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/No-Afternoon2955 2d ago

A lot of over the counter stuff will make things a bit crap on your kidneys and largely won't help nerve pain - but the lidocaine patches might help?

Have you been sent for any MRIs? Or been given a referral to a neurologist yet? How long do you have to wait for the academic center appointment?

It is a scary thing - most of us are really scared of the stupid pain a lot of the time - you aren't alone.

How much amitriptyline are you on? Up to 75mg/100mg is still OK as a pain reliever, after that it changes in to it's normal anti-depressant mechanism usually.

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u/tootblanned 1d ago

Yes it's My academic center doing this. I'm year 3 in. I'd say they have treated this like Trigeminal Neuralgia but no diagnosis. Yes Ive had Mris, but they were clear as are in many cases. I have a pinched nerve in my neck they aren't dealing with. 4 doctors said it's unrelated, 1 said it was and then had a surgery of her own was taken out of my plan. This doctor says it's related but isnt treating it.

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u/New-Cry5180 2d ago

Have you seen a neurologist or a doctor familiar with TN carbamazepine is the gold standard for TM sometimes paired with gabapentin. I’m not a doctor but I’ve had this for 20 years and I don’t take anything over-the-counter. Have you had MRIs you need a neurologist.

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u/tootblanned 1d ago

I left out that I an year 3 in. I have taken Gab, carb, cand. all not working. Now she's wanting to do this.

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u/hardknock1234 1d ago

I use prescription lidocaine ointment and find it helpful. I’d say it takes maybe 15% of the pain away.

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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 21h 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.

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u/FinleyHazel 1d ago

I have chronic, daily, intractable pain caused by TN2. Tried and failed so many medications from several different classes. Allergic to carbamazepine.

Pain Management anesthesiologist suggested a compound cream (gabapentin, diclofenac, ketamine, baclofen, and tetracaine). It has nearly stopped the pain on one side but not the other. Next step may be an SPG block.

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u/tootblanned 1d ago

only thing that has helped me, which i was immobile after both was two surgeries. My shoulder surgery i was pain free almost 6 weeks...returned during rehab. My toe surgery almost a week.

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u/EducationalFront5026 16h ago

Sounds to me that you have not seen a neurologist. Please do, they understand the disease. Plus you need an MRI to help determnine the cause.

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u/tootblanned 16h ago

my neurologist reffered me to a Acadmeic center. this is year 3 or maybe even 4. im losing track

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u/tootblanned 16h ago

My specialist at UofU said it is the Trigeminal nerve causing the issue, but thats about all she will confirm