1. Community
  2. Brain and nerves
  3. Postherpetic Neuralgia

PHN things that help

Posted , 46 users are following.

deblalnza
deblalnza

If anyone has found things that help, please share them. I know everyone wants to talk about their pain, which is all I'm finding on here, which I totally understand. But Please if anyone has found any little things that help please share.

5 likes, 125 replies

125 Replies

Prev Next
  • deblalnza
    deblalnza

    Edited

    So far tiggers for me have been more than 1 cup of coffee, to much physical activity with my arms, as my pain is deep inside my upper rib cage, but I can go for a short walk. Sugar seems to increase my pain level so I don't have white sugar, cereals etc. just fruit.

    Question, what is the best things to do to get better, some physical activity, what vitamins, what foods to stay away from.

    • jana02303
      jana02303 deblalnza

      Posted

      I haven't been able to find any research-backed recommendations about diet.  I've found plenty of alternative sites recomending various things, but they have sometimes been contradictory (Avoid nuts!  Eat lots of nuts!  Take B12 supplements!  Don't bother with B12 supplements because they don't work!)  Confusing.  eek For now, I'm following the basic health guidelines that are good for everyone, not just PHN sufferers: prioritizing sleep, exercising as much as I can without triggering the pain, eating lots of vegetables and other whole foods, and avoiding caffiene, sugar, excessive salt, preservatives, bad fats, etc.  I feel noticeably better overall when I do those things, and that helps the pain seem less overwhelming.

       

    • erin72929
      erin72929 jana02303

      Posted

      The arginine-lysine components of food either help or hinder the activity of the virus.  You can find lists of foods that show the ratio of each protein.  I am trying to avoid foods with arginine.  Then my vegetarian legum eating daughter arrived home from uni.  Now, maybe it was something else.  But I am going to try to settle this episode down again and then try some of the "bad" foods again.  Chocolate, which is high in arginine, has always given me cold sores for the same reason.  
    • charlie58834
      charlie58834 deblalnza

      Posted

      I agree with Jana.  Basic health guidelines for exercise seems appropriate to me.  I worked in medical rehab for 26 years, and that's basically what is recommended for any medical issue that has caused deconditioning.  Exercising at least 3 times per week for 30 minutes each, and up to 6 times per week.  Exercise has been shown to effectively improve low mood and mild-moderate depression, which most PHN people have issues with, though it is not a complete treatment for severe depression on its own. 

      As for diet, I've seen so many conflicting guidelines/suggestions that I think there are no solid research-based guidelines based on enough rigorous studies to be really definitive.  So, again, I just try to eat in a healthy manner.  People on this site often have nutritional suggestions, and I think they're worth trying if you want to. 

      Hydration does seem to be very important for me.  If I get even a little dehydrated, I'll start itching severely.  So, if that happens I drink a large glass of water and in 30 minutes or so it will stop. 

  • catherine67370
    catherine67370 deblalnza

    Posted

    I have traditional Chinese acupuncture for an hour once a week, which does help, but unfortunately not for long periods.

    I am seeing a neurologist on June 2 who specialises using botox injections for serious helath issues, will let you know how that goes.

    My medical insurance will not cover this but I'm now willing to try anything to get more permanent relief.

  • croft4Penny
    croft4Penny deblalnza

    Posted

    Like I said, "Lidocaine Cream 4%, Lidocaine patches. Clothing cut so as not to touch the affected area., Lorazapem 1.5 mg at bedtime, zilepidem at bedtime, Cymbalta, Garbapentin 600 every 3 hours."
  • erin72929
    erin72929 deblalnza

    Edited

    I have had PHN for seven months, located on the left half of my head (scalp, forehead, eye, cheek, lip, etc.)  I noted a correlation between any type of outbreak, such as a cold sore, or a canker sore, in my mouth and a recurrence at the original site of the shingles (left gumline in mouth) as well as blinding pain in all locations of the left side of my face.  I asked my pain specialist for a daily anti-viral and if I could add some supplements to my regimen.  He said they wouldn't hurt me and to go ahead.  He prescribed valcyclovir, which halved the level of pain.  I then added Lysine, as well as Vitamin D and Magnesium.  This routine has lowered my pain level from 8-10 to 0-3.  I try to avoid foods with a higher arginine than lysine content also.  If I miss the supplements, then the pain increases.  Hope this helps someone else.  
  • kayfromtheus
    kayfromtheus deblalnza

