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Hello everyone. After 8 long years of shingles, i was left with Trigeminal Neuralgia, TN. I was already on medication for the Post Herpetic Neuralgia, PHN in my right leg, from shingles outbreaks on my right hip but i also had ophthalmic shingles (eye) and was left with pain that no medication gave relief for. The same meds i used for my leg pain, did nothing for the pain i had on my face, nose, ear, eye, head and teeth. I get electric shocks that bounce around like lightening in a bottle. At its worst, i often can't eat or talk because when my teeth touched, it is like biting into an electric fence or getting a cattle prod to my head or face bones. Naturally, i have been hospitalized many times for this pain. All the docs can do is sedate me for several days at admission, to stop my screaming and allow my body to rest.
In the beginning, i was being treated for PHN and docs were baffled why the meds gave relief from my leg but the pain in my head was like a bee hive turned loose inside. Needless to say, by my third hospital admission, the staff could hear me from the parking lot and my wait time was zero. I can't recall how many times i was injected while still sitting in the wheelchair. Yes, i was THAT loud.
Hospital doctors stayed baffled but between hospital stays, i began to research myself and noticed that most PHN sufferers were talking about ice packs and cold compresses, to ease their pain, while i was using heating pads, heated rice socks and scalding hot wash cloths to get any relief from the pain in my head. Anything cold lit me up like a really bad Christmas. Digging deeper, my doctor diagnosed me with TN.
At home, we pretty much have the routine down, with heating pads already in place, rice socks being rushed to the microwave and all faucets wide open in the bathroom, to get the hot water flowing faster. Along with this, there's the numbing ear drops, Anbesol on Q-tips and Amitriptyline and Clonazepam. I do have Vicodin, Dilaudid and Fentanyl but stopped taking any of them because it does nothing for the TN. in addition to my wonderful husband and loving son, who are my beautiful medical pit crew at home, i have been blessed to have a wonderful doctor, who truly cares about his patients and takes pain seriously and with compassion. After 8 years and so many hospital admissions, i can now be sedated at home, with my doctor available by cell phone, if needed. So, even though i have Trigeminal Neuralgia, i am still truly blessed.
I have recently begun a new regimen, under doctors supervision and fingers crossed that it keeps working and i will share it on here, if it succeeds. I do not want to have surgery, as i fear the worst would result and i take as little meds as i can. So, any tips would be so much appreciated.
I already read someone say on here that "puffing their cheeks" helps and i've been doing this, while typing this post, the whole time. Yes, it DOES work. I wish i knew where i read this great tip, so i could thank them. Thank you...whoever you are. Any other at home tips would be greatly appreciated.
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