Newly Diagnosed with Trigeminal Neuralgia after 2 years of constant ear pain

1

Hi All,

This group was suggested to me by one of the moderators and so I decided to check it out. I'm 24 year old female diagnosed with Bi-lateral Trigeminal Neuralgia after 2 frustrating painful years of being told I had ear infections.

Until the age of 21, I had never had an ear infection..My mother said I never had them as a kid either.. But, either way I developed my first "ear infection" that was incredibly painful. Went to the ER and they confirmed ear infection, prescribed me antibiotics and sent me on my way. After that, I started to experience excruciating pains frequently (at least once a week I would have what I thought was an infection) in one ear or the other. 15 visits to the emergency room as well as multiple visits to my primary care physician, dozens of different antibiotic pills, antibiotic drops, and tramadol and benzocaine for the pain later, I had grown discouraged and stopped seeking help from the doctors as the multiple treatment plans they had tried before had never helped.

March of this year while I was at work (I hadn't really noticed my ear to be paining anymore than I was use to) the most agonizing sharp pain jabbed into my ear like an ice pic and rippled across my face causing me to scream out and vomit from the pain. The pain was unlike any other I had ever felt, it terrified me and had me desperate for relief. I immediately thought I burst my ear drum and went to the emergency room. After they had me settled down from morphine, they did a cat scan, blood work and manually inspected my ear drums. The doctor looked perplexed..He said there was zero sign of infection, my ear drum was fine, and nothing showed up on my cat scan. After reviewing my file showing my multiple previous visits all for the same thing he said he did not believe that I had in fact been having infections as my ears looked perfectly healthy. He is the one that first told me about Trigeminal Neuralgia..I had never heard of it. It made sense. All of the symptoms were spot on, the pain that was described from people that suffer was exactly like what I had been experiencing.

In the last 4 months, I have had numerous Dr. appointments, at least 1 every two weeks. Many different prescriptions with varying strengths and frequency of doses. I have had 2 MRI's done, 1 cat scan done, blood work done 3+ times. Still don't really feel like I have a whole lot of answers.. My current prescription regimen is 800mg Neurotin 3 x a day, 800mg Ibuprofen 3 x a day, 100mg Tegretol 3 x a day, and 5mg Oxycodone 6 times a day. It makes me cringe to think of the amount of drugs that I am on and that amount of pain I am still in. At this moment I sit at my computer with earplugs in to try to get what little relief I feel I get from having them in. I'm constantly with my hands over my ears just from the air around me, vibrations from sounds. I am completely frustrated and just all around miserable.

I hate the fact that this is such a rare disease that when you try to explain it to most people, it almost seems like you're exaggerating when you try to explain the intensity of the pain. I feel ashamed when I go pick up my prescriptions monthly, especially the Oxycodone as I feel the judgement of people looking at me like "There's nothing wrong with her, she's just another junky kid".. I'm desperate for an answer, or at least a more effective option for pain relief.

Would love to hear any suggestions or feed back!

2

Hello Damsel,

Geniculate Neuralgia. Ice Pick in the ear. The 'Suicide Disease'. This is the world of ours. We get skew looks from loved ones as well, unfortunately. I've lived a life like yours for 6 years now, and I know, believe me, I know what you're feeling. I'm in the UK so the meds may be slightly different if you're in the US. I'm on Tegretol 400mg three times per day, Pregabalin 150mg three times per day, Butrans 200mg and 100mg patches changed weekly, and to top it off, Oramorph. When the pain gets so bad that I want to rip my ear off, my wife calls the Paramedics and they give me intravenously either 1mg Paracetamol or Morphine. Don't ask me the ins-and-outs, but the cocktail works...Enough about me!! Where are you?

This is a kind of hand shake in the world of neuro-pain, and I love it. Knowing that there is someone else, or others, out there that have the same symptoms as yourself sort of keeps you sane! You're not imagining it, you're NOT going mad or delusional. Keep reading the posts and blogs written by others on this site, even the Trigeminal posts. The pain is all the same. Unfortunately, our GN numbers are very low, but there is a lot to take out of what others are feeling and saying. As with all walks of life, you still have to filter out the rubble! This is the BEST site I've found, and some of the folks are very sweet.