    Posted

    I've found that when the pain gets horrible for me (mine is on the dermatone from the right of the spine all the way around to the front of the chest under the breast) I put on a back belt that fastens with velcro and then tuck in balled up wash cloths to press hard directly on the areas of most intense pain. 
  • deblalnza
    deblalnza

    Posted

    I read that they are doing blood filtering to help with nerve pain. So I went and donated plasma, this is where they take your blood out spin off the plasma then filter the remaining whole blood and return it to your body. It's been 3 days now and the pain level hasn't exceeded a level 3 yet, I still don't have any energy. I'm not sure if this has helped yet but I am trying everything.

    The next thing I'm going to try is the hyperbaric chamber, they put diabetic patients in this for nerve repair, it helps them keep their limbs.

  • Misstickle
    Misstickle deblalnza

    Edited

    My husband's PHN pain is is on the back and front left chest area. He has been suffering really severe pain for over 8 months now for which he currently takes high dosage gabapentin and oxycodrine tablets and liquid, and capsaicin cream. A week ago I read somewhere to cover the affected area with clingfilm. I stick it on with surgical tape. For the first time in all these months he has had some considerable relief from this agonising pain. Yet today it suddenly started up again! However, tomorrow I will definitely be wrapping him up again in clingfilm. Anything is worth a try!

  • Misstickle
    Misstickle deblalnza

    Posted

    Forgive me deblalnza if I have already commented, but wanted to tell you about my husband . He is still, after 8 months, suffering badly on his back & chest with PHN. 2 weeks ago I have started sticking clingfilm over the affected areas. I stick it on with a few pieces of surgical tape round the edge. Now in the second week of doing this he says he definitely thinks it is making a difference to the pain levels. He still suffers but says he is getting periods when it is more of a dull ache than the excruciating needle-stabbing pain. He is still taking high doses of gabapentin, oxycodrine and I'm applying capsaicin cream. He only has the clingfI'm on in the day time - strangely (and fortunately) enough the pain doesn'the bother him at night. Probably because of drug nduced sleep! I'll keep you posted on his progress.

  • erin72929
    erin72929 deblalnza

    Edited

    I am into my third day consecutive of way less pain.  Some itching of scalp, slight pain in face.  Last week was brutal.  I find heavy weather is a trigger, and it gives me these headaches that are unlike anything I had ever experienced.  In addressing this flare up, I went to the mattress.  I actually went to bed at a regular time, between 10-11, and out with the light, down with the book.  A couple of nights I had to take more pain meds but since Saturday, feeling so much better!  Sleep!  I felt so good yesterday I made rice and put chicken in the oven.  I even minced a jalapeno and my neck/shoulders have not kicked off.  I'm feeling really good.  So my suggestion is get good sleep.  Practice good sleep hygiene.  It really makes a world of difference.  

     

  • bill67843
    bill67843 deblalnza

    Posted

    I've only been post-shingles for 4 months. More than I want. It'son the upper leg on a repaired tibial plateau fracture repaied with plate and screws.

    Have been through opoids, Gralise, and gabapenin. None now.

    I have found a form of Capsaicin that I Iike. CVS drugs store has a 0.15% liquid in a 1 oz no touch applicator. Not messy like the cream; and strong.

    Not good for around eyes. It seems to sometimes change the pain on my thigh to a mild itch.

    As miserable as I have been, lots of changes for me, my heart and hopes goes out to those of you who have it worse. I hope we find ways to live as well as possible.

  • charlie58834
    charlie58834 deblalnza

    Edited

    Hi DeblaInza,

    There are a number of people who have shared things that work to help manage PHN.  I think you'll find them on the "Depression with PHN" thread, and also some other conversation threads.  For me, two things have been most effective: 

    1. Aspercreme, which is an over-the-counter topical cream, is effective at decreasing itching and pain.  Someone mentioned Dencorub, which is like Aspercreme but has more of the active ingredient, slicylate [aspirin]. 

    2. Getting depression under control, using antidepressant medication and therapy.  Depression magnifies pain, and then pain does the same to depression.  It's important to change the way you think, into more helpful and solution-oriented paths. 

    I think you're on the right track asking people to share "little things that help" rather than complaining.  We people with chronic pain tend to start out by complaining a lot, which just turns other off and makes us more depressed.  But, it's a natural thing, initially. 

