Help and advice please :)

General General TN & GPN (Old Site)
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Hello to Everyone,

I am new here, and had a lovely welcome. I am from the UK and 36 years old.

I have not been officially diagnosed yet and my GP's (I have seen 2!) are unsure exactly if i have TN or not, I am currently waiting on a referral to a Neurologist.

However I am getting increasingly anxious and quite upset about these symptoms and really concerned i have a sinister underlying thing causing these short sharp shocks.

I have the electric shocks, stabs, burning sensations on both sides of my face, not at the same time, but i can have them on both sides within the same day. I probably go about 1-2 hours without pain, this has been going on for a month now. The electric shocks last 1-10 seconds. I have a burning searing pain on the top of my scalp near my hairline, and sometimes my actual eyeball gets the shocks, as well as my lower lids. My forehead also feel like a sizzling hot pin pricks in a line. I basically seem to have every Trigeminal nerve affected both sides, i feel it in my ears, its getting me down now. For the past 2 days inbetween the short attacks I have a dull pressure in both ears, right deep in the ear canal, they feel like they need to pop, but they dont, then occasionally i will get a sharp stabbing pain. i have felt burning sensation up the back of my neck into my scalp. I feel them at the side of my nose, above my lips, below my lips and chin. Also the line of my cheekbone.

My doctors are saying its not consistent with TN, as it rarely presents bilaterally together out the blue, which i agree, so i have convinced myself i have a brainstem tumour, they have said it would have to be a pretty big tumour to present pain on both sides. I feel now i am also getting heavy head, or pressure headaches, which is fueling the anxiety even more, and not sure if i am in a vicious circle and just causing the headaches. My GP quickly tested my cranial nerves on my face with her finger for sensory touch and said nothing is alarming to her.

Did anyone else start off like this? I am wondering if all this is just stress and anxiety and am i bringing it on myself, but I cant imagine my brain would cause pain like this!

Thanks for reading and any input would be gratefully appreciated!

Yvonne

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Have you had any dental surgery, or any whiplash when this started?

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Hi Sconnie, I think that all of these symptoms can be Atn and TN.. But of course you need to be diagnosed by your doctor. When you have a chance you should read the information we have under the Face pain tab. There is a lot of helpful info there. I've had many of these symptoms you have experienced and I am bilateral ATN. Pretty much all of them except for the burning up the back of my neck and I haven't had a shock in my eye..but I have had a stab in my eye and whoah....!!! did not like it! Hope this helps.

Min

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Yvonne: start with our Face Pain Info tab, and read as much as you are able. Although simultaneous presentation of your range of symptoms is unusual, it is not impossible or out of the range of reason. I've encountered several cases over the past 17 years among the 3,500+ patients I've talked with, where presentation was similar to yours. Nearly all of your facial symptoms are classic to a combination of Type I and Type II Trigeminal Neuralgia.

The pressure in your ears may be Geniculate (Nervus Intermedius) Neuralgia, a variation on TN. The burning sensation in your neck is likely a symptom of Occipital Neuralgia. These nerves all branch from the brain stem on two sides, within a few millimeters of one another. Anxiety can produce or aggravate many of these symptoms. The likelyhood that you could be dealing with a brain stem tumor is very small -- and your overall symptoms aren't consistent with that diagnosis. In any event, this is an easy issue to resolve definitively. You need a sub-millimeter resolution MRI conducted under a Trigeminal Protocol (aka "FIESTA" MRI), both with and without contrast agent.

Feel free to follow up.

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

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Hi Richard,

Thank you for your very informative reply.

The last couple of days I have started to get a popping and cracking jaw, i have been to see my holistic therapist who specialises in Bowen massage amongst others, she suffers from TMJ and thinks I have this, i think this maybe in addition to TN, as i am still getting the electric short sharp shocks, but inbetween the back of my neck aches, my ears feel full and hurt, my temples hurt, you may have guessed already I am the worlds worst worrier and still think this is a tumour and its spread to my neck from the brain stem!

I just need to await my referral to a neurologist and hopefully rule out anything sinister, in the interim I am taking Lyrica.

Thank you so much everybody for your kind replies and support

Yvonne

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Yvonne-
I also started with bilateral presentation, & the symptoms were very atypical for the usual TN, but i found out they were consistent with atypical TN. I too feared some type of tumor, but it was not (confirmed by MRI). as Red stated, the more you learn the more confident you'll be on dealing with all this. but a confiremed diagnosis by a physician familiar with TN (and ATN) is very important, keep in touch here for support-we're all here in the same boat. G0d bless you.

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mrl said:

Yvonne-
I also started with bilateral presentation, & the symptoms were very atypical for the usual TN, but i found out they were consistent with atypical TN. I too feared some type of tumor, but it was not (confirmed by MRI). as Red stated, the more you learn the more confident you'll be on dealing with all this. but a confiremed diagnosis by a physician familiar with TN (and ATN) is very important, keep in touch here for support-we're all here in the same boat. G0d bless you.

Hi Mrl, what were your symptoms when you started? Did you get the electical shocks? I just wish mine would go away, and feel normal again! Waiting to hear back from a Neurolgist doesnt help, as my mind continues to wonder to more sinister things

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I don’t have the electric shocks, just the constant burning pain. I started with facial swelling & pain in teeth. then it spread: face, jaw, sinuses. in your NHS I’m wondering if severe pain can bump up an appointment…