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PHN Pain Triggers

Posted , 18 users are following.

Geezee
Geezee

I have been trying to keep track of possible triggers for my pain attacks. This might be a good forum to share and for others to share anything they might have noticed caused their pain to flare up. 

The pain for me is on the upper left side of my face, forehead and scalp - so a pretty exposed area. These are some of the triggers I have noticed:

Dramatic temperature changes (esp cold to hot)

High winds

Stress (obviously)

Tiredness

Getting my hair cut/washing my hair

Sustained pressure on an effected area

Bright lights or glare from sunshine

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  • Jibby1
    Jibby1 Geezee

    Posted

    Thank u for your post.  The triggers you noted are all triggers for me also.  I have been dealing with this pain for 13 months and feel for you.  Have you found what works best to alleviate some of the pain?  Acupuncture helped me for a while, but it didn’t last long.
  • babs99203
    babs99203 Geezee

    Posted

    Well, I've found a trigger for me that others had mentioned, but it's new to me. I have PHN in my back/chest so I've mentioned lifting, twisting, bending, reaching all set if off. But now I too have the danged (I cleaned that up a bit) pain from clothing. I knew that wool now makes it worse and as I live in WI and it's obviously cold (and I tend to be cold to begin with) it's been hard to find good clothes to wear. My wardrobe's gotten really limited, so I've had to buy a few things. But I was excited to remember some warm sweaters I had which would work. Except, if they put any pressure on my back or shoulders, the pain sneaks up on me. At first I didn't realize it was the clothing. WHY would a cowl-necked sweater, hooded sweater or a fisherman knit style with designs around the yoke cause this? Because they all had a few extra ounces of weight on my nerves in the back. Even a regular sweater that had a decorative 12" zipper caused this. So, my closet and drawers still have clothes in them, but I just can't wear 80% of them. Today, I again tried the zipper sweater, remembering that by evening I'd probably have to take it off. But now that I know what's going on, after two hours when the pain got worse and I blamed it on doing the wash or bending to brush my dog, I realized it was the sweater! REALLY? How idiotic IS this condition.

    Thanks all for being here, so we can share and vent.  BTW, don't get me started again on the problems Gab causes...

    • jeaneen09890
      jeaneen09890 babs99203

      Posted

      Hi Babs. Sorry to hear you are being affected by your clothing. Allodynia! I have my half of a big walk in closet and wear very few of my clothes also. My PHN pain starts in my RUQ then encircles my waist, radiates up into my right shoulder and sometimes into my groin. Haven’t been able to wear a bra for two years.

      Can’t wear pants with a zipper. Pretty much wear what I call yoga pants, undershirts and soft cotton tops. Also have difficulty with underwear and when just at home don’t wear any usually.

      On a positive note, haven’t been nauseous for 3 days. And so glad to have found this site. I am not alone. Jeaneen 

    • babs99203
      babs99203 jeaneen09890

      Posted

      Jeaneen, I don't know why your reply helped so much, particularly the comment about your closet, but thanks, it sure did. I had a really good week, a month ago, now things are going as well. But at least I can wear undies and pants! Nausea..hmm, me too! It does feel that some of those symptoms I had with nausea and fatigue are back now. My pain's increased a bit too, but I'm chalking that up to my decrease in Gab. I may have it my "low" dose (1200mg) for now. I was previously at 2700 a year ago. I'm just taking it easy a lot right now. I hope you do too.

    • jeaneen09890
      jeaneen09890 babs99203

      Posted

      Hi again. I am glad to help in any way. I think I mentioned that I would be seeing a neurologist at U of M. That was last Monday. I was seen by a resident and her attending. The resident wanted to know why I was on Pregabalin instead of Gabapentin. I told her that my NP thought Pregabalin(Lyrica) had a lower side effect profile. I take 200 mg twice daily. Today it sure doesn’t seem to be helping. Nothing is. Going to try a lidocaine patch and see what happens. Been reading articles re pain. There is next to know research, no funding. I do take oxycodone and today it doesn’t seem to be helping- it usually does.

      Helps to know though, that I am not alone.

    • babs99203
      babs99203 jeaneen09890

      Posted

      OMG, as they say, Are we sisters from another mister?? Is it February or why are we having more misery than usual. I actually spent the morning, again, googling Gapapentin tapering etc. I even called a "help" line for addiction to see if I could learn anything more about how the drug works and if I should cut back or stay the course as I'm so miserable right now. We'll just say it was worthless.

      But as a very interesting side note. Last week, in a random situation, we met a couple and we hit it off and talked for a long time with them. Co-incidentally, they also had reservations right after us at a restaurant we were going to. He was a research chemist at Northwestern University and he explained in GREAT detail how these drugs work. Lyrica, pre-gab, was created at NW, so they got huge royalties and there's a building named at the chemist who found the MOLECULE. Yes, even tho these drugs are made of up many types of atoms (if I remember my HS science correctly) but only one molecule seemed to work. No matter what combinations they tried, it had to be that molecule. So when I asked how gab and Lyrica differ and which is "best" he said, there's no way of knowing. It's totally individual. So whether one works better or has fewer side effects, you don't know until you try. He also agreed that you can't switch between the two without going off the first one. He then gave me more detail, again, how the drug works in the body, but I just believed him. He also agreed that there's not much research and it's very hard to treat. How cool is that!! We talked for 20 minutes, when they finally had to sit down to eat.

      Ya know, I may just spend some money on myself.  No, not to buy a diamond, but to buy a Lidocaine patch. Thanks for reminding me. They did work well, but even the OTC ones are expensive. Hang in there gal.

    • jeaneen09890
      jeaneen09890 babs99203

      Posted

      Hi again. I know the patches aren’t cheap. My NP has a sweetheart of an MA and she has to get a prior auth from my insurance prescription coverage, which thankfully I have, but the co-pay is still high.

      The neurologist at U of M pretty much stated that all they can do with PHN is “try another drug”. Because of my difficulty with antidepressants they would have recommended that I try nortriptyline, but instead they recommended tegretol. Not starting another drug until I seen my NP on Friday.

      Thanks for the info. You hang in there too. Jeaneen 

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