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.
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.
Ooh thats a lot of Gabapentine. Does it affect you. ? I would be nervous to increase mine and didn't realise you could take as much as that. .
Actually, if I skip the Garbapentin, it hurts more. I'm off to take some right now
I'm applying .1% capsaicin cream 4 times per day, and it seem to be helping. It still burns at times, but I find that sensation preferable to the random and constantly changing nature of the neuralgia pain.
Heat also helps me, which is strange because heat makes it worse for some people. Ice, which others find helpful, seems to make my pain worse.
I'm also trying to follow an anti-inflammatory diet. No idea if this is helping or not, but it seems logical that it would.
I'm also trying to avoid things that seem to trigger flare-ups. So far I'm suspicious of tight clothing, coffee, exercise, and lack of sleep. None of these things *consistently* trigger heightened pain, but my spikes are usually preceded by at least one of these things.
I'm curious about how others will answer this question..
I have PHN in the head, right side and upper neck down to the shoulder. The issue of irritation through clothing therefore doesn't affect me. Instead the pain is perceived inside the head as a constant headache. I take Gabapentin (Neurontin) 3,600 mg per day,(same as croft4Penny) sometimes more than that, also Lyrica at night 2x75mg and Amitrryptline 25mg. This allows me to go through my day and at night almost pain free. There are sudden pains like a long knife stabbing, really very deep. Then it balances again. I'm scratching my head a lot with finger nails and sometimes break the skin surface but not serious. I don't apply any cream or patches.
I've had PHN since September 2015, no signs the Gabapentin has side effects so far, it worries me of course to be taking so much and also the Lyrica and Amitryptline. But really it allows me to function more or less, and my PHN is manageable, at this time.
Hi Penny, I'm also taking a high dose of Gabapentine, 600 every three hours sometimes more. See my reply to deblaInza.
I suppose it's a mind state resembling opiates but very mild. I'm thirsty all the time, I've suddenly increased in weight but working to get back to something normal. Other than that I think it's good enough for my PHN which is in the head. Have you noticed any side effects?
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.
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. 
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.
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.
I have PHN on left side of forehead, eyebrow and scalp for the past 16 months.
I've taken everything to no avail (endep, lyrica, and now dothep)
the only thing that helps, but just for a short period, is my weekly chinese acupuncture sessions (mentioned to deblalnza) I also had for the first time yesterday, acupuncture by laser on left side of forehead and eyebrow, which has helped a little I think.
I have scratched so hard on eyebrow and scalp that I've drawn blood.
It's the itch that I find the most debilitating and distressing.
It's good to find you. We are the only ones here so far that have PHN on the head. I did get a reply from someone writing on behalf of her partner who was in a very bad way but seem to have lost that thread. My problem is the fact that it results in headaches all the time but you don't see to have it that way? I went to the doc yesterday and he told me about the treatment that consists of ablation of the nerves. I wondered if you or anyone had heard of this...
Hi Ron,
I dont have headaches at all but incredible and continuous itch on the left side of scalp, forehead and eyebrow.
Have not heard of ablation of the nerves.
But my doctor on Wed,. (whom I go to weekly for acupuncture) gave me laser acupuncture on left side of forehead and eyebrow, it has helped a little.
Do keep in touch.
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."
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.
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.
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.
I have those random stabbings into my head also. They are so intense. I take 400 mg Lyrica, no Gabapentin. I also take pain meds and muscle relaxants, they are for my original pain condition that I had before shingles. I am itchy on the left side, scalp and face. My cheekbone area is the worst. It burns and turns red. It gives me trouble when I'm driving, as the sun is usually on that side (to the south/west of me). I am interested in trying the patches and creams I am hearing about on here.
Hi Erin,
The patches didn't work for me however the cream that Ray suggested, which I got my chemist to make up is helping a little.
If you can't find his response, I'll look for it and forward the mixture he suggested.
I was on Lyrica, did nothing for me and I had too many side effects, so stopped it.
Yes, it's a deep stabbing pain that comes suddenly. The rest of the time it's a dull headache all the time.I'm taking Neurontin 3,600 a day and that is effective but there are the side effects. Maybe I should change to Lyrica. No patches because the pain is under the hair on right side of the neck. I could try shaving my head but it's a bit radical.