My wife makes me have a lie down on the bed when I have anything up to a manageable breakthrough pain attack. Blood pressure rising seems to trigger an 'episode' and as you say, draughts, wind and the like. I have mixed feelings about having the MVD operation, but as you know, when you have an attack, you will do anything to make the pain GO AWAY. Having someone to hold and their shoulder to cry on, and believe me I do cry, is very comforting at the worst time.

Sorry I can't answer all your questions or give you the pain relief you want, just know that there are more of you out here. Comforting, I know! Hang in there.

Regards,

Saint Paul

3

I too have Geniculate Neuralgia (GN) and can relate to what both Damselindistress and Saint Paul's stories. It started in Trigeminal Neuralgia (TN), ~ 7 years later I developed Occipital Neuralgia (ON) and then about a year later we added GN to the mix. You can read it in my profile, but I have tried just about every medication, nerve stimulator, every test imaginable. And spent a good 18 month in bed rolled up in a ball in so much pain. I live in South Carolina, I've gone to Oregon Several Times to see a Neurosurgeon and an expert with TN, ON and GN. He is the one who tried the nerve stimulator. I also went to Pittsburgh to see a Neurosurgeon at UMPC top notch specialist in GN and was scheduled to have MVD for my GN. But that was cancelled about 14 hours before surgery because the specialized MRI I had (Fiesta 3D with special cuts for the GN nerve). But it turned out that my anatomy was just so that he was afraid he would do more harm than good and after an hour long discussion. My Mom and I packed up our bags and headed back home (Mom to Portland OR and me to Greenwood South Carolina), both of us devastated that I didn't have the surgery done.

Fast forward 18 months to now I've had some breakthroughs that have brought me the most relief I've had in 5 years. While being hospitalized for extreme pain face and ear, and extreme confusion, they discovered that my sodium was dangerously (ie hyponatremia) low which can cause the confusion, headache, loss of energy and fatigue, restlessness, muscle spasms and pain. So they told me to try reducing my fluid intake to 16 oz a day (I tried, but that is impossible, I drink at least a 1/2 gal a day) and to increase my salt intake. I was discharged only on the agreement that I would go to my doctor the next day and start trying to figure out what was causing the hyponatremia. We tried the low fluid, high sodium for a month and my sodium levels actually went down. Then we decided that it could be my Prozac or Tegretol both of which I had been on for over 10 years - and both of them can cause low sodium.

1st stopped Prozac and replaced it with Lexapro, one month later checked my sodium and it had gone up 15 points and was right in the middle of normal! Yea! my doctor exclaims and I noticed my energy level was so much better, then we attacked the Tegretol and replaced it with Trileptal (oxcarbazepine) at first the dose was too high and I had all sorts of crazy side-effects the worst being that my vision was extremely blurry and I had dry mouth and my stool turned into cement. After putting up with all that for a month, I go back to my neurologist (not the one who prescribed these meds) and he told me the Trileptal dosage was 3 times higher than it should be, at least as a starting dose. So I cut back to 150mg once a day and all side-effects improved (still have slight trouble with my vision and constipation). So these two changes fixed my energy levels and I am back to a normal schedule for most of the time up at 7, in bed at 11a and sometimes an afternoon nap

Now for the pain, it is almost all gone (for now) using this medication regime:

Pamelor (nortriptyline) - I can take this during the day, but it helps greatly with my ear pain when I feel a twinge of it starting up. Methadone 10mg twice a day (I'm think about starting to decrease it) and then the icing on the cake is Botox injections. Upper shoulders, neck, lower skull and just below the ear that is affected by GN. The 1st dose of Botox lasted me 4-5 months, the second one I had about 2 months ago and it is going strong. We are hoping it will last until December..

Well, there is the long and short of it. The last paragraph is what is helping me the most (for now). I have the most energy and the least amount of pain I have had in 4 years! I just spent a week at the beach was out in the sun and wind, swiming in the ocean and none of that triggered anything more than a twinge of pain and a voice in the back of my head saying don't push it.

I'm happy I didn't have the surgery (God was with me that day!) and kept complaining to my doctors that something wasn't right. Plus I have the most amazing group of physicians who believe every word I say and never look at me like I'm crazy or a drug seeker. (The only person/group that made me feel like a drug seeker was my pharmacy - it took us more than a year for them to realize that I was in pain and not a drug seeker!)

