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Old 08-24-2008, 04:23 AM   #1
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PHN following shingles

How do I stop the pain. It is debilitating and I can't live my life. I use percacet qid and the lidocaine patch and still do not get relief.

Please if you have any ideas to help, share them with me. Thanks!

Last edited by janeann45; 08-24-2008 at 05:40 AM. Reason: Add info

 
Old 08-29-2008, 10:20 PM   #2
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Smile Re: PHN following shingles

Hi,
I got shingles about 8 weeks ago and the pain was horrid. My dr started me on Valtrex and a spcially compounded cream. It didn't help at all! I went back and told her I need something else and she put me on a very low dose of neurontin. It didn't work either. I called again and she tripled the dosage. Still no relief! I was going nuts. I called her and said she needed to do something or put me in the hospital. She again put me on the max dose of neurontin that was allowed, and YIPEE!!! It is actually keeping the pain at a manageable level. I have to take it three times a day, but hey, if it keeps the attacks and the pain away, I am all for it. I also take Xanx and welbutrin xl to keep me balanced. My husband passed away last October after suffering for almost 9 months of staqe 4 lung cancer. Anyway, hope this helps.

Oh, and I also use Lidoderm patch all night long. I take it off in the morning for a few hours and put it back on. I don't wait the 12 hrs on 12 hrs off because the pain is too severe and the patch does help some.

Last edited by blinkfactor; 08-29-2008 at 10:23 PM. Reason: Addition

 
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Old 08-30-2008, 09:27 AM   #3
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Re: PHN following shingles

I have an 87 year old aunt who is still feeling pain after having shingles eight years ago. She is taking neurontin and uses the lidocaine patch which helps take the pain away. My mom, two sisters and aunt were the unfortunate ones to have shingles, I am the one with PN. Take care, let me know how you are doing

 
Old 08-30-2008, 05:32 PM   #4
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janeann45 HB User
Re: PHN following shingles

Hello blinkfactor,

Thanks much. I began with a course of acyclovir. I too had a pretty good trial with a similar drug, Lyrica. In spite of raising the dosage over a four week period, I had no relief. At this point I cling to my Lidoderm patches (not terribly helpful) and Percocet. I have about twice as many good days as bad ones. My doc was very up front about dosages and the possibility of addition so I'm careful to watch how much and how often I take the drug.

Last edited by janeann45; 08-30-2008 at 05:36 PM. Reason: additions

 
Old 08-30-2008, 09:38 PM   #5
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Smile Re: PHN following shingles

Hello Everyone....I just wrote a whole big post and accidentally deleted it I think. I will make it short this time. I had a bad day today with another shooting pain under my arm and into my breast. The nuerontin is working so far and I really hope this doesn't last for years. My Sister went day before yesterday to get the Vaccine so hopefully she won't get it. I doubt she will anyway because she keeps on top of all her health issues. I know that I probably got it because my immune system was shot after taking care of my dying husband for nearly a year. And, my Dr says it is also triggered by anxiety, so I had both. Anyone that says that the antidepressant doesn't work is not taking the right one. It helps me get 6-8 hours of sleep or more,. which os essemtial in the healing process. I take the lowest doses of meds that work...unfortunately the neurtontin is the highest they can give me, so once this seems to be healed, I will have to be wiend off of it. GOOD LUCK TO ALL OF YOU AND THANKS FOR YOUR POSTS! Nancy

 
Old 08-30-2008, 09:42 PM   #6
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blinkfactor HB User
Re: PHN following shingles

Hey Janeann...I am praying that this goes away soon and doesn't last years like it possibly could. I don't want to get addicted to any of this stuff, but I wouldn't be able to take the pain without the meds.
Keep posting and good luck.
Nancy

 
Old 08-31-2008, 09:15 PM   #7
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blinkfactor HB User
Re: PHN following shingles

Hello Again! Well, I had a really bad "pain" day and it is still bad. Ready to take some meds and pray it finally eases it for the day. Hope you are all doing better.

 
Old 09-02-2008, 02:27 PM   #8
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Re: PHN following shingles

Sorry you had a bad day. I know what that's like. What pain meds are you using now?

 
Old 09-02-2008, 09:55 PM   #9
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blinkfactor HB User
Re: PHN following shingles

Hey Janeann!
Yes, I am still in pain! She has me on 1200 mg's of neurontin a day. It is in a bad spot..under arm and left breast. So I can't walk around all day with my arm in the air..LOL It gets more irritated because it is right in the crease and then my arm also sits on my side and breast....so much fun we're having, huh? I hope you are doing better. I am acutally going to call my dr tomorrow to see if a steroid would help at all.
Let me know how you are doing! Nancy

 
Old 09-03-2008, 07:33 PM   #10
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Re: PHN following shingles

Did well today with a percocet for breakfast (!) followed by three lidocaine patches. Then I was off for two hours of hard work at physical therapy. I really recommend you try some form of aerobic exercise. Truly lets the the endorphins out. On the 14th of July I fell down a flight of stairs at a store and ripped my hamstring muscles terribly. I've had a fairly timely recovery except for the extreme pain of the injury that brought on the shingles in the first place. Ah well. Lest you think I'm some sort of an exercise freak, only the necessity of therapy has brought me to that conclusion. I use the nu-step and treadmill plus another hour of specific exercises for my leg and I feel tired but well when I finish. I do hope I can keep this up as it coincidently seems to help the shingles pain.

