Today's CAT scan day.
So far, today, I'm pain free, but the past 2 days have been horrible. Pain from mid-morning til night. I tried putting some warming therapeutic cream on my face, behind and in front of my ear and the pain just from the lightest touch sent me into such bad pain that I went into hysterical crying. It feels like a raw nerve, being stabbed by an ice pick jabbing at my brain. No exaggeration.
fingers crossed for the appt today.
I hope your pain stays gone or minimal. One strange thing about TN is that almost everyone wakes up pain free, but within minutes ot hours, the pain returns. You might want to pit cotton or an earplug in that ear to protect it from wind or loud noises. Yes I sure know the ice pick is no exaggeraion, because that's the exact description of geniculate neuralgia (which is a form of TN.) What is the CAT scan looking for? If your Dr. is looking for the artery that pounds on the trigeminal nerve, he won't find it with GN. GN is a different nerve than the type 1 trigeminal neuralgia nerve. I hope the radiologist knows what he's looking for, the geniculate nerve. Just read a newspaper article about our hospital's radiologist who got 13,000 serious scans wrong this year, and up to 10 times that much in his career. I told my Dr. who was new to my city that I don't trust that radiologist, he couldn't even read a kidney scan, so she sent me to a private radiology clinic instead. Let u s know how it turns out.
That's exactly what's been happening with me. Sleep fine, wake up fine, and then minute or hours later - BAM - there's the pain. It's worse than my monthly migraines, although those are also debilitating, because I know that those at least will go away with meds and rest and darkness. This ear pain isn't touched by any meds - nothing - not even vicodin.
The ENT wants to get my sinuses scanned and have an ultrasound done because in doing the initial exam, she found nasal polyps and wants to determine if they've spread into my sinuses and/or if I have another growth putting pressure on my ear.
She said if the scan shows nothing, then she refer me to a neurologist.
The thing is - I don't have any sinus issues at all. So I doubt I've got any polyps there.
I hope this will be helpful information but I found that sleeping my right side has excuriating effects for my face including my right ear. I no longer sleep on that side. I am hyper-sensitive in my right ear and loud sounds sets off the attachs. When I get out, I keep ear plugs for the loud noises/people.
Bonnie me too. I have to keep foamie earplugs in my purse for noise and wind. It doesm't block the sound, it just lowers it a few decibals.
You can't feel polyps, and if there is one in there pressing on your geniculate nerve, you have an easy solution, just removing the polyp. I hope it is something that easy to fix. Just one medicine doesn't usually help. Remember this pain is one of the most intense a human can have. Vicodin didn't help me, but morphine does. Anti-sizure meds and vicodin is one combination you might try. I was taken off anti-seizure meds almost immediately due to it causing liver problems, but the neurologist can help you with many different medicine combinations and different dosages. there is more than just 1 medicine for this, so don't give up.
achingear said:
That's exactly what's been happening with me. Sleep fine, wake up fine, and then minute or hours later - BAM - there's the pain. It's worse than my monthly migraines, although those are also debilitating, because I know that those at least will go away with meds and rest and darkness. This ear pain isn't touched by any meds - nothing - not even vicodin.
The ENT wants to get my sinuses scanned and have an ultrasound done because in doing the initial exam, she found nasal polyps and wants to determine if they've spread into my sinuses and/or if I have another growth putting pressure on my ear.
She said if the scan shows nothing, then she refer me to a neurologist.The thing is - I don't have any sinus issues at all. So I doubt I've got any polyps there.
Ok, so the CAT scan and ultrasound came back normal. :) Good. I have a sinus infection and the ENT wants to medicate that to see if it helps alleviate the ear pain. If it doesn't, she'll refer me to a neurologist.
I've been pain free for 2 days now. Fingers crossed that it's gone for GOOD.
Good and Best of luck for continued success Achinear. Sincerely, Min
achingear said:
Ok, so the CAT scan and ultrasound came back normal. :) Good. I have a sinus infection and the ENT wants to medicate that to see if it helps alleviate the ear pain. If it doesn't, she'll refer me to a neurologist.
I've been pain free for 2 days now. Fingers crossed that it's gone for GOOD.
I'm not really convinced that the immense pain I feel in my ear is referred pain from what she called a 'low grade sinus infection'.....but, who am I to argue with an MD?
Achingear You have every right to argue with an MD! They all just have their opinions. It's more of an art than a science, and it is not only your right, but your responsibility to be the main caretaker of your health, with your Dr. as your partner, and if you feel there is something else wrong than what your Dr. is saying, you do research or get a second opinion. Many lives have been saved this way. We can't blindly believe the doctors. They have become indifferent and in such a hurry that they are rarely willing to look up something they don't understand to find your diagnosis. Tell her about geniculate neuralgia, eveen pass her a printout from a well respected website that describes GN. My TN is moving around. Now not just my ear and eye and nose and all teeth at once, but my tongue and roof of my mouth. SO FRUSTIPATING!!!
