto the vaginal wall, then apply Vaseline to help the area maintain the Lidocaine. Bactine is cheaper than Oralgel or Ambesol for dental pain. You could mix a small amount of Bactine with enough Vaseline so that it would adhere to the vaginal wall.

    . Have your prescription transferred to the goodrx pharmacy.

    I will see if there are alternative creams with numbing meds, but I doubt it. I used ear drops with benzocaine for years for the ear shingles. My insurance company refuses to cover it.

    Best Wishes

    Merry Juliana

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  • Posted

    Trish,

    Often shingles can be misdiagnosed as Herpes Simplex, which is why you won't hear people discussing it.

    Please go ahead and get the Shingrex vaccine as it may slowly help your PHN. My PHN has become more tolerable 10 months after the 2nd Shingrex

    vaccine.

    I have had Herpes Zoster-Shingles every 3 weeks in my right ear, mouth, and throat, and more recently also on my right scalp for the past 23 years.

    I am so sorry you are dealing with this disease. Please let me know if the goodrx idea works out.

    Best Wishes

    Merry Juliana

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    • Posted

      Dear Merry,

      Thank you SO very much for all the information! I'll definitely try the GoodRx route.

      I was reluctant to get the Shingrex vaccine in case it made the PHN worse, but it sounds as if I should go ahead. Before Shingrex there was a vaccine (can't remember the name) that I was told I couldn't have until I no longer had PHN, so I was concerned that it might be the same with Sh/grx

      With all you're dealing with, I feel guilty complaining! Yes, I live in the States although I am British.

      I have found that Lidocaine alone gives very temporary relief - the addition of Prilocaine makes the numbing effect last longer.

      Thank you again, Merry.

      Trish

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    • Posted

      When I googled goodrx in my area, there are many pharmacies offering your Rx in the 22-25 dollar range.

      The only reason I tell people about my personal Herpes Zoster-Shingles history is that they know I understand their excruciating pain and other symptoms, and the difficult aspects of dealing with the disease.

      Best Wishes

      Merry Juliana

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    • Posted

      Good RX has saved me a lot of money. There are times it's cheaper than your insurance. It's easy to use and easy to compare rates. Trish, I totally agree with you. Hector is lucky he's got a helpful doctor but the vast majority have only vague familiarity with shingles and often believe old, out-dated info. Such as, you can only get shingles once, you have to have a rash to have shingles, only old people get shingles etc. And they are clueless about gab.

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    • Posted

      Thank you SO much! I used the GoodRX coupon and saved over $50 on the Lidocaine & Prilocaine cream. My gynecologist called in the prescription to a Stop n Shop Pharmacy. My primary care physician had provided misinformation on his authorization submission which meant that my Rx Insurance denied the medication!

      So many thanks for all the help.

      I will definitely organize the Shingrix vaccines and hope that they will help with the PHN.

      Trish

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  • Posted

    Hi Trish82859. I'm sorry to hear about your shingles. I was diagnosed with S3 shingles in 2016 and have yet to talk to anyone else that has had it there. I have PHN too and it now shoots down my leg. I think Babs99203 is right, its very awkward discussing our shingles because of where it is. I wonder if there is a way to private message each other. I think there is but I don't know how.

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    • Posted

      Your so welcome, Flo.

      Private things should remain private.

      This disease deprives you of so much. I am so sorry you are having to deal with this in the S dermatome.

      My one comment is, if you are not getting excellent analgesic control, change your physician. Most physicians are abysmally ignorant regarding this disease, the amount of pain, the accompanying symptoms, the exhaustion and fatigue, and the depression.

      My best wishes to you and your family,

      Merry Juliana

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