I'm new to the Forum

1

I started experiencing sharp pains in my ear, like the typical Ice Pick in the ear description, in 2009. I went to the GP, who put me on Anti-Biotics for an inner ear infection. After the third time, I insisted that I be referred to an E.N.T. specialist. I waited two months for the appointment.
All the while I had attacks without any pattern nor prediction.
The E.N.T. did an examination, and couldn't find anything wrong, so sent me for a scan. Nothing there either. Oh, and he also took a sample from within my ear, and whatever test it was, came back as okay. He then referred me to a Neurologist. Again a waiting time of a couple of months, and no relief from the pain yet!
It was a relief to have the Neurologist ask if it felt like an ice pick in my ear! At last someone knew what it felt like! He sent me for another type of scan, but said that he couldn't definitely diagnose it as GN. That burst my bubble!. He prescribed Tegretol to be increased until there was pain relief.
Over the following few months, I did experience the side effects of Tegretol. The GP changed me to Gabapentin, and prescribed anti-depressants as well.That cocktail of drugs put me on such a high, I couldn't work, and after a few weeks I went back to Tegretol and no anti-depressants. I could then go back to work, but still had painful attacks, which I tolerated, and upped the Tegretol to 800mg per day.
The GP has now prescribed Pregabalin for when I have pain attacks... The first time I took one, I got so high, I couldn't even walk up the steps!! My lips went numb, I got all rubbery! It was like I was drunk, but the pain was dulled, Note: not relieved. I've had to take them for pain relief, but dread taking them for what they do to me. I'm high as I'm typing this now! Tegretol is now up to 1200mg per day. No shit!
So, last night (this morning) 04:25, I wake up with excruciating pain in my ear. I sat up on the edge of the bed and moaned cried with the pain, real tears. On a scale of 1 to 10, this was 100! I've never had this much pain. My wife got me another Pregabalin to take, and after about 5 minutes my lips were numb. Some relief, but not complete.
In the mean time, I've contacted a specialist, who sympathizes with me, and has referred me to someone else.... The waiting game continues !

Geniculate Neuralgia doesn't have the same support nor recognition that Trigeminal has. The NHS in the UK doesn't even list it under the alphabetical conditions and treatments, so I've emailed a Professor of Neurology, at a private institution. I guess the consultation and procedure will cost an arm and a leg. Have you seen the Medical procedure on You Tube about how they sever the cranial nerves to relieve the pain? You lose +/- 40% hearing, but hell, for relief of the pain, I'll do it tomorrow!.

It's nice to know that I'm not abnormal, and there are others out there who, like me , suffer with this. But it's no comfort to know that others may have the same pain as I do. I sympathize for you guys . All I can say is: Put pressure on your GP, Doctor, whoever , to get you through the to the neurologist, and get it sorted. Holding thumbs!

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Hi! Welcome! I also had the type of pain you describe. It was awful. I had TN and GN on my left side since 2010. I couldn’t function on any of the meds and was allergic to Tegretol. I have a Microvascular Decompression (MVD) Aug and my pain on my left side is gone at this time. I live in the US and Dr Ken Casey did my MVD. Maybe some other people can comment as well, but I don’t believe severing the nerve is the best option, since the nerve can regenerate…I believe some people have ended up in worse pain after having the nerve cut. In an MVD they wrap the nerve with a protective coating to take the pressure off it. Please do lots of research before considering severing the nerve. Glad you found the site. Lots of wonderful people here!

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I too have had almost the same experience trying to find out why I have ear pain with atypical TN. It can not be seen on MRI, this I was told by an ENT. My ear pain is more 24/7 and I do not get the stabbing pain, I did in the beginning. Yours seems typical and I can't understand why you are not getting a dx for GN. Keep trying. Go to another neurosurgeon, teaching hospital, find someone recommended from this site. You will get an answer. There is a surgeon at UMPC doing MVD for GN. This was the only doctor I could find that specializes in it. It is so rare even my neuro did not understand it clearly. Surgery for true typical GN is successful. There is video on you tube showing how it is done. There are several cranial nerves involved that need to be decompressed if there is an offending blood vessel and they cut the geniculte nerve, some surgeons do not cut the nerve, be wary of doing that. You are on all the meds that are always prescribed and I for one am on a batch of them, my theory is they all cause sedation and that leads to less pain, so yes, you get drugged up so your perception of the pain changes. Some here respond very favorable to the drugs prescribed. I hope you get more answers. I am on hold until I present with stabbing pain as no surgeon would even entertain an MVD for me. I am very interested in PNS, which is nerve stimulation but can't find anyone in my area that does it for GN. It is done for TN type 1 and 2. Sharon

