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PHN alternative therapies herbs supplements...anything

Posted , 12 users are following.

Jubs_UK
Jubs_UK

I have excruciating PHN. It feels like I'm being poked with thorns or multiple needs being twisted in me....the itch also drives me up the wall. The pain is much worse now that the blisters have fallen and skin is healing.

i was wondering if anyone has found help in any alternative or natural remedies.....anything that has helped them. There are many promises on the web about vitamin packs that cure PHN but I don't trust them.....so was wondering if any of you found anything to be helpful. I am already on amithriptyline and it isn't helping.....I'm being stung now as I am typing....if I sit like a statue I'm safe. What a life! So sad for all of us.....

would be be grateful for your thoughts ideas and suggestions.....

jubs

0 likes, 17 replies

17 Replies

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  • vincent70312
    vincent70312 Jubs_UK

    Posted

    Have you tried the amino acid L-Lysine, at 4x1000mg, evenly spaced during the day. You can get it from Holland and Barratt; Vitamin C in the form of ascorbic acid (**food grade**), 2 teaspoons, level, in 1/2 teaspoon amounts, spaced regularly, It will give you diarrhea, initially. So be warned. Large amounts of Vitamin C cause a slight drop in B12, so a normal B Complex capsule daily. Avoid coffee, chocolate and sources of arginine, it enables the virus to reproduce, in fact it cannot reproduce without it, and is blocked by L-lysine. Right now, if you have any Benadryl, or hayfever tablets in the house, take 2, as long as you have taken them before and know you are fine with them. Talk to your Dr., get a neurology referral, which will include an MRI, if you have not yet had one, to check you do not have internal shingles. Some find that Serrapeptase also helps. It sloughs off scar tissue. In this case from scarring to the lining of the nerve. Good luck.
    • Jubs_UK
      Jubs_UK vincent70312

      Posted

      Dear Vincent 

      thanks for that....I think if been doing the wrong thing....while I had the shingles I had so much tea and coffee...

      i will look into those vitamins and start collecting. Would you mind telling me how much or what relief they provided.?

      also do I have to have PHN for a certain amount of time to be eligible for referel to a neurologist and MRI. It's been three weeks since the onset of my disease.  

      Many thanks

      jubs

      P.S.   If anyone has had treatments of any kind be it surgical or anything that they have found helpful I would love to know. 

    • vincent70312
      vincent70312 Jubs_UK

      Posted

      I caught chickenpox from my daughter at 49. Then, a few months later, I came out in Shingles. Now PHN for about 7 months so far. I have it mainly around my scalp, but all over from time to time. I personally found that avoiding coffeee etc. makes a big difference. I can more or less keep it under control with what I described. I can still feel it, but it is not as severe as if I don't take them. I used to jump out of my chair. I'm sure you know what that's like. As soon as you can for the neurologist. Some are on maintenance doses of antivirals. Gabapentin is usually the drug of choice for PHN, but it does have some side effects. Not everyone gets all of them, some don't get any. For me, I get the Shingles rash just bubbling under the surface, all the time. Never quite erupting into blisters, but always slightly raised skin, itchy, prickly. Odd pains all over, numbness. L-Lysine is thought by most I've encountered to be the most beneficial. I run a PHN site on Facebook. Feel free to join, lots of help there.

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Jubs_UK
      Jubs_UK vincent70312

      Posted

      Dear vincent

      thank you for that.....is tea the same as coffee? I love my tea and can give up coffee fairly easily. Please can you private message the link that was removed. Also I'm not on Facebook can I still view ur page. We need all the help we can get. 

      Im glad you mentioned what's most useful and first choice.....it's really hard to know what to try. It's best to try and find out what works best for me....so thank you.

      a couple of weeks ago I was ignorant of what nerve pain is....now I know, too well :..(

    • vincent70312
      vincent70312 Jubs_UK

      Posted

      Green tea is best. If you can stomach it wink No, it's a closed group, so that people can discuss issues without fear of casual obsevation by work colleagues etc.
  • jamie143
    jamie143 Jubs_UK

    Posted

    Sorry to hear you're having a hard time.  I found some relief with the supplement named ButterBurr.  I take pure eucalyptus oil & dilute it with some water.  Spray that where your pain is and rub it in.  It helps cool down the burning and gives some relief with the needles. I also take a B complex, B1 & B2. I hear the supplement Kava Kava is good for nerve pain.  I agree with Vincent go see a neurologist.  Best of luck. 
    • Jubs_UK
      Jubs_UK jamie143

      Posted

      Dear Jamie

      thank you for that....I will look into those items. I think it's good to try everything and see what gives relief. I don't want to limit myself to medication only.....

      do you think nerves can regenerate? I know Amithriptyline help with pain but no medicines help heal the problem...

      today for the first time i found relief for several hours......i was amazed as yesterday I was wondering if I could go on living.......I have been using coconut oil twice a day for almost 4days and I also had an hours counselling with my psychologist, I also cried my heart out and prayed for Gods help. I think the combinations of all of them brought me great relief. I am getting the needles and itches now but to get a good half day of comfort was amazing.

