May Have Finally Found the How/Why This Happened!

General General TN & GPN (Old Site)
1

I believe my ATN right side and Geniculate Neuralgia all stemmed from Shingles virus and something called Post Herpectic Neuralgia and Ramsey Hunt Syndrome (Geniculate Neuralgia). As I have been praying, as well as many others a friend of mine who happens to be a nurse found the answer for me! This has been driving me nuts why or how I was exposed to this pain other than God's plan, but how it occurred to me. I don't know if you all know how you obtained TN/ATN etc. but it is mind numbing to be in chronic pain and then not know how you got it is even worse!

My pain started with an inner ear infection in the fall of 2011. I kept being treated for a recurring ear infection after I received the flu shot (for the first time in my life). I hadn't had an ear infection since childhood! So no matter what the pain was deep and no antibiotic would get rid of it. I have doctor's records and saw 5 ENT's, neurologists, who each saw a "hematoma", "white" substance, or a "blood clot" in my ear but not one of them tested it for herpes zoster (another name for shingles). I even had ear surgery to remove the blood clot (which now I believe was a shingle). Now that specimen has been destroyed but I am 100percent positive if it were to be tested now it would be shingles.

Now, since it went untreated (shingles) it spread to from my geniculate nerve to my facial nerves and cranial nerves and now my eye and right arm. If I had just been given an antiviral ATN may have been avoided. But none of the ENT's could Identify the shingles and kept treating me with antibiotics instead of antivirals.

I am currently on an anti viral medication and seeing an eye doctor because my sight is starting to be affected. Here's hoping I catch it before it does any more damage and I hopefully if any of you are suffering from something similar you can catch it as well.

I looked up Ramsey Hunt and post herpetic neuralgia on legitimate websitees and found the symptoms to be identical to my issues. It was mind blowing to me that these doctors did not catch it in time. But then again, I guess that's not what God intended to happen.

Also, I was so excited to tell my pain managment doctor about my friend's findings. That I thought I found the cause of my ATN and I went in there, and he acted like he knew allll along. HE said, "oh yeah, most Trigeminal neuralgia's are cause by post herpectic neuralgia's." Ok??? why didn't he say that when I came In???

I go there every other week and have to receive lidocaine shots in the head for the horrible headahces and SPG catheter injections in my nose as well and occipital shots in the back of head.

Take care and if I can help one person, than that's the reason I wanted to share.

2

I definately beleive you are correct and they are connected. I have had my terrible condition for 14 years now and it all started about 2 weeks after I was the sickest I ever was inmy entire life. The odd thing is I just has noticeable shingles on my head last year and the shingles all appeared in the exact same spots where my TG and Occiptial N pain travels - EXACTLY the same places!! My shingles occurence was like a sign from God telling me how I really got this back in Dec 1999. When I had my first, noticeable shingles attack last year I caught it within one day & went to the doctor and asked myself for anti-viral medications to keep it under control. I beleive the anti-viral meds worked. Additionally, I have never had any flu vaccines and never will now that I have this condition. Believe it or not, after 14 years I am finally figuring out how to halfway control this dreaded problem. I can share what I have found that works best - I have several tricks and three relatively safe meds I take "as needed". I wish you all the best! David

3

Hi Kerry!

My name is Laurel aka shinglesdidit...

I have Geniculate Neuralgia (GN) stemming from Post Herpetic Neuralgia from a bad case of the shingles back in 2010.

The illness started with the worst earache I've ever had, three days later I came down with a rash. Interesting part of all of this is that my rash was on my left thigh. Nothing on my face or in my ear! When I went to the hospital I was just positive that the ER docs would find shingles there as well, but there was nothing, not even redness. It took me 18 months to get a referral to an ENT who diagnosed me with PHN. Then I had to convince my NP to refer me to a neurologist which took me another couple of months. My NP diagnosed me with 'Somatization disorder' during all of this...she promptly dropped that diagnosis once I saw the Neuro and he confirmed PHN and also suggested that I might have a rare disorder called 'Geniculate Neuralgia'. This neuro promptly retired and again I was at the mercy of my suspicious NP. Finally got a neuro an hour away that first diagnosed me with Trigeminal Neuralgia. I was enrolled in Pain Management and promptly got a nerve block (real bad experience) It did nothing. Back to my neuro for upped meds ie. cymbalta, tegretol, neurontin, norco, but with poor results. At one of these appts. I asked him to review the notes from my previous neuro as I remembered he spoke of a rare condition he thought I could have. Upon review of those notes my neuro changed my diagnosis and set me up to confer with a neurosurgeon to see what those options might be.