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your story is so similar to mine. I started having terrible ,epidodic ear pain in June. Like I have a a terrible earache with stabs of ice pick pain that actually make me cry out. After seeing seversl etns,I was referred to pain management for a trigeminal nerve blovk...made no difference. On to neurosurgery x three docs,none of ehom had ever trested GN. Now I'm seeing anoyher neurosurgeon...I'm on topamax ,amyltripyline, snd cymbalta. Tried tegretol...no relief. I'd go to Pittsburgh in a minute if I could afford it,but there's just no way I could afford the stay.Feeling very hopeless ,but at least my pain is episodic. When the spikes of pain happen, Ive tried taking oxycodone, but it's not enough...so it's off to the ER..not a good solution. Whst pain meds have you tried? Have any worked?

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Hi weird,

I'm in the UK, and our National Health Service doesn't even list GN!! I'm sure I read that the incidence of it in the UK, is 0.0004% of the population. No wonder no-one knows what I'm going through...

So, I'm on Tegretol 2x 200mg three time per day and

Pregabalin 1x 75mg three times per day.

This little cocktail keeps me on such a high, the GP has booked me off work, and forbidden me to drive! But the GN doesn't care about this! On a scale on 0 to 10, where 10 is intolerable pain, I live in a range around 4 to 7 with the too often stab of 100 on the scale! I sometimes feel like pulling my ear off, it's so painful. I can only see the Neurosurgeon on 29 Jan 2014. If only they knew...

Amitriptyline and Gabapentin give me side effect of hyperactivity, palpitations and dizziness, so we ruled them out around 3 years ago. A lot of the meds you write about, I've not heard of in the UK. Pain management doesn't work, the ER can't help me, so it's a long wait to my appointment in Jan. What a Christmas I'm gonna have!

Hope you have a good holiday,

Regards,

Saint Paul


weirddiagnosis2013 said:

your story is so similar to mine. I started having terrible ,epidodic ear pain in June. Like I have a a terrible earache with stabs of ice pick pain that actually make me cry out. After seeing seversl etns,I was referred to pain management for a trigeminal nerve blovk...made no difference. On to neurosurgery x three docs,none of ehom had ever trested GN. Now I'm seeing anoyher neurosurgeon...I'm on topamax ,amyltripyline, snd cymbalta. Tried tegretol...no relief. I'd go to Pittsburgh in a minute if I could afford it,but there's just no way I could afford the stay.Feeling very hopeless ,but at least my pain is episodic. When the spikes of pain happen, Ive tried taking oxycodone, but it's not enough...so it's off to the ER..not a good solution. Whst pain meds have you tried? Have any worked?

6

I’m so sorry for your suffering. My pain isn’t constant, except for during attacks, which last anywhere from 15 minutes to 36 hours. Then the pain is off the charts. They have now given me dilaudud…duper strong opiate for attacks. It kept me out if the er, but I still gad ridiculous pain. I can imagine having a hard time finding research on GN…it’s almost unheard of. Most paoers mention it as something akin to glossopharyngeal neuralgia. Now they have me on baclofen…

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I am atypical TN and GN. It is not treatable with surgery. And honestly, severing the nerve seems very scary to me. I can understand that surgery on Youtube using the padding to decompress a blood vessel from the nerves that are causing the pain. There is some info googling that is pretty good on this, but I can't remember exactly what cranial nerves need to be decompressed..I know for sure the 5th, and then on to double-digit ones, 10th? Then they sever the nerve, the intermediate geniculate nerve...long time since I have researched.

I have been involved in long discussions about PNS, peripheral nerve stimulation or Motor Cortex Stimulation for TN, ATN but have not seen anything for GN. I do not get the stabbing pain, I did at first, mine is constant building in intensity, meds help some and sleeping, upon waking I usually feel my best...however, I have had nights where it was very uncomfortable for me to even brush my earlobes against the pillow. I am looking for PNS. I found a site, www.sjm.com, St. Judes Medical where you can input your zip and doctors that are implanting these stimulators pop up within a 100 mile radius. They are all neurosurgeons or pain management doctors. So, if surgery seems scary, this is something that is implanted under the skin, irreversible, if it does not help. Same problems as with any invasive procedure, risk of infection, leads sometimes need to be moved but overall it is not harmful.

And as far as my neurologist, this is so rare, they really do not know very much about it and how to treat it. My meds are the usual, gabapentin, can't tolerate tegretol, baclofen, and I also take some narcotic pain meds, percocet.

