Tuesday, July 10, 2007

Shingles BITE.

Ok, so everyone knows I have shingles and PHN. It got terribly worse when I worked full time, and has since gotten better since I quit, BUT, the migraines from the nerve damage is getting more often, and more severe.
I hate taking medicine, but am at the point that it isn't optional.

So........I get online and find a message board that is about this problem. Keep in mind that I am 40 years younger than most people that have shingles.... I post some questions about the meds I have taken that didn't work, and the ones I tried to take that made me puke my guts up. This is the response I got from someone:

I have suffered with post herpetic neuralgia since February 2001 when I contracted a bad case of shingles. The shingles affected my left hand side; I had a rash from groin to hip which also became infected. The pain at the beginning was so severe that I could not function beyond it. It took up all my resources just to get through the day. One week after I contracted the initial shingles disease my mother had a stroke. She died within three weeks. I do not know if my emotional pain had anything to do with my subsequent long term neuralgia. My doctor did eventually prescribe famciclovir, but I think it was too late to prevent the phn. It was not until three months had passed without any great lessening of my pain that my doctor referred me to a specialist.This doctor prescribed amytriptyline and gabapentin which I then continued to take for the next few years, along with 7.5mg dose zopiclone pills (later reduced to 3.75mg)when I really could not get to sleep. I developed an intolerance to the gabapentin eventually. Itchy skin rashes which burned, expecially when I went out in the sun. A further specialist at the pain clinic I was referred to tried a couple of different drugs and I eventually found that clonazepam provided the same relief as the gabapentin but without the rashes. I am now developing an intolerance to this as well though. I continue to take amytriptyline and have started cutting my clonazepam pills in half to try and cut down. Although the skin rashes have reduced the pain relief is also lessened and, whereas the evening and nightime (I suppose when my mind was less absorbed with work, etc) used to be my worst times, I am now finding myself increasingly distracted by the pain during the daytime. I have a TENS machine which I often hook up to in the evenings but all I am really doing is swopping one sort of pain for another. I have to turn up the dial quite high for it to give me any sort of relief.I don't know what my prognosis is. I sometimes think that the pills I take must be shortening my life but that I wouldn't really have a life without them.I have been taking this cocktail of medication for five years now. I try different combinations and strengths. I try to get to a balance of maximum pain relief for minimum pill taking. I have not been back to the pain relief clinic for over a year and my pills are on repeat prescription so I haven't seen my doctor either. Mentally I cope, just. I don't think that my pain has lessened that much since the first year, I have just got used to it - what else can I do.If there are ever any new drugs or treatments which anyone wants to trial then I am more than willing to be a guinea pig. I've got nothing to lose.

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Last time I tried to get info, I got the same type responses. I have taken all those meds mentioned, too. Along with about 10 other things, in the 7 years that I have had this.
I have tried capscasin, ice packs, dermatologists, heating pads, chiropractor, and several other old wives tales.
If anyone knows anything I can try, let me know!!! Ask your grandma, she'd be the one to know...

4 comments:

Sugar-n-Spice July 10, 2007 at 10:20:00 PM CDT  

actually, i didn't know you dealt with that. sorry. i know that can't be fun. are you sure you're feeling up to 3 extra kids thurs. ?

Anonymous,  July 11, 2007 at 7:17:00 AM CDT  

matt's had shingles. i'm so sorry. his didn't sound as severe as yours, though. i'm so sorry.

Shelley July 11, 2007 at 7:54:00 AM CDT  

Yep I am 100% up to extra kids. You learn to deal with it, some days are pretty much pain free, it's not always terrible.

K.T. is Mommatude July 11, 2007 at 11:21:00 AM CDT  

I know someone who is not my grandmas age(cause grandma aint got it)who does have it-I will ask her,she is in her 40's.So I will check it out!

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