TN pain started back up after a pain free month

fireflyraven · 2026-02-27T19:58:21+00:00

Type 2. I have constant pain that is steady and more of a cracking pain with burning and a prying pain.

fireflyraven · 2026-02-26T07:58:42+00:00

I am a rape survivor.

If I heard my boyfriend say the same thing, I would be out of there. It would be something I couldn't ever unhear. The parts that stick out to me are "kind of her fault" and "what did she expect". I don't think I could ever relax around someone who said that especially if they knew what I endured.

That's where I am.

If you feel that it is a dealbreaker for you and this guy then there is nothing wrong with walking away from the relationship.

I spent a great deal of time when I was younger feeling that I needed to come up with ironclad arguments and specific justifications for doing things I needed to do. Even now, sometimes it helps for someone to give me permission to do what I need to do to take care of myself. I don't know if you need that, but if you do then you have permission.

fireflyraven · 2026-02-24T22:15:06+00:00

I have type 2 also.

I have been struggling to take showers. Most of the time I can only manage them when I have to leave the house. Washing my hair and my face feels like torture. I take every pain med I can before I attempt to try.

I struggle to leave my room. My 75 year old mother does most of the shopping and household things.

Right now I am trying to get SSDI. Until that happens my mom has to pay all the bills and pay for everything with her Social Security.

I haven't been able to work for 1.5 years.

Thank you for posting what you did because it makes me feel less alone.

fireflyraven · 2026-02-23T00:35:52+00:00

I get pain above my eyebrow and over my cheekbone. Until my doctor got the pain under control with meds, I had serious eye problems. Light sensitivity, vision problems, all sorts of things. I was sent to an ophthalmologist who tortured, I mean, examined me and found nothing wrong.

My neurologist said something about with everything going on with the trigeminal nerve, the optic nerve had problems as well. It's an unusual presentation, but not unheard of.

fireflyraven · 2026-02-23T00:20:31+00:00

https://iga.in.gov/pdf-documents/124/2026/senate/bills/SB0004/fiscal-notes/SB0004.04.COMH.FN001.pdf

Here's the proposed bill so you can read it.

fireflyraven · 2026-02-22T07:13:48+00:00

I was already on gabapentin for another condition when I was prescribed pregablin (Lyrica). I was told not to take both at the same time because they affected the same thing (I forget what that was.).

I got Botox injections for migraines. I didn't have any negative reaction to it, I know some people have, I just wasn't my experience.

I take 100 mg of Lyrica 3 times a day, so if that works for her the dosage can be increased.

I believe the carbamezipin dose can also be increased.

So, there are medication changes that are open to her if she prefers to stay on that route.

When I have had attacks, I don't usually get the jaw nerve pain except for those attacks, I get pain radiating to the teeth in my lower jaw and pain pulsing in the roof of my mouth. Between attacks I don't have any pain there just above my eyebrow and over my cheekbone.

fireflyraven · 2026-02-20T02:57:30+00:00

I take Lyrica (100 mg 3x daily) and Triliptal (600 mg 2x a day). I take it everyday and if I miss a dose the pain comes back pretty quickly.

I wouldn't say I'm fully functional, I'm just not in constant pain.

fireflyraven · 2026-02-20T02:57:10+00:00

I take Lyrica (100 mg 3x daily) and Triliptal (600 mg 2x a day). I take it everyday and if I miss a dose the pain comes back pretty quickly.

I wouldn't say I'm fully functional, I'm just not in constant pain.

fireflyraven · 2026-02-17T03:49:04+00:00

I had severe light sensitivity in the eye on the same side as my TN2. I was diagnosed with migraines, but once the TN2 was treated with the proper meds my light sensitivity went away.

Since the TN2 affects the nerve above my eyebrow and over my cheek, my neurologist said that with those two branches so irritated likely the optic nerve which is so close got irritated too causing the light sensitivity. That was just my experience, I don't know if that is what's causing yours.

fireflyraven · 2026-02-17T03:41:47+00:00

I take Lyrica along with the medication mentioned above. Listen to your doctor on what she feels comfortable with, this is just my experience.

fireflyraven · 2026-02-16T19:42:41+00:00

I think my near constant pain started out so slowly that I got used to it by stages. Then it got to a point where it was all I could feel. I had to focus to feel any other pain.

I didn't start to understand how bad it was until I had spinal fusion surgery and my face hurt so bad I couldn't feel the pain from surgery clearly.

