Disseminating Shingles? Really?

Posted , 8 users are following.

Male, 61, healthy, bilateral knee replacements in last year, rehab going well, four months after my second TKA, awoke one morning with severe eye pain. Eye was photosensitive, and lid was slightly swollen. Eye was so sensitive upon movement I went to the walk-in clinic within an hour. 

Doctor instantly recognized a rash over my eyebrow and some along my scalp. SHINGLES!

Started Valtrex and Tylenol, had severe headaches and eye pain for four days and increasing boils/blisters along D1 line, severe nausea, saw opthomoligist. Day 5 I see new red blotches along my flank and around onto my back (opposite side as my head) and my head pain is spreading down my cheek, into and around my ear, and into my jaw. Saw another pair of Drs on day 6 who confirmed I have Shingles in at least 4 dermatones, put me on another week of Valtrex along with Gabapentin to ease the never ending pain.

I have been taking all my leftover Percocet (10 a day) from my knee surgeries, yet still stay in a quiet dark room with a wet towel on my head to survive.

I thought knee replacement was tough. Huh!

Pete156

1 like, 9 replies

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9 Replies

  • Posted

    Yep, Shingles in the worst. Gabapentin I did not get on with; my (UK) Doc likes Amitriptyline .

    I had it on the right forehead, around the eye, cheek , upper right jaw, partial lower right lip. Agree it is the nastiest infection I have ever had .....Colin W, England.

     

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  • Posted

    Yes, these were all my symptoms....(heavy sigh)
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  • Posted

    Dear Pete,

    I am so sorry you are going through this. Please go to the hospital and get on round the clock Opioids for pain relief and IV Antivirals. There is no need to suffer like this and the Physicians are terrible to allow you to suffer.

    You need to be placed on Opioids in the hospital and Gabapentin, titrating the dose up.

    ***Also, you need to see an Ophthalmologist STAT to see if your eye is still involved.

    If four dermatomal are involved, you have disseminated Herpes Zoster-Shingles, and need to be on a longer course of Antivirals. They should have prescribed you Percocet to go home when you had Shingles the first time.

    Best Wishes

    Merry Juliana

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  • Posted

    Hello Pete, I am so sorry to hear of your suffering. Shingles is the virus from hell - as you well know.

    I cannot top the Information Merry has given you, but I will say please listen to it as she knows what she is talking about - she has advised, supported and helped so many of us on this site, and is a fellow sufferer so is speaking from personal experience too.

    My advice to you is to concentrate on getting your Immune System strong again - this virus knocks hell out of it and to help speed your recovery, and prevent any further outbreaks, you have to fight back my friend - I know when you are in so much pain and discomfort all you want to do is roll over, but you must fight back, and help your body do so as much as you can. Eat as well and as healthily as you can - take vitamin supplements, Omega 3, Vit D, B12, Garlic and L lysine and plenty of Vit C - drink plenty of water, and then drink more - and rest and sleep as much as possible Pete.

    I hope you start to feel some relief soon friend, I really do.

    I, and everyone on this site, either has been, or still is, where you are - you are not alone with your suffering - we are all here for you, and will support you as much as possible.

    Here's to a speedy recovery.

    Babs x

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    • Posted

      Hi Pete,

      I think Merry has your best interests. at heart - being a retired health professional she would tend to err to the extreme knowing that pain relief and Anti virals are the way forward.

      The pain you describe sounds so bad , and the right drugs would put things on a more even keel for you that

      would be far easier to deal with. If its bad enough then a trip to A&E and access to the meds you need is the way to go. If not then a call back to your Dr is in order - whichever you decide upon please keep in touch and let us know how your doing.

      All the best Pete.

      Babs x

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    • Posted

      Hi Pete,

      If you are not writhing in agony from the shingles, are able to function well, and the rash has not spread all over your body, there is no need to be hospitalized.

      However, if you have gone through your supply of Percocet and your Physician refuses to give you more, and you continue to wonder how the faintest breeze can set off the excruciating paroxysms of pain lasting half an hour or more, yes, you need hospitalization for pain control. Also, if the rash has continued to spread beyond the four dermatomes, yes you need to be on IV Acyclovir. By definition, you have desseminated Herpes Zoster-Shingles. The standard of care is to hospitalize patients with desseminated Herpes Zoster or with uncontrollable pain.

      By having Herpes Zoster-Shingles on the face, your risk is higher for Post Herpetic Neuralgia PHN and/or recurrent Herpes Zoster-Shingles. As your age increases, your risk for PHN increases. The more poorly controlled your pain is, the higher the risk is. As you have desseminated Herpes Zoster-Shingles, you have a much higher risk. The rash and pain need excellent control.

      If you have hardly any pain, Percocet supply is great, and rash is getting better, and everything is under control... no fatigue or exhaustion, then no need to worry, but...

      often the second week the pain can intensify.

      I doubt that the pain will resolve completely in one week.

      Sorry that I alarmed you. You did sound as if you were having a difficult time with the pain. Most physicians do not offer Opioids for shingles anymore, enen though it is one of the most painful afflictions of mankind.

      Best Wishes

      Merry Juliana

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  • Posted

    WOW!!!  And I thought I had it bad!!!...felt like I've been just surviving too!  Guess there is all levels of surviving when one gets shingles and the Aftermath of Shingles too!

    I found that ice packs help a lot.  Bean bags (filled with rice) put in freezer.  There are large ones one can buy in the shape for shoulders, head, etc.  Sure made a BIG difference for me!

    Also others have recommended a Menthol spray, because it makes your skin feel cooler, numbing effect, and lasts for hours.  I think Biofreeze was the name of one... a spray can.

    Hope you NOT feeling sooooooo awful soon!!!!!

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  • Posted

    Pete here.

    Im just ending my third week of unbearable pain all over the right side of my head Went back to see the doctor today to figure why I'm not getting relief.

    He recommended I double my Gabapentin dose immediately. Turns out I was only prescribed half the therapeutic dose for my condition.  No wonder I did not see any relief. He also doubled the strength of my narcotic. He also recommended Diclofenac to help control pain. 

    Hoping for relief soon,

    Pete

     

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