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I got cut off somehow. I just started amytriptiline at bedtime. All my dosages are the lowest mg. expect for the gabapentin, I just increased that one from 300 mg. 3x to 600 mg. 3x

9

So here is wishing all of you some happiness through the holidays but I understand the frustration. I am not doing anything about the PNS just yet because I am severely disabled from failed lumbar back surgery, cervical, and a thoracic disc just herniated where I have a spinal cord injury. Also I went from moderate to severe impingement of the nerves at the lower levels of of lumbar spine which is entirely fused....so, I need to walk to get around to get something done for my facial pain. I get some of these entries to my email and when I see something like the ones where you are so desperate I have to let you know many of us are talking about PNS on another page. Some have had great success....ok, I will take 50% and add my meds I should be doing much better. God Bless, Merry Xmas and Happy New Year! Sharon

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Hi im also new to this forum. I'm 31 from indonesia and have GN(left ear) since around 5years ago. I've tried many form of meds, alternative meds, chinesse meds. But all of em doesn't seem to work. I once got ma neck cramp and cant move it because i consume to much Lyrica at that time, and got a shot(dunno whats in it) from ma neural Doctor to be able to move ma Neck again. And i do have da same mental depression because of da pain like u have.

But i have a method, i discover it myself and it work well on me, its more like prevention. Decompressin ur cranial nerve by Equalizing: a technique used for stabilizing ur ear drum compression when Diving (search da wiki for more info).

Its kinda hard to describe in detail, its like da move when swallowin food, movin ur tonsil muscle, until u hear a pop in ur ears. It really helps preventin da pain comin back, but i have to Equalizing every breath taken(because im too traumatic to have da pain comin back). Da downside when u keep duin this move, it makes ur uvula more swollen.

Hope this technique helps u lessen da pain and da frequent it'll attack.

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Indra, that is what you do when you are up in a plane to pop your eardrums. I get pressure and fullness in my ears from atypical GN. There is a technique I was taught by an ENT, Plug your ears with your thumbs, use your index fingers to plug your nose, then blow up your mouth closed pushing air though to your ears 3 times, let go, and sometimes you get a nice pop and the pressure and fullness decreases. Someone else has a technique going inside your mouth to a place near your ear and massaging it to release fluid that might collect relieving pressure and fullness.

You were easy to understand, I read your post just like the way you might speak in English. I don't know another language, good for you!! Sharon

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Granny said:

Indra, that is what you do when you are up in a plane to pop your eardrums. I get pressure and fullness in my ears from atypical GN. There is a technique I was taught by an ENT, Plug your ears with your thumbs, use your index fingers to plug your nose, then blow up your mouth closed pushing air though to your ears 3 times, let go, and sometimes you get a nice pop and the pressure and fullness decreases. Someone else has a technique going inside your mouth to a place near your ear and massaging it to release fluid that might collect relieving pressure and fullness.

You were easy to understand, I read your post just like the way you might speak in English. I don't know another language, good for you!! Sharon

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I think I must have done something wrong here....I posted a reply but don't seem to find it so will try again. I had the MVD surgery done in 1992 and now after 21 years it has come back ug. I had the 5h 7th 9th and 10th done with the nervous intermedious, section of the 7th sectioned, at Pittsburgh with Dr. Peter Jannetta (retird). I had wonderful pain relief for 21 years!!!! Now it has come back. Thankfully 60 mg of baclofen and 150 2 x day of Trileptal is helping..Thank you Jesus! But....how can the pain come back if the nervous intermedious has been sectioned? I can tell with this metalic taste in my mouth that the awful ear pain is ready to start in...

Jean

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Jean, I also have that metallic taste in my mouth but my ear pain is atypical. A constant 24/7 building in intensity along with ATN too. I started with stabbing pain, not severe, but tmj or jaw pain when chewing. When I did all my googling I passed the GN dx but then found the oral pain, that bitter taste goes with GN. I have posted a lot on this page on my symptoms and meds I take. Surgery is too risky for me being atypical and it has not been offered. Anyway, when I see someone talk about that taste in your mouth and they have true GN, the stabbing pain too I know I am on the right dx for myself. That metallic taste can get very uncomfortable, almost like it radiates to the outside of the face, my face gets cold around the mouth, lip, cheeks and jaw area. I bought some salsa with capsaian pepper in it and that changed that taste, and I did eat it with tortilla chips. Sharon

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Thanks Granny for your reply....I did have atypical trigeeminal neuralgia and the MVD did help when they sectioned the nervous intermedious, branch of the 7th cranial nerve....As I mentioned now after 20 years the pain has come back and IF this Baclofen and Trileptal stop helping me then I will consider another surgery. Somehow...?,,,even tho that nerve was sectioned the pain has come back and NOT as severe as the first time!

Jean