Hello, to my knowledge I think its considered typical GPN, I get zaps/shocks intermittent with sometimes small aches which was controlled pretty good for about 2+ years on amitriptyline. In my opinion, safest way to best way to go about this, would probably be to try 1st Nerve blocks, 2nd PRF Pulsed radiofrequency (NOT rhizotomy), and 3rd/ last option MVD. I do not want nerve cut as to minimize issues with it. But Would that be a safe and good way to go about it in order? Also, what has been the most popular/effective choice for Nerve/steroid block that works best for you or others?
Hey @Mexiboii95 ,
Firstly, Welcome to Benās Friends, Living with facial pain community. My name is Merl, Iām a member of the moderator support team here on Benās Friends.
Atypical Trigeminal neuralgia (ATN) has been one of my many diagnosisā. I have a little nasty growing in my head and have required a few neurosurgeries to try and manage it all. Due to these surgeries, the idea that my trigeminal nerve (and associated branches) has not been damaged or at the very least disturbed, is near on impossible. Each time they have operated it has been to fix a known issue, but each time has left me with what I call āgiftsā, weird side effects. These side effects have not just added up, but rather multiplied each other and trying to manage around it all has been a minefield.
Iāve consulted more dr/specialist/surgeons than I can count on my fingers (and toes) and it seems no 2 have had the same opinion. In the surgeonās view āI operated, I fixedā¦ā this is far from fixed. I questioned him about the āfixā. He didnāt like my questioning, so I sought a 2nd opinion and was trialled on all sorts of medications. For some patients, these meds can work wonders, for me, not so much. I was trialled on heart meds, epilepsy meds, psych meds etc, none of which were my ākeyā. I tried some alternative treatment options ie accupuncture, manipulative massage, a TENS machine, hydrotherapy, bowen therapy etc etc. I saw a psychologist and spoke to a social worker. If someone suggested an option, I gave it a try.
In my view, Iād do ANYTHING to avoid another neurosurgery, but unfortunately nothing helped. I hoped, but the reality was I had no choice but to go under the knife again. Iād exhausted every other avenue open to me. Now, like I say, Iām not a Dr and Iād recommend you get a 2nd opinion (even a 3rd and 4th if you need it) Some medicos will profess that their way is the only way to deal with it, but if you can avoid surgery, personally, Iād strongly recommend it. My initial surgery was to be the āfixā, but it turned into a cascade of issues, requiring 6 neurosurgeries.
I want to add a word of caution here as what can seem to work miracles for one individual, can sometimes be of very lttle benefit to another. Nerve pain is one of those conditions where a clear cause or a definition can be a bit like trying to nail jello to the wall, it keeps moving. How you interpret the pain can be VERY different to how I interpret the same pain. We all have differing tolerances, so trying to gauge it all is near on impossible. This can sometimes be why treatment options can vary wildly.
In the first instance, seeing how amitriptyline had been beneficial for you previously, Iād suggest talking to your medical team about changing the dose or even the medication. There are a multitude of differing tricyclics (Class of drugs) available other than amitriptyline. Sometimes a small alteration can have huge benefits, if itās a medication and doesnāt work, itās not a big thing to change back. Surgery is final, trying to change back from surgical intervention can sometimes be near on impossible.
My advice: Find out your options. Exhaust every option open to you. At least this way if surgery is required, you know youāve done everything you possibly could.
Hope it helps
Merl from the Modsupport Team
Try Botox injections.
2025-08-25T04:00:00Z
Botox injections for Glossopharyngeal nerve? Thats a first, @Michael2 thanks for ur response.
I had an MVD in 2014, for R/S TN. Fell in 2023, lost consciousness. Cacophony of issues since then. Diagnosed with GPN. Taking, Toprimate physical therapy, meditation, nerve blocks listening to healing frequencies. I am trying to stay physically active. , It feels like a roller coaster sometimes. There are no answers really Iāve discovered. I am the answer to this.
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Hey @Lou1
Ohh, big, HUGE, MASSIVE +1 for this comment. I have learnt I need to manage around me. Often others are going to have an opinion, but their opinion doesnāt matter. They have no clue of the obstacles Iām trying to navigate around. That rollercoaster is very real, but only I can manage it.
I am the only answer.
Merl from the Modsupport Team
Unfortunately Botox injections come with other side effects like severe headaches look it up. Iāve had trigeminal neuralgia since 2014 what caused it was when I had CyberKnife because I had a small tumor in my left ear that was in between my balance nerve and my hearing nerve. I tried everything. At this current time Iām on 300 mg of vimpat which is generic lacosamide, and since my very bad last episode my doctor put me on 200 mg of gabapentin three times a day. I have had four root canals since my last episode. I made some oatmeal cookies and I baked them too long and when I bit down in the front it went nuts crazy. So I told my dentist that I wanted to root canals on the upper left 9 and 10. Itās been working however. I am eating soft foods and before I eat I put the generic oral gel on my upper left side of my teeth and Iāve been doing this forever. Iām avoiding as much sweet as I can hardly stand. And that not eating really hot food Iām letting it cool down. I donāt eat meat or anything chewy. If I take vitamins I orally take them I donāt get gummy vitamins.
When I drink liquid even milk I put it in the microwave for a few seconds to warm it up because cold affects trigeminal neuralgia. And I drink it through a straw in my right side of my mouth. How I know this is because my last episode of trigeminal neuralgia I thought I would put one of those face towels on my left side and that set it off really bad cuz it wasnāt hot wasnāt really cold but it was room temperature and it just wham. But I do have some of those natural bean bags that I use I warm it up for about a minute and donāt put it on too hot let it cool down a bit and I put that on the side of my face when I start getting aches and my jaw cuz I also have TMJ anyway talking a lot affects it I could go on. I take Seroquel 25 mg to help me sleep at night helps a lot. I donāt like bright light on my eye so I bought on eBay a silk patch and I put it on my sunglasses you can look at that up and it helps a lot even when Iām watching TV I just put my sunglasses on in the sill pack helps. I even use it on my sunglasses when Iām driving. You just have to be careful. Going back to root canals are the best way. I know because Iāve had a lot of teeth pulled on the left side what a waste. Well I hope this wasnāt too lengthy and it was helpful.
Be blessed
Robin