Trigeminal neuralgia: What helps stop the pain?

Posted by denny2788 @denny2788, Aug 29, 2021

What is good for triameglia neuralgia type 2 bilateral to stop the pain

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@misu

Pretty sure this is a dumb question, but did you try having that crown replaced? I had years of occipital neuralgia, and the only thing that helped the pain was ice, until I was given Depo Medrol injections, which cured it.

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I'm interested for my friend who has TGN. His dentist just gave him a month guard which isn't really helping. Where were the DepoMedrol injections given and who gave them?

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@26sabrina

I'm interested for my friend who has TGN. His dentist just gave him a month guard which isn't really helping. Where were the DepoMedrol injections given and who gave them?

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The greater occipital nerves go up the back of your head (the occiput). A neurologist gave the shots at a point where the involved nerve was close to the surface, and the DM/Lidocaine was injected beside the nerve. I have polyneuropathy in my legs now and saw the same guy, but he had no magic for me this time.

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I was diagnosed with trigeminal neuralgia 13 years ago. I had tn1 and felt pretty satisfied with Gabapentin. At first, I took 600mg with an additional 300mg. My triggers had been cold air against my face, brushing my teeth, chewing, talking, and the air pressure around me. I would joke and tell friends that I was a walking barometer because I could predict a storm that was out 100 miles. I felt it coming before it arrived.

I moved to a different state with less air pressure and lowered my Gabapentin dosage to 300mg. I had used 300mg for 10 years. Last summer things began to get worse. I had pretty much forgotten that I had trigeminal neuralgia, even though I had not stopped taking Gabapentin. By November I was taking 600mg and in December it was raised to 900, in January it was raised to 1200mg. It is May and I taking 2400mg and 600mg of Trileptal. My tn1 had progressed to tn2 and is bilateral.

I am having difficulty adapting to the pain and the increase that happened so quickly. I check the air pressure around me and notice that with the change in climate, the pressure has risen. Has anyone else experienced a trigger from the air pressure changing? Is there anyone out there who has gone from tn1 to tn2? According to my neurologist, I had been born with the genetic condition trigeminal neuralgia. I am looking for others who can help me cope with the changes. Can you help?

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@wanderer2u

I was diagnosed with trigeminal neuralgia 13 years ago. I had tn1 and felt pretty satisfied with Gabapentin. At first, I took 600mg with an additional 300mg. My triggers had been cold air against my face, brushing my teeth, chewing, talking, and the air pressure around me. I would joke and tell friends that I was a walking barometer because I could predict a storm that was out 100 miles. I felt it coming before it arrived.

I moved to a different state with less air pressure and lowered my Gabapentin dosage to 300mg. I had used 300mg for 10 years. Last summer things began to get worse. I had pretty much forgotten that I had trigeminal neuralgia, even though I had not stopped taking Gabapentin. By November I was taking 600mg and in December it was raised to 900, in January it was raised to 1200mg. It is May and I taking 2400mg and 600mg of Trileptal. My tn1 had progressed to tn2 and is bilateral.

I am having difficulty adapting to the pain and the increase that happened so quickly. I check the air pressure around me and notice that with the change in climate, the pressure has risen. Has anyone else experienced a trigger from the air pressure changing? Is there anyone out there who has gone from tn1 to tn2? According to my neurologist, I had been born with the genetic condition trigeminal neuralgia. I am looking for others who can help me cope with the changes. Can you help?

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@wanderer2u
Hi,

Yes, barometric pressure affects my TN, since the cranial sacral PT much more manageable. Will write more later in the day.

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@wanderer2u
Hi,

I am so sorry that you are in such pain, I have been there. I have tried the medication route and then I tried the cranial sacral therapy. The therapy worked, because therapy worked, I am in a much stronger headspace to deal with triggers. I know my triggers, which one of the triggers is ironically the smell of just about any doctor's office ... The TN will be triggered and a massive headache/migraine will result. So, now I take Baclofen and one of my prescribed head ache meds before I walk in the door. Not a cure, but a better result. I take the same approach to weather, I take my Baclofen and other meds before the pressure drops. Where I am today, it is cool (yes) and cloudy, rain is not forecast. My face is neutral and I will watch for the pressure drop and take medication accordingly. The cranial sacral therapy provided relief and hope. There was a significant decrease of pain within weeks of starting. I now do the therapy once a month mostly because of my IVig therapy.
My key to my nerve related issues is working to make my nerves happy by having them mobile and less inflamed.

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@wanderer2u

I was diagnosed with trigeminal neuralgia 13 years ago. I had tn1 and felt pretty satisfied with Gabapentin. At first, I took 600mg with an additional 300mg. My triggers had been cold air against my face, brushing my teeth, chewing, talking, and the air pressure around me. I would joke and tell friends that I was a walking barometer because I could predict a storm that was out 100 miles. I felt it coming before it arrived.

I moved to a different state with less air pressure and lowered my Gabapentin dosage to 300mg. I had used 300mg for 10 years. Last summer things began to get worse. I had pretty much forgotten that I had trigeminal neuralgia, even though I had not stopped taking Gabapentin. By November I was taking 600mg and in December it was raised to 900, in January it was raised to 1200mg. It is May and I taking 2400mg and 600mg of Trileptal. My tn1 had progressed to tn2 and is bilateral.

