I was diagnosed with bilateral TN April 2024. It started on the right side of my face, symptomson the left side of my face started the beginningof 2025. I have pain, numbness,and swelling in the right side of my face. My right eyelib started drooping and the right side of my mouth also is drooping. The left side of my face has pain in my cheeck, around my eye, forehead and my left eyebrow is pulled up, like a spock eyebrow. The neurologist thinks it is related to the TN and the neurosurgeon does not think it is the TN, but they can not find anything else it could be. I want to have MVD surgery but scared it might not be the right think if I am having these other symptoms too. I have tried several meds, they either did not control my pain or the side effect were ruining my life even more.
Sorry you are having these problems. I have Left side TN but it looks like my right side has slightly drooped . My left side looks quite tight! I have put it down to TN. I hope all goes well for you.
Hello there.
I have type two TN and I have reduced feeling on my right side. I had GKRS (Gamma knife).
I was good for three years then it came back but not as bad. Eventually after about three years and several medications later. . Finally found one that works Amitriptyline.
Iām so sorry this is happening to you. I pray you get better and soon!!
All my best,
Min
Hello,
I am not a doctor just someone living with SUNCT (Short-lasting, Unilateral, Neuralgiform headache attacks with Conjunctival injection and Tearing).
As trigeminal neuralgia (TN) or any of the Trigeminal Autonomic Cephalalgia (TAC) are mainly diagnosed through symptoms and excluding other possible conditions and medications, it can be difficult to get to the solution.
Have you tried GON/ONB (general occipital nerve block/ occipital nerve block)? They didnāt work for me but have for others.
As we are all different, I think the best we can āallā hope for is effective pain management, so work with your GP/neurologist finding what medications work for you? There is no one size fits all and this is not a short process. Itās taken me five years since being diagnosed, to try to get my pain management team together.
Also, we may have a primary headache disorder but that doesnāt mean we canāt have another primary or secondary headache condition too.
I have SUNCT, a TAC, and have had pains since being a child of 5/6 years old. After 40 years of begging for help and many MRIās later, I had one with contrast and there is a vascular loop next to my nerve. (In the last 8 years; Iāve had over 10 doctors, 3 hospitals and 7 neurologists to get to my diagnosis.) One neurologist at the beginning told me theyād seen ā000s like me and itās chronic facial pain so youāll have to work with your doctor to find the right meds and you wonāt need to see me again as thereās nothing more they can do. Iām so glad I called BS!
I can only tell you the conversations Iāve had with my neurologist and neurosurgeon, but surgery is a last resort. The neurosurgeon wonāt contemplate looking at my file until the condition becomes treatment resistant.
There are several surgical options, Micro Vascular Decompression (MVD) is the last resort as itās brain surgery. They put a Teflon piece between your nerve and blood vessel where your vascular loop is. Do you have a vascular loop? Have you had an MRI with contrast?
MVD may or may not work, nothing is guaranteed. It may take over a year after surgery to check its effectiveness as some people have said the nerves around the surgical scar can distort the possible benefit. Some have said itās not worked, some say 1-2 years others 2-5 or 5-10 years. A few say that it has stopped all their pain and some have had multiple MVD surgeries.
Other options such as gamma knife, Rhizotomy procedures, etc could be more appropriate for you, if you donāt have a vascular loop. Their aim is to damage/kill the nerve fibres to reduce the pain. These all still come with risks such as facial numbness, facial paralysis, loss of hearing etc.
However, this isnāt just about physical pain, itās the psychological too. There is a reason they are known as āsuicide diseaseā / āsuicide headachesā. Despair, apprehension, fear of the next attack, lack of sleep, the impact on your daily life (family, friends, work) and above all the helplessness that I feel and the burden I feel I have become.
Do be careful of the placebo effect. When I started taking different medications, had ONBās and other treatments. I was so desperate for them to work that I felt they had. Iāve recently started Lidocaine infusions and at the moment, I refuse to comment on its efficacy.
Do try to stay strong and this is a good place to ask for advice and support when navigating all the different minefields.
Good luck, I hope you and everyone else can find a solution.
(Sorry, been struggling psychologically myself so needed a bit of a rant!)