I met with the NS, he reviewed my MRI and then after talking to me he made the clinical diagnosis of GN and offered me a look at Gamma Knife surgery. I researched it with family and then made the appointment to meet again with that NS and his partner w/Gamma Knife, a radiology oncologist. At this meeting both doctors were graphic with the possible side effects, I think trying to scare me but I was in so much pain at the time (on purpose did not take med) that they a l m o s t scheduled me. The whole PHN caused GN was the deal breaker. They told me that they knew of only 15 cases (me 16?) worldwide of my particularly rare case. That being that I actually had shingles on the nerve in my brain as well as on my skin/limb on the same side but no where near each other.

I left in tears of course and figured I was going to been on narcotics the rest of my life...which was already taking a toll on my other systems.

I came home desperate for some help or support with all this because even though my family validates me, rare conditions are hard to swallow, even for me.

I had a death wish by this time but God wasn't biting and I couldn't tell the ones I love and live with( 9 of us together) about the way I was feeling. God brought me to BensFriends I believe and within a couple of days I was lead to the DOCTORS tab and searched out Gamma Knife NS's in my state and by golly, I got hits! I researched the hits and chose one and wrote to her via the email she provided and gave her the details of my GN and it being PHN but without herpes on or by the outer ear. She wrote back within two hours and told me "Yes, I can help you! Call for an appointment." I couldn't believe it! I gave the family a quick survey and they agreed it couldn't hurt to see her. I got an appt for 5 days later. Her team put me through the works with new MRIs etc, checked my eyes and nose....bunches of tests over 2 days. The proof was in the different types of MRI's they did as they could see scars on the geniculate nerve. Hallelujah!

From there I saw 'her' radiology oncologist who confirmed diagnosis and told me he was on board with giving GK a try for my GN but reminded me how rare all this was and that it could take upwards of 6 months sometimes for the radiation to do it's thing. I have to admit my stomach dropped right then as I really wanted to wake up cured somewhat or a little.

I had my GK surgery April of 2013 and after 6 months of no change in my pain (feels like stabs to the eardrum 24/7) they have deemed it unsuccessful. I want to say here that not one neuro that I've seen for this has ever mentioned Ramsey Hunt. I wonder if that's because I didn't have any herpes in the ear? Anyway... In Oct/2013 I began P-Stim treatments that consist of 3 acupuncture tacks poked into nerve paths on my outer ear, to leads attached to a battery pack. When all are glued/taped/attached/switched on, I receive bee sting like shocks randomly over the next 72/84 hours. The thinking behind these treatments is to produce endorphin rushes similar to the ones we get with our GN pain, and to train the brain not to react to that pain stimuli. It has worked very well with her TN patients.

I presently have # 5 attached. I have had different side affects with each implant. They have switched ears as the nerve paths/blood flows are the same on each ear but it hasn't seemed to matter. I had the pain exacerbated by these, get vertigo to the point of vomiting, headaches/migraines, and it interrupts my already crummy sleep pattern by stinging me randomly throughout the night.

We talked this time about how much longer we're going to do these treatments as I can have up to 15 but why, when they're not working. We've decided to keep these up until April and then talk to our RO about possibly doing another GK surgery and this time upping the radiation slightly as the first time they game me a dose 20% less than they give the TN patients.

I'm hoping that he'll agree to give it another try. The risks go up and I've been very fortunate not to have had any from the first try at GK. They are still very nervous about the whole PHN and fear there could be other scars that the MRIs don't see thus possibly fixing only part of the problem...that would suck! But I would take any reduction in pain....this has gone on for too long and all the medications that I've been taking for this and for other diseases I have, are causing other health issues and I don't want nor can I handle, any more health issues! Know what I mean? I'm in line for psychotherapy and my number could not come up soon enough!

I guess I could have just said..yes, they're definitely related though doctors have a hard time with the GN diagnosis period. But...I put it all out here instead...that's how I roll I guess. You can go to my profile and see pictures on my journey and some more info that I couldn't fit in here. HAha!