Sorry to be so long, but I wanted to share a bit of my history and what is working for me (right now - it could all change in a heartbeat!)

My heart goes out to all of you dealing with any of these conditions ending in "algia"

4

Thank you for your encouragement and kind words Saint Paul. I live in the United States in the very Northern part of Maine, I'm about 5 miles from the Canadian border. My family certainly has been supportive.. Though I think only my mother and my boyfriend really understand the extent to the pain I feel and the way it consumes my life as they are the only ones to see me have a blood curdling screaming attack where I beg them for help. However, my father is very over protective of his children especially me where I'm the 'baby' and the only girl and he does not handle things (such as his daughter being in pain and him not being able to help) very well. He just acts like it doesn't really exist, doesn't want to talk about it.. Not in a rude way or that he doesn't care, he just can't handle seeing me in pain. My boyfriend on the other hand I feel has been my life saver. He has a routine of what he does when he knows I'm really hurting, waiting on me hand and foot, giving me cold wash cloths or warm rice socks. Rubs my back and talks to me as soothingly as possible trying to distract me and reminding me to breathe. I can't imagine it's all that easy living with someone that suffers from this disease. I find I annoy myself half the time with the crying and whining. But, in all honesty.. I don't think at this point I even realize I'm doing it half of the time because it's such a constant thing in my life, I feel that it consumes me entirely. I've had to leave work several times or not go in at all.. I can't do many activities I use to do because I'm afraid something will happen and an attack will hit and I'll be surrounded by people that have no idea what is wrong with me or how to help me. I use to be such an outgoing person always on the go..And now, generally anytime I am not at work, I am in bed. It's devastating. I just turned 24 in June.. I feel like my life is literally out of my hands now because it is ruled by pain and fear. I spent the entire night last night wide awake with ear plugs in and a scarf wrapped as tightly as I could get it around my ears laying in bed pressing a pillow around my head as tightly as I could crying.. Fell asleep for 46 minutes and than it was time for me to get ready for work. I just am incredibly frustrated and today I am an emotional wreck.. The pain alone is enough to drive you mad..I wonder sometimes if I'm just imagining it in my head.. But, than I realize there is no way of pretending to be in that much pain. I do not feel that anyone that wasn't feeling it could never imitate the intensity of it. Thank you again for sharing your story with me.. I feel I find myself feeling lonely a lot lately not having anyone that actually truly understands what I'm going through so I was very excited to stumble across this forum. Hope you are as pain free as possible :) - Morgan



Saint Paul said:

Hello Damsel,

Geniculate Neuralgia. Ice Pick in the ear. The 'Suicide Disease'. This is the world of ours. We get skew looks from loved ones as well, unfortunately. I've lived a life like yours for 6 years now, and I know, believe me, I know what you're feeling. I'm in the UK so the meds may be slightly different if you're in the US. I'm on Tegretol 400mg three times per day, Pregabalin 150mg three times per day, Butrans 200mg and 100mg patches changed weekly, and to top it off, Oramorph. When the pain gets so bad that I want to rip my ear off, my wife calls the Paramedics and they give me intravenously either 1mg Paracetamol or Morphine. Don't ask me the ins-and-outs, but the cocktail works...Enough about me!! Where are you?

This is a kind of hand shake in the world of neuro-pain, and I love it. Knowing that there is someone else, or others, out there that have the same symptoms as yourself sort of keeps you sane! You're not imagining it, you're NOT going mad or delusional. Keep reading the posts and blogs written by others on this site, even the Trigeminal posts. The pain is all the same. Unfortunately, our GN numbers are very low, but there is a lot to take out of what others are feeling and saying. As with all walks of life, you still have to filter out the rubble! This is the BEST site I've found, and some of the folks are very sweet.

My wife makes me have a lie down on the bed when I have anything up to a manageable breakthrough pain attack. Blood pressure rising seems to trigger an 'episode' and as you say, draughts, wind and the like. I have mixed feelings about having the MVD operation, but as you know, when you have an attack, you will do anything to make the pain GO AWAY. Having someone to hold and their shoulder to cry on, and believe me I do cry, is very comforting at the worst time.

