Trigeminal Neuralgia from Shingles

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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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  • Posted

    Hello r.f., Yours sounds a horrendous story and I send all my best wishes (for what it's worth!). Just a couple of tips - when my TN has been at its worse, I make sure I take my medication at strict intervals so that there is a constant level in my blood - that helps to minimise any peaks and troughs. I even set an alarm on my smart phone so I don't forget. The other thing, completely non-invasive was a treatment my osteopath offered - it's called intra-oral inhibition technique of the lateral pterigoid muscle - might be worth a try it certainly seems to have helped me. Good luck, Heather

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    • Posted

      Hi Heather. Thank you for responding. Very kind of you. Yes, its been a long road. Past 8 years, i've had over 140 shingles outbreaks and i can recall back when i thought shingles pain was the worst pain on planet earth. I was correct in my thinking, until Trigeminal Neuralgia came. I'm so very sorry that you suffer from it too. Thank you for the tips. And also for the suggestion of this procedure. I have never heard of it but will surely Google it right after sending this response to you. After so many bouts of shingles, then PHN and now TN.....truthfully, i don't see lady luck on my side, so i'm a coward at this point about anything invasive. Thanks again for this. I will research it right now. I hope you have a wonderful and truly blessed day, friend.

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  • Posted

    I use a pain cream made at the compound pharmacy. It helps a lot. !image

    I found it on line and had Dr. write a script.

    Best of luck

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  • Posted

    Hello,

    My name is Steve and i'm so sorry for your pain. I am amazed at the doctors that have no idea what tn is. I will give you the very short version of my tn trip. It started with a tooth ache two root canals and several trips to the dentist with no relief. Then my dentist recommended a trip to my family doctor a prescription for opioid with zero help. The pain only someone that has tn can understand. it was so bad i couldn't eat, sleep, shave, talk, brush my teeth, comb my hair, touch my face or sleep under the sheet. i finally got to a neurologist that finally confirmed that i had tn. he tried several medications with little to no help. this went on for a while . i then changed doctors. He looked at all i had been taking and gave what he said is always the medication you start with. That medication is Carbamazepin after the second day my pain has gone. This has been a little over two years. I thank GOD every day for this miracle.

    Now i told you this so that you know their is others that hurt with you. Unless someone has tn they can't possibly understand what you are going through. You are so blessed to have a loving family that supports you. This medication may not help you and you may have already tried it. I have also been reading about the gamma knife procedure that they are having a lot of success with.

    Just know you are not alone. I have a daily prayer list and I will add you to my list and be praying for you daily for the next 9o days. I serve an awesome GOD that can take your pain away.

    So sorry for your pain,

    STEVE

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    • Posted

      Thank you for your very kind message, Steve. My name is Rhonda.

      Thank you for sharing your story. I am so truly sorry you suffer from TN but happy you have found relief. Your pain sounds very much like mine. It's nightmarish at times and often i have silently wondered if my heart would survive the pain. I am sorry you are hurting too, Steve.

      Yes, you are correct that no one can know or even comprehend the pain of TN and what it takes from you, unless they have felt it themselves. I can recall a time, at my lowest hour, when i even asked my husband to put me in a nursing home and raise our son in a normal life. Of course, he refused and we have fought this life battle together but truthfully, i feel guilt when i think about the possible sadness our future holds, if we can't find a cure for this dreadful condition. But yes, i am blessed to have my loving family.

      I am also truly blessed to have a wonderful doctor. It was a long road to find him though. Before finding my current doctor, i saw several others. They were specialist mostly, in the fields of Neurology, Internal Medicine and Infectious Disease. I have even spent time at Mayo, right before finding the doctor i see now. The doctors at Mayo in Jacksonville Florida did not appear to know much more than normal physicians and seemed more interested in solving a puzzle than making me well. You see, i was only 42 years old, eight years ago, when i first developed shingles. This delayed my diagnosis because typically people age 60+ get shingles. Also, due to my age, i was too young for the original shingles vaccine, Zostavax. The delay getting the vaccine, caused me to have shingles many times and this led to damage to my fifth cranial nerve, that is now Trigeminal Neuralgia. To combat the shingles, in the meantime, i was put on 3000 mg Acyclovir every day for over 5 years, which masked the shingles that had moved from my hip, to my eye and leaving Ophthalmic Shingles and TN undiagnosed and untreated for 14 continuous months and doctors confused why Dilaudid and Fentynal was suddenly having no effect on my PHN. The daily 3000 mg of antiviral was masking that i had developed shingles in my eye and keeping it just under enough control, to make them miss it. Their delay caused my shingles to create TN. I am not angry, as i know it was a simple mistake but i do wish doctors had looked more at my symptoms than they did at my age and that could have given me a quicker diagnosis...or maybe not.

