Migraine Drugs for TN

Hello everyone,
I am looking for a new course of treatment lately and I am wondering if anyone has tried any of the CGRP antagonists (the migraine prevention injections including Aimovig, Emgality, and Ajovy) for their ATN/trigeminal neuropathic pain. I found one small study done that showed success in TN patients. TIA!

Hey Liz
Unfortunately, there are a few conditions which can trigger ATN. Trying to pinpoint a cause vs effect can be very difficult. Like many ‘pain conditions’, treatments that can work wonders for one person maybe of very little use to another. I’ve had Dr’s tell me they have the answer, only to find that for me these treatments have not been successful. I had one neurologist who got rather annoyed with me because his miracle treatment didn’t work, didn’t have the benefit.

My personal situation is a little out of the ordinary, in that, I’ve had a few neurosurgeries and my scalp ( and the associated nerves) have been cut repeatedly. This could easily have irritated the Trigeminal nerve in multiple places, triggering my pain. But the fact that I’ve required the operations seems to have escaped the medicos as a source of my pain issues.

My recommendation to you is to try them all. You never know that one thing you may think ‘Nahh, that’ll never work…’ could well be your key, so trial them all. If a Dr suggests a treatment option for me, I investigate ie what are the + and - of the treatment? What are the side effects? Then, if I’m OK with the research I trial it, keeping records along the way. CGRP medications have proven to be highly effective for some people with headache/TN/Pain conditions. It could well be your ‘Key’ too.

Merl from the Modsupport Team

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Hi there! I’ve tried a couple of them and one seemed to decrease the pain a little bit. But not a lot. If your doctors feel the risks are small for you, the potential of pain relief is there.

Jennifer

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Thank you for the response! Yes, I agree. The treatments are all so individual for the various TN conditions. Definitely no one-size-fits-all. I will be talking to my neurologist about the CPRG injections!

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My Duke Facial Pain docs were pushing Aimovig when it first came out …I avoid meds when they are first released b/c no matter how well the studies were done for approval the true test is when the meds are used by population that would never be accepted into a Clinical trial as test subjects.

In my own experience I kept complaining of chest pain related to a new GI med --the Doc scoffed only to be shown up by the drug being pulled soon after for an increase in MIs in people taking it.

Regarding Aimovig there have been cases of Constipation so severe that the affected patients required surgery for relief.

The Researcher rec. Aimovig still thinks its a good med for pain because of its anti-inflammatory effect --but now recognizes anyone with current GI motility issues might not be a good candidate for its use,

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Please let us know how it all goes. Others (including myself) would like to know. Even if it only assists with your management regime, that’s a plus in my view. Another ‘tool’ for you to use. I have a few differing ‘tools’ that I use to be able to better manage, not so much painkillers but rather pain reducers and the more tools you have in your armoury the better your ability to manage.

Merl from the Modsupport Team

Lamotragine has definitely helped with my pain and in some circles there is a thought it helps with migraines too. My pain is no longer torturous and definitely more bearable.

Recently started prochlorperizine for the vertigo element which has helped but not sure it is completely effective for me, so will be discussing triptans in the near future.

Good luck finding what works for you.

I honestly thought I was dealing with TN but I’m not. After having many scans they finally have the answer telling me my jaw is not in line and needs to be corrected by a specialist. They told me that’s what has caused my pain in my face mouth eye head etc… it’s been in remission for 2 months now so I’m not sure if I should see the specialist or not cause she wants 500 dollars for the appointment. Usually things like this are covered by Ohip but she is private and the only one that can fix what I’m dealing with. This is the second time in 5 years a had too go through this severe pain. Nothing helped this pain at all. Lived with it for 3 months and it never stopped. It was 24 7 but for whatever reason, it would stop when I slept. As soon as I got out of bed , it would be with me all day and would not let up. Thank goodness it’s in remission but I’m afraid once I see the specialist in February, she will do something and make it come back again. If it’s not hurting then maybe I should see her when it comes back again. I will talk to her and ask what I should do if it’s in remission. I’m sure she knows what’s best. Good luck to everyone suffering with TN. Worst pain a person can ever go through in life. You can’t even explain the pain.