Sorry I can't answer all your questions or give you the pain relief you want, just know that there are more of you out here. Comforting, I know! Hang in there.

Regards,

Saint Paul

5

Hi Gail,

Thank you for sharing your story with me, I am very interested in speaking with people that also suffer from Geniculate/Trigeminal Neuralgia as I almost feel like I'm speaking gibberish to people that don't know what it is or what the symptoms consist of.. You can try to explain to them what the pain is like and how consuming this disease is until you turn blue in the face but I don't think anyone could ever truly grasp the severity or intensity of the pain unless they felt it themselves. I'm still fairly new to this Neuralgia ailment..It's devastating and feels like I will never be pain free again. I've read a lot on all the procedures and the risks scare me. The people that end up with paralysis, hearing loss, loss of taste. I mean how do you decide what is the wrong risk to take? Risk spending the rest of your life bed ridden and in agony completely losing "yourself" because all you are now is Trigeminal Neuralgia.. Or try a drastic surgical procedure that seems to have a lot failure rates and risk living with paralysis in your face, loss of hearing, or loss of taste. I have however been very curious about the botox treatment. Thank you so much for replying to my post and sharing with me, I look forward to learning more from people with first hand experience. I hope you continue to have minimal pain and enjoy your life :)

-Morgan

Gail C said:

I too have Geniculate Neuralgia (GN) and can relate to what both Damselindistress and Saint Paul's stories. It started in Trigeminal Neuralgia (TN), ~ 7 years later I developed Occipital Neuralgia (ON) and then about a year later we added GN to the mix. You can read it in my profile, but I have tried just about every medication, nerve stimulator, every test imaginable. And spent a good 18 month in bed rolled up in a ball in so much pain. I live in South Carolina, I've gone to Oregon Several Times to see a Neurosurgeon and an expert with TN, ON and GN. He is the one who tried the nerve stimulator. I also went to Pittsburgh to see a Neurosurgeon at UMPC top notch specialist in GN and was scheduled to have MVD for my GN. But that was cancelled about 14 hours before surgery because the specialized MRI I had (Fiesta 3D with special cuts for the GN nerve). But it turned out that my anatomy was just so that he was afraid he would do more harm than good and after an hour long discussion. My Mom and I packed up our bags and headed back home (Mom to Portland OR and me to Greenwood South Carolina), both of us devastated that I didn't have the surgery done.

Fast forward 18 months to now I've had some breakthroughs that have brought me the most relief I've had in 5 years. While being hospitalized for extreme pain face and ear, and extreme confusion, they discovered that my sodium was dangerously (ie hyponatremia) low which can cause the confusion, headache, loss of energy and fatigue, restlessness, muscle spasms and pain. So they told me to try reducing my fluid intake to 16 oz a day (I tried, but that is impossible, I drink at least a 1/2 gal a day) and to increase my salt intake. I was discharged only on the agreement that I would go to my doctor the next day and start trying to figure out what was causing the hyponatremia. We tried the low fluid, high sodium for a month and my sodium levels actually went down. Then we decided that it could be my Prozac or Tegretol both of which I had been on for over 10 years - and both of them can cause low sodium.

1st stopped Prozac and replaced it with Lexapro, one month later checked my sodium and it had gone up 15 points and was right in the middle of normal! Yea! my doctor exclaims and I noticed my energy level was so much better, then we attacked the Tegretol and replaced it with Trileptal (oxcarbazepine) at first the dose was too high and I had all sorts of crazy side-effects the worst being that my vision was extremely blurry and I had dry mouth and my stool turned into cement. After putting up with all that for a month, I go back to my neurologist (not the one who prescribed these meds) and he told me the Trileptal dosage was 3 times higher than it should be, at least as a starting dose. So I cut back to 150mg once a day and all side-effects improved (still have slight trouble with my vision and constipation). So these two changes fixed my energy levels and I am back to a normal schedule for most of the time up at 7, in bed at 11a and sometimes an afternoon nap

Now for the pain, it is almost all gone (for now) using this medication regime:

Pamelor (nortriptyline) - I can take this during the day, but it helps greatly with my ear pain when I feel a twinge of it starting up. Methadone 10mg twice a day (I'm think about starting to decrease it) and then the icing on the cake is Botox injections. Upper shoulders, neck, lower skull and just below the ear that is affected by GN. The 1st dose of Botox lasted me 4-5 months, the second one I had about 2 months ago and it is going strong. We are hoping it will last until December..