I hope you're getting somewhere with your treatment. Feel free to pick my goofy little brain any time.

Be sweet to yourself~Always~Laurel

4

Laurel,

Wow! Oh my goodness, thank you so much for sharing your heroic story. There is so much I can relate too, and so much struggle you have gone through. You are truly a strong individual to try all those treatments. I am so sorry you have had to experience so much pain.

Are you in the United States?

I have so many questions. I am in the process of trying to get doctors to relate my geniculate neuraliga and ATN to shingles. I have been suffering in pain for two years and now my eye sight and arm/hand are now being disabled, yet no doctor can seem to put this on shingles b/c i have not had a rash. To me this is all clear as day, as well as loved ones and friends who have supported me.

I am trying to get into an Infectious Disease doctor and had a great Reaction to being on antiviral medications. For the first time in 2 years, I could actually not completely rely on Narcotics all day long and I could open a jar and pick up my daughter, shampoo my hair, and write with a pen without disabling pain, This is all on one side. I had an ear infection, and a large hematoma in my ear.

Laurel-How did they see the shingles on your brain and nerves? What tests-blood and MRI's did they do to see the damage to your geniculate nerves? I have had so many MRI's to Gallium scans, to CT scans even a matstoidectomy and removed a blood clot (which I now believe was shingle and they didn't even test it!) and none of them have helped these doctor's to further diagnose me!

My pain mgmt doctor says that yes this probably is post herpetic neuralgia but the damage is already done to my nerves. But I am soooo tired of just treating the symptoms- I want to treat the cause-I want to attack the shingles in my body, I am 31 years old. I want my life back!

So do you have a permanent nerve stimulator implantation device? It seems like they are producing quit a lot of side effects for you? Are they harder to deal with than the pain? Thanks so much for sharing your experience, it means the world to me to hear this from someone.

I met with atypical facial specialist (neurosurgeon) in Kansas City and he spoke about that being the option. That to me was the last resort, and again was treating the symptoms. I want to find the cause, since this came on suddenly.

shinglesdidit said:

Hi Kerry!

My name is Laurel aka shinglesdidit...

I have Geniculate Neuralgia (GN) stemming from Post Herpetic Neuralgia from a bad case of the shingles back in 2010.

The illness started with the worst earache I've ever had, three days later I came down with a rash. Interesting part of all of this is that my rash was on my left thigh. Nothing on my face or in my ear! When I went to the hospital I was just positive that the ER docs would find shingles there as well, but there was nothing, not even redness. It took me 18 months to get a referral to an ENT who diagnosed me with PHN. Then I had to convince my NP to refer me to a neurologist which took me another couple of months. My NP diagnosed me with 'Somatization disorder' during all of this...she promptly dropped that diagnosis once I saw the Neuro and he confirmed PHN and also suggested that I might have a rare disorder called 'Geniculate Neuralgia'. This neuro promptly retired and again I was at the mercy of my suspicious NP. Finally got a neuro an hour away that first diagnosed me with Trigeminal Neuralgia. I was enrolled in Pain Management and promptly got a nerve block (real bad experience) It did nothing. Back to my neuro for upped meds ie. cymbalta, tegretol, neurontin, norco, but with poor results. At one of these appts. I asked him to review the notes from my previous neuro as I remembered he spoke of a rare condition he thought I could have. Upon review of those notes my neuro changed my diagnosis and set me up to confer with a neurosurgeon to see what those options might be.

I met with the NS, he reviewed my MRI and then after talking to me he made the clinical diagnosis of GN and offered me a look at Gamma Knife surgery. I researched it with family and then made the appointment to meet again with that NS and his partner w/Gamma Knife, a radiology oncologist. At this meeting both doctors were graphic with the possible side effects, I think trying to scare me but I was in so much pain at the time (on purpose did not take med) that they a l m o s t scheduled me. The whole PHN caused GN was the deal breaker. They told me that they knew of only 15 cases (me 16?) worldwide of my particularly rare case. That being that I actually had shingles on the nerve in my brain as well as on my skin/limb on the same side but no where near each other.

I left in tears of course and figured I was going to been on narcotics the rest of my life...which was already taking a toll on my other systems.

I came home desperate for some help or support with all this because even though my family validates me, rare conditions are hard to swallow, even for me.