    Other things mentioned have been lidocaine gel, also available in the US over-the-counter.  One person talked about diet changes.  Several people find capsaicin creams helpful, but for me it just increased itching to the point that I tore my face open scratching!  So try a small area first if you try capsaicin. 

     

    • croft4Penny
      croft4Penny charlie58834

      Posted

      Agree with Charlie entirely except I would use 4% lidocaine cream, rather than gel... and an antidepressant has a dual effect on you psyci and the pain itself.
    • charlie58834
      charlie58834 croft4Penny

      Posted

      Penny is right.  Modern antidepressants affect both the depression and the pain. 

      The older antidepressants, tricyclics and MAO inhibitors, did not work too well with depression in my opinion [I'm a psychologist with 40 years experience].  Amitriptylene is in this bunch, as a tricyclic.  It is the most sedating of the tricyclic antidepressants, and all of them are sedating.  It is now used mostly for a sleep aid, and sometimes for pain, but it has a long half-life:  In other words, it stays in your system a long time, leading to morning sedation.  Not the best sleep aid.

      Newer antidepressants [Prozac, Paxil, Zoloft, Wellbutrin, Cymbalta, and others] work better on depression, and also help with pain.  And, they are not sedating for most folks.  The SSRI's [selective serotonin reuptake inhibitors--all of the above except Wellbutrin] sometimes have a sexual side effect of delaying orgasm.  Wellbutrin tends not to have that side effect.  It has been shown to be equally effective with depression. 

      Sorry about getting technical here.  I don't mean to do so without good reason.  But this is important stuff, and you may not get this info from your physician.

      As I've said in another thread on this site, DO NOT SIMPLY TAKE THE INTIAL DOSAGE YOUR DOCTOR PRESCRIBES AND STOP IF IT DOES NOT WORK WELL!  Antidepressants take about 3 weeks to BEGIN to take effect, and you don't get a full effect for about 4-8 weeks.  They must be taken every day, not "as needed."  Also, the initial basic dosage may not work for you.  You may require 2-3 times that dosage.  So you must work with your doc over months to get the correct dosage for you. 

    • Hinter
      Hinter charlie58834

      Posted

      For cream, I use a Lidocaine 2.5%/Prilocaine 2.5% applied every 4 hours, I'm going to try covering it after I apply it, as the directions hint at using an air tight bandage over it (actually makes sense as long as it doesn't rub anything).

      I also take Gabapentin 600 every 6 hours.

      I might try the Aspercream to see if thats any better than the cream.

      I got rid of all cotton touching the area and only have synthetic microfiber how. The cotton was like sandpaper!

      I'll also add the Capsaicin to my list to try.

      I've had PHN now for 2 years.

    • charlie58834
      charlie58834 Hinter

      Posted

      HInter,

      Try the capsaicin in a very small area first.  With some people, it sets off a great increase in pain or itching.  If you tolerate a small area OK, then maybe it'll work for you.  You have to apply it frequently for it to work. 

      PHN does get better with time, but very slowly.  I've had it 26 years.  Once I learned to manage it pretty well, its effect on me and my mood was much less.  With time, it is now an annoyance. 

    • Hinter
      Hinter charlie58834

      Posted

      Charlie,

      Should I use it together with the lidocaine or not? I think I tried it before, but did not stick with it. The capsaicin is something that is used all the time then?

    • charlie58834
      charlie58834 Hinter

      Posted

      I don't know if I'd use lidocaine and capsaicin together.  I guess you could try.

      Capsaicin works by depleting substance P, which is the chemical that reacts to chiles to give you a sense of heat.  The idea is that once substance P is depleted, you can't feel as much pain.  But, the chemical builds back up rapidly in your skin.  So, you have to use capsaicin frequently to keep it low.  I think the directions say to use it every 3 hours or so, but read what it says on the tube. 

    • jeff76414
      jeff76414 charlie58834

      Posted

      I also have PHN for 5 months and also use Aspercreme which helps some as well. I get it from CVS roll on and use it all during the day. I wanted to ask if anyone had used the treatment where the doctors office applies the high dose of the capsaicin cream on and keep on for 45 minutes? I currently use lidocaine patches on my back and cream on front due to I work and cannot get the cream on my back. This has been a terrible journey but like the idea of recommendations from you guys on things to try.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.