So you have been on antibiotics? Is that what made the pain go away?
achingear said:
Ok, so the CAT scan and ultrasound came back normal. :) Good. I have a sinus infection and the ENT wants to medicate that to see if it helps alleviate the ear pain. If it doesn't, she'll refer me to a neurologist.
I've been pain free for 2 days now. Fingers crossed that it's gone for GOOD.
The pain disappeared, as it does from time to time, a couple of days before I started the antibiotics.
It's been fine until today and for no reason whatsoever, it's started up again - ever so slightly. It's not the debilitating pain that it can be, but no telling if it will end up being that. Usually it starts out this way.
I'm HOPING not.
this is happening to me now!
started with a clogged ear the first week of march...waited a week then saw my doctor and he said my ear was 100% clear..no swelling, no clog, no infection..he prescribed a nasal spray. Last Sunday I awoke from my sleep fully expecting to se someone stabbinng me with an ice pick....horrible pain, didn't leave my bed. Next day I saw my doc again and told him in tears that something was horribly wrong...he again saw nothing, but prscribed me percocet for the painand augmentin and referred me to the ent. Pain became manageable with the percocet, however my ent appointment was this past thursday so i refrained from taking the percocet so I could explain the pain. the ent spent less than five minutes withme and said my ear was fine and that i had tmj and that i needed to see my dentist to get a mouth guard. I broke down in tears trying to explain the extent of my pain...i toldher my inner ear felt like it was in labor. she said if it would make me feel better she would order an mri. great...walk out to scheduling and they say it could be two to three weeks. seriously...i start bawling again .....nothing they can do. Saw my dentist today, he did a full physical touch point exam and a panoramic xray scan of my jaw. Nothing. no abcess, no sign of teeth grinding, no cavity, no out of line jaw. He said I need to see a neurologist and that he suspect TN. Doctor called in a referral to neurologist, and i haven't heard back from them. Rcalled ent office to see if mri was scheduled, nope. I can not continue to live with this pain. I did get a refill of the percocet, which dulls it enough that i can work....sort of....how do i make things go faster? now it is my left ear, cheek area, and traveling down my neck, i feel like i am having a facial stroke. I cant excercise....I can't go the my sons soccer games because of the noise...i wore ear muffs on easter just to keep the noise level down. 5 weeks ago iwas normal! what is happening to me?
Yvette, I'm sorry you have this. I do too. It's called Geniculate neuralgia. Another nerve near the trigeminal nerve, so you probably have TN too. Most who have GN also have TN. A mouthguard won't work on this, so don't pay the thousand or 2 that you will probably be charged. The neurologist will put you on anti-seizure meds and hopefully pain meds. One thing that has helped me (and 2 other generations with this) is Vitamin B, which helps heal damaged nerves. It's best to buy liquid or melting tablets that go under your tongue and sink into the blood vessels there. If you take the pills, stomach acid destroys most of it. I wear the foamy earplug on one side when i go out. I can still hear, it's just a notch quieter and the wind won't get in my ear. To learn more about TN you can go up top to the tab that says "face pain info" then you can look through the topics and click on what interests you. It is really a life changing shock (no pun intended) until you find meds that work. This isn't necessarily life long. I get many remissions, some were for years. You can also Google Trigeminal Neuralgia and Geniculate Neuralgia. One source: http://en.wikipedia.org/wiki/Trigeminal_neuralgia . If you go to the E.R. they will ofen do the MRI right there, but GN won't show up in any scan. It's mostly a way of ruling out anything else. You can call the neurologists office and tell them you are in unbearable pain, and that you need help immediately. One lady here said tpo the receptionist that she doesn't want to go to the E.R. every day until the appointent, is there any way to get it sooner, or be on the list for cancellations, and she got an appointment quite soon. There are discussions about things you can do to help lessen the pain. If you go to the tab up top that says "Forum/Disussions" and type in a key word like "remedy" "helps" "pain relief" etc. Here's one i started, and even those who replued had excellent suggestions. http://www.livingwithtn.org/forum/topics/share-your-little-helps-with The thing I use the most is a rice bag heated in the microwave or those disposable hand warmers that stay warm for 8 hours, and are eaasy to keep in your purse. Still I need strong pain meds. Welcome to the 2200 other TN patients, but I am so sorry this is the club you became paert of.
Kind wishes, Sheila
Don't you get tired of running away from noise? Omg, I use to have to run away from an unruly third grade class in the halls where I worked. Or the sudden, abrupt shrieks that lil girls make when they are on the playground.
I do not think I should have to beg people to turn down the bass. Or go into 15 minutes of an explanation. Why can't they just take my word for it? That noise induces hideous pain.
The kids were very understanding. The adults are so very few and far between.
We use to live next door to a man who has a lawn maintenance business. He cuts grass, lol.
I came home one day to a leaf blower- sounds like a 747! I thought I was going to die right then and there.
I started rattling away in Spanish to his employee and throwing $20 bills at him, begging the bewildered man to shut that contraption up. The worker shut it off. The owner refused to do the yard work earlier. How many times a week does someone have to cut the grass? Egads.