I had a death wish by this time but God wasn't biting and I couldn't tell the ones I love and live with( 9 of us together) about the way I was feeling. God brought me to BensFriends I believe and within a couple of days I was lead to the DOCTORS tab and searched out Gamma Knife NS's in my state and by golly, I got hits! I researched the hits and chose one and wrote to her via the email she provided and gave her the details of my GN and it being PHN but without herpes on or by the outer ear. She wrote back within two hours and told me "Yes, I can help you! Call for an appointment." I couldn't believe it! I gave the family a quick survey and they agreed it couldn't hurt to see her. I got an appt for 5 days later. Her team put me through the works with new MRIs etc, checked my eyes and nose....bunches of tests over 2 days. The proof was in the different types of MRI's they did as they could see scars on the geniculate nerve. Hallelujah!

From there I saw 'her' radiology oncologist who confirmed diagnosis and told me he was on board with giving GK a try for my GN but reminded me how rare all this was and that it could take upwards of 6 months sometimes for the radiation to do it's thing. I have to admit my stomach dropped right then as I really wanted to wake up cured somewhat or a little.

I had my GK surgery April of 2013 and after 6 months of no change in my pain (feels like stabs to the eardrum 24/7) they have deemed it unsuccessful. I want to say here that not one neuro that I've seen for this has ever mentioned Ramsey Hunt. I wonder if that's because I didn't have any herpes in the ear? Anyway... In Oct/2013 I began P-Stim treatments that consist of 3 acupuncture tacks poked into nerve paths on my outer ear, to leads attached to a battery pack. When all are glued/taped/attached/switched on, I receive bee sting like shocks randomly over the next 72/84 hours. The thinking behind these treatments is to produce endorphin rushes similar to the ones we get with our GN pain, and to train the brain not to react to that pain stimuli. It has worked very well with her TN patients.

I presently have # 5 attached. I have had different side affects with each implant. They have switched ears as the nerve paths/blood flows are the same on each ear but it hasn't seemed to matter. I had the pain exacerbated by these, get vertigo to the point of vomiting, headaches/migraines, and it interrupts my already crummy sleep pattern by stinging me randomly throughout the night.

We talked this time about how much longer we're going to do these treatments as I can have up to 15 but why, when they're not working. We've decided to keep these up until April and then talk to our RO about possibly doing another GK surgery and this time upping the radiation slightly as the first time they game me a dose 20% less than they give the TN patients.

I'm hoping that he'll agree to give it another try. The risks go up and I've been very fortunate not to have had any from the first try at GK. They are still very nervous about the whole PHN and fear there could be other scars that the MRIs don't see thus possibly fixing only part of the problem...that would suck! But I would take any reduction in pain....this has gone on for too long and all the medications that I've been taking for this and for other diseases I have, are causing other health issues and I don't want nor can I handle, any more health issues! Know what I mean? I'm in line for psychotherapy and my number could not come up soon enough!

I guess I could have just said..yes, they're definitely related though doctors have a hard time with the GN diagnosis period. But...I put it all out here instead...that's how I roll I guess. You can go to my profile and see pictures on my journey and some more info that I couldn't fit in here. HAha!

I hope you're getting somewhere with your treatment. Feel free to pick my goofy little brain any time.

Be sweet to yourself~Always~Laurel

5

Kerry my shingles were documented but I had a hell of a time getting anyone to believe that I had shingles internally. In my research I've found that shingles will attack internally, no one knows why but they do and have caused things such as heart failure, blindness, unexplained numbness/pain in extremities and neurological/cranial neuralgias. It's just that it is so rare for this to happen.

My Mother was hospitalized with heart trouble and during her hospitalization got severe headaches and pain in her eyes. The day she was going to be discharged she was brushing her hair and felt pain in her scalp...having one of her nurses check the area and lo and behold....shingles! She's lost sight in one eye permanently and has been having mini strokes ever since...we had to put her in assisted living. We are all very sure that shingles was at the root of the illness that got her hospitalized.

Now...to answer some of your questions...I do not recall any special bloodwork that they did...they did some prior to my Gamma Knife Surgery but I think that was just protocol. They did MRI's of brain w/wo dye, they did Gad-Base MR Contrast NOS, and a CAT requiring specific Identification IV Therapy of my head, they did the MRI's with something called MAGNEVIST and a scan called a MRT. They do new ones every 3 months.

