TN patient from China

Hello, I just learned about this forum. I am a TN patient from China, it should be ATN and TN2.I read most of the posts and I feel like I’m not alone. Here’s my story. I started to feel numbness on the left side of my tongue in September 2023, and the dentist diagnosed me with BMS and said that it was caused by depression, which I did not agree with because I am an optimistic person. From January 2024, the symptoms progressed to persistent numbness and tingling in the left gum, which alerted me to a neurosurgeon, and the MRI report showed that I had a blood vessel on my left side pressing the trigeminal nerve, so in March, I had an MVD surgery, unfortunately the surgery did not take effect immediately, and the location and level of my pain did not change. The surgeon told me that this is normal and that some patients need 6-12 months to recover. I’m currently seeking help from the pain department, and they have prescribed me pregabalin and tramadol, and said that if it doesn’t go away after three months, they will consider giving me some options (I guess it’s RF surgery?)
I expect I can recover in three months and I will keep it updated.

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I also had an MVD as the first attempt at being pain free. Worked for 2 WEEKS and then the pain returned!!! I then had a “glycerol rhizotomy” which worked!! Pain free for years until …yes, the pain returned. I had a second G R and again was years pain free. A simple procedure that I will have again if needed. Ask your neurologist and if he doesn’t know get a new doctor!!!

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Hey Justin,
Welcome to Ben’s Friends
As you state “I read most of the posts…” I’m sure you have noticed the differing TN diagnosis, with ATN being a fairly broad set of symptoms. Often trying to get a clear diagnosis can be fairly difficult. Any surgery of the head/neck takes quite some time to settle. I’ve had a few head surgeries and the recoveries have been awful and long. I too have been through the ‘Pain Dept’, hence the TN diagnosis, but due to the surgeries I’ve required it is highly unlikely that my trigeminal nerve has not been irritated in some way. Further surgery would only increase any irritation, so that wasn’t an option for me.

I’ve been trialled on all sorts of medications, but a low dose opiate has been my only relief.
I’m wishing you the best of luck with it all and please do let us know how it all goes.

Merl from the Modsupport Team

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How many years have you been relieved of pain after your first GR

I’ve had this procedure done twice, approximately 5 years apart. I would definitely have it done again should I get the pain back.

Thank you very much for the prompt reply, are you ATN or TN2? What is the pain location and pain type you have ? For me ,it is in gum The side effects of GR are said to be numbness in half of the face, can you tolerate it?

I have typical TN with sharp stabbing pain. When I first started having the pain it wasn’t diagnosed right away. Tried all types of medications!! Didn’t help the pain but sure made me sickly from the side effects!!! The pain is left side of my face and is teeth/mouth all the way up the side of my face!! They say this is “the worst pain known to man” which I can say is VERY true!!

Thanks, but can you answer my questions about your GR side effects?

I can honestly say if I had the GR and the pain stopped I would have accepted ANY side effects including numbness!!! (I didn’t have any)
Considering how much pain it is living with Trigeminal Neuralgia I basically would have tried ANYTHING to ease the torture!!!

Justin, I’m sorry you have this monster. All surgeries have risks and numbness can be a big one…im not a candidate for that bc mine is bilateral, but I was told it would effect my whole face and I could look as if I had a stroke. Out of curiosity, bc you sound young, have they tested you for MS? TN is so rare under 50 years old without being caused by something else. Like Merl above, I was only helped by low dose opioids and a compound cream…and muscle relaxers. I have Bilateral TN1& 2 and atypical on one side as well. I hope you find what works for you. Welcome to this site and cheers to pain free days ahead!

I’m sorry you are going through this! I have TN2 and have had the RF surgery not successful for me. I’ve been under pain management and have found some relief with anti-seizure, medicines, opiates, muscle relaxers and ice on my face. Pain flares or break through pain is the most difficult. I was fortunate enough to be taught the cycle of pain in a pain management clinic. Green zone means pain-free proceeded all activity . Yellow zone means proceeded with caution probably a 5 to 6 pain threshold. Red zone means pain flare stop immediate Ice, pain medication, meditation breathing, bio feedback whatever you can do to get through sometimes it’s getting through a minute sometimes it’s getting through five seconds sometimes it’s getting through the hour. I was disable by my neurologist six months after getting TN2. I was told I’m not candidate for most surgeries. There are a few. That there is no cure that I will have it the rest of my life and was sent to pain management after getting diagnosed due to dentist burning my D3 nerve with an injection of lidocaine. TN is a life altering painful facial condition and I’m sorry that you were suffering. Hoping yours is temporary and go away. So many suffers, praying for a cure!