      As for misdiagnosis, i had many of those, beginning with doctors having difficulty accepting a 42 year old had shingles and even more unbelievable to them, was that the shingles was recurring. In the beginning, i was misdiagnosed as having Auto-immune, MS, Migraines, Vertigo and even had the last "specialist", who i saw for the TN pain, actually diagnose me with PTSD. I'm still baffled by that one, myself.

      Yes, i have tried the Carbamazepin but it did not give me much relief and the side effects were worse than the benefits. After everyone was on the same page for my diagnosis, the standard practice became to just hospitalize me and knock me out for 3-5 days. Now, i put more confidence in my regular MD who takes better care of me than specialists ever did. And now, i can be sedated at home, when need be.

      I thank you for your kindness, friendship and i thank you for your prayers. Please know that you are in my prayers as well, friend.

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  • Posted

    Hi,

    Your description of the cattle prod is spot on! I sometimes liken TN to being tasered in the face. My favourite is the hatchet just above the hairline followed by the stabbing in my eyes and electric shocks in my cheeks. I have to make light of this hideous B'stard of a condition as it's what gets me through a bad day.

    My lovely hubby bought me a new hot water bottle with a soft but thin cover for Xmas. I've not used it yet, but I know exactly where it is when it is needed! The hotter the better.

    Lots of people try homeopathic remedies such as turmeric, others try acupuncture or chiropractic therapies. For some surgery is a no-brainer. For me the risks are too high. For others surgery is the only option having exhausted everything else. We must all find a way to deal with it which works best.

    I was recently started on gabapentin to prevent the migraine which inevitably follows an epic TN attack (which itself triggers more TN). I have found that I'm getting fewer mini attacks on a daily basis. I take it in combination with Amitriptyline, carbamazepine and all manner of other pain medicines. So far so good.

    I'm unlucky enough to have bilateral TN affecting all three branches on both sides. I found an article about the migraine/TN situation and my GP was happy to follow the recommendations in it, hence the gabapentin. We are both fortunate to have good doctors. Not to mention supportive families.

    I wish you well in your search for relief.

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    • Posted

      Bless your heart...i'm sorry, Susan. I can't even fathom having it bilateral. I am quite familiar with the hairline hatchet pain, followed by shocks. My first few times being rushed to the emergency room, i recall trying to actually communicate and answer questions that some calm acting, seemingly unfeeling clerk was asking me at admitting. She asked, i heard, i screamed in agony...so the conversation was pretty much a one way chat. It only took a couple of those visits before everyone was on the same page and i imagine my name was somewhere written on a post-it note behind the desk shields because people came running and often had a syringe waiting before i ever reached the admitting station, which i passed by swiftly in a wheelchair or stretcher, without stopping most of the time.

      I've already exhausted most options but since i haven't felt all that lucky these past 8 years, all surgical procedures are too high risk, in my mind, for now anyway.

      At the present time, it's like a medical ward in our home, with my attacks coming every 2-3 hours around the clock. This is not a random thing though but is due to my recent medical choice. As my TN was brought on by recurring shingles, of which i am still struggling with, i have elected to bypass CDC recommendation and through my doctor, am having a second round of the new vaccine, Shingrix. It's a two-shot vaccine that i've already had back in June and August but having it again, hoping the relief will last this time. Like the first time, i took the vaccine with an active shingles outbreak, so it has caused stress on my body, bringing on more shingles, chickenpox and the TN to fire off, around the clock. Hoping all of this is only temporary and also worth it in the end. So, i do not confuse anyone, i will tell you that no one is supposed to take the vaccine with a current outbreak and this 2-shot vaccine is only supposed to be done once in a lifetime. But as i could not wait for shingles that do not go away with my case, and also being out of medical options, my doctor and i have taken this approach. Fingers crossed.

      I did not have success with gabapentin but i have read that many sufferers DO have success with it. I wish you the very best of luck and relief with it. You are in my thoughts and prayers.

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  • Posted

    Thanks for the comments. It sounds like you have a double dose. So sorry to hear that. It is great to have good support. MAYBE by sharing our experiences with each other we find something to help each other. GOD bless and good luck to you.

    STEVE

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    • Posted

      I agree and thank you also, Steve. Please know i am here to listen, if you need a friend. I agree that sharing does bring comfort and perhaps will bring medical relief to us all. Take care and God bless you and your family.

      ~Rhonda

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