Trigeminal nerve pain - winter cold

Well I have not been on this site for a while, but I thought I would write because it is winter again. That means cold, which really means bad face and teeth pain.

Every year I forget how bad the pain can get during the winter. As most of you know, pain meds don't really work for the pain. They only shut off your brain for a bit, but in the long run I found them to make the pain worse.

I now see a specialist at USC. He has given me a special compound prescription for my face and gums. This has been my best source of a little bit of pain relief. If you have this type of pain, please send me a message and I will send you the information on the compound medication I use. I also use something else for really bad pain days.

Today, I'm trying to keep a good outlook. I have good and bad days. Mostly they are good, depending on the pain level, I am usually a 3 to 4 everyday. It's when the pain goes up from there, which is in the winter time. It's is also bad when I get these incredible sharp cutting pains. It's like someone is taking a knife, cutting into face and pulling it apart. Like scooping out. Just hideous. Also, the cold sometimes seems too much to handle, but I always keep scarves everywhere, just in case.

I just wanted to write this morning because I have been sad lately and needed to get things out there. I know this will change, but it is just going through it is the tough part.

Just writing this is already helping me. I hope all who are out there with this type of facial pain can get through another day.

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Have you been diagnosed with Trigeminal Neuralgia? Just wondering because I have and suffer when cold air touches my face as well. It will almost always bring on an attack that is pretty severe. Now you will almost always see me wearing a scarf wrapped around my head and covering my face for sure. I feel your pain so your not alone as many do here as well.

FYI-You might want to change your post to "shared with members" instead of the default "shared with the public" because anyone searching on the internet can see your post if you don't, and you may get more responses if you do.

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Thanks for support. Somedays I need it.

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Yes I am all to familiar with that pain. It's always occurring in my throat. I tell my husband there's a little guy with an ice pick climbing up and down my throat. Nothing takes pain away. Im told glossalphyengeal neuralgia I'm in middle of bad flare up right now. Hopfully it will calm down before christmas but history says about five or six days before it does. Then totally exhausted from being in pain. They give me nothing for flare ups and I take gabapentin daily which has helped some.
I am curious what they give you to control your pain. Maybe I could mention it to my pain specialist. Let me know.

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I'm allergic to gabapetin, so I currently take zonegran, which has done not to much. But I do get from my pain management doctor two special compound medications, one I use on my face (4 - 5 times a day) and one I use on my gums (10 - 15 times a day)? The face gel is 10% Ketamine / 5% Lidocaine / 10% Ketoprofen. The mouth gel (which works the best) is 10% Ketamine / 5% Lidocaine.

I use the mouth gel before and after I brush my teeth and anytime the pain in my teeth gets bad. It's not really my teeth, but the Trigeminal nerve. My nerve, unfortunately, was permanently damage by a surgery that was botched. So I'm stuck with this for a very long time. The gel is the only relief I get, and it's not a total relief but it helps some. I stay indoors for the winter months. Everything is even ordered online. Can't handle any cold on my face. I try to get out at least once at week so I don't feel so lonely.

Pain meds don't do anything for nerve damage. All they do is shut you down emotionally, which sometimes can be a blessing. But, I have found out that in the long run they have made my pain worse with the more tolerance I had to them. So this new doctor told to get off them and start fresh with what he is currently giving me.

If your doctor wants more info my doctor's name is Steven Richeimer. He runs the USC Pain Clinic in Los Angeles. He has been my saver.

I wish you well and hope that you find some sort of pain relief.

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Higher doses of Pantothenic acid B5 helps a lot with nerve pain, I take 500mg to 1000mg per day for feet and lower back nerve pain.

Whether it would address your particular issue, I don't know...but you could do a google on this B5 and your issues..

I live in Santa MOnica too.

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Thanks. I'll look it up. I already take super B complex and omega 3/6/9 which also help nerves repair. My Trigeminal Nerve (5th cranial nerve) which controls the nerves on the face is damaged due to a botched surgery. So I have constant face and teeth pain. It's not really the teeth, it's the nerve that makes it feel like its the teeth. I also have a deep brain stimulator, which helps with a little of the pain.