Have you tried traditional pain meds? Such as vicodin, percocet or an NSAID like ultracet (tramedol)? And how about that lidocaine patch?

 
Old 09-04-2008, 04:56 AM   #11
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Re: PHN following shingles

Hey! I didn't realize you had that injury! Yikes! So, I'm a little confused (could be my drugs...LOL) Did you have the accident BEFORE the shingles? I think I got mine from the stress of caring for my husband constantly for a yr + and it killed my immune system. They have tried me on several different meds. I am finally on the highest dose of neurontin and I use the patch too. I also take amitriptyline, buspar xanx...I can't believe I am not comotose!!! But, It controls the pain pretty well except for under my are and the side of my breast. I can't seem to get that spot pain free. Can't wear a patch there cause it doesn't stay on. I am wondering if a steroid would help. I think I am going to call my doc from Illinois to she what she has to say...never know. I hope you day goes well. Oh, and I am going to see how a little light exercise goes. I can't wear a bra yet so I am not sure. Take Care.
Nancy

 
Old 09-05-2008, 08:15 PM   #12
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Re: PHN following shingles

Good luck with your try at exercise. I heard a suggestion about using the lido pads. It was suggested that you use scissors to round the four corners which will keep them from lifting off on the edges. You might try it - also there is that "paper" tape that has an ease of removal, found with the first aid supplies at the pharmacy. You might be able use it to put the patches in other places.

I came down with the shingles the second week after I fell. I felt like I was working on a kidney stone for two days, but discovered the rash the next day and was diagnosed within those first 72 hours that that you need to be treated with anti viral drugs. There's no doubt that the shingles were a direct result of the pain and difficulty of the injury from the fall.

Do you have good and bad days? Or good and bad AM's and PM's? I often have a couple of bad days following a good day. I had PT this morning and was just worn out the entire rest of the day. My hubby is still doing all the shopping and most of the cooking. I can help with the laundry a little and kitchen clean up, but most of my time is spent lying down watching TV or reading. Fortunately our kids are grown and on their on so it's just the two of us and our adorable, but aging toy poodle.

Keep in touch,
JA

 
Old 09-05-2008, 10:39 PM   #13
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Re: PHN following shingles

Hi!
Glad you are feeling a little better. Yes, I have good days and bad days. The good days go too fast and the bad days seem like weeks. Yesterday I was itching horribly all over my left side. It was driving me crazy. I took extra benedryl and it didn't do a thing. I took a bath in oatmeal powder and that did nothing either. I was debating if I should go to the ER, Changed my mind and tried an anti itch cream. No help so I washed it off and tried a benedryl cream. No luck. Washed it off and put on a cteam called mometasone furoate usp. It actually gave me some relief, so I took a xanx and went to bed around midnight. Slept till 11:30 this morning. All itching was gone. Took more meds and took a 4 hr sleep on the couch. Called Petal Medical Clinic this afternoon too if they were taking new patients. She had the file sent over from the other dr (yikes) and then called me after the dr in Petal had read them and said that he would take me as a new patient. Can't get in til Tuesay afternoon, but I really want a second opinion to see if I am treated with the right meds.
Sorry to dray on and one. Will let you know what happens.
Take care. Nancy

 
Old 09-06-2008, 09:50 AM   #14
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Re: PHN following shingles

Do you have good insurance? I haven't tried to see another dr. but perhaps I could. I'm fortunate that I don't have the itching. I'd be raw. But the neverending ache in my side gets me down. Found any decent distractions? Sometimes a very hot bath works for me; but maybe not for your itching. Hope Tuesday brings you some new choices. Good Luck.

 
Old 09-07-2008, 02:01 AM   #15
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Re: PHN following shingles

Hi,

I just found this site tonight around 4:00 an EST. I have been looking for someone that also had or has Shingles/PHN. I got shingles in 2005 the first time and again in 2007. They were on my face, head, eye and ear. I have not been able to work in 19 months. The pain is so bad. But you know all about that. I'm taken everything for the pain. I'm now on morphine 60 mg 3 times a day, morphine 30 mg 3 times a day ( this is used for breakthrough pain), lyrica,cymbalta, nortriptyline 50mg 3 times a day and 13 other RX's. The PHN has cause me to loss 43 % of my balance in my left side. I have to walk with a walker now. I have been going to PT for over 3 month to help me learn to use the right side of my brain to get by balance back and walk better. I can't stand for anything to touch my head or face. The pain is just so bad. It is so hard for me to wash my hair or face. The wind just about kills me when I go out side. I have to keep something over the left side of my head and face. I hope you have a better night tonigh and feel better soon. I will be thinking of you all.

 
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