I had TN on are right side for approximately 9 years. During those 9 years I tried many medications and other interventions without much success until I had MVD surgery in 2018. Since surgery, I have been pain free and I am on no medications for TN. I sought out a neurosurgeon that specialized in MDV surgery. My surgeonās name is Dr. Raymond Sekula. I am so glad I had the surgery. It gave me my life back. Best wishes. Nancy
Hi!
I have had several MRIs with contrast and I have 2 vascular loops. One on each side. The right started with symptoms first about 1 year ago. I have tried a few meds, nothing works for very long. I talked to oncology about gamma knife and they said they would not do it for me because of my age, for fear of tumors in 5 to 10 year. I feel like my only option is more meds or surgery per the neurosurgeon. I just want to know it is just TN because of the eyelib and mouth drooping, swelling and numbness.
I am so sorry you are having the pain and uncertain if the MVD will solve it. Iāve had 2 . The first was good for 3 years then the pain returned. A different surgeon did my 2nd and have been pain free for almost 13 years. Apparently scar tissue was the issue. If I needed to do another I would in a heartbeat, hope this is helpful. If I can be of any help please reach out.
Sunflower86, TN is tough to deal with. I donāt know where you live but I can tell you (generally speaking) if you are speaking with neurosurgeons in a small town I highly recommend searching out a very experienced neurosurgeon in a large town. Example: I lived in Louisiana previously and developed TN. Nobodyā¦..dentists, ENTs, endodontists, GPsā¦..nobody could say what I had. It was awful pain ! Eventually, an oral surgeon told me ā-Trigeminal Neuralgia. I took Tegritol to help. It did. But eventually had to up the dose. I eventually moved to Birmingham, Alabama, which is quite a large town. Its my strong belief that the better surgeons are in the larger cities and they have the experience! My neurologist here in Birmingham brought up the idea of a Gamma Knife treatment. I consulted with the neurosurgeon she recommended and he was so compassionate, as he had seen this so many times. The Gamma Knife treatment (its not really a āknifeā - but radiation) worked 100% for me. It doesnāt for everybody. I asked him about the MVD Iād read about. He said No. It doesnāt always work and it was invasive. He said sometimes with the MVD they would go in and find a blood vessel pressing on the nerve , and other times we find nothing, nothing at all. So he recommended the GK. The GK worked for me for 9 yrs. Totally pain free afterwards. Then the TN came back after 9 yrs.. The same surgeon recommend a newer device called a Cyber Knife. Totally painless. That was in 2010. Iāve had no more violent episodes for 15 yrs. I do have a little bit of a hit occasionally but its no more than a mosquito bite and is gone in 10 seconds or less. And, I did have numbness for a number of years afterwards from the CKā¦..which has since gradually subsided. But Iād take numbness over those violent lightning-like stabs. The GK does not always work. And, as youāve read from others, neither does the MVD always work. That said, a lady in my church had TN and her surgeon here in Birmingham did recommend the MVD for her. She had 100% success. Again, that was with a neurosurgeon here in the Birmingham area ā not a small or medium size town. And we have the influence of UAB (University of Alabama medical center) here in Birmingham. Some people Iāve read did the GK and it did not work. Some did the MVD and did not work. The opposite is true too for both procedures.
So, after all Iāve said I recommend you do some research with neurosurgeons in a BIG town, especially with a large university medical center nearby. Pick a neurosurgeon that has had a lot of experience with TN. HEREāS WHAT I DO with any new medical need that arises Iāve not encountered before. BCBS website allows you to look at all the doctors and look at their customer ratings. Example: I had to have back surgery last year. Whoaā¦thats a big deal. I went on BCBS website and looked at back surgeons and picked one that had a lot of ratings (as compared to the others) from customers, and had a high score. I had the back surgeryā¦ā¦100% success. Its just like nothing ever happened. No painā¦..and Iām 78. Another thing I highly recommend is if there is a lot of stress in your life get rid of that as much as you can. I pray you will get with the right surgeon. There is no magic bullet for TN. Sometimes the GK (or more preferably now the CK) work sometimes no. Sometimes the MVD works, sometimes no. I pray for you to find the right surgeon and the right treatment.