Infraorbital nerve pain--TN or no?

General General TN & GPN (Old Site)
1

Hi all. I have been struggling with a significant increase in a familiar type of pain I’ve had off and on since my teens. The severity and time between bouts have ratcheted up so much, I finally started asking questions because the pain was hard to handle.

I felt confident that it was trigeminal neuralgia, and started seeing some relief from Gabapentin at night and huge doses of Oxycarbapezine (sp??).

Now, all of a sudden, the pain is back, and hasn’t gone away at all for almost 3 solid days.

From what I understand of TN, this just doesn’t fit the symptoms. I’m at a loss for what it could be. Of course, the chronic pain is making me question my sanity, my diagnosis, my treatment, etc.

I spent a lot of time poring over images of facial nerves to try and identify which nerve is the one closest to where I feel the pain, and I’m pretty sure it’s the infraorbital nerve. My pain has been exclusively in the right side of my face ever since these pains started when I was young, and almost always in my nose/cheekbone area. What has changed is how little my eye is now involved. It used to be that I felt like my eye was bulging out and had some runny nose or eye in the mix.

Now it’s only my nasal area and the pain never ever goes away. It feels like someone is sticking a burning poker up my nose. There’s no throbbing, no twitching, no anything, just constant burning.

Inhaling hurts like hell, so I have to breathe through my mouth to keep the pain level lower, but it doesn’t make the pain go away, it just means it doesn’t get worse.

Smelling any sort of odors also hurts like hell, so I can’t shower and wash my hair or use any sort of soaps, I can’t eat any foods with odors, so I usually eat bread or crackers, or other non-smelly foods.

Really strong odors, like cigarette smoke and perfumes in high concentration (like a soap aisle of the grocery store) make it hurt a ton more.

Does this sound like anything anyone has heard of? I feel like I’m crazy, and the pain is just making me lost my mind even more.

I’ve got a not-great neurologist locally, who is the one who prescribed the Gabapentin and the Oxycarb. I have also gone 3 hours away from home to see a neurologist at a big clinic. Both docs agree that my meds are the right ones, but that was before my current never-ending episode. I’m going to call the local doc tomorrow to see if I can get in ASAP, I’m just not sure he’ll do anything more. I have an appointment at another specialty hospital in March (took 6 months to get the call to schedule the appointment!), but if the pain stays like this, I won’t make it that long.

I guess I need to know these symptoms aren’t completely unheard of, and/or that they can be associated with TN.

Thanks for listening. After three days of this, I’m ready to chop my head off.

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Hi Judy CN
While I have symptoms in many other places my pain will hang out around my nose and cheek. Often times this is accompanied by teeth pain or eye pain. Breathing in sure does hurt. It sends a shock of pain right up the side of my nose. And I get shocks for no reason. Hurts like a mf and feels like shards of glass up my nostral. I also become very sensitive to smell, light and sound. Especially if the pain extends up to my eye.
I have flare ups that can last a day, a week or a month. Winter seems to be horrible for me and at this point I don’t think my medication is even working.
I hope that you find some relief or that your pain calms down again.
Jane

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Thanks, Justjane37. In a sad way, this does give me some relief, but I’m sorry to know you’ve got a similar pain. :frowning:

And Ayers, I will ask the neurologist about the connection to my sinuses. My pain often seems to hit when there are changes in the weather, but it sticks around much longer than simple weather changes. But it gives me something else to look into.

-Judy



justjane37 said:
Hi Judy CN
While I have symptoms in many other places my pain will hang out around my nose and cheek. Often times this is accompanied by teeth pain or eye pain. Breathing in sure does hurt. It sends a shock of pain right up the side of my nose. And I get shocks for no reason. Hurts like a mf and feels like shards of glass up my nostral. I also become very sensitive to smell, light and sound. Especially if the pain extends up to my eye.
I have flare ups that can last a day, a week or a month. Winter seems to be horrible for me and at this point I don't think my medication is even working.
I hope that you find some relief or that your pain calms down again.
Jane
5

Many of us have spikes of pain or flare ups weather changes and cold weather.

6

Hi Judy,

I have experienced similar kind of pain. After a lot of research, I have tried on myself some treatments and I got positive results. I am now experiencing almost no pain.