I am having difficulty adapting to the pain and the increase that happened so quickly. I check the air pressure around me and notice that with the change in climate, the pressure has risen. Has anyone else experienced a trigger from the air pressure changing? Is there anyone out there who has gone from tn1 to tn2? According to my neurologist, I had been born with the genetic condition trigeminal neuralgia. I am looking for others who can help me cope with the changes. Can you help?

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I developed TN just about a year ago. Just suddenly had very bad pain in the jaw. I find brushing my teeth is definetly a trigger. I tried Gabapentin with no help, and three other recomended drugs, but Pregabolin has been very successful. I originally was on 375 mg three times a day, and I am now trying 50 mg once a day. Hope this may be some help for you
Gina5009

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@gina5009

I developed TN just about a year ago. Just suddenly had very bad pain in the jaw. I find brushing my teeth is definetly a trigger. I tried Gabapentin with no help, and three other recomended drugs, but Pregabolin has been very successful. I originally was on 375 mg three times a day, and I am now trying 50 mg once a day. Hope this may be some help for you
Gina5009

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I forgot to mention, when I have pain in the jaw I put Ambesol (baby teething medication) on my jaw and teeth. Works like magic and I can eat.
Gina5009

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I had trigeminal nerve pain in 2018 in the upper right gum line and took carbamazepine 200 mg daily for 9-12 months. Initial jolting pain was horrific.. felt liked being plugged directly into an electrical receptacle. It returned in 2022 on left side of face moving various places under the eye. I am currently on 400 mg carbamazepine. In the past six months I have developed neuropathy in feet and lower legs. Neurologist says there is no cure. Compression hose provides some relief. Any idea if the two neuropathies are related? I will start 600mg Neurontin (Gabapentin) this coming week. The doctor said Lyrica and Neurontin might help. What is weird is that the neurologist did not prescribed the medicine; however he sent me to a hematologist/immunologist who ordered comprehensive blood and 24 hr urine testing, even joint X-rays. Except for slightly low gamma globulin, all tests and X-rays results were normal. The foot/leg neuropathy is now limiting my physical ability to stand on my feet for very long. Ankles are turning darker now due to broken capillaries. Compression hose do help.

This is all new to me, but I am determined to explore every avenue that I can. Your thoughts are welcome..

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@smueller19

I had trigeminal nerve pain in 2018 in the upper right gum line and took carbamazepine 200 mg daily for 9-12 months. Initial jolting pain was horrific.. felt liked being plugged directly into an electrical receptacle. It returned in 2022 on left side of face moving various places under the eye. I am currently on 400 mg carbamazepine. In the past six months I have developed neuropathy in feet and lower legs. Neurologist says there is no cure. Compression hose provides some relief. Any idea if the two neuropathies are related? I will start 600mg Neurontin (Gabapentin) this coming week. The doctor said Lyrica and Neurontin might help. What is weird is that the neurologist did not prescribed the medicine; however he sent me to a hematologist/immunologist who ordered comprehensive blood and 24 hr urine testing, even joint X-rays. Except for slightly low gamma globulin, all tests and X-rays results were normal. The foot/leg neuropathy is now limiting my physical ability to stand on my feet for very long. Ankles are turning darker now due to broken capillaries. Compression hose do help.

This is all new to me, but I am determined to explore every avenue that I can. Your thoughts are welcome..

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Welcome @smueller19, I don't have trigeminal neuropathy but I do have peripheral neuropathy in my legs and feet with only some numbness and tingling but no pain. I think TN is related by way of it's also a peripheral nerve.

"Is the trigeminal nerve part of the peripheral nervous system?
The trigeminal nerve, also called the fifth cranial nerve, mediates sensations of the face and eye as well as many of the muscle movements involved in chewing. It is the largest of the twelve cranial nerves, and like the others, it is a peripheral nerve that originates in the brainstem."
--- The Trigeminal Nerve: Anatomy, Function, and Treatment: https://www.verywellhealth.com/trigeminal-nerve-anatomy-4588724.

I'm sorry to hear you are also experiencing neuropathy in your legs and feet. I also wear compression socks that are up to the knee but not for neuropathy treatment. I have to wear the compression socks to treat the swelling in my legs caused by lymphedema. The Foundation for Peripheral Neuropathy has a lot of good information on different treatments including complementary and alternative treatments that you might find helpful:
--- Living Well - The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

Did your doctors mention lymphedema or other diagnosis when you started using compression hose?

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Hello, I see that this is an old post, but I am just wondering if other people with trigeminal neuralgia ever come by? I have TN myself, and I'm curious if it's a lifelong condition or if it goes away after X amount of time? I am on Neurontin, which helps. However, I have noticed difficulties with keeping my sodium level in check. The Neurontin causes my sodium level to fall low, and I have to modify my fluid intake as well as take 4 daily sodium pills to keep my level "normal". Does anyone else have this trouble? I understand the reasoning (sort of), but it is really challenging for me to keep my sodium level up. Such a pain. ..

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