Can you tell me what are the most effective medications you use for pain relief?

Justin, the most effective med I know of is Tegretol. But, with it the doctor has to periodically check your blood because it can have some effects on some people. Another one is Trileptal, which is like a cousin of Tegretol. It works very similar but does not require the occasional blood tests.

I had very very bad pain in 1998. I took Tegritol. It worked well. Eventually I had to increase the dosage, which is typical. Then they offered me the Gamma Knife treatment in 2000. It worked very well for me – no surgery, no invasive brain surgery, but it is Gamma radiation. It took a few months to take affect but I was pain free for 9 years. Then after 10 years of being pain free the TN came back like a lightning bolt. The neurosurgeon then suggested the Cyber Knife treatment, which was something new at the time that had become available. I accepted it. They told me it would leave a lot of numbness in my face. But the pain was vastly reduced to almost none. Whereas the pain had been a 10 level on a 10 point scale, it was down to a level 1 and only on rare occasions. That Cyber Knife treatment was in 2010 – 14 years ago. I now take pregabalin twice a day to help with the neuropathy and very occasional small TN pain. My face is not nearly as numb as it was years ago. But, yes, I can live with the numbness. Your body gets use to it and adjusts. I’m alive whereas I may not be if left untreated. I’m 77 now; and this all started 26 years ago. The Gamma Knife and/or Cyber Knife worked for me. I have read that it doesn’t work for everyone but it is worth considering if meds don’t help you. I pray you find the right solution; and THE RIGHT NEUROSURGEON. its a terrible thing to live with.

Hey Justin
I’m on gabapentin 300 mg 3 times a day. Also Oxycodone 5 mg depends on pain level.
Mussel relaxers 4 mg I find ice works best for me. If pain flares its Ice pack on TN nerve, MR then Oxi . I never take more than prescribed by my pain management doctor. Most days my pain is controlled by Gabapentin and ice. It’s all about stopping when pain starts to fire, burning, sensory issues ect. There are days my hair is pulled back, I have Lidocaine cream on my face, I can not wear make up, go outside in the wind, or even brush my teeth. If burning and pain gets bight I’m in Red Zone and I’m on ice, pain meds and praying! Hope this helps

Thank you Jimmy, very detailed sharing, my pain is persistent but level is maybe 4 or 5 out of 10, so I will be careful for next treatment ( CK or GK )

Hey Justin,

That can be VERY individual. There is no such thing as a ‘magic potion’. For some people a lower dose antidepressant can assist, for some an anti epileptic medication maybe beneficial. Other’s can get relief from treatments such as Botox. Why do treatments vary so much? It can often depend on the ‘triggers’ or what initiates an episode. If your specific trigger can be identified, treating that trigger source can help reduce the frequency of attacks. For some people a combination of treatments may be required as there can be more than one trigger. Some are lucky enough to find their ‘key’ or what works best for them, but this is NOT a one size fits all scenario. What can work wonders for one person maybe of very little benefit for another, so it really can be a case of ‘trial and error’ to work out what works best for you.

The medications I have not included in the list above is pain killers, namely opiates. Opiates mask the pain, they do not ‘treat’ it. Yes, painkillers may take the pain away, for a period. But if the underlaying cause is still present, when the painkiller wears off, the pain often returns. For some people using opiates can be an issue as more and more of the drug can be needed to manage the pain as our bodies become normalised to that dose of the drug. Some drs try not to prescribe opiates for this very reason.

