I dont believe I got the right diagnosis - Pain Concern

Pain Concern

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I dont believe I got the right diagnosis


I've posted a few weeks back that neurologist said I have trigeminal neuralgia. I did try the gabapentin which did absolutely nothing for me. My pain is constant on the left side of my head and my temple feels like it's going to burst. My eye feels like it's being squeezed and my cheek and nose feel tender and tingly. My neck too along that side is always sore as well. Does this sound like trigeminal neuralgia? Has anyone experienced these symptoms. The only time I'm not in pain is when I'm sleeping. This has been ongoing for a year and getting worse. I'm at my wits end feeling like this.

11 Replies

Trigeminal Neuralgia pain is generally paroxysmal and lasts several minutes. I would get another neurologist to confirm the diagnosis. Other drugs are used for treatment as well.Best of luck.


If it’s constant then it doesn’t sound like Trigeminal Neuralgia. But I have this type of pain occasionally when I have colds or any extreme tear production or stress with burning mouth syndrome constantly - so I think Trigeminal Neuralgia can manifest in unusual ways and your neurologist could be correct as it’s their area of specialism.

Have you had a sinus CT done yet or other proper investigations done into migraines etc? I would ask to see an ENT to confirm this diagnosis perhaps.

Sorry you are in so much discomfort, sometimes symptoms can be quite distressing. Obviously you are doubting the diagnosis, and even medics make mistakes. I would suggest to put your mind at ease to ask for a second opinion. I certainly hope your symptoms improve soon , best wishes.

The 'number to treat' for gabapentin is about 6. that means that for every six people that try the drug, it will work well for only one person. So because the gabapentin didn't work says nothing about whether this is trigeminal neuralgia or not. It just says that that drug is not a good choice for you.

See a chiropractor. Neurologists diagnose nerve issues. They do not/may not investigate the causes for the nerve problem.

There is the possibility that there is pressure at the spine which is causes the problem. Worth investigating.

Lakewolf in reply to johnsmith

Not a good idea if undiagnosed disk issues are present. With this, a chiropractic adjustment can lead to paralysis.

I saw a chiropractor for decades until I developed spinal issues. I thought they were miracle workers.

johnsmith in reply to Lakewolf

You are right about this. Hence the need for investigations.

I have a disk problem that a chiropractor cannot cure. The McTimony chiropractor who i see every six weeks enables me to function far better than I otherwise would. The injury I have causes my back to do certain things in response to the injury. The chiropractor restores the right curves to my back during treatment and the whole cycle starts again.

Hence the need for a chiropractor to be trained to know the difference between various symptoms and to know what aids and what hinders for a certain condition that a patient presents.

We sometimes want a cure when no cure can be given.

You say: "Not a good idea if undiagnosed disk issues are present." A good chiropractor who has sensitive hands and who works with their hands (rather than instruments) should have some idea that certain things cannot be touched and work to release difficulties in surrounding areas. This does not cure the problem, but can provide useful stress reduction to enable better functioning. I know my state that occurred without the chiropractor treatment. Three years diagnosis of clinical depression and half out of my head from lack of sleep and pain is not a good state to be in.

No one size fits all. We need to have tools to investigate ourselves and determine what is beneficial and what is not. It is not easy and I still am having to feel my way in this. A person who is well has no idea what a long term health disability does to one.

Any useful constructive critical comments will be most welcome.

Lakewolf in reply to johnsmith

I wish chiropractors today were trained in massage therapy, like my first one was.

One caused me more pain than he helped. Worse than an allopathic doctor —& that’s saying something!

I have trigeminal neuralgia, mostly controlled by Lyrica.

For me, it feels like somebody stripped a power plug, taped it to my face, & plugged it in.

Gabapentin did very little to help it.

Did you get a diagnoses. You are very much describing my wife's current symptoms and we still don't have a solid one.

Ive gone back to that neurologist a few times and they set me up with physical therapy because i still insisted the pain first started in my neck. It did give me some relief. I am not taking any medication for it. I will say its not as bad as it was. Either that or Im used to it. I still dont feel like its back to normal feeling yet.

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