Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the 'strikes' at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily 'strikes' again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having 'strikes' several times a day. The local neurosurgeons won't consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

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Profile picture for gatormomma @gatormomma

Hello, I will be trying the scrambler therapy for this condition as well as for central sensitization. It looks promising and I’m hopeful. Please look into it for your father. Also I came across a Dr Berg on YouTube who is very knowledgeable on Trigeminal neuralgia. Good luck and god bless your dad! 🙏🏻
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@gatormomma
Please let us know if that works!

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Profile picture for daaboss @daaboss

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.

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@daaboss
Tn is such a vicious disease I am amazed that how it is so often misdiagnosed and then becomes the haven of the drug fetishes. The drugs only last a short time eventually turning the patient into a zombie. I know, having suffered the agonies of the disease for almost 10 years . I finally got a successful rhizotomy , and have had the last 5 years pain free. The slight numbing of my face is negligible and invisible. It seems as if you are groping around the principle with your experiments with heat.
Good luck

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Had Gamma Knife Procedure twice now for Trigeminal Neuralgia, the first time I was pain free for five years, and thought it was a miracle. The pain started returning, and it is excruciating pain for me. I had the Gamma Knife a second time, and now the face is very numb and eye and ear are having problems. Wondering if anyone had a similar situation and curious if the numbness could go away. Willing to compare notes, I guess numbness is better than extreme pain four hours a day.

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