      i hope we can all share our experiences and benefit from each other. This is a great place.....I felt so alone before coming here. I know you all know exactly what kind of pain I am in.....others sympathise but don't really know what it does to you physically and mentally.

      thank you for the advice.....I'll go see doc soon

      jubs

  • croft4Penny
    croft4Penny Jubs_UK

    Posted

    Just to re-iterate my previouse posts: after almost four years of trying everything, I've settled on 600 mg Gabarentin every 3 hours and one or two applications a day of 4% lidocaine cream.
    • Jubs_UK
      Jubs_UK croft4Penny

      Posted

      Dear Penny

      im sorry to hear you've been suffering for so long....I'm glad you found something you can settle on. Penny how long have you been using lidocaine? Is it ok to use it long term? My doc gave me a prescription for the capsicum cream and lidocaine.....will try both and see where it take me. 

      What type of medicine is gabarentin?

    • croft4Penny
      croft4Penny Jubs_UK

      Posted

      I've been using the lidocaine for 4 years without a problem. It comes in both cream and patches. The patches are covered by Medicaire in the US, but the cream is not. There is also an ointment that is covered by Medicaire.

      Gabarpentin is the generic version of Neurontin. Check it out on the web. I take 600 mg every three hours, even through the night, if the pain wakes me up.

  • Jubs_UK
    Jubs_UK

    Posted

    I just realised I made an error in the above message...I was overwhelmed with the pain in the shingles area....I forgot to mention that amithriptyline totally took away the pain in my throat and ear and scalp....so much so that I totally forgot about it....but the pain on my skin is terrible and was at its very worst two days ago. 

    Please everyone whatever you find helpful share with me. We take our medications and they help to a certain degree....then we do more on top to make ourselves comfortable. I'm grateful for the replies I've had so far. I hope everyone finds relief. I am in a lot of discomfort but much better than at the time of first message.

    best wishes

    jubs

    • croft4Penny
      croft4Penny Jubs_UK

      Posted

      Glad to hear you've has some goood results with amithriptyline. I take that as well. I don't know how much good it does, but I wouldn't stop it.
  • brenda69456
    brenda69456 Jubs_UK

    Edited

    i am in the same situation got PHN and on amithriptyline too. Then i am trying capsaicin

    cream which has been helping but it burns when you put it on. Now i am trying with the cream rose Geranium oil between put on the capsacin which is every four hours. Hope you feel better so as i am doing the same trying to control this post shingles pain but the pain can last for months or years.

  • Solaris77
    Solaris77 Jubs_UK

    Posted

    Try Gallixa cream, its the only thing that works for me after trying everything thrown my way in prescriptions. After wasting thousands of dollars on compounded formulas, accupunture, neurologists, etc, etc. I've tried just about everything homeopathic, herbs for months or even years of treatment. There is no cure, the meds they prescribe do not work for 25% of PHN patients, so consider yourself lucky somewhat if they work for you. But the only good and honest doctors will tell you flat out they have no idea how to treat this or let alone cure your pain. All others have no idea what your going through and prescribe meds that do not work for PHN. This is a fact, most so called professionals will not admit. PHN sufferers are the real experts on what they feel and what works for treatment. Nobody else, sad but true.

    PHN long time sufferer in the eye forehead, top of my head regions. Been a decade now. PHN on the face, especially near or around eyes, limits all topical meds or other treatment methods used for PHN on other area's.

    Been off all meds prescribed for over 5yrs now, they never helped treat or cure the pain. Most often they aggravated the pain and affected my ability to feel somewhat like myself. So the choices are limited become a voluntary drug addict and erase all feelings of yourself or deal with the pain and still feel somewhat like yourself. Sedated is nice but no way to treat or live, not in my opinion. It has been extremely hard to go on living like this, lost all my friends and family, so consider yourself fortunate if your with someone who takes care of you. I was completely independent in doing things in my life before 2012 @ 33yrs old, the past 10 years i'm lucky if i can go shopping for groceries without feeling exhausted.

    If you need to talk anytime I will check the forum more often.

  • sue2910
    sue2910 Jubs_UK

    Posted

    Try acupuncture? I've had PHN since 2013, and after 5 years of very little of anything working (Lyrica, Lysine), I found some help from chiropractic care, and then my chiropractor referred me to an acupuncturist after we had a discussion one day about how the one-sided pain was like the body's meridians.

    ACUPUNCTURE did wonders. In the first session, 80% of my pain/stiffness/achiness along the right side of my body was GONE, and after 4-5 more acupuncture sessions, 95+% of my pain has been gone since then. Find a GOOD acupuncturist. Be prepared for "side effects.".....after I got up off the table from the first session, I experienced several minutes of vomiting and diarrhea, as if my body was purging something awful. I think it was!

    Today, I walk everyday, swim laps whenever I can and keep moving. Have been back to an acupuncturist in the past year (in a different city; not as good), and will do it again if I feel it will help. it's the ONLY thing that has given me any relief from the awful always-there nagging pain that I carried around for so long.

    Good luck!

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