Anyone find it's hard to be taken seriously by their doctor? (Trigeminal Neuralgia)

[badabee]

I believe I have trigeminal neuralgia. I get intense pain in my face upon slight touch. This happens between 0 and 50 times a day. It's agony (I gave birth 3 months ago and this is worse). I have done my research and believe that TN is what I have.

I went to the doctor with this pain. My appointment lasted approximately 3 minutes. He barely looked at me and told me that because I had shingles on my face (over a year ago) that it is probably due to that. It's not the same pain, nor is it in the same place.

I've spoken to a very experienced surgeon (who is a friend, my dad is a gp and he agrees also) that it sounds more like TN and that my doctor should've sent me to see a neurologist regardless, because I'm only 26.

I know they're not my doctors, but I know they're right. I know my doctor fobbed me off. He told me that I can't take pain medication because I'm ebf. He sent me away with no advice at all. I just have to sit here and cry all day. That's all I can do.

How do I get my doctor to take me seriously? I wish I could take my dad with me to my appointment (he trained here but has worked in America doing expedition medicine for the past 1.5 years).

AIBU to ask what you would do? I'm in so much pain on an almost daily basis. I'm very non confrontational and have confidence issues. Do I really need to go in and tell them 'this is what I think I have, and this is what I want you to do'?

I'm stuck... :(

Go to your dentist. They will take this seriously and refer you if needed.

@MinniesMate really? The pain is in my cheek, not my jaw. Can they refer me? Or will they just send me back to my gp? I'm desperate.

You poor thing! I agree that it could be trigeminal neuralgia but is there any possibility that you could have a tooth abscess? Even if you are sure that it isn't it may be worth seeing a dentist as they would be able to rule that out and perhaps strengthen the case that you need to be referred to a neurologist.

I'm a retired dentist. You're much better seeing a dentist about any facial pain. Your dentist would not refer you back to GP but should refer you to hospital specialist for investigation.

@Dungeondragon15 fairly sure it isn't. I only went to my dentist a month ago. I've had an abscess before, it's a totally different pain. The pain is right under my eye. It's awful.

@MinniesMate thank you so much. I'll make an appointment tomorrow!

Poor you, I get this but not as often as you eventually I was told it was probably due to having a sinus operation years ago although I never got any tests done. . The doctor said it was dental, dentist said it was medical.id go back and ask for a second opinion at the g.p. there is a t.n. website that you might find useful, if you have no luck with the doctor then speak to the practice manager and is there a walk in centre near you who might be more helpful. Is there any way your friend or dad could help you see a private gp, Nuffield do this for about 88 pounds, sometimes it's the only way.

Hi op I'm so sorry about what your going through. I suffer with a slightly similar problem. My dentist thought I might have TN, i was at my wits end. My dentist refered me to a dental hospital and they sorted out some medication. I'm not sure going private is an option. I'd have paid anything to be seen asap but it was bus and I had to wait three months to be seen. The dental hospital look at all positive reasons as to why you have pain. You might be able to ring yours direct?? Hth goodluck

fairly sure it isn't. I only went to my dentist a month ago. I've had an abscess before, it's a totally different pain. The pain is right under my eye. It's awful.

I sympathise as neuropathic pain is very hard to cope with. I still think it might be worth going to the dentist as they should be able to refer you.
I hope that you get some help.

I've had it. Thought I was having a heart attack as it went down into my neck. The sad truth is that there isn't much they can do unless there is a nerve being compressed in which case they can operate. Painkillers don't touch it, even heavy duty ones. Morphine doesn't even stop it. Some drugs for nerve pain work although they didn't for me. It's just been a case of riding it out and trying not to trigger it.

I've had tn for more than 10 years. Sometimes it is awful but there are good times too. Unfortunately treatments are not really great though some people respond to medicines. Not me unfortunately. My first neurologist said that it was 'only pain and I ought to get used to it.
Thank you very much.
Hope you get it sorted

My dad/friend seem to think it's rare in young people (not implying any of you are old!) and that in people under 40 they should have a neurological assessment?

I don't know. I literally don't go to the docs unless I feel like I'm dying, and currently I feel like I'm dying!

My daughter 30 has TN , after 2 years of severe pain she was referred to the dental hospital . They gave her a brain scan which led to her diagnosis . They put her on gabapentin which has left her pain free other than the occasional break through. .

Are you near London? If so ask to be referred to Eastman College Dental Hospital in Kings Cross. Your GP will have to refer you, but your dentist should recommend your GP to do this. You absolutely should be referred and treated properly.

My daughter was 28 when she was diagnosed , she was told it was unusual at her age .

It can happen at any age.

As a neurologist's secretary, all I can say is he sees loads of patients with trigeminal neuralgia. I've never heard it being suggested by any doctors that they should see a dentist. I'd go back to the GP and INSIST he/she refers you to a neurologist because of the intractable pain (so you want to see someone who knows all about it).

I do remember having it as a kid, though only brief isolated incidents that never got as far as the doctor.
But I vividly recall saying to a school friend when I was 11, 'You know that lightening pain you get down the side of your face...' it was only when they stared at me that i realised that everyone didnt get it

It's horrific. To hear there's no treatment for me was gutting.

Some people do find treatments that help. Don’t be disheartened

If it persists there may be surgical options that could help if it is TGN.

@Coronapop that sounds terrifying to me

Your dentist or doctor can both refer you to an oral medicine specialist or a max fax specialist as these have both qualifications and are the best to deal with t.n. it's an awful condition, good luck.

Hey badabee, I’m so sorry to hear this. My DH was diagnosed with it about 13 years ago. He would have been early 30s then. He took ALL the meds, some left him unable to work, but he had to, so it was trial & error. Pregabalin, gabapentin & carbamazepine are the ones I can remember.

On a bad day, it was horrific & I can see why it is nicknamed the suicide affliction. He is not a moaner at all & to see the level of pain... Anyway, thank the lord, he got referred to a neurologist & they performed an MVD 10 years ago almost. It was risky but he has no side effects & it never came back.

His dentist sent him back to the GP as it’s not a dental condition. You really need to ask for a referral, or see if you can do something privately. Keeping everything so tightly crossed that you can find something/someone to help xxx

It doesn't always affect you though. It flares up for a few weeks and then you can go months or years without a peep from it.

When it strikes it is hell. It's not dubbed the suicide disease for nothing.