Also, they make a stimulator for the back. I found that out watching Larry King one night. Jerry Lewis has one in for his back. He said it has made a world of difference for him, but everyone is different. The guy who does the surgery for the back stimulator is Dr. Michael Ferrante and he is in Santa Monica.

Just for me with a deep brain stimulator, it is not something that I would recommend. I don't know how that back stimulators are placed, but the brain ones are a bit tricky. Unfortunately, I got an infection in my brain, which made things much worse. But I'm all good now.

Sorry about your back. I hope you can get some relief, at least for a brief period of time. It's nice to know that there is someone who is my city.

Happy holidays!

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Thanks sin1sin. I do on some occasions where I really hurt have the side of the face pain and my teeth hurt. I just want to pull every one of my molars out. It just absolutely drives me crazy. Then the pain goes up the side of my face and into my hair and its hurt to even move my hair. My favorite side to sleep on is my left side that's the side that I had my tonsil cancer on and surgeries on now when I sleep on that side I wake from pain and then it feels really funny and hurts. But it's my favorite side to sleep on always has been. I do have issues with my meds they makemedizzy even though I am not on a high dose. I end up taking 600 to 700 a day based on the pain level. Anything it seems that I eat sets off the nerve. Hard things cold or hot things. Chips, bread anything that is not a messy consistency. And if I don't swallow with gravy or ranch dressing I have a hard time eating. It has to be a certain way for me to get it down and then I usually drink right afterwards. Windy days really dry days and really cold days they all set it off. A major set off is when i talk for a long time. Thats when the ice pick feeling starts. It seems like life sets it off. I'm in the middle of a bad episode right now and will probably last 3 more days as history has been for the past 4 years. That takes me till after Christmas which is my ultimately favorite holiday. I'm really pissed that it happened now and not waited till a few more days. I'm going to be really slow cause I just can't think straight when I'm in pain like this. It's going to ba a long night tomorrow getting ready for Santa for my little girl. Anyway any ideas for controlling pain would help out tremendously I really could use some advice

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on the omega 3/6/9, I only take Omega 3...somewhere in all my travels, found that 6/9 gave me more pain. just an fyi on that one. jam

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I just did a search for Trigeminal Neuralgia Pain & Acupuncture, then did a search for the same thing and Prolotherapy, and then the same search for Mesotherapy AND found hits for all 3 protocols for this nerve pain.

I have a wonderful holistic rheumy here in SM who does all 3 of these protocols and I've had them all done at one time
or another and currently still do them with this MD.

I have pain issues over MOST of my body but not the area you deal with BUT......why not look at these.

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Hi Jamin
Have you tried acupuncture?

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I went thru 16 sessions of Acupuncture, 1 per week....and got nice relief...

But found Anatabloc and started on it 1/8/2013 and feeling SO MUCH relief...

Nerve pain is also inflammation...chronic inflammation is destroying us and
Anatabloc attacks and reduces inflammation..

I have a long journal on my Anatabloc journey....jam

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Hi there,
I am in pain 24/7 and there is never any relief. I had gamma knife on left side in December, but I am really atypical which is a wastebasket term for horrific constant facial pain. My family does not get it; I am in counseling. I am still here and pushing on. I have to go babysit my grandson today; he is keeping me "hanging in there". My hope is that some day chronic pain sufferers won't have to suffer. Facial pain is tough; trigeminal are brave brave brave. I feel your pain and it may not be as bad as yours! You are brave; we are all brave. one day at a time; one hour at a time. I have not actually written on this sight but your post caught my eye. How can we get help? I am not sure, but sharing information is a great start. Take care.Sandy

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Mele, I'm sorry you have joined the club. I have trigeminal neuropathy from a dental surgery. Doctors have warned me that any surgery can and likely will make things worse. While the typical trigeminal neuralgia (intermittent pain caused by a blood vessel too close to the nerve) can be helped with surgery, the neuropathy (constant pain caused by nerve damage) is usually made worse with surgery.

You are so right, people just don't get it. For me the pain feels like someone is drilling an auger into my face. There is no way to ignore it, it eats you up and spits you out. My grandchildren also keep me going. If you don't have a pain specialist, make sure you find one. I take a cocktail of medicines that have helped me, but it seems that everyone has to find their own combination through trial and error, which is why you need someone to work carefully with you.

Feel free to come back and ask questions. You're not alone!

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