Trigeminal and occipital neuralgia or a simple dental problem?

I have just been discharged from the hospital, where I spent 9 horrible days on the stroke unit, surrounded by elderly patients making lots of noise... It was my husband who brought me to emergency after I had been struck by lightning. Or at least that is what it felt like. I was brushing my teeth and, all of a sudden, I felt this electric shock type of pain inside my teeth shooting up towards my left ear. It totally freaked me out. After that, I had ongoing attacks of stabbing pain inside my cheek and underneath my left eye, which left me crying in despair, which is why my husband put me in the car and drove me to the nearest hospital. Mind you, the pain always gets a lot worse when I am sitting in a car and I also get horrible motion sickness...

Now, you must know that I have been experiencing this stabbing pain underneath my left eye, inside my ear and at the back of my head for nearly 8 years now. It was diagnosed as 'cluster headaches' by my current neurologist. I am also suffering from chronic migraine: throbbing headaches, accompanied with nausea, blurred vision and sleepiness, way less painful than this thing that has now taken possession of the left side of my head and face.

I have also been having a needle-like and burning pain on my scalp. Taking a shower has become torture. Simple tasks such as chewing my food, brushing my hair or my teeth or even talking have become huge challenges too. The whole left side of my head and face is hyper sensitive. This particular 'flare up' has been going on for several weeks now (22 days to be precise) and I have no idea when it is finally going to end. It seriously affects my mood. I cannot move. As soon as I move, it gets worse, so I simply keep as still as I can, which means I am stuck in a prison of pain and now in a prison of painkillers and medication.

At the hospital, I was treated by three different neurologists and I was given three different opinions.

Neuro #1: diagnosis 'trigeminal and occipital neuralgia and migraine', treatment 'circumferential nerve block, endone, panadol, keppra, simvastatin, chlorpromazine', result: 'about 12 hours of sweet relief and extreme numbness', as well as a bald patch on the back of my head, which, luckily, can be covered by the rest of my (very long) hair (my pride and joy).

Neuro #2: diagnosis 'trigeminal neuralgia type 2 due to overactive ions in the back of the brain (no compresssed nerve to be seen on MRI scan, so no surgery needed)', treatment 'lyrica, panadol, endone, simvastatin, riboflavin', result: 'no relief whatsoever', huge disappointment due to neuro's dismissive attitude.

Neuro #3: initial diagnosis 'trigeminal neuralgia', treatment 'lyrica, topamax, endone, panadol, pregabalin, temazepan, simvastatin, riboflavin, colecalciferol, result: 'none'.
later diagnosis (after ordering a bone scan) 'slight nerve inflammation due to bone inflammation and minor dental problem or mild sinusitis', result 'discharged from hospital and referral to (hugely expensive!) bone and maxillary surgeon'

Conclusion (after leaving the hospital asap, getting very upset and angry, crying my eyes out and calming myself down again):

Have made another appointment with my primary neurologist and my favourite dentist (whom I see very regularly!) to get a second opinion on the bone scan (which contains one single and extremely vague line that says 'MILD maxillary uptake that could possibly be associated with either sinusitis OR dental pathology').

Feeling extremely drowsy at the moment, as the ward doctor kindly provided me with enough analgesics to knock out about 70% of the pain (and the patient).

I must add to this summary that both the ward doctor and the assistant neurologist do believe that I have trigeminal neuralgia, just like neuros #1 and #2, whereas neuro #3... well, I don't know... what do you think??!

Do I have a dental problem?
Is there such a thing as 'bone inflammation'?
Do I really need 'bone surgery'?

Since I only had three days' worth of discharge medication, I had to go and see my good old GP yesterday to pick up some prescriptions. He asked how I was going because he had not seen me since I had undergone a total thyroidectomy (due to two large tumours on my thyroid but that is a different story...), so I told the whole story, included the one on my latest stay in hospital.

He examined me, asked me about my symptoms and diagnosed me with trigeminal and occipital neuralgia, without much further ado...

He said the meds I am currently taking are perfectly fine but need to be further increased. He also said that Tegretol is an old-fashioned type of treatment and that the combination of Lyrica and Topamax that I have been put on is much better?!

He also said that this TN thing would eventually disappear...

And that, if it would not simply vanish, there were other medications I could try or other options, such as surgery...

Anyway, I will be seeing my primary neurologist next week on Tuesday, so I am really looking forward to discussing all of this with her.

I have also booked an appointment with my dentist/orthodontist to rule out the possibility of a TMJ disorder (which I might also have, according to neuro #3) and with my integrative doctor (to discuss alternative treatments).