Merl from the Modsupport Team

Thanks, Merl, it’s great to hear from the community managers, you are running a great community, and there are very few TN-specific forums like this in China.
At the moment I still have the following questions, and I don’t know if they have been fully discussed in this community.
Q1: I had MVD, but the pain is not relieved, is this because I am TN2 or ATN? Or it needs time to recover.
Q2: I took Tegretol for a few weeks before MVD but it didn’t work, some people say that this is also a reason why MVD is not successful, is that so?
Q3: My symptom is 7x24 persistent numbness and tingling in the left upper gum, is this symptom common on ATN?
Q4: The MVD report shows that my trigeminal nerve root is compressed by the superior cerebellar artery and the nerve can be seen to be compressed and deformed, considering the time of my onset, does the nerve compression cause demyelination, can this be recovered? (Currently I’m taking vitamins B1 and B12)
I know not all questions have answers, but thanks for sharing

Hey Justin,

As with many treatments for TN it truly can be a case of trial and error to find (what I call) ‘your key’.

TN1 most commonly has a set of symptoms. If you have symptom A, symptom B and symptom C, a TN diagnosis maybe appropriate. If your symptoms are outside of A, B, and C then a diagnosis of TN2 or atypical TN (ATN) is often given. I have been given both a TN1 and an ATN diagnosis by differing Dr’s. Their criteria for both was more an elimination process than a clear diagnosis. ie If it’s not ‘X’ and it’s not ‘Y’, it must be TN.
As for ‘recovery time’, with nerves it can take time and for some a long time, for the nerve to settle when it’s been irritated. Some medicos like to give the ‘normal’ 6-8week time line for recovery and for some people that 6-8weeks is about right, but for some it can take MUCH longer and for some years.

Tegretol is an anticonvulsant medication often used for epilepsy. When I was trialled on these meds I queried why, I don’t have epilepsy. It was explained to me that epilepsy is like an electrical storm in the brain and often these electrical stimuli can send pain messages anywhere in the body. These anticonvulsants can reduce and ultimately control these messages. IF your cause for TN is electrically stimulated these meds can often help.
Another example of this is blood flow related. If area is not receiving enough oxygen (via blood), this can trigger pain. My heart would often ‘flutter’ giving me some odd sensations, not pain but odd. Due to this I was given a heart monitor for 2 weeks, nothing showed. But I was sitting in the cardiologist’s appointment, with him saying ‘We can’t find anything on the monitor record…’ and I said “Well, that’s strange, because I’m having symptoms right NOW!!!” He jumped up from his seat, grabbed his machine and wired me up. Sure enough the read out showed exactly what I’d told him. My heart was running to it’s own beat (like a bad 70’s rock band :wink: ) beat, beat, miss, beat, miss a few, beat… It was all over the place. They trialled me on a few heart meds until we found a med and a dose that worked for me. Yes, it controlled my heart, but did nothing for my pain.

For some people these medications can work wonders, miracles in fact. But for others they don’t work at all. For some their benefit may work for a few months and then the pain monster returns without any warning and the most frustrating part is nobody (not even the dr’s) know why. Me, personally, I have seen more Dr’s than I can count on my fingers (and toes) and each and every one of them has had a differing opinion on how/why, but none have had my ‘key’.

ATN is Atypical Trigeminal Neuralgia. To be ‘typical’ means a common set of symptoms. ‘Atypical’ means not typical at all. For some TN patients they can have periods of pain free, then flare. The fact that you are 7x24 maybe considered ‘atypical’ hence the ATN diagnosis. I would recommend you ask your treating dr why it’s been diagnosed as ATN rather than TN. This ‘could’ give you differing ideas for management ie physio or accupuncture or reflexology etc etc etc

OK, so now this is way, way, above my pay grade (I’m not a dr, just a patient). I know demyelination within the brain often shows in MRI scan’s of M.S. patients. In VERY layman terms the myelin sheath is like an insulator around an electrical cable, the nerve. When that insulator breaks down or ‘demyelinates’, the electrical signals can get passed from one nerve to another sending mixed messages back to the brain. Now, does nerve compression cause demyelination? Can this be recovered? I have no information about either of these questions. Sorry.

Merl from the Modsupport Team

Thank you very much, many of the answers are very enlightening and you are very knowledgeable. I went to try acupuncture today and my insurance covers it and I hope he helps reduce the pain. I’ll keep you updated

Please do. We have ‘silent’ members who browse on through, often looking for what has assisted others. Your information could well be that info someone else is looking for.

Merl from the Modsupport Team