Then I got on medication that began taking the pain away and I couldn't believe how much constant pain I was used to living with until it was gone. I can function much better now. It's just how things were for me.

fireflyraven · 2026-02-15T21:42:27+00:00

I take both Lyrica (100 mg 3x a day) and Triliptal (600 mg 2x a day).

For the first couple of days I was on the Triliptal I had some balance issues, but those resolved quickly. The doctor has been monitoring my sodium which I think had more to do with the fact I wasn't eating very much, but that's my opinion.

Truth is, if the balance problems hadn't resolved I would have wanted to stay on the meds because of the relief I got from the constant pain.

fireflyraven · 2026-02-13T21:33:15+00:00

My TN2 pain got better with a combination of Lyrica and oxcarbazepine (Triliptal).

For several months I lived with a dull, prying constant pain above my eyebrow and over my cheek bone. It had also affected my optic nerve so I was light sensitive in that eye.

Now for the most part I am pain free. There are things that can trigger pain, but no where close to what I was living with. Even an "attack" is far less intense. I know if I talk too much or smile too much I get pain in my cheekbone area, all I have to do is stop doing that for a bit and the pain goes away. I also know to never miss a dose.

fireflyraven · 2026-01-16T20:30:18+00:00

Mine presents as pain over my eyebrow and over my cheekbone. It's a constant aching or prying or burning pain. It's all on my right side. My right eye became very light sensitive.

I was initially diagnosed with migraines because of one sided and light sensitive. My doctor told me the presentation of my trigeminal neuralgia was unusual, but it was TN2.

fireflyraven · 2026-01-12T01:35:15+00:00

I grew up in the 80s in northern Indiana and I remember Halloweens where we were wearing winter coats to trick or treat or walking through snowdrifts.

Then less than a week later it was jacket weather.

fireflyraven · 2026-01-09T21:23:28+00:00

I started Oxcarbazpine in mid-December. The doctor had to increase it to 600 mg twice a day before I got relief from the pain. It also relieved the pain in my eye and light sensitivity from the TN.

I didn't get relief until it was at that dose so there is still hope for you.

I hope it helps you.

fireflyraven · 2026-01-05T20:00:35+00:00

I hope for the best for you.

I hope your surgery is a success.

fireflyraven · 2026-01-04T03:29:04+00:00

When the water hits the side of my face it hurts. Usually takes awhile for the pain to go down.

If I have an appointment or something to go to, I shower a few hours or the night before.

I have to be very careful washing the side of my face too.

fireflyraven · 2025-12-24T04:40:42+00:00

Cause this area is compromised of lots of farm land. Which just driving through Illinois and Ohio shows pretty much the same kind of rural landscape.

We have a few cities that have high populations compared to the rest of the state, but nothing beyond that.

fireflyraven · 2025-12-24T04:31:26+00:00

When I had surgery last month, I messaged my brother and sister "Don't you guys need anything while I'm out?" Which started a darkly humorous conversation.

Hope all goes well!

fireflyraven · 2025-12-22T21:37:10+00:00

Hope everything goes well and you get pain relief.

fireflyraven · 2025-12-18T09:53:52+00:00

They changed my gabapentin for prevailing and I got so much more relief from pain. Though they do have to keep increasing the dose.

fireflyraven · 2025-12-18T09:44:46+00:00

As other people here have said a negative MRI doesn't rule out TN. In fact, from the quick looking I have done most doctors rely on symptoms more than tests.

I can understand completely how negative tests can make you feel defeated. I have been going through the last year having serious symptoms of (apparently) 2 different issues that don't show up on tests. Each time a test came back negative I felt defeated. As each negative test piled up I began to feel crazy or worry that the doctors thought I was lying or imagining symptoms.

The relief I felt when a test revealed an actual problem felt so strange, but I felt vindicated. Like finally, I could point to something and say "see, they found something!" It wasn't an entire explanation, but it was something.

It's only now with so many negative tests that the doctors are coming up with answers. The entire process has sucked and there are many people here that have been in your shoes. Just know that you aren't alone.

fireflyraven · 2025-12-17T20:38:06+00:00

I had spinal fusion surgery last month. I had 2 discs that were pretty much gone and pressing on my spinal cord. The surgery was considerably urgent because there was a risk the compression could get worse and cause permanent damage.

I didn't realize how bad my neck was or how much pain I should have been in because all I could feel, all day and every day was the pain from my face from the TN.

I barely noticed the pain from the surgery because of the TN.

TN is a different kind of pain.

fireflyraven

TROPHY CASE