Foggy's "Invisible Illness" Support

Trigeminal Neuralgia, any advise?

After suffering severe pain on right lower side of my face for about a month, I've been diagnosed with Trigeminal Neuralgia. I suffered an episode last spring, but after two weeks it passed. Then just before Christmas it came back, only much more painful.

At first I thought it was tooth ache, saw my dentist, who took X-Ray. He could find nothing wrong, but prescribed a weeks course of antibiotics in case there was infection.

During this time I was taking pain killers like sweets, but nothing helped. I went back to the dentist a week later. He said there was nothing he could do, and advised me to get a second opinion, and seek private specialist help.

I had to take my granddaughter to the doctor, and whilst there mentioned the pain I was experiencing. She prescribed stronger pain killers, but said I needed to see a dentist.

I saw a new dentist for a second opinion, she also could find no cause for the pain, which was still bad. It also wakes me during the night.

It was then, thankfully that my husband did a bit of research and came up with Trigeminal Neuralgia. After much persuasion I went back to the GP. I saw a different doctor, and after listing my symptoms, he said it sounded as though I had Trigeminal Neuralgia.

I have been prescribed Amitriptyline, to see if it helps. He did name other drugs, but said he'd like to try this first.

I wondered if anyone else had used this med to treat this condition, and what else I could do to help? At its most painful it reduces me to tears, it's like a stabbing electric shock, and lasts between a couple of minutes to 15 minutes, then in between I experience a dull throbbing.

I'm not sleeping well, can't eat without pain. The painful episodes are becoming more frequent. Any advise would be gratefully received.

Thank you.

8 Replies
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Hi Coppertel, that sounds pretty much exactly like what happened to me. Went to the dentists, was given antibiotics nothing worked then the doctor mentioned TN by which time I'd pretty much decided I had anyway. I was on Amitriptyline at first but didn't do too much so went back and the GP prescribed carbamazapine. Took a while to work but it has done, so I think you should go back again. Not ideal being on all this medication but TN is so painful and when you're not sleeping things are even worse. Get back to the GP. Good luck

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Thanks for your reply Spud. Yes like you was relieved when doc diagnosed TN. Amitriptyline seems to be doing something now I've increased the dose. Still in pain though so seeing doctor again tomorrow.

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How are your B12 levels ? Anything under 500 can present as neurological. I have weekly injections to help with nerve pain after spinal surgery ....

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Thanks for your reply Marz. Seeing my doctor tomorrow, so will mention B12.

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From reading on Thyroid UK and the PAS Forum over many years - the knowledge a GP has about B12 is minimal and often disregarded - sadly. You could be lucky of course. Take a look at the link below which lists all the neurological symptoms of low B12 - and the whole website is interesting. Check out the videos under the heading Films to understand just how serious a condition it is ....

b12deficiency.info/signs-an...

Scroll down in the above link to view ...

I would ask to be tested along with Folate/B9 - as they work together in the body. Check VitD too as that is an anti-inflammatory steroidal pro-hormone - so more than a vitamin.

fpa-support.org/neuropathic...

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Hi - avoiding carbamazapine with acupressure. In remission at least. Worth a try for you? All best.

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Hi Coppertel, I was diagnosed with Atypical trigeminal neuralgia bilateral (both left and right). This was 4 Years ago whilst living in the states; I’m now back in the UK. I went down the medical route, ENT, Neurologists, extensive dental treatment, I.e. endodentist, dental surgeons, ct, MRA and mri scans. They thought I may have MS but could not find anything. I was on meds including, anti-sickness and anti epileptic drugs (common for this type of diagnosis) Gabapentin...so on. My outlook was grim and I thought my life was over at the age of 38 with 2 young boys. I eventually thought I need take another outlook and did some research. My search found an Upper Cervical Chiroprator (only 2 available in the UK). I gave this a try with nothing to lose and it was nothing short of a miracle. My head pain reduced my eye pain left me the nausea left me and the tingling on the right side of my body left me. The thing that stayed with me was the tooth pain on the right side of my jaw. I was told by the Chiropraor in the UK that I would not hole my adjustments due to my teeth alignment and he put me in touch with a VERY specialist dentist. He once again was nothing short of another miracle. After 1 and half years of tooth pain it had left me. I am now back in the UK under another VERY special dentist who has been treating me and my symptom have almost disappeared. It certainly hasn’t been a quick easy fix, in fact there have been times were I thought this is not working but when I would go back to my dentist and he would adjust my jaw I knew the colleration was there. It has also been quite an expensive approach but I have been blessed with finding this treatment and it has certainly worked for me and also people who come from all over Europe to seek his treatment. Please don’t give up and look for other avenues of treatment. The medical approach works for a lot of people but also doesn’t. I hope you find salvation and don’t give up. If I had I dread to think where I would be now.

Best wishes to a pain free life

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Hi Coppertel, i cant offer too much advice with regards to TN however i have been suffering from atypical TN since 2014 which i medicate with 6x500mg gabapentin per day. The pain i have is constant and the meds are adictive and make me drowsy all day. The treatment helps to manage the pain at the moment but is progressing quickly.

Like yourself it was difficult to get a difinitive diagnosis through the usual dentist, doctor then self diagnosis finally pressured neurosurgeon to give me an mri scan. Results showed two busted blood vessels upper rhs with surgery the only prceedure after medication becomes usless.

You are going through hell at the moment i feel your pain hopefully you get the correct medication to suit your needs. I was taking nortriptyline with gabapentin to settle my nerves as it became stressful before during and after pain maybe thats something to consider.

Regards Alan

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