Well, there is the long and short of it. The last paragraph is what is helping me the most (for now). I have the most energy and the least amount of pain I have had in 4 years! I just spent a week at the beach was out in the sun and wind, swiming in the ocean and none of that triggered anything more than a twinge of pain and a voice in the back of my head saying don't push it.

I'm happy I didn't have the surgery (God was with me that day!) and kept complaining to my doctors that something wasn't right. Plus I have the most amazing group of physicians who believe every word I say and never look at me like I'm crazy or a drug seeker. (The only person/group that made me feel like a drug seeker was my pharmacy - it took us more than a year for them to realize that I was in pain and not a drug seeker!)

Sorry to be so long, but I wanted to share a bit of my history and what is working for me (right now - it could all change in a heartbeat!)

My heart goes out to all of you dealing with any of these conditions ending in "algia"

6

Please read my profile…I have almost the exact same chain of events. I have an appt. with an ENT that deals with the nerves in the ear, but not until 9/26/2014, so was doing research on my own. I am almost certain I have GN and reading that you started out with “ear infections” really helped me…thank you!

7

My ear feels like it is being ripped off my head.It only lasts a minute or so, but I know it will return over and over. I have TN bilateral. I wear a scarf wrapped around my head and face when there is a breeze- a/c, in a cold movie theater, even in a restaurant. I do not care what people think antmore. After more than 15ys of progressive pain. I am more important than a strangers rude remarks. I have run the gamet of pain meds. Still use morphine about twice a month when I lose control over the pain. We are our own advocates. If a Dr does not help you, find another. I applaud the purple hair. It shows you are still yourself and have lost your identity or your sense of humour. Good on you. I am not TN. I have a condition called TN. Do not become the condition. People are not diabetic-They have diabetes. After many failures I found a Neurologist who listens, looks you in the eye, treats you as a person and most of all helps me control the pain. Injections.RFA , DMV twice, and GK once-all failures after about.six monthes before I found this DR. There is a new drug-Vimpat. expense as all get out, but the first to control the pain without side effects. Every drug causes different effects in different people. Remember purple hair-we are individuals. My hair happens to be grey-but I am 66-what do you expect. I have been 22 three times. Keep your chin up. Consider a small antidepresive like Wellbuterin. It is used for people trying to quit smoking. You are not a nut job. You are going through a very serious painful time. It's a bummer and of course gets you down. But you are not alone. There are so many of us fighting the same fight right beside you. Come to this site and get it out. There are people listening , caring and helping you. Remember when you come to a fork in the road--take it.

8

Update: I went to see a neurosurgeon in Charleston, SC at MUSC that is very knowledgable about TN, ATN, and GN. He confirmed my self diagnosis (thanks to this forum) of GN. I am having a MRI done with and without contrast on my brain on 10/10/14, followed by an appt. with the neurosurgeon. I FINALLY feel like I am getting somewhere. He switched me from neurotin (my PCP gave me a month ago to help me deal with the pain until I could get in with the doctors) to Lyrica.

I also went to a speciality ENT at MUSC that specializes in the nerves in the ear. He confirmed that my ears, hearing, nasal cavaties (camera up my nose), vocal chords, throat, etc all look good and healthy. I also started out with 3 misdiagnosis of ear infections, followed by an ENT visit that said I didn’t have ear infections it was TMJ, followed by TMJ surgery by an oral surgeon…now I finally feel like I’m getting somewhere. I understand your pain completely and it makes me feel so much better just knowing I’m not losing my mind. This forum has helped me immensly.

I’ve also started using Young Living essential oils. If anyone else uses them and has some recipes they would like to share, I would really appreciate it. I would have never believed that they could help, but they honestly do (some).

I’m so happy to have found this group. I hope this finds everyone feeling well.

Danielle



freeSpiritDanielle said:
Please read my profile....I have almost the exact same chain of events. I have an appt. with an ENT that deals with the nerves in the ear, but not until 9/26/2014, so was doing research on my own. I am almost certain I have GN and reading that you started out with "ear infections" really helped me...thank you!