In need of help please!

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Hello everyone! Im in need of advice with these shingles. I had my first outbreak last year December 2016. I had rash on my forehead,scalp,and right eye..which had swollen up. I went to the my family doctor and she said it could be a allergic reaction..she gave me some meds for allergic reaction. Maybe 2 days later I went to the Emergency room because my face was red and itchy/burning. They diagnosed me with Shingles..gave me a prescription for Antivirals..and told me to go to eye doctor asap. I went to eye dr. He gave eye drops after doing tests..all was well. Long story short: Since then I have had 3 shingles outbreaks along with pain all over my body.(Diagnosed with PHN due to the late initial diagnosis) I have been given Amitriptylin and Valacyclovir..which help..but not to well with this body pain. I can tell my Dr is not to familiar with any of this.. Im doing more talking and self diagnosing telling her what I read on google..lol! Im at my whit's end with my dr! Im needing better help with this because its really becoming nerve wreaking and depressing for me! As of today I am just getting over a outbreak,but this time I think it was in my scalp! I had some antivirals left over so I took those.. I have to make a appointment to go see the dr..but i dont want to cause I feel like Im going for nothing. Can you tell me if there is a specialist doctor for this? I've been reading alot of these post and have gotten lots of great information like the diet,the medications you guys are taking etc.. I will be trying this and I plan on showing my dr. This thread.. Yall are experiencing the exact pain and symptoms I am..so maybe she can see what yall are being prescribed. With PHN. Is there anything I can do at home for the pain. .besides meds? Any info yall can give I appreciate it..thank you!

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  • Posted

    Hi Lovinlife

    I also have shingles in the abdomen area & It’s been 6 weeks now.  My Dr prescribed Valtrex for antiviral  for 10 days only & Neurontin  600mg  for pain.  At first I was taking Norco for pain but after 10 days I got switched over to Neurontin which seemed to work better.   From the scale of 1-10, my pain now is at 2.  I Did not have a lot of rashes, just excruciated stabbing pain, burning sensation, itching and numbness.  Although  now the pain is less, the rashes seemed to get worts & move all over my body, back to front down the leg and now on my front waist.  I use coconut oil & it seems to help with the itching.  

    As for doctor, most GP don’t know how to treat shingles.  I’m thinking of seeing a neurologist in the near future if my situation doesn’t improve.  

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  • Posted

    LL17 sorry to hear it's been so long you've had to suffer through. it's only been 3 months for me but i had enough of my family's doctor's inability to treat my pain. i went through 2 back to back outbreaks of head/face shingles on the left side-pure misery. i am absolutely convinced that his refusal to put me on pain killers led to my PHN (as diagnosed by a Pain Management Dr I now see). regular Dr's dismiss shingles and their hands are tied by all the new opiate laws here in the US. i tried Neurontin-no pain relief. then he put me on Lyrica-what a joke that medicine is! no pain relief and made me psychotic. his answer to the Lyrica and the psychological changes it put me through? take less Lyrica! No! thanks to the Pain Management Dr. I am now on Tegretol-works somewhat, Norco-works very well to put the pain in the background so i can do things....like sleep for more than an hour at a time! and a very tiny dose of Methoadone-to treat the nerve pain long term. he also got me the  prescription LidoDerm pain patches. I am scheduled for nerve block shots in 9 days and a 2nd one a week after. family doctors are ill equipped to deal with the shingles pain and the Feds have stifled any effort at pain relief due to their mismanagement of the 'opioid crisis' for any patient truly needing pain relief. go to a Pain Management specialist. also-if you had antivirals left over then you didn't take them properly which may be why the shingles reoccurred. but i went through 3 doses back to back before they worked for me but i took them all as prescribed and for the length prescribed.

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    • Posted

      This is interesting. So many similarities. I am scheduled for a nerve blocker Wed. Had nerve pain for 10 weeks. And i took gabapentin for 8 weeks 1600 mil. And i was a zombie horrible barelt could talk and function. Forgot everything..horrible! So now i switched to Lyrica. We will see
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    • Posted

      marcia budde be careful on Lyrica. have someone close to you monitor you moods and outlook. Lyrica did nothing for my pain and had me talking irrationally-thank God my room mate was around and flushed the remaining Lyrica I had-i was talking crazy talk. my Pain Management Dr. said he wouldn't prescribe Lyrica to a dog-that it's the biggest scam be foisted by Pfizer on the US consumer today. Check the true stats-Lyrica is only effective on 1 in 9 patients for pain relief. try Tegratol...it doesn't mess with your psyche and it doesn't take 2 or 4 or 6 weeks to work (like gabapentin or Lyrica say-just to keep you buying the drugs). you'll know within 4 to 5 days if it's effective and gives you any relief. good luck with the nerve blocker! i've got mine scheduled for the 30th then the 6th.

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  • Posted

    Hi,  I can only report on my experience, which like yours is negative. I have had facial/eye shingles since September 2017. Luckily I got a eye test early, with it all OK. I was probably a day or two late with the Acyclovir anti-viral, but other than that it all went to plan, apart from needing an anti-biotic early on to counter a low level infection of the shingles scabs. And no, I had not picked at them. However, although the scabs healed fine, I still have a pale pink area on my cheek and forehead, which is tender to touch and medium level pain - mainly `tight' skin feeling, with the odd nerve twitch. I did have the `Taser' pain for about a week - excruciating. PHN was reluctantly diagnosed, but Amitripylene had no effect; I could not detect I was taking it. Gabapentin was prescribed, but the 500 mg a day level, I started to get a rise in my blood pressure, and heart rate - not nice. I am currently titrating down, off my own bat, as apparently you have to go gradually - I don't fancy a seizure ! So right now I am just relying on CoCodamol 30/500 painkillers, taking six tablets a day. I have recently had a Shingles `jab' to try to prevent any re-occurrence. I am a 70 year old male in England. YMMV. All the best, Colin.

