I just found out that the latest layer of unbearable pain is caused by yet another bout of shingles all over my scalp and head. Im hoping to find some practical info and share some things that have worked a bit for me, especially now that PHN is something specific that I can focus on in getting better. It has been a numbing four (!!!) years of life changing pain, but I've become increasingly aware that the cause of my trigeminal (and occipital) neuralgia quite possibly may stem from a severe case of shingles that I came down with while I was still trying to recover from a rough bought with pneumonia. However, Post Herpetic Neuralgia isn't something I've seen discussed much, if at all, so I'm still walking in the dark at this point. I would love to hear from anyone who has had the added fun of dealing with shingles on top (literally) of their other neuralgia related health and wellness challenges. I don't know how common of an issue it is, although it seems to me that the risk might be significant considering the overwhelming amount of stress (and the general toll on one's well being) involved in when dealing with the pain and social issues of these disorders. For me, the stress and dispair I've experienced at times outweighs even the worst pain, compounding the weakening effects that make it nearly impossible to advocate for myself or focus on healing. May I offer advice to anyone who is faced with Post Herpetic pain (or a current outbreak of shingles) ....Frozen corn or peas on your head, covered with a beanie to keep it in place is a lifesaver, especially if you have the constant pain similar to brain freeze. Oddly brain freeze on brain freeze cuts the edge a bit. I can't say enough about the power of prayer, music and distraction...although it may be a source of critisizm from people around you that think you should be handling your time differently if you feel "well enough" to knit, paint, draw, or whatever helps keep your mind off the pain. I have found Tramidol (Ultram) for the nerve pain, Ibuprofen 800 for inflamation, Flexeril as a muscle relaxer, and Norco for breakthru pain is a combo that works for me without feeling drugged out. I had an occipital nerve block to gauge possibility of trigeminal procedure, but that is not an option at this point for me. One area that has been the biggest concern of my experience and a source of great dispair, grief and sadness to me (and my three kids) is the hopelessness and loss of literally everything while having to wait out (fight, etc) for social security income as an only source of income. Having worked my whole life, I was not aware that State Disability would last only a year, and that SSI would take up to several years. I was also not aware that being denied on first try actually means "NO - but try again". I know God has a plan for me, and Im grateful for the great life I did have, but i know Im not the only one who is far from home, living in the shadows of their once perfect life until better comes in the form of long awaited benefits much too late to save anything including their dignity.If that day comes I hope to help others while in that gap. Especially when you are fighting to get thru every day, even a small space to heal (and continue in treasured role of mommy, etc) can mean the difference needed to remain positive and make it thru. Sorry for the rant...I just feel bad for anyone else having to "figure it out" with the pain of shingles on top of it.
TAKE CARE, AND THANK YOU FOR CARING AND SHARING!...Melinda