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What makes it better? What makes it worse?

Posted , 4 users are following.

jana02303
jana02303

From reading many other threads, it seems to me that one frustrating thing about this condition is that there's no one-size-fits-all description or solution.  Is there anything outside of heavy prescriptions that soothes your pain, and are there any triggers that make it worse?

Here are things that usually provide some relief:

1.Epsom salts compresses - help calm down the skin sensations

2. Rose geranium oil - helps with the skin pain and stabbing, and the scent is calming to me

3. Heating pad - helps when the pain is deeper, or maybe it just relaxes my tense muscles

4. Ibuprofen - helps with the aches

5. Acetaminophen - I don't think this works as well as ibuprofen, but I haven't given up on it.

6. Sleeping. I usually wake up at a level 0 or 1, and it builds up as I go about my day.

7. Sitting quietly. No friction when I'm not moving.

8. Exercise. Maybe it's true what they say about endorphins.

9. Sometimes stretching or scratching provides relief.

Things that make it worse

1. Coffee 

2. Lack of sleep

3. Possibly my hormone cycle; I'm not certain about this one

4. Sometimes, it's worse if I stretch, scratch, exercise, or sit still.  Yup, these are also on my list of things that sometimes help.   [eek]

5. Random triggers I may never be able to identify.

Do any of these things sound familiar to anyone else?   Or is there a good possibility this isn't PHN but something else?  Like, losing my mind?  

3 likes, 9 replies

9 Replies

  • ron96331
    ron96331 jana02303

    Posted

    Hi Jana

    Unfortunately most of these things don't sound familiar to me except the heating pad. I Have PHN on the right side of the head and the only thing that works is Neurontin, now on 600mg three times a day. Ibupruphen just doesn't do it and the other one you mention I don't know. I do a lot of scratching on the right side of the head If I could do it with my right foot it would be exactly like a dog.

    So, I don't know, sometimes I feel like I'm losing my mind too.

    I do hope you find some way through this and get some relief

    Best wishes 

    ron

    • jana02303
      jana02303 ron96331

      Posted

      Thanks.  It’s reassuring to know I’m not the only one who responds better to heat than cold, or the only one who feels like I’m losing my mind!  It helps to be able to compare notes with others, although I wish none of us were in this boat.  Best wishes to you too.
    • anna38464
      anna38464 ron96331

      Posted

      HI Ron,

      I also have PHN but it is on the left side of my scalp, left ear and neck. I lost most of my hair on the left side due to lesions,(itching and oozing). It was pretty horrific because I have long hair. Once I touch my ear my head also starts to itch and burn. Heat doe snot help me but ice does! It's pretty awful , huh? Believe it or not, it is lessening a bit after 6 years. I am on Tegretrol and Lyrica!!

      Take Care Ron

      Anna

    • ron96331
      ron96331 anna38464

      Posted

      Hi Anna

      It's good to talk to someone who also has the headache pain. It just finishes me totally - like a permanent hangover.I have the itching too. I take Lyrica at night 75 mg also morning and Trilen 10 mg at night. The big one is  Neurontin 600mg three times a day. Some of these may be brand names of the same medicine. I heard that it could take years and good to know it's lessening after 6 years.

      Take care of yourself

      Ron

    • ron96331
      ron96331 jana02303

      Posted

      Thank you Jan for starting this thead. I use heat pads in fact they're round balls full of medicinal herbs with a handle to hold. You steam them in a large steamer (can use the same steamer for cooking food). It's really too hot when it comes out of the steamer so you have to wrap it in a clean dishcloth or something, an old tee shirt.

      Do you have the pain in the head?

      ron  

  • ianmac_45
    ianmac_45 jana02303

    Posted

    This sounds very interesting . I have suffered with PHN for over 2 years now, surviving on 300mg Lyrica daily which eases it slightly. I will try some of your suggestions. Thanks Ian
    • jana02303
      jana02303 ianmac_45

      Posted

      I hope they will help you!  I should note that I am less than 3 months into this ordeal and am not taking any of the heavy prescription drugs.  The doctor is wiilling to write the prescription, but said that if the pain is manageable with the lesser measures noted above, then it's not worth risking the side effects from the heavy drugs.  I agree with this plan, although if it stops responding to my remedy list or continues into the warmer weather I'll have to reconsider that.  
  • anna38464
    anna38464 jana02303

    Posted

    HI I did not read osme of your earlier threads. Not sure how to access it. Yeah, you can go crazy..but let me tell you ,,,I have had it for 6 years and it is actually getting less. The Tegretol may be helping but not sure.

    I find ice an ice pack helps it and unlike you ,mine gets triggered when I sit and then I tend to itch the area. Once I touch it it is like it gets triggered real bad and that is what I call a flare. 

    The pain can be surreal but I can not believe mine is a bit less. Sometimes I actually take morphine to relieve it but even that does not take care of it all. Thanks for some of your suggestions and observations.

    Anna

    • jana02303
      jana02303 anna38464

      Posted

      Thanks.  I'm glad yours is improving. 6 years sounds like a terribly long time!  I may have to try ice packs.  It seems like they work for a lot of people. 
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