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At last I've found a Forum of fellow PHN survivors. Thank you thank you

Posted , 6 users are following.

robert09990
robert09990

) Hi  everyone, firstly thank you for all your posts to this  Forum, sharing your journeys, trails & tribulations with PHN they all add value in some way to our own experiences.

I'm an 11.5 year PHN survivor with shingles covering the top of my head & down right side of my face stopping just  short of the tip of my nose (fortunately otherwise it would have affected the optic nerve. I spent 7 days  in Sydney Hospital on an acyclovir drip 3 times  daily. It did no good.

My pain control consisted of 300mg of Neurontin 3 times daily. It made life bearable and stopped me ripping my eye out.This did me well till 3 years ago when I had a trapped nerve in my lower spine. 8 panadene forte daily for 2 months just was not acceptable.

So when my GP returned from holidays he took control saying we were dealing with nerve pain again (surprise) and doubled my Neurontin to 1800 mg daily. No change...so we went to 2700mg daily. No change....so up again to 3600 mg daily and then i could be pain free & walk again but have no feeling down left side of right leg.

Mental confusing was side effect, consulted pain clinic who recommended gradual reduction. Pleased to say I have reduced the Neurontin to 1800mg daily and I just cope with that. It's still a pain in the head.

Sorry for waffling. Cheers

0 likes, 6 replies

6 Replies

  • Ranger1
    Ranger1 robert09990

    Posted

    Robert09990,

    Welcome, What a condition to live life with. At lease we wont directly die from it and we can get around. It has almost caused me to crash my vehicle a few times. Minute by minute distractions even on 2235mg 2 x a day. Max dose for me.

    You were on a lot of gabapentin. I do not believe that is legal. Try a few nerve blocks if you have not gotten some relief. Did very little for me. Laying hands on me at church with anointing oils has given more relief.

    God Bless you brother and hope you see that Gods glory can brighten our lives with this condition.

    Ranger1

     

  • babs99203
    babs99203 robert09990

    Posted

    Sorry, you had to find us. As far as the gab, thank God your pain clinic had you taper, that dose was WAY too high. It is approved by the FDA in the US and considered helpful (but a miserable, ugly drug) for only 3 things, PHN, Epilepsy and specific diabetic neuropathy. For everything else, it's a toss up if it will help and usually the side effects far outweigh any pluses. If you can taper more, please do so. The recommended plan I read is 10% over a 2-4 week period. I only do it every 4 weeks and still have some rough stretches. I'm learning to make my peace that doctors are not good at dealing with pain, particularly nerve pain. I was in touch with a researcher in nerve pain and he said it's the most difficult one to treat and very little is successful for it. He keeps trying, however.

  • Hector78249
    Hector78249 robert09990

    Posted

    You may want to discuss the new Shingrix vaccine (2 doses months apart) with your primary doctor. It is supposed to be 90+ effective for people not to get shingles or for people not to have a recurrence of shingles. I have had ophthalmic shingles PHN since July 2013, with mild pain and itching. I will be discussing this new shingles vaccine with my doctor next month on the merits of taking it. What caught my attention on this new vaccine is that it is supposed to help on treating nerve damage in addition to not getting again the dreadful singles blisters followed in all likelihood by increased PHN. Look into the Shingrix vaccine. You have nothing to lose. Wish you the best.
    • jeaneen09890
      jeaneen09890 Hector78249

      Posted

      I have not been able to get feedback re whether or not I should get the Shingrix vaccine. We live in a rural area and my PCP is an NP. She has seen me through a great deal over the course of having PHN for nearly 3 years but said she didn’t know when I asked her if I should be vaccinated. I had been vaccinated about 7 years ago with the old vaccination. Any feedback?
  • Kwellness
    Kwellness robert09990

    Posted

    my goodness that sounds awful!  I had a severe case of shingles a year ago.  How reassuring I could be suffering another 10+ years.  Wish the dang thing had killed me instead.  

    I hope you get some relief.  

    Best thing I did was get a neurologist to help me.  Taking Nortryptaline and Lyrica.  Also taking Nucynta (opiod) at night.  It has saved me!

    I have tried SO many different meds.  This is the best combo so far.  

    Lyrica is horrid.  make me fall asleep driving, standing, in meeting, etc. etc.

    Best of luck

    • Ranger1
      Ranger1 Kwellness

      Posted

      Kwellness,

      Awesome for you  found some relief. I personally refuse to take an opioid. I am moving to a state that is more temperate that has legalized marijuana.  

      I wish you the best and hope you are able to maintain movements and don't have any complications with the opioids. The best part is you found some hope in this. 

      I went to a Pentecostal Church and the congragration prayed for me, the Elders laid hands on me and put anointing oil on me and I am getting relief. I joined the church and is a great experience. Remember the Pentecostal's believe God's power is present and everlasting not just used during Jesus life. God is power and I have turned to him for hope, love and healing and to solve all my problems. The best decision I ever made in my life. My wife and I rejoice.

      Best regards

      RGR1.

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