Trigeminal Neuralgia*

I would like to know if the acupuncture worked. I have been dealing with TN for 4 years and I have not found anything that helps me more than 5 months at a time. I appreciate your help with this. I pray that we all find relief from this horrible issue.

Hi Anna, I have a similar situation. I have posted my Bio but the site will not let me post it any more. I have had this for 4 years and have gone thru, ENT, Oral Surgeons, Dentists, Doctors and Neurologists. They are all stumped. I have had grinding in my mouth which caused a tooth to break in my mouth which I think has caused the problem. I am getting a Brain MRI next week, so I hope that we are able to find the problem. I have been on 3 different types of medicines which last about 5 months, then I have to change. I am currently on Oxcarbanzapine and I have had to increase the dose because I am not able to manage the pain. I have to work, and I know that this is going to drop my sodium levels more. I just hope that I find a solution. What treatments have you had since 2017? Have you found any relief yet? I pray that you have. I look forward to hearing from you. Amberly

@aabenjamin, your posts are seen by all members participating in this discussion and group. Click on your profile to see your comments.

I'm tagging fellow members like @wander3314 @nrd1 @daaboss @larryg333 @jmb73 who can share their experiences with trigeminal neuralgia and what helps them with the pain and manage the condition......

Here are the treatment options listed on Mayo Clinic's TN guide:
- Trigeminal neuralgia: Diagnosis & Treatment https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347

I have TN 2 and am on pregabalin 75mg twice a day and still experience facial pain and numbness. No sharp pain, just persistent pressure and numbness. Anyone have suggestions to relieve the pain?

I have TN 2 and am on pregabalin 75mg twice a day and still experience facial pain and numbness. No sharp pain, just persistent pressure and numbness. Anyone have suggestions to relieve the pain? Two MRI of brain shows no abnormality. Neurologist is not helpful. No diagnosis. Primary physician provided diagnosis.

I've got a NEW, DRUG-FREE treatment I've been using for nine months now, and it hasn't failed me yet.

Previously over about 20 years, I had tried just about everything, and the only thing that worked for me was 12.5 MG of hydrocodone, (which worked in about 60 minutes, and the pain was then permanently stopped for weeks).

However, I got hit with a session while I was not home last summer, and decided to drive to the VA, to perhaps get scripts filled, at least they could see a TN attack first hand, that only occurs for me, about once a month. It was an extremely hot Florida summer day, and my car was likely +120 F before my A/C kicked in. But, in the 15 minutes driving to the VA, the TN seemed slightly better, which would defeat the purpose for going there. By the time I saw a nurse in another 15 minutes, I was about 90% pain free. By the time I left, I was pain free! No drugs, just the heat from the hot car's interior.

OK, but getting the car that hot is impractical. I had also tried a hair dryer several times in the past, to no avail. There was just no way to convey enough heat to my ear area, without serious burns, and it never worked at all. Still, this experience showed that heat COULD work.

Next TN attack, I tried my adjustable shower head. I could vary not just the temp, but also the volume of water, and force. I determined that if I got the water to 112 F, and sprayed it up softly about a foot or so, all around and in my ear, the pain would be GONE in about 15 minutes. The first few times I tried it, I had to repeat it, and I suspect that I didn't get the right part of my ear that caught that nerve, hot enough.

My theory for only me, is that I had an outer ear injury when I was about 6 years old. Then, occasionally, cold, heat, or hitting it just right, could set up a feedback syndrome that would cause the pain, make some tissue or the nerve itself, swell, which of course would cause more pain. When I was young, riding a bike in very cold weather, or swimming in very cold water would cause debilitating pain. After another 50 years, the TN it was more often triggered with just moving the cartilage of the outer ear around, about once a month.

Evidently, the heat breaks the pain cycle enough to stop the swelling, and stop the nerve from being compressed. You can see a similar action when you burn yourself. As the skin area swells, it hurts more and more. However, if you treat the skin area with 20% benzocaine or lidocaine, that stops the pain cycle in about an hour and the swelling. After that, the pain is about 100% gone for good. (it will still peel about two weeks later).

Once I held a +600 F soldering iron for about 5 seconds with a bad burn. In an hour, all the pain was completely gone after treatment. The next time I noticed it had been burned, was when it peeled after the two weeks. The burn damage was still done, as the outer skin was light brown where it was burned. But, once the swelling was gone, much of the swelling damage and pain was also eliminated. Aloe also seems to work, but mainly for burns like heavy sunburn. Voltaren is also likely to be effective, and maybe DMSO would be as well. IOW, much of our pain issues are caused by pressure on the nerves, which can come from mechanical or chemical swelling. Stop that, and you stop the pain. The TN "teflon surgical treatment" also relies on protecting that nerve from trauma.

Let me know if some variation of this heat method works for you. Remember, you'd have to reach the nerve or it won't work. So don't burn yourself trying this.

Hi. I have had TN for 16 years. I take Carbamazepine or Tegretol for it. It works well for my pain except it lowers my sodium level. I actually am seeing a pain anesthesia specialist for alternative treatment.
I don’t take opioids or NSAIDs. It doesn’t work for that kind of pain because it is the nerve that’s affected. Cold sensation triggers the pain with TN. When I’m going through that, I usually wear a scarf and use a portable heater in my room. Those usually help but I have trouble eating and brushing my teeth.
There are other nerve medications for TN but they didn’t work for me. I think it’s best to see a neurologist to evaluate what the cause is for TN and treatment for it. The levels of those medications need to be routinely checked by your neurologist.
I hope that you find something for him or someone who can help. The pain is too much to bear. Take care.