What I call the P-Stim is actually called Neurostim Electrode. It is NOT permanent, I wear it for 72/84 hours until it quits stinging me and then a family member helps me take it off and it is disposed of..My Blue Cross covers the proceedures 100% and I get a new one every 3 weeks.

Now I have had some bad reactions to these, vertigo, nausea, vomiting, headache but it isn't terrible and I figure if these treatments work then it's a small price to pay. I have heard of the implants that they actually put in your brain but this has not been discussed nor do I think I would opt for that treatment. I am hoping to qualify for another try at Gamma Knife, as I said, this time hopefully they will give me a little more radiation and erase the scars from my geniculate nerve. I come up for consideration in April. Wish me luck!

I wish I had some more info on the P-Stim for you. The correct name for this device is NEUROSTIM ELECTRODE. Perhaps have your physician look into this for you. If there is ever anything else you want to run by me please feel free. I'd be happy to!

Be sweet to yourself Kerry! Talk to you soon!

Always~Laurel



kerry said:

Laurel,

Wow! Oh my goodness, thank you so much for sharing your heroic story. There is so much I can relate too, and so much struggle you have gone through. You are truly a strong individual to try all those treatments. I am so sorry you have had to experience so much pain.

Are you in the United States?

I have so many questions. I am in the process of trying to get doctors to relate my geniculate neuraliga and ATN to shingles. I have been suffering in pain for two years and now my eye sight and arm/hand are now being disabled, yet no doctor can seem to put this on shingles b/c i have not had a rash. To me this is all clear as day, as well as loved ones and friends who have supported me.

I am trying to get into an Infectious Disease doctor and had a great Reaction to being on antiviral medications. For the first time in 2 years, I could actually not completely rely on Narcotics all day long and I could open a jar and pick up my daughter, shampoo my hair, and write with a pen without disabling pain, This is all on one side. I had an ear infection, and a large hematoma in my ear.

Laurel-How did they see the shingles on your brain and nerves? What tests-blood and MRI's did they do to see the damage to your geniculate nerves? I have had so many MRI's to Gallium scans, to CT scans even a mastoidectomy and removed a blood clot (which I now believe was shingle and they didn't even test it!) and none of them have helped these doctor's to further diagnose me!

My pain mgmt doctor says that yes this probably is postherpetic neuralgia but the damage is already done to my nerves. But I am soooo tired of just treating the symptoms- I want to treat the cause-I want to attack the shingles in my body, I am 31 years old. I want my life back!

So do you have a permanent nerve stimulator implantation device? It seems like they are producing quit a lot of side effects for you? Are they harder to deal with than the pain? Thanks so much for sharing your experience, it means the world to me to hear this from someone.

I met with atypical facial specialist (neurosurgeon) in Kansas City and he spoke about that being the option. That to me was the last resort, and again was treating the symptoms. I want to find the cause, since this came on suddenly.

shinglesdidit said:

Hi Kerry!

My name is Laurel aka shinglesdidit...

I have Geniculate Neuralgia (GN) stemming from Post Herpetic Neuralgia from a bad case of the shingles back in 2010.

The illness started with the worst earache I've ever had, three days later I came down with a rash. Interesting part of all of this is that my rash was on my left thigh. Nothing on my face or in my ear! When I went to the hospital I was just positive that the ER docs would find shingles there as well, but there was nothing, not even redness. It took me 18 months to get a referral to an ENT who diagnosed me with PHN. Then I had to convince my NP to refer me to a neurologist which took me another couple of months. My NP diagnosed me with 'Somatization disorder' during all of this...she promptly dropped that diagnosis once I saw the Neuro and he confirmed PHN and also suggested that I might have a rare disorder called 'Geniculate Neuralgia'. This neuro promptly retired and again I was at the mercy of my suspicious NP. Finally got a neuro an hour away that first diagnosed me with Trigeminal Neuralgia. I was enrolled in Pain Management and promptly got a nerve block (real bad experience) It did nothing. Back to my neuro for upped meds ie. cymbalta, tegretol, neurontin, norco, but with poor results. At one of these appts. I asked him to review the notes from my previous neuro as I remembered he spoke of a rare condition he thought I could have. Upon review of those notes my neuro changed my diagnosis and set me up to confer with a neurosurgeon to see what those options might be.

