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... :(

I so wish I could go private but I've just had a (very expensive) baby and my bank account is suffering slightly. I'm going to ring and see if I can see a different doctor tomorrow...

Absolutely do that. Even more now than ever your baby needs you, & the last thing you want is this time to be marred. I think an MRI was what revealed DHs diagnosis. Good luck x

I had it age 16-18. My wisdom teeth caused it. I had many doctors and dentists tell me (and my parents) that I was imagining it.

It was by chance that I had a brilliant dental surgeon who believed me. She took my wisdom teeth out (no room for them and one was impacted and twisted), she said it was unlikely to cure it but she had a solution if it didn't.

It didn't work, but she put me on a low dose of nortriptaline for six months, the pain was gone in a week. I then reduced the medication down each month from month 7-12. And it was gone.

I only get a flare up if I've got a cold.

Definitely get a dental referral or go to your nearest dental hospital as a walk in.

Good luck 🤞🏻

I was diagnosed under the age of 40 (in fact I had an MVD shortly before my 40th birthday which worked well for me) but my GP recognised it straight away and was very supportive.

When my TN started it was in all three branches from the beginning and I never got any remission until I had surgery. I did treat it with meds.

Are there any other GP's at your practice or can you change practice? Or go to a walk-in/minor injuries clinic - or A&E when it's bad?

There is a FB group for sufferers that may be helpful. I mentioned surgical options because I know someone who (after many hugely painful attacks) had an operation at a specialist centre which appears to have resolved the problem. The operation was called Microvascular decompression and was done after an MRI scan confirmed the source of the problem (maybe a blood vessel next to a nerve?).

Thought about you lots since your post Badabee. Have you managed to get an appt yet? X

Coronapop, that’s what my DH had. Thank god. I honestly don’t know where we’d be now if he hadn’t. He has another condition which caused it though, Mixed Connective Tissue Disease, and this caused the vessel & nerve to fuse together :-/ Horrendous. They had to put a Teflon pad in his head to stop it re-fusing.

Have you had any joy Badabee? Xx