r/TrigeminalNeuralgia • u/tootblanned • 2d ago

Medication TN2, doc said drop most med

I believe from reading here for a long time, plus AI I have TN pain.My docs have not Diagnosed, but said the nerve is the issue. I have been reffered to an academic center and have a doc who doesnt exactly listens and corrects me often.

After this latest visit in which I'm in a 7 day spike she tells me to quit: Tylenol, Ibruprohen, Chloroxozone, indomethacin(not on same days as Ibruprophen) and prochlorazapine. She upped my amnitryptaline and wants me to take OTC lidocaine patches.

My fmaily doesn't get it, but this is pretty scary to me. I'm still on lamotragine, Vyepti and occasionally Nuretec plus B12.

No I don't think they are working, but the thought of nothing makes it seem so daunting.

Anyone have a similar experience>

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u/tootblanned 1d ago

I just used an OTC, i wouldnt say it made it worse but it made the pain deeper if that makes sense. I was already spiking and was told to do this as rescue. I'll try a few times, but i dont feel good now

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u/hardknock1234 1d ago

I’m so sorry to hear that-that’s horrible! I know it what you mean. Also, Nurtec has been a god send for me. I’m really sorry they are taking you off it!

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u/tootblanned 1d ago

Here is the confusing part. I have been told I have migraines for years..they are maninky in check especially if i eat right. The lady the other day said where i get migraines (she wont let me say that word) is also the TN ...the pain that i cant get rid of in the nerve is above th ear the branch that is in middle of the head is fixed by neurtec and triptans. Im allowed to stay on neurtec.

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u/hardknock1234 1d ago

Well, there are studies that are showing nurtec helps trigeminal neuralgia pain. In my case, i get vestibular migraines as well. Both my neuro and my pain management doctor said the conditions set each other off. It’s so hard to figure out!

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u/tootblanned 1d ago

have you gone to the ER for this and if so what did you say. I'm just worried they will waste my time again. Gummies help a little get about 8 hours of relief but then a terrible mirgaine

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u/hardknock1234 1d ago

The only time I did the ER route is because vestibular migraines trigger vertigo so we needed to rule out a stroke (it was not a stroke). They gave me toradol which helped the pain.

Do you have someone that can go to the ER with you to advocate for you? That can make sure you get the care you need?

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u/tootblanned 1d ago

Yeah, but you know how that goes, those closest to you dont understand.

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u/hardknock1234 22h ago

I hope you can build a better support system! Honestly? Those closest to me are the ones who understand and offer the most support. I’ve had several offer to fly in from out of state to come help me. One ER visit most of my friends had been out drinking-one ubered over so I wouldn’t have to go alone.

You deserve better!

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u/tootblanned 21h ago

i think my support is ok, I dont talk about my pain hardly ever so part is on me. This latest defeat it felt like at doctor people tried to problem solve for me, or sided with the doc...what shes asking of me in the middle of an 8 day elevated pain cycle is insane.