This is the first time I've ever posted on an online discussion forum, so apologies if I've not posted this discussion in the appropriate area.
I'm really glad I stumbled onto this site in my desperate search for answers. I'm 39, and for the past 10 years I've experienced intermittent neuropathic ear pain in my right ear. I would have about 10 episodes a year and typically, the onset of the pain is mild and starts around lunch time. It progressively worsens during the course of the day, and by evening, it's excruciating. When it is intense, it feels like someone is trying to insert a shard of glass through my ear drum and into my brain. There is always a constant burning ache that is accompanied by sudden bolts of sharp pain. Usually I go to bed, and then when I wake up, it's gone. It's as if it never happened. I think because I know that the pain will be over the next day, that I've just pushed through it.
Over the years I've consulted ENT's, GP's and had an MRI in the last 12 months. The ENT said I would probably have this condition forever, and that there was nothing I could do. The GP treated it as a migraine and offered low dose beta blockers, which did nothing. I was expecting (and hoping) that the MRI would show some obvious cause to my symptoms, but it was normal.
I probably would've gone on putting up with it, but over the last 10 days something has changed. The pain is no longer going away. When I wake up, it's still there, worse than ever. I can't get away from it anymore. And it's making me crazy. I've tried strong painkillers (paracetamol plus codeine) but they just make me feel nauseas and out of it. I hate feeling like that especially when I've got a 2 and 4 year old at home with me. They perhaps take a slight edge off the pain, but it doesn't last and in my opinion the cost outweighs the benefit.
I've spoken with a pain specialist today who has prescribed tramadol and another anti-convulsant which I forget the name of. I've taken both today and I still feel like death.
From my reading, I think the diagnosis of Geniculate neuralgia fits my cluster of symptoms. I've been reading about possible surgical interventions. I was wondering if anyone had tried this, and the result? I'm willing to try anything as I can't go on like this.
Any input or feedback would be greatly appreciated.
It sounds almost identical to mine, I have to say though that the severity of mine increases and decreases sometimes, it's very temperamental. I would be interested to hear if anyone has treated theirs with a procedure.
Temperamental is a good way of describing it. I'm planning on consulting this pain specialist / neurosurgeon this week and I'll let you know the outcome.
Cheers,
Jodi
Jackie said:
It sounds almost identical to mine, I have to say though that the severity of mine increases and decreases sometimes, it's very temperamental. I would be interested to hear if anyone has treated theirs with a procedure.
Geniculate neuralgia may be related to vascular compression of a small nerve known as the nervus intermedius. This small nerve travels between the seventh and eighth cranial nerves (the nerve that moves the muscles of the face and the hearing and balance nerves).
Geniculate neuralgia, which is also known as nervus intermedius neuralgia, results in severe deep ear pain. The pain is usually sharp and described as an "ice pick in the ear". However, it can be also described as a duller burning pain and can be accompanied by facial pain.
Some medications can be effective in treating this such as Tegretol or Sansert. An operation is reserved for those patients who fail medical treatment either because of continued pain or undesirable side effects from the medicines. The operation consists of microvascular decompression and section of the nervus intermedius. Sectioning this small nerve carries minimal side effects.
it's seems like most of all our injuries are related to some nerve injury - or nerve pressered. the location of the nerve causing the diffrent places of pain. and every symptom has a "brand new name" but in basis - most of our problems are the same.
Thanks everyone for your input. I consulted with a pain specialist/neurosurgeon last night. He confirmed that I have geniculate neuralgia. So that's actually a relief. Being diagnosed has given me back a sense of control. I no longer feel like I am completely at the mercy of this unpredictable and debilitating pain.
In terms of management, he has suggested 100mg daily tegretol. I'll see how I go on this. I've taken tegretol before and it's made me very drowsy. He did mention the possibility of surgery, but at this stage I won't even consider it until I give the meds a fair go. For anyone in Australia reading this, my Perth-based neurosurgeon suggested that Professor Kaye at the Royal Melbourne is the guru in this type of procedure.
Just another thought. It seems as if compression of the nerve causes the pain. Medication aims to relieve the condition by 'tricking' the nerve not to interpret this pressure as pain. I'm now thinking about how, other than surgery, you could try to relieve this pressure? Following the history of my GN, I seem to get an attack around 7 days before my period. The neurosurgeon suggested this is not uncommon as some hormones increase vascular dilation (it got a bit confusing here!). I have taken the pill before, but I still get attacks, so I'm not exactly sure of the connection. Anyway, I'm going to do a bit more reading around this.
I live in Perth and was also referred to Prof Andrew Kaye and Neurologist Dr. John King at Royal Melbourne hospital and had two consultations on two different occasions.
I also have geniculate neuralgia. It was confirmed when I had my second MVD. I had a compression on that nerve and he also cut the nervous intermedis. It really helped the GN, I wish I got that relief for the TN though.
Hi Jessy…so nice to hear you are getting pain relief. I had MVD of 9th 10th & 11th nerves just less than a week ago. Although its still very early days, I’m not convinced all is sorted! I guess time will tell! Nice to make contact with similar.
Regards,
Lorraine
I live in Queensland and am currently going through the nightmare of getting a diagnosis from specialists. I live in quite a regional area and getting anyone who knows what they are talking about seems really difficult. I have only seen an ENT so far and have a 6mths wait to see a neurologist. My ENT doesnt beleive me any more about this excruiating ear pain because my MRI came back clear and didnt show any trigeminal nerve compressions.