I met with the NS, he reviewed my MRI and then after talking to me he made the clinical diagnosis of GN and offered me a look at Gamma Knife surgery. I researched it with family and then made the appointment to meet again with that NS and his partner w/Gamma Knife, a radiology oncologist. At this meeting both doctors were graphic with the possible side effects, I think trying to scare me but I was in so much pain at the time (on purpose did not take med) that they a l m o s t scheduled me. The whole PHN caused GN was the deal breaker. They told me that they knew of only 15 cases (me 16?) worldwide of my particularly rare case. That being that I actually had shingles on the nerve in my brain as well as on my skin/limb on the same side but no where near each other.

I left in tears of course and figured I was going to been on narcotics the rest of my life...which was already taking a toll on my other systems.

I came home desperate for some help or support with all this because even though my family validates me, rare conditions are hard to swallow, even for me.

I had a death wish by this time but God wasn't biting and I couldn't tell the ones I love and live with( 9 of us together) about the way I was feeling. God brought me to BensFriends I believe and within a couple of days I was lead to the DOCTORS tab and searched out Gamma Knife NS's in my state and by golly, I got hits! I researched the hits and chose one and wrote to her via the email she provided and gave her the details of my GN and it being PHN but without herpes on or by the outer ear. She wrote back within two hours and told me "Yes, I can help you! Call for an appointment." I couldn't believe it! I gave the family a quick survey and they agreed it couldn't hurt to see her. I got an appt for 5 days later. Her team put me through the works with new MRIs etc, checked my eyes and nose....bunches of tests over 2 days. The proof was in the different types of MRI's they did as they could see scars on the geniculate nerve. Hallelujah!

From there I saw 'her' radiology oncologist who confirmed diagnosis and told me he was on board with giving GK a try for my GN but reminded me how rare all this was and that it could take upwards of 6 months sometimes for the radiation to do it's thing. I have to admit my stomach dropped right then as I really wanted to wake up cured somewhat or a little.

I had my GK surgery April of 2013 and after 6 months of no change in my pain (feels like stabs to the eardrum 24/7) they have deemed it unsuccessful. I want to say here that not one neuro that I've seen for this has ever mentioned Ramsey Hunt. I wonder if that's because I didn't have any herpes in the ear? Anyway... In Oct/2013 I began P-Stim treatments that consist of 3 acupuncture tacks poked into nerve paths on my outer ear, to leads attached to a battery pack. When all are glued/taped/attached/switched on, I receive bee sting like shocks randomly over the next 72/84 hours. The thinking behind these treatments is to produce endorphin rushes similar to the ones we get with our GN pain, and to train the brain not to react to that pain stimuli. It has worked very well with her TN patients.

I presently have # 5 attached. I have had different side affects with each implant. They have switched ears as the nerve paths/blood flows are the same on each ear but it hasn't seemed to matter. I had the pain exacerbated by these, get vertigo to the point of vomiting, headaches/migraines, and it interrupts my already crummy sleep pattern by stinging me randomly throughout the night.

We talked this time about how much longer we're going to do these treatments as I can have up to 15 but why, when they're not working. We've decided to keep these up until April and then talk to our RO about possibly doing another GK surgery and this time upping the radiation slightly as the first time they game me a dose 20% less than they give the TN patients.

I'm hoping that he'll agree to give it another try. The risks go up and I've been very fortunate not to have had any from the first try at GK. They are still very nervous about the whole PHN and fear there could be other scars that the MRIs don't see thus possibly fixing only part of the problem...that would suck! But I would take any reduction in pain....this has gone on for too long and all the medications that I've been taking for this and for other diseases I have, are causing other health issues and I don't want nor can I handle, any more health issues! Know what I mean? I'm in line for psychotherapy and my number could not come up soon enough!

I guess I could have just said..yes, they're definitely related though doctors have a hard time with the GN diagnosis period. But...I put it all out here instead...that's how I roll I guess. You can go to my profile and see pictures on my journey and some more info that I couldn't fit in here. HAha!

I hope you're getting somewhere with your treatment. Feel free to pick my goofy little brain any time.

Be sweet to yourself~Always~Laurel