Please feel free to comment and/or share your thoughts with me.

Thanks for reading all of this and take care.

I would really like to know what your doctors end up saying and what happens at your upcoming appointments please let us know. I hope you do get some answers. I know how hard it is and your story can help others who are in search. Thank you

Also by bone scan do you mean cat scan? If not what was done for this bone scan? Thanx

Hi Jennifer and other TN friends,

I went to see my primary neurologist this morning, whom I have been consulting for nearly two years now due to 'chronic migraine and cluster headaches' (her diagnosis).

It is NOT a dental problem (any type of scan, bone scan or MRI scan always concludes I have either sinusitis/sinus disease or some sort of dental pathology, whereas I have none of the sort!)

It IS indeed trigeminal and occipital neuralgia.

This was confirmed by my neurologist.

She said the diagnosis by neuro #3 was 'utter nonsense', as there was no sign of infection anywhere to be seen: no fever, no discharge, no sign of infection based on any of the blood tests done at the hospital and he should have checked that!

The other two neurologists were spot on with their diagnoses of TN and ON and migraine though.

My neurologist was very pleased to hear that the pain in my arms and legs (that I had been experiencing after my thyroid surgery due to hypothyroidism) had completely disappeared thanks to switching to natural thyroid extract.

She was also happy to learn that the circumferential nerve block, performed by hospital neuro #1 worked so well, that I have not had a migraine in four weeks now. Unfortunately, she said, this type of procedure, usually only works for 6-8 weeks, so she proposed to treat me with Botox injections again (I have had two rounds already!) once the migraines return...

She told me to (gradually!) drop the painkillers (yikes!), especially Endone, and to (again gradually) increase my dosage of Lyrica over the coming weeks to 600mg daily and Topamax to 100mg daily...

If this clever combo of medication would not help to relieve the pain (which always gets worse during the afternoon and really hits me in the evening, torments me on and off, erratically moves around from around my eye, my temple, inside my ear, my cheek, from tooth to tooth), then my lovely neuro has something else up her sleeve: a new treatment that she has just heard about during a conference that she attended last week.

It is called 'indemethacin' and, according to my neuro, it is available as an injection to patients who have private health insurance. Unfortunately, I am not that privileged, as I have a pre-existing condition, so it would only be available to unlucky patients like me under the form of a humble capsule...

And if this new treatment would not be effective, there is always the good old 'tegretol'.

However, apparently, tegretol has numerous nasty side effects, such as nausea and vomiting. Rather unpleasant.

As for surgery (MVD), within the public system (of which I am an unfortunate member), one only becomes eligible for surgery if and only if one has tried at least 3 or 4 different anti-convulsants (so far I have tried amitryptiline but not for TN and I am currently trying topamax and lyrica) and/or a compressed nerve needs to be visible on the MRI scan.

I did have an MRI scan during my first hospital stay and it was... completely clear, but then, as you may know, a compressed nerve may not always be seen on the MRI scan!

One may also become eligible for surgery after suffering severe side effects such as extreme drowsiness and other nasty side effects from the meds over a period of several months and/or after suffering horrible TN pain due to the said meds not working well enough and this also over a period of several months.

One will then be put on a VERY long waiting list of 6 months or up to 1 year before being able to undergo an MVD.

In other words: this is no life.

It is clear that more suffering is awaiting me and it totally freaks me out (okay, it could also be the Endone).

No, seriously, this is a MONSTER and it is going to eat me alive.

There are no words to describe this thing.

I am sure you very well know what I am talking about when you are suffering from TN and/or ON yourself.

There is no other way but go forward and to get through this.


I don't know how.

I just hope the meds will work for me!

I still have that appointment with my dentist/orthodontist tomorrow though.

I will keep you posted.

Take care.

So I went to see my orthodontist/dentist this morning in order to exclude any type of 'dental pathology', as instructed by one of the hospital neurologists (based on the bone scan).
She thoroughly examined my teeth and mouth, did some further tests and concluded that I do NOT have any of the following:
- TMJ disorder
- peridontitis
- bone inflammation
She then confirmed the earlier diagnosis of trigeminal neuralgia, wrote a whole report about it, is going to send this - very detailed - report to my other doctors and to the hospital and she is also going to provide me with a referral letter to a collective of researchers on facial pain/trigeminal neuralgia right here in Sydney, at the Royal North Shore Hospital.
Before I left, she gave me a big hug and said:
"Don't give up, it might just disappear and, if it doesn't, there is always hope."