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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

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  • croft4Penny
    croft4Penny deblalnza

    Posted

    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.
    • elizabeth_03822
      elizabeth_03822 croft4Penny

      Posted

      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. . 
    • ron96331
      ron96331 croft4Penny

      Posted

      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?

  • croft4Penny
    croft4Penny deblalnza

    Posted

    Actually, if I skip the Garbapentin, it hurts more. I'm off to take some right nowarrow
    • ron96331
      ron96331 croft4Penny

      Posted

      Hi Penny, would you describe Gabapentin as addictive? I mean if you stop taking it, the pain comes back, sure but is there also a withdrawl there too?
    • Caseysue
      Caseysue ron96331

      Posted

      I started with Lyrica but it made me sleepy at first and then effects wore off. Plus it caused me to gain weight. I then went on Gabapentin. After a year it wasn't helping and I had to wean myself off. I use a cream that has 4% Lidocaine in it. You Can Google Shingles cream and get a variety of products. You have to try a few to see which one works best for you.

    • charlie58834
      charlie58834 ron96331

      Posted

      Gaba is not addictive.  In forms like neurontin, it was initially developed as an anti-seizure medication.  But, it is rarely used for that.  Instead, it has been found to be effective for nerve-based pain. 
    • Caseysue
      Caseysue charlie58834

      Posted

      when I was taking Gabapentin and decided to go off of it, my Dr had me wean myself off. If stopped suddenly it can cause problems. As it is an anti seizure medication he didn't feel I should go cold turkey.

  • jana02303
    jana02303 deblalnza

    Posted

    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..

  • ron96331
    ron96331 deblalnza

    Edited

    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.

    • catherine67370
      catherine67370 ron96331

      Edited

      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.

    • ron96331
      ron96331 catherine67370

      Posted

      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...
    • catherine67370
      catherine67370 ron96331

      Edited

      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.

    • erin72929
      erin72929 ron96331

      Edited

      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.  
    • catherine67370
      catherine67370 erin72929

      Edited

      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.

       

    • ron96331
      ron96331 erin72929

      Edited

      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.
    • charlie58834
      charlie58834 catherine67370

      Edited

      I also have PHN in right eye, forehead, and scalp.  My main symptoms are severe itching and pain with any touch.  Best for itching for me:

      1. Aspercreme, or any other topical cream with salicylate in it.

      2. Stay hydrated!  When I get a severe itching bout, it is alleviated 30 minutes after drinking a large glass of water. 

    • ron96331
      ron96331 catherine67370

      Posted

      Hi Catherine, sorry I've not been in touch, I suppose I'm living in a haze caused by the meds. I had nerve block 4 times since we last spoke. It's an injection of steroids I think, in the right occipital nerve. It was effective once I remember, then the pain came back. Every other time the pain comes back, soon after, or the next day. Not to be confused with the pain in the scalp where the needle went in. So how are you getting on these days Catherine?

    • susan74911
      susan74911 charlie58834

      Edited

      Hi, I also have PHN in right eye, cheek, lip, forehead and scalp. 

      I've been going to a pain clinic for 4 years now. I take Pregabelin, but have tried lots of medication where the side-effects have outweighed the benefits. I'm currently having capsaicin patch treatment on my head, which is a fairly risky sort of treatment. (They have to cover up my eye to prevent damage.) I have to have my head shaved every 3 months, then they apply the patches to the line of the nerves. I leave it on for as long as I can bear (just under an hour) and it burns like mad. I have to have ice patches on my head on the journey home. But, in about a week I start to have lots of relief, and it lasts at least 8 weeks. Each time I have it, the pain that comes back is less than the time before. It doesn't work for everyone, but for some people the pain goes completely after a year or so of treatment. I bought a wig to wear when I have no hair, and that seems ok though it irritates my scalp. 

      I'd definitely recommend asking about it.

    • charlie58834
      charlie58834 susan74911

      Edited

      The intensive capsaicin treatment is interesting.  Haven't heard of that before.  Sounds very painful, but if it's worth it to you, then it's worth it. 

    • susan74911
      susan74911 charlie58834

      Edited

      I've just remembered the name of the patches. They're called Qutenza. I'd previously had some benefit from Lidocaine patches but then became sensitive to the glue in the patches, and now also have sensitivity to the Lidocaine cream. I find that the best thing to help is distraction. I knit complicated patterns to try to focus my attention away from the pain, and that is helpful (most of the time!)

    • Caseysue
      Caseysue susan74911

      Edited

      I too try to find distraction....Believe it it or not, mine is adult coloring books. It's helps calm me down and eases the pain.

    • charlie58834
      charlie58834 susan74911

      Edited

      Susan and Caseysue,

      Good posts on what works!  Distraction is one of the best of the basic pain management tools.  Any task that requires intense concentration will work.  Best if you enjoy it too.  I use meditation, deep relaxation, crosswords, and exercise activities like snowshoeing and kayaking. 

    • Caseysue
      Caseysue charlie58834

      Edited

      I would love to do more exercise, but when I sweat it irritates the PHN.....

      But I am beginning to learn meditation.

    • charlie58834
      charlie58834 Caseysue

      Edited

      Heat also irritates my PHN, but walking doesn't produce much heat, and if I take my dogs they distract me too!  Swimming might work for you also.  Using a fan on low setting while on a treadmill or stationary bike?  Or better yet an overhead cieling fan?

      Meditation helps me a lot.  There are lots of groups that teach mindfulness meditation now, and it's been shown to have great results for memory, stress management, longevity, and especially pain management.  It was started by John Kabat Zinn, in a hospital setting, for patients with pain, disability, loss, etc.  There are also apps that lead you through mindfulness meditation, some free. 

    • Caseysue
      Caseysue charlie58834

      Posted

      Charlie,

      Debbie to OA in both knees and ankles my Dr. will only suggest short walks. I have recently located a near by fitness center with the pools I plan to use this for exercise for my ankles and knees. I wish we could find a topical that did away with this invisible but horrible pain. I must say that after 9 yrs. I wish it go away.....till then I am coping.....

    • charlie58834
      charlie58834 Caseysue

      Posted

      Good idea using pool exercise.  Most docs recommend it to OA patients, because it takes most of the weight off the joints.  Water walking is good.  Some fitness centers offer moving water to walk against, and my friends who use those classes say it is a very good workout with low-level joint involvement. 
    • bonnie94603
      bonnie94603 catherine67370

      Posted

      Catherine, for the itching, and a good night's sleep, have you ever tried Visteral? It's as old as the hills. AKA hydroxyzine. Your doc would need to write you a script. Read about it and maybe you'll consider it. Good luck!💤💤💤💤

    • lawrence50
      lawrence50 ron96331

      Edited

      ron96331, I feel bad for you having PHN for so long. I just started the PHN experience starting around March of 2020. I also have it in the head, face, right side. My right ear drives me crazy and I haven't been able to sleep on my right side since it began. It affects my right shoulder and neck as well. I suffered cluster headaches for 32 years before this. I don't know which is worse. With cluster headaches at least you get a break from the pain. With this PHN, I can't get a break from the pain. The only break is when I sleep.

      I've read a lot about Gabapentine. Is it better than pregabalin? I've been taking pregabalin, 70mg, and it's not working that well. That's what I'm doing here, trying to find out what helps others with the same condition. The only cream I've tried is Bengay, which has proven to make it worse. Would you give your opinion about the differences between Gabapentine and pregabalin? Thanks. If anyone else would like to add comment, I would be be very appreciative also.

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