     

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    • Posted

      This is and interesting read for me i was on 1600 mil. Of gabapentin a day and my blood pressure kept dropping and dropping last report was 80 over 50. Im on week 10 of horrible nerve pain. They have scheduled me for a spinal nerve blocker. And switched me to lyrica. Guess you have to find the right cocktail
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    • Posted

      I had a kidney artery stent to `unblock' it last Autumn. That got my blood pressure down from circa 190/95 to 150/80. Renal Consultant was pleased and said aim for 140 for systolic. 7 weeks later I got Shingles :-( and don't really know where I am re Blood Pressure stability. Either that or my stent is playing up. Shingles seems to affect everyone differently. Aaargh.

      Colin, England

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  • Posted

    Hi there! So i am on week 10 with my shingles. Horrible nerve pain i went to er and doctor nobody helped. I had to call and ask for nerve pain help ect. So i found a pain management clinic and got in and they knew it all! They scheduled me for a spinal nerve blocker and has a plan for no reoccurance. Find a pain clinic and get in there. Good luck!
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  • Posted

    Dear Ll17, sorry to hear that you are suffering so much and that the doctors are limited in giving pain meds. So glad to see that Marcia weighed in, yes you should go to pain clinic.

    The one extra bit of advice when you have reoccurring shingles is to always have the antiviral medication on hand. The doctor finally gave me a prescription for the next 6 months that way I can take it for a week every month until I'm able to get the vaccine. ( have to be shingle free for a year) or as close to it as possible. Also take lysine daily

    I'm just at the end of another breakout and I think the extra vitamin B is helping. I do take tramodol for pain but as I'm in Canada I'm guessing that is considered an opiate. Also I'm going to try a tea you make from mushrooms (you boil and steep it) suppose to help immune system. My sister takes it daily for her cancer and it's really helping. In factvher oncologist also recommends it. Most heath food stores carry it. That's going to be my next thing to try. I'm determined to beat this thing! Good luck and I hope you get some relief soon. Gayleen

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    • Posted

      I had shingles start in the last week of September 2017 - no rash now, but have PHN :-(

      The Practice Nurse jabbed me up with the anti Shingles vaccine in mid Jan, 2018. As I understand it the superior `new' one ( Shingrix ?) is not yet available in the UK, at least on the NHS. Given the state of the NHS's £ coffers, I wonder if/when that will ever happen.

      Incidentally the nurse had facial shingles herself last summer, but seems to have recovered easily and completely. Lucky Lady.

      YMMV - at least between different National health care systems.

      Colin, Hertfordshire, England

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    • Posted

      I am `extending' my own post ..... just a bit more info really. I think I read somewhere on the Web that although anti virals help in the very early phase, that they do not influence whether you go on to get PHN. ie, if you are `late' with anti virals, according to this view, it should not matter re PHN.  There so many views out there, I wonder if anyone else has seen info like this ? Two of my local General Prctitioner Docs were quite united that extending the anti virals longer would be of no benefit to me :-(  So many Docs, so many views ! regards to all, Colin, England.

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    • Posted

      Hi Colin.  I was told the antivirals that are given for the first week are to prevent the shingles rash from spreading. After that they are not needed to take.  The PHN is caused from not getting proper pain control in the beginning of the onset. 
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    • Posted

      Hello Colin,

      Yes I agree with you it's not how long you take the antiviral but when you have reoccurring shingles having a prescription on hand all the time gives you an advantage to control the outbreak on the onset which is the most important part. Also this new doctor said to take a few when ever you feel like you might have an out breakout. He said they won't hurt your body and you may prevent further outbreaks. I'm seeing a specialist soon about another matter and will also ask his advice as it's at a pain clinic. Thanks for all your insight. G

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    • Posted

      Hi - I had pain control at the outset - CoCodamol 30/500 - ie 30 mg of Codeine, 500 mg of Paracetamol. Up to 8 tablets every 48 hours. I think in the USA Paracetamol is called something else. I hit those pretty hard, in those early days, but still got PHN. YMMV. regards, Colin, England. 

       

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    • Posted

      hi again folks. i wish Merry were around to clear up the use of anitvirals but they are to kill the virus...and all the symptoms. they have nothing to do with PHN control so if i gave that impression i apologize. what they do is counter attack the shingles virus and all it's symptoms, not just used for controlling the rash. the ER doc, the Ophthalmologist and my family Dr. all told me to take until finished as prescribed. This is a quote from the insert i received with my acyclovir "Continue to take this medication until the full prescribed amount is finished." i guess it's up to the prescribing Dr but i believe this just shows how ill-prepared most Drs are to treat the shingles properly. i was also told to call in if/when i could feel another attack coming on to get another prescription which i had to do twice more after my initial attack. Drs told me it was just like taking an antibacterial....take until finished to receive the best results. 1st Dr gave me a prescription for 500mg x 3 a day for 5 days-it failed to knock the virus down. after the reoccurrence the next prescription i received was 800mg x5 a day for 10 days as was the 3rd. now it's the PHN that's so debilitating...not the rash. the rash and the associated nerve pain are symptoms of shingles. PHN is the damage cause by the virus even after the virus, rash and symptoms are gone. 

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