PHN for 10 years

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I have phn in my eye, forehead and scalp.  I have tried everything.  Laser therapy, ceverical block, orbital never block, botox, acupunture, compound mixed pain lotion, cannabis cream/  I was on Lyrica for 5 years.  Currently taking 18 mg of Gralise per day.  My best relief comes from hard brushing of my head and scalp and the nerves are on fire and then applying s homeopathic lotion.  Has anyone tried Horizant?  Any other suggestions.

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  • Posted

    According to Wikipedia, both these drugs are Garbapentin. ??I take 600 mg every 3 hours and use Lidocaine ointment plus sleeping aids  when sleeping. I'm able to get along with all this.

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    • Posted

      Thanks for sharing your experience.  It sounds as if you have worse pain than me.  I've tried the lidocaine but it burns my skin.  Have your tried Have your tried Horizant?  It is another time release Gabapentin.  

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  • Posted

    What may help is seeing your condition as a whole health one.  Having a healthy "clean" diet to start, whole foods, nothing processed, organic as possible, but also vitamin deficiencies.  Taking basic vitamins like C (a natural antiviral btw) D, and A daily I believe most people need especially as you get older. 

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    • Posted

      One other thing, when I say Vitamin C, I mean at high dose...1000 per day or more.  I have had shingles, a mild case some years ago, and nothing since.  However, I've also been taking a LOT more Vitamin C over the years.  It is a 'natural' antiviral (what PHN is I believe, or how it's treated?) and you may need a lot more than you consider. It's water soluble, and very hard to "overdose" so I don't think you have to worry about that.  You didn't say how much of anything you take so I thought I'd mention it.

      Capsaicin creme also is something I've heard one can use topically.

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    • Posted

      Rusti,

      Your comments on diet and vitamins are useful.  Always something new to try with PHN.

      It's important to know that what causes PHN pain is not the virus [Herpes Zoster, chickenpox].  It's the damage to the nerves caused by the virus during a shingles episode. 

      I tried capsaicin cream.  It exacerbated my itching so much I scratched my face open in several areas.  It may work for some people though.  I'd advise starting with a small area to be sure it doesn't make things worse. 

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    • Posted

      Thank you for that info regarding PHN, though I did read it's treated with 'antivirals' anyway? In any case, I don't want to give a link here, but look up "Vitamin C and PHN" in your own search.  You'll see there has been some success with it.  Also, thank you for letting me know about capsaicin, you're correct, some things work for some not for others.  I do know how my own health has improved since going organic and taking vitamins like C (in high dose) D, and omega 3s daily, and I really hate to see people suffering as I've heard here.  Hope it helps.  I'm 66 btw. smile

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  • Posted

    Brian,

    Is your pain a result of shingles in those areas?  It sounds like you are describing the opthalmic branch of the trigeminal nerve, which is where I have PHN [postherpetic neuralgia].  You probably know what PHN is since you are on this website, but I thought I would check. 

    I've had PHN for 26 years.  I'm also a recently retired psychologist who specialized in chronic pain management for many years. 

    Like most PHN patients, you are trying everything you can, to try to get control of the pain.  I had not heard of Gralise or Horizant, but in looking them up on the internet, they are basically gabapentin.  Gabapentin is probably the best of the oral meds for PHN.  I've heard fair results also with Lyrica, a similar drug.  Neurontin, another form of gabapentin that is an older drug, may be cheaper than some of the new variants. 

    I do not use oral meds for pain control.  I use aspercreme, which has salicylate, and there are other products that are based on this chemical.  It provides fair relief, lets me concentrate on things other than the pain, and it helps me sleep better. 

    Another very helpful, and unexpected discovery of mine recently, is that when I have a sudden worsening of itching and pain, it is usually due to mild dehydration.  I've discovered that drinking a 16 oz class of water will result in dramatic lessening of the exacerbation within about 30 minutes.  Nice!  And free!  Only took me 25 years to discover that! 

    So, as I've written in other areas of this website, a main key to dealing with PHN or any chronic pain is to give up on the goal of getting completely rid of the pain.  Obviously, you don't do this until you've tried a lot of solutions first, and failed.  PHN is one of the hardest chronic pain conditions to treat, and docs admit they are very limited in their solutions.  So, when you reach this point of trying and failing to rid yourself of pain, it's time to switch your thinking from "eliminating pain" or "pain treatment" to "pain management."  This is a hard pill to swallow at first, giving up a "cure."  But, when I've seen people change over to focusing on pain management they did lots better, and when I did it many years ago, it made a dramatic improvement in my life. 

    As long as we're looking for a cure, we will be constantly disappointed, angry, eventually depressed.  And, we reject things that work partially.  When we focus on management of pain, we accept partial solutions rather than discarding them.  And that's what works with chronic pain:  We find a number of things that work partially, and they add up to better control. 

    An important practice that goes along with pain management is called cognitive restructuring, a form of cognitive behavioral therapy [CBT].  I've written to several others about this in some detail on this website, so you might look for those conversations.  Go to:

    http://patient.info/forums/discuss/depression-with-phn--552486?page=0#2470428

    for one of them.

    Brian, please let me know if I can help further.   I hope this has been of some help.

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    • Posted

      I think my reply was sent prematurely. Where do you get your aspercreme. I will check out your article. Gralise and Horizant are time release gabapentin. Yes, Gralise is expensive but you only have to take pills once a day.

      I will try drinking water when I feel the pain coming on. 26 years! Wow! I'm 75 years old so I doubt I will have to endure your time experience.

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    • Posted

      In the US where I live Aspercreme is usually available in any drug store.  Target, Walgreens, and others have their own copies of it, usually right next to the Aspercreme.  These are really the same but cheaper.  It has, I think, 10% salicylate.  You
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    • Posted

      Sorry, I also sent my reply prematurely! 

      I think you can get cream/gel with a higher percentage of salicylate, but I've not tried those.  One person mentioned Dencorub, which has an "Extra-strength Heat Gel," which has 26% salicylate.  It may or may not work better than Aspercreme.  There is only so much your skin can absorb.  But it might be worth a try. 

      Let me know if the increased hydration helps you.

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  • Posted

    In follow up to our discussion of a couple of days ago, I have found that a very predictable trigger is a substantial drop in the barametric pressure.  I usally know it is going to happen before the weatherpeople announce it.   Also, the best topical cream I have ever use is T-Relief, a homeopathic pain relief ointment.  It is made by MediNature and can only be obtained online.  The ingredients are labled un ARNICA+12
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