My GP and ENT also dont believe in Atypical Trigeminal Neuraglia so i am here googling other facial neuralgias but my pain is predominantly in my inner ears (sometimes one side at a time) and pain is mostly set off by noise/ or low vibrations. I am on 300mg daily of lyrica (which only dulls the pain)
My questions to you is was your GN triggered initally by dental work?
Also is your GN triggered by noise and vibration. My ears CANNOT handle V8 cars, planes flying overhead, the refrigerator humming, road noise whilst driving etc etc.
I am at my wits end and cant see how i can make it through another 6 mths to see the Neuro so any help or advice you have would be most appricated
Hi Lorraine, I live in Queensland and am currently going through the nightmare of getting a diagnosis from specialists. I live in quite a regional area and getting anyone who knows what they are talking about seems really difficult. I have only seen an ENT so far and have a 6mths wait to see a neurologist. My ENT doesnt beleive me any more about this excruiating ear pain because my MRI came back clear and didnt show any trigeminal nerve compressions.
My GP and ENT also dont believe in Atypical Trigeminal Neuraglia so i am here googling other facial neuralgias but my pain is predominantly in my inner ears (sometimes one side at a time) and pain is mostly set off by noise/ or low vibrations. I am on 300mg daily of lyrica (which only dulls the pain)
My questions to you is was your GN triggered initally by dental work?
Also is your GN triggered by noise and vibration. My ears CANNOT handle V8 cars, planes flying overhead, the refrigerator humming, road noise whilst driving etc etc.
I am at my wits end and cant see how i can make it through another 6 mths to see the Neuro so any help or advice you have would be most appricated
Kind regards
Renee
Lorraine said:
Hi Jessy..so nice to hear you are getting pain relief. I had MVD of 9th 10th & 11th nerves just less than a week ago. Although its still very early days, I'm not convinced all is sorted! I guess time will tell! Nice to make contact with similar. Regards, Lorraine
I have the same thing, I believe. I am getting diagnosis in June, I tried codeine and i now take piroxicam and tramadol which helps alot, but i still have significant issues. Good luck, is there any updates?
Pain relievers and anti-inflammatories don't work very well for most people with TN. I am glad you are getting a diagnosis.
What other symptoms do you have other than ear pain?
There are lots of medications to try. Medication somewhat depends on the type of pain you have.
Renee said:
I have the same thing, I believe. I am getting diagnosis in June, I tried codeine and i now take piroxicam and tramadol which helps alot, but i still have significant issues. Good luck, is there any updates?
Its mostly constant sharp pain. I have a few of those "shocks" but not very often. If I dont medicate, the pain from the ear, takes over the eye, and my biggest complaint is nausea and dizziness (along with sharp pain). The ear itching kills me too, and if you itch it all h&!! will break loose. Then you irritate the blood vessel and its over... but it itches so much....
I am very frusterated because i got misdiagnosed for 7 years. Went to about 20 doctors, and the ent told me it was "in my head". I spent 5 K on splints and dentists who told me i had tmj, but none of thier spints worked, you would think after a year of adjusting a splint they might thing outside of the box, but no. I would say the zaps are on a level 9-10 pain and the constant pain is a 5-7. Is that about what you feel too?
I'm sorry that you have had such a difficult time with getting a diagnosis. Many people with TN go through this. Doctors generally have very little (or no) knowledge of TN. I also spent ridiculous amounts of money on dentists and received the TMJ diagnosis several times.
Your ear pain sounds far worse than mine. My ATN is centered more around my teeth and tongue but goes up to my ear at its worse. It feels like an ear infection and yes-itchy! The description of your ear pain definitely sounds like what I have heard others talk about on here.
You should post your own discussion about this. You will get more people replying and ask about medication for this too!
Renee said:
Its mostly constant sharp pain. I have a few of those "shocks" but not very often. If I dont medicate, the pain from the ear, takes over the eye, and my biggest complaint is nausea and dizziness (along with sharp pain). The ear itching kills me too, and if you itch it all h&!! will break loose. Then you irritate the blood vessel and its over... but it itches so much....
I am very frusterated because i got misdiagnosed for 7 years. Went to about 20 doctors, and the ent told me it was "in my head". I spent 5 K on splints and dentists who told me i had tmj, but none of thier spints worked, you would think after a year of adjusting a splint they might thing outside of the box, but no. I would say the zaps are on a level 9-10 pain and the constant pain is a 5-7. Is that about what you feel too?
Hi Jodi,
Just read your post which I think you posted 2012.
I have been to see Dr. Kaye in Melbourne a couple of times. My Perth based Neuro referred me there.
Wonder if you can get in touch with me.
Kindest regards,
Lorraine
0431269146
Hi I have had trigeminal neuralgia and had an mvd surgery 13 yeaars ago and was a success. Now on the opp side I am getting this horrid deep ear pain and been to drs 4 times now and all say ear clear no infection take pain killers which dont work, upon reading the striking back book and having TN I have now decided it fits all the symptons of GN. Last week lasted 2 hrs of pure pain with small waves of incresed pain and the same again today. Do these attaks get more and more? Do you have a headache as I seem to have a constant one but am just putting it down to neck pain. I am seeing a ENT on 6 November who will probably give me the story of this is very rare and I am too young, as I had all this before with TN at 21 ! But this time I know the symptoms and as been through it before I am better armed. I cant take the meds as suffered memory loss etc in the past. Do you know if anyone has had surgery for this? Many Thanks....