I believe I have reached to the conclusion that the oral medication that dr give us (based on the evidence-based studies that they have) only mask the pain, BUT IT DOESN'T TREAT THE NERVE!

I believe that the pain that we experience is based on some sort of (1) nerve minerals deficiency or (2) pressuring the brain vessels.

Assuming the first case, of nerve mineral deficiency, the solution that I tried recently was applying some mineral rich masks on my face as follows: (1) natural mineral mask from the dead sea mud (clay that is rich in minerals); and (2) magnesium gel, I have been applying magnesium for the last couple of month (I used magnesium gel so it can be absorbed better - magnesium is important component of the nerve system). I also took some vitamins such as B12 and Omega 3. I believe that these minerals and vitamins treat the nerve and feed it with what is missing.

I have to acknowledge that this is my experience, and what I shared is my opinion based on my research and my trials.

Please, don't hesitate to contact me if you have any questions.

Thanks

Mona

7

Thanks, Mona. This is very interesting. Are you taking any of the typical meds along with your own treatment recipe?

I have oral magnesium at home–do you think that could work, or does it need to be applied to the face alone? I have clay for treating my daughter’s hair. I wonder if that would work.

I will investigate more. Thanks for the suggestions!


Mona said:

Hi Judy,

I have experienced similar kind of pain. After a lot of research, I have tried on myself some treatments and I got positive results. I am now experiencing almost no pain.

I believe I have reached to the conclusion that the oral medication that dr give us (based on the evidence-based studies that they have) only mask the pain, BUT IT DOESN’T TREAT THE NERVE!

I believe that the pain that we experience is based on some sort of (1) nerve minerals deficiency or (2) pressuring the brain vessels.

Assuming the first case, of nerve mineral deficiency, the solution that I tried recently was applying some mineral rich masks on my face as follows: (1) natural mineral mask from the dead sea mud (clay that is rich in minerals); and (2) magnesium gel, I have been applying magnesium for the last couple of month (I used magnesium gel so it can be absorbed better - magnesium is important component of the nerve system). I also took some vitamins such as B12 and Omega 3. I believe that these minerals and vitamins treat the nerve and feed it with what is missing.

I have to acknowledge that this is my experience, and what I shared is my opinion based on my research and my trials.

Please, don’t hesitate to contact me if you have any questions.

Thanks

Mona

8

Hello Judy,
I didnot take the regular medication because it only mask the pain and it does not treat the nerve. I decided to go with natural vitamins and minerals.
I believe that the nerve pain is a result of minerals deficiency on some level, if not brain vessel pressure.
This deficiency is in the triguminal nerve only. So, for example, when I did blood test for the magnesium level on my body, it was ok. However when I applied magnesium gel on my face, the pain have been reduced massively. I attached a picture for the magnesium gel I am using. I apply it once a day for about an hour. I understand that this is the face, and I was scared to apply it at the first time, but it really works for me. And it’s only like salt, like Epsom salt, but in a concentrated formate and easy to apply on the face. And acctully its healthy for the skin.
For the mud, i attached a picture for the one i am using. It must be completely natural, filled with minerals, because it’s your face. I apply it for about 10-15min. Not any mud.
Also, I take the oral magnesium citrate pills (easer to absorb) along with this but I didnot notice a difference until I used the magnesium gel (the pain reduced massively), then I used the mud last week (I the pain is almost gone). However, I am contentiuing taking magnesium citrate till now, may be it affect on some level.

Also, last week I did a float in an Epsom salt, it is a floatation therapy. And I am going to float once a week. I felt better.

Please let me know if you have any questions.
15-image.jpeg (1.61 MB)

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Here is the magnesium gel and mud picture. It did not get uploaded for some reason.
14-image.jpeg (1.66 MB)

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Here is the magnesium gel picture. I believe it upload one pic at a time.
13-image.jpeg (1.76 MB)

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I had acupuncture today for the first time in almost 20 years. Got relief from most of the pain for about 3 hours. Doc said it wouldn’t last for long with just one treatment, but it was nice to get a break. Going back in 10 days. Meanwhile, have prednisone from neurologist to try to break the cycle. Then I wait for the magnesium to arrive. Moving forward, trying to feel less pessimistic. :slight_smile: