The first time I had shingles it woke me up in the middle of the night.

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The pain started in my back on the right side near my spine, mid way down, went through my chest and around my side to the front of my body. I thought I was having a Heart attack. The pain was unbearable. So I go to the hospital and they seen a small area of the blisters on my back. Shortly after being at the hospital the pain went up on both sides of my neck , face and head. They say it cant affect both sides of your body, but let me tell you that is not true in my case. This was stress related. They gave me steriod shot and meds. I had severe headaches after that happened. Since then I have had shingles on my left side upper back close to the shoulder, only the rash was not bad, only the pain was bad. But the rash/blisters was not real bad the first time but the nerve damage was terrible and I still have pain in both places on my back. My doctor put me on gabapentin (that is spelled wrong) but Im allergic to that so could not take it. So now I take Topamax 25mg twice daily, its wonderful. I do get a headache every now and then but not on a daily basis. Also I kept having so much pain on my right side where the first outbreak was so my dr put me on Acyclovir 400mg once daily. This has reduced the pain so much. Also I have chronic pain from a car wreck over 20 yrs ago and about 5 wks ago my pain medicine was changed. I wont go into all the details but what im on now is not working so I have been in so much pain, that my body has been stressed out to the max. Ive been having pain in both places where my shingle were and now the deep pain in shoulder and found a few blisters on both areas. the pain in my shoulder did not last long so not sure it was shingles but it sure did feel like it. If i had not been taking the Acyclovir every day for as long as i have been taking it, I don't even want to think what this outbreak would have been like.  Hope this info helps someone. I know how frustrating it can be when you have a doctor that does not listen to you, or just not know what to do. We know our bodies better than they do when it comes to certain things. Not everything, but some things. So for those of you that keep getting shingles ask your doctor about putting you on the Acyclovir once daily just to see if it will help. Its helped me so much.  Good luck

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  • Posted

    Hi Donna like most if us shingles sufferers we know how much pain you are in andwe believe you _but sad to say those who have not had it tend to disbelieve including the doctors.as you will have read we all get it in different places and varying rashes but the phn pain goes on after a long time .I myself got shingles on Xmas day with strange pain and sensitivity over my left shoulder blade .rash began day after and spread  round my left side to my  left breast area .was given antivirals but did not seem to hold back the rash.I was given amytryptiline to help but only gave me .little respite for four hours .I was offered opiates but refused as had to see to my family and needed to be compas mentas to look after them .so battled on with just paracetamol .but did not really help.went on for three months till finally gone.and now doctor wants me to consider shingles vaccine as we as you know can get it again.I am very scared of getting it again but also scared of the vaccine as my immune system is depleted by the steroid predniselone which I take for PMR and there is a possilbillity the vaccine could give it me. having said all this I wondered if you had been offered the vaccine too ,and also if anyone else reading this has been given it after shingles to prevent further attacks-did it work or not.by the way I am 70 and did has shingles once when I was 14 years old too.any replies gracefully received and truly wish and hope your pain will soon subside hugs to all .
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    • Posted

      Hello jean b  Yes I did have the shingles vaccine a yr or 2 after my first breakout. It did not bother me, I was in my mid to late 40;s . I'm 52 now. I was doing ok on the Acyclovir that my dr put me on, once daily to help with the pain I still get especially when stressed. Im going to the clinic today because my body has been trying to have another breakout from all the stress i have been under this past 5 wks. My pain dr changed my pain meds, due to a car accident over 20 years ago. I had a car roll over me and crushed my pelvis and fractured hip. The medicine he put me on did not help my pain and that has where all this latest stress has come from. But I still believe that the 400mg Acyclovir has kept the shingles from being so bad this time.  But after the shingles vaccine I did get the shingle again, but not at the time I recieved the vaccine.  I wish you luck. People who has not had this just cannot understand the pain that comes with it and stays with you.
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    • Posted

      I have been feeling ill for 3 weeks now, firstly I had excruciating pain at the back of my head, for a week, then after that I had a horrible stinging feeling in my forehead , felt like i had stinging nettles all over it, and a prickly feeling, I looked online and it sounded like shingles, especially as i noticed 2 red areas later on that eveningm, it was sensitive to touch, I went to the dr the following morning and sure enough, was diagnosed' Unfortunatelty it is the worst kind, affecting my face and right eys, I have had hospital appointments, A and E, eye specialists and seen my own dr many times in the last 2 weeks, it is the most painful thin I have ever experienced,( and i have had two children and not easy births!!) Nobody could begin to know how painful this is, and unbearable at times, I have the neuralgia head pain every day too., I am on strong painkillers, and I did get the aciclovir early so luckily my eyesight should be ok, that was so worrying which is why i am having weekly appointments ay the eye clinic, i can't praise them enough as they are so kind and we are lucky to have the NHS!!

       

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    • Posted

      I wish yiu luck. If you start having bad headaches ask your dr about Topamax. Not sure it will help in your case. My outbreak was on my back but the nerve damage went ut into my neck,face and head, while I was at the hospital that night. Kept having severe headaches after that. The Topamax has helped a lot with my headaches. Can't inagine taking care of young children with this. best wishees and prayers
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  • Posted

    Donna,

    I am so sorry for your suffering. I am on Topamax 100mg 2x per day for recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years in my right ear. Your post stated you were on 25 mg, twice daily, which is a low dose. Hopefully, you have a physician with whom you can work regarding your medications. Many are abysmally ignorant regarding this disease.

    Best Wishes

    Merry Juliana

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    • Posted

      Merry

      I may have not explained myself very well. The topamaz has helped my headaches from the nerve dmage caused from the first shingles outbreak. When I got  the shingle gain even after the vaccine and kept having pain in the areas of where the breakout was which was on areas on my back,, my dr put me on 400mg Acyclovir, which helpled a great deal. But the past 5 weeks my pain management dr that treat me for chronic pain from a car accident 20 yrs ago changed my meds and the new med is not helping me. so i have been in pain from that and under so much stress that it has caused me another shingles outbreak and other problems. I was doing well with the meds for the shingles pain until my pain management dr changed everything. But the Acyclovir has worked well in the past just not this time with what im going through with the pain from the wreck i was in 20 yrs ago. and my pain management dr would not give me any help at all. he assued it was withdrawal symptoms. so i am trying to get in to a different pain dr to manage that. 

      ps    In my experince where the breakout is, that is where I have had the most severe pain.

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