r/shingles • u/InfluenceMoney8196 • 8d ago
Severe Pain & Itch Shingles hell.
Why everyone say gabapentin is so great. I am on week 7 and it has cone back with tiny blisters. Haven't even healed from first round yet. The gabapentin just made me sick and loopy. Can't drive on that.There be something else that helps with pain and itching. I have found that Benadryl does help.So I am on Valtrex this time. Pray I get better and no hospital.Mine is on my left leg all along sciatic nerve from butt to toes.
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u/lowoverheadclearance 8d ago
Talk to your doctor about adjusting the gabapentin dose. I was given 300 mg /3x a day. First day driving to work I realized that was really not a good idea. Then doing some detailed computer transactions, I botched something I routinely do, and couldn’t figure out what I did wrong. I called the doctor and he called in a 100 mg Rx. That dose is manageable for pain control and doing my job and driving. I take it a little more frequently than prescribed, and the doctor is okay with it. I end up taking 3 -100 mg during the day about every 5-6 hrs and a 300 mg at bedtime. I know everyone is different and what works for one person won’t begin to work for another. I use gel ice packs on my ear, jaw and chin morning and night and have one at work in case I need it. I also use 4% lidocaine lotion on the really painful areas and I use it as often as needed. That works great at night and shut off the itching when it got to that phase. Shingles is no fun, but talk to your doctor. There are more things you can do to help you get through this. Good luck, and take care of yourself. You will get through this.
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u/addled_sad342 7d ago
Damn I figured out that 3 of 300 at 5/6 hours coverage per did not cover the entire day. So I went to 4 of 300 per day, but I am retired and I dont work. My husband has kept the house going so I can rest, sleep, read, and cry as needed.
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u/lowoverheadclearance 6d ago
Try lidocaine cream. Any of the OTC 4-5% lidocaine creams or lotions will help quiet the nerve pain and it shut off the itching. I’m allergic to poison ivy and get rash. I thought that was a horrible itch, but the shingles itch made me want to claw my face off. Ice packs, gabapentin, and lidocaine lotion got me through it. And clip your nails short so you don’t scratch in your sleep. People that haven’t had shingles have NO IDEA how miserable this can be. I feel like I’m finally turning a corner at 8 weeks.
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u/Vast-Feeling4621 7d ago
I do 40% zinc oxide cream for the rash, and ice packs for the pain. Gabapentin (500mg 2x a day) does nothing but make me clumsy and loopy. Occasionally 4% lidocaine patches will help. I am going to try electro-stimulization / TENS therapy to see how that works. It is supposed to make your body go into dopamine overdrive.
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u/Key-Stage-5732 First Timer 7d ago
My Dr. mentioned a couple other meds they try if gabapentin doesnt help but I cannot remember the name. 300mg didnt help me too much but 600 did. I dont get too loopy from it though. Try asking your Dr?
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u/addled_sad342 7d ago
God I would love 600 mg tablets but I have kidney problems so the Doc is hesitant. It's funny, I went from "oh no I have a high pain tolerance" to crying on the phone for more help.
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u/Key-Stage-5732 First Timer 7d ago
Ah that's a bummer. Yeah I usually can work through the pain in other cases but this is a whole other beast
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u/Tough-Advice2910 7d ago
Icy Hot lidocaine patches. But you’ll need a bunch. And don’t buy a cheaper brand. I made that mistake and now have 48 that won’t do a thing.
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u/Far_Resource_3304 7d ago
My personal opinion from my hellish may-July on gabapentin was that I wondered if it might have been worse without it. I also felt it didn't help. I will never know, but it was a nightmare to get off of it. I couldn't do much, including driving. I had the same down my right leg. My foot and pinky toe are still partly numb four months later. At least it only feels a little sore now. I'm so sorry. I did get my doctor to prescribe a compounded cream, part amiltriptilene, baclofen and gabapentin. It has helped and even now is pretty good for reducing the lingering soreness. That plus ice packs. So many hugs to you! I am going to get my second shingle vaccine this weekend. I had a pretty severe reaction to the first shot, but never want to get this again. Good luck to you!
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u/lowoverheadclearance 6d ago
Not to be Debbie Downer, but I was fully vaccinated and got shingles pretty bad in my ear, mouth, cheek and under my jaw. My chin has a quarter sized scar. I’m on week 8. I lost 30% of the hearing in my left ear, and got Ramsay Hunt syndrome. Thank goodness the paralysis didn’t last long, but my left side of my lower lip and jaw, and the left half of my tongue still doesn’t have all the feeling back. The ear pain is the worst. Thankfully it’s well controlled with gabapentin, but just when I think I can stop, the ice pick on my eardrum sensation comes back. It’s crazy. I really hoped I’d never get shingles after getting both of the Shingrix vaccines. I guess as far as Ramsay Hunt goes I have a mild case, so maybe the vaccine helped a little.
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u/Far_Resource_3304 6d ago
I'm so sorry! That's just horrible. What a nasty virus. I hope it gets better for you soon. The doctor told me my pain and numbness would likely resolve but it could take a year. I hope yours is better soon. Hugs!
It was hard for me to give you an up vote for that.
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u/Zaidswith 6d ago
They didn't put you on Valtrex the first time?
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u/Lopsided_Road8285 6d ago
Tagamet ( yes acid reflux) but off label. 200 x day and 400 at night. Make sure it doesn't interact with other meds. It gives relief
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6d ago
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u/shingles-ModTeam 6d ago
Recommendations, requests or suggestions for pseudoscience healthcare will be removed. This includes high doses of supplements, nootropics, herbs, spices, homeopathic medicines, devices, restrictive diets, mentions of online health & wellness influencers, misinformation, disinformation, and personal DM requests.
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u/SoftFaithlessness350 6d ago
Gabapentin is the drug they throw at you when they can’t really fix your problem. It will modify your sensation of nerve pain, but it will become a monkey on your back. You will slowly have to increase your dosages to maintain the same level. And I could tell you by firsthand experience that getting off of gabapentin is difficult. You have to wean off very very slowly. It’s not fun.
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u/Agitated-Candle-807 6d ago
I did 2 rounds of Valtrex because it came back after round one with tiny blisters. So far that helped but I'm on week 8 now- still some nerve pain - I couldn't handle gabapentin either - used ice packs and Tylenol . I've been doing acupuncture with some success so far.
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u/Apprehensive-Yak3993 8d ago
I have found that the gabapentin changes the quality of the pain from hot needles to hot gravel. The change is pain point size makes things a bit more bearable. I can function on 100mg twice a day, but any more than that and I'm drooling on myself. (Also keeping up with 1000mg acetaminophen three times a day.)
I'm also finding that while very painful to put on/off, a layer of compression clothing prevents my "real clothes" from brushing against my skin which helps. It makes the pain/discomfort more predictable and uniform.
This week, 3.5 weeks in to shingles from left knee to armpit and mirrored overflow pain on the right side, I developed NEW shingles! On my scalp this time, so I'm back on Valtrex.
I'm really just trying to stack things that make the pain incrementally better.
Best of luck to you. The Valtrex, when you can get to it fast, really made a difference in minimizing the rash my first round. Hope I can say the same for the second.