Why can't the manufacturer's add a $2 muffler to these never-ending machines?
How could I make this stuff up?
I can scarcely believe seeing you (all) discussing it! I could not find any info on it let alone people who have suffered the hearing sensitivity, aside from shellshock.
There is a paranoid neighbor that was deliberately blaring the tv about a month ago. He was doing it precisely because I was in pain.
I called the police on him. He does not even live next door. His gf was at her Mom's house.
All I can suggest is educating people at every opportunity.
Sheila W. said:
I hope your pain stays gone or minimal. One strange thing about TN is that almost everyone wakes up pain free, but within minutes ot hours, the pain returns. You might want to pit cotton or an earplug in that ear to protect it from wind or loud noises. Yes I sure know the ice pick is no exaggeraion, because that's the exact description of geniculate neuralgia (which is a form of TN.) What is the CAT scan looking for? If your Dr. is looking for the artery that pounds on the trigeminal nerve, he won't find it with GN. GN is a different nerve than the type 1 trigeminal neuralgia nerve. I hope the radiologist knows what he's looking for, the geniculate nerve. Just read a newspaper article about our hospital's radiologist who got 13,000 serious scans wrong this year, and up to 10 times that much in his career. I told my Dr. who was new to my city that I don't trust that radiologist, he couldn't even read a kidney scan, so she sent me to a private radiology clinic instead. Let u s know how it turns out.
still waiting for neurologist to call and schedule an appointment....still waiting for MRI to be scheduled..... weirdly enough I woke up AND have remained pain free today???? just a little bitty head ache? Crinkling is what seems to set me off, it literally sends shocks of pain searing through me....
What happens if I have the MRI or see the neurologist and i am not in pain?
I'm sorry too, Yvette. This is no kinda fun. :(
Hello,
I am new here also and have had reconstructive jaw surgery. Post surgically, my joints were affected by the operation and also some on the right post orthodontic. I was having severe right ear pain and was referred by the Oral Surgeon to an Ent to check for ear infection also.
Your jaw joints sit right in front of your ear canal and many times ear pain can be an issue with your joints. Migraines are also commonly experienced by people who have bite problems or joint problems as a result of a misaligned bite. There are many people who have sought treatment for their bite via wearing a Maxillary Anterior Guided Orthotic who have been relieved of joint pain and Migraines. Just a thought if you have not been evaluated by a dentist or Oral Surgeon, you might consider this.
The pain in my right ear was excruciating because the joint on my right side was bone on bone. I could not even lay my head on a pillow because it hurt so bad. I was treated with a Maxillary Anterior Guided Orthotic through a Bioesthetic Dentist and have not had any problems with pain in my joints since that time. I was taking vallium at night to relieve the stress and give my joints time to heal and relax back into the socket.
Hope this helps!
Cheers,
Sunshine
Hi all, it's been months now since i've come here with any sort of an update, and unfortunately there's been little to no improvement on my situation. I am not thorougly convinced that I have GN or TN yet, but perhaps I am in denial? I don't know. But, I'm hoping hoping that it's possibly TMJd ...
Let's see.... I've been doing cranio sacral massage therapy. No results. Acupuncture once a week. No results. BUT: last weekend I had the worst flare up EVER as a result of the new treatment the doctor tried on me when he did about 10 needles locally around the right (affected) side of my face and ear and jaw. I had the WORST flare up of my entire experience with this pain. I felt that my face and head were being crushed from the inside, I couldn't lay on my pillow because it hurt so excruciatingly, i was puking uncontrollably, and my husband was driving me to the ER when suddenly the pain dropped from a 10+ to a barely tolerable 7. I told him to turn around and take me back home. When he did, I was able to rest - for a while, then the migraine from hell came with more puking and extreme suffering. All Saturday and Sunday were lost in sheer pain.
I finally understood why they call it the suicide disease. I felt that I was dying, and I welcomed it.
However, I've been told that TMJd can wreak similar havoc, and that misalignment of the jaw can mimic and even instigate TN. SO, I went back to the dentist office where this all started (from an innocent filling) and had them do an Xray to see if the tooth was infected or if my jaw was out of alignment. The dentist said that my jaw is grinding, popping and that my teeth are extremely worn (my molar was chipped).
I asked if they could fit me for a night guard, and maybe they were scared or something because she said 'no' they wanted to refer me to a neuro-muscular dental specialist. ??? which isn't covered under my insurance ????
For both TN and TMJd I've been reading positive results about Upper Cervical Chiropractic treatment, so that is my next step with an appointment on Monday. I have a follow up with the Neurologist later this month, too, since I've not seen her since that initial appt. I think I also should see the ENT again to check up on that sinus infection and polyps - because, shouldn't those polyps be removed? and what if that sinus infection isn't gone?
I just really REALLY don't want this to be TN or GN or any kind of neuralgia. I have plans to travel to rural parts of Asia, and cannot foresee that happening with this extreme pain ruling my daily existence.
What do you think? Could this be a misdiagnosis??