Trigeminal Neuralgia... Or not? 🤷🏻‍♂️

[Tattooedk]

For about 6 years I've had a tingling, pins and needles sensation along the bridge of my nose & just above my eyebrows. I went to see my GP who referred me to a neurologist who carried out various tests, a scan on my head and all was normal.... With the results, my GP was at a loss 🙄 but put it down to Trigeminal Neuralgia... 🤷🏻‍♂️ My GP prescribed amitriptyline 10mg twice a day. There is no pain, it is more annoying. Has anyone had anything similar? I'd be interested to here your thoughts out there.

[Hidden]

I will just share with you my experience. I was recently diagnosed with TN myself, I have more numbness along the face/jaw and eye area. I sometimes wonder if TN isn't like saying a "cover-all" diagnosis. A good example is I have bladder problems but they just say I have a "bladder disorder", and leave it at that. I am currently on Gabapentin personally and if you want to chat ever, feel free to message me. What is "odd" to me about your situation is that for me, I had an MRI and it showed the nerve hitting against the brain stem or something similar. Since you do not have anything abnormal, I wonder if that is the correct diagnosis.

[Tattooedk in reply to Hidden]

Thank you for sharing your experience. I think you are right that they have used this as a blanket diagnosis. I was hoping that the MRI would bring some answers. Thanks for the off to message, I will take you up on that. ☺️

[Hidden]

Have you also considered getting a second opinion? I know locally where I am the neurologists are terrible so I need to move away to get better help. Seeking out a second opinion may offer clarity.

[Tattooedk in reply to Hidden]

For me to get a second opinion, I would probably have to go private, I would have to be referred by my GP & this is unlikely given that they've already been down this road before. And if I did get referred again, I would only be sent to the same department I went to before 🙄

[DISC]

TMJ is very complicated and has so many symptoms so it could be so. Odd that you have no pain though, sounds like more of a circulation problem. Is you BP okay? Have you had your heart tested?

[Tattooedk in reply to DISC]

My blood pressure has always been normal, again this is something I will have to get this looked at.

[Gigforgig]

Hi

[Gigforgig]

I also take amitriptyline - 20mg at night that certainly helps to a good nights sleep. I take 150mg Pregabaline mornings and 200mg Pregabaline early evening. I was diagnosed with hereditary neuropathy 2006 by a Neurologist. Initially it started in my hands and feet, (numbness, pain, pins and needles and sometimes shooting pains) since it has gradually crept up my legs and arms and has now reached my jaw, nose and cheek bones. The medication helps manage the pain. I also take B12 that apparently helps. Hope this helps you.

[Tattooedk]

I will look into this, it's not something that I have considered before. Thank you

[Matrix]

I have had TN for over thirty years and I will say the pain is so shattering it’s a pain that stops you dead in your tracks you can’t move it’s excruciating .My husband was so desperate he went to see if he could get a chiropractor to help me ,they said the couldn’t help with that pain .I Take tegratol and amitriptyline ?The tegratol is for epilepsy.It works I know when it’s coming I get an eye flicker the day before and I up the dose to full dose .I have never heard of it described as pins and needles but it does all sound neurological in some way ,I’m not denying what your going through but real trigeminal is the pain from hell and it’s dead deep with in your and serves three path ways and for me stops in the dead centre of my chin .I cried for six weeks until it was diagnosed .Hope this helps .😘

[Sam765 in reply to Matrix]

Thid\s is Philip. I am so sorry for your PAIN.

I am 85 and have had PN for 6 years but a much milder form than you.

I was prescribed Neurontin 300 mg which I took 3 times a day. This dose was increased to 600 mg after 2 years. I take one in the morning and one before bed. Sometimes I miss the third capsule, or take it when necessary. I am so lucky.

Maybe Neurontin will help you. I do hope so.

with best wishes,

Philip

[Matrix in reply to Sam765]

Hello Philip, I’m so sorry to hear you suffer also with this ,I was in my 20s when I started with this dreadful pain and my dr said I was very young ,he actually said you poor girl your so young to have this .I take Tegratol and it works well .I’m on a lot of different meds for different things .

Thank you so much for replying I really appreciate that you bothered .Keep safe Philip .🤗😘