Reoccurring shingles, Shingrix vaccine, cannot clear current shingles bout?

I am a 52 year old female who has a long history with shingles dating back to 2007 was the first bout that attacked the nerves in my right inner ear causing permanent damage to the 8th cranial nerve and PHN due to late diagnosis. Severe stabbing/shooting pain in my inner ear began 4 to 5 days prior to the few blisters I had appear on my right earlobe, right side of face and jawline. Once the blisters began a diagnosis was made, this bout lasted 3 months and took me nearly a year to fully recover and regain energy ect. Over the years I’ve had reoccurring bouts that vary in intensity and length. Valacyclovir has always been the anti viral that helps me through until the virus goes dormant again. I’ve suffered with PHN ever since the first episode. I’ve never had a lot of blisters with shingles, but extreme severe nerve pain. I believe its possible my shingles are primarily internal shingles.

Fast forward to what I’m dealing with now. I have been suffering with a horrible bout of shingles since the beginning of March 2023. Started valacyclovir as soon as onset, I only had enough for about 5 days, I requested a refill from my primary care and the refill wasn’t refilled for several days so I was completely out and shingles symptoms came on full force with blisters forming on my scalp as well as ear, for the first time shingles affected my right eye ( felt as though I had a sand spur in my eye)

Finally got the refill and started valacyclovir again, it takes several days to a couple of weeks depending on how bad it gets before getting starting on valacyclovir/anti viral to get these symptoms under control and clear the blisters. I took a 2 week course of valacyclovir and stopped, within 2 days shingles symptoms started back with horrible pain and “electric shocks in affected areas “ so I started Valacyclovir again and took a another 2 week course, stopped taking it and same results- shingles came back. This same cycle went on through April, each time I stopped taking the anti viral the symptoms came back. By the end of April I was feeling better finally, but was still taking valacyclovir, I finally felt as though I was getting over shingles but did not feel I was completely over the symptoms although I did not have any blisters. I do think valacyclovir was holding off any blisters and had the symptoms very suppressed at this point.

I saw my primary care again on May 3, 2023. At this appointment he insisted that I get the shingrix vaccine as he convinced me it was completely safe because I did not have the rash/ blisters. I told him I did not feel I was completely over the symptoms and was still taking valacyclovir and felt that was the only thing holding off shingles, I told him that I absolutely would not take the vaccine if it we’re going to hurt me or make things worse because I’ve already been suffering for months. His reply was this will not hurt you..it will help you. So, I let them give me the vaccine and I stopped taking valacyclovir. I now horribly regret this decision. Within 2 weeks after the vaccine I came down with the worst case of shingles I’ve ever had, with blister’s appearing on my earlobe, behind right ear, face/jawline, scalp and now my neck ( had never had them on my neck prior to the vaccine). I was so sick, my head and neck hurt worse than ever before. I had more nerve activity in my head than ever before with shingles it felt as though I had fireworks going off in my head, nerve pain shooting through my head, ear, eye and neck. Horrid nerve pain shooting through the right side of my upper chest, right breast and wrapping around my back to the thoracic area where I have a syrinx in my spinal cord. Needless to say, the second dose of shingrix did not happen and will not based on the results of the first vaccine. I have once again got these symptoms calmed down with valacyclovir but have had to fight to get refills because my primary is concerned about long term use of valacyclovir. I explained to him I have no choice, if I don’t take it shingles comes back full force and the location of my shingles can cause horrible consequences, hospitalization or worse.

To date, I am still battling shingles and cannot stop the anti viral without it coming back and making me horribly sick, I try to stop it after every couple of weeks of treatment hoping for no shingles symptoms and as of last week I still have to take them. The last time I stopped taking them I started fading fast with horrid headaches, fever,chills,nerve, muscle and joint pain, then came a singular large blister on the right side top of my scalp that hurt so bad it made my eyes hurt, and shooting nerve pain throughout my head.

I am awaiting a referral to an infectious disease doctor. I’ve had several tests done with my primary and they have not been able to find anything that is wrong with my immune system. I do have several health conditions but none that directly affect my immune system.

For anyone reading this that can help me with information/advice or can relate to my situation, please reply. I am certain that my body had not completely recovered from the shingles virus when I got the vaccine. What happens now? What can I do to help put shingles back to rest/dormant? I’m eating healthy, keeping stress down, getting plenty of rest, staying out of the sun and everything else I’ve learned over the years that generally helps me get past shingles. I’m beat down tired from this and can use all the help and advice I can get. Thank you all in advance.

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