Mayo Clinic Connect
I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.
Liked by Om Lee, lady1lake
Hi, my concern is with trigeminal neuralgia. I was diagnosed 7 years ago and have taken gabapentin and lamictal for it until recently when my primary physician had me stop the gabapentin completely and cut the lamictal dosage in half. The pain/attacks have multiplied exponentially in severity and frequency brought on by something as simple as a light breeze or brushing my teeth or talking. I know it seems like the obvious solution is to start back on the meds but it was another serious health concern that led the dr to having me stop them. I am considering an appt at the Mayo Clinic and am interested in hearing from those who either suffer from this condition or have been treated for it as well at the Clinic. Thank you for your help to all who reply.
Jump to this post
After suffering with the pain of trigeminal neuralgia and the side effects of drugs like Neurontin and Trileptal, I opted for a Gamma Knife Radiation procedure. In a month, I was off the pills and as the year progressed and scar tissue built up I was pain and pill free. It’s been 4 pain free years and I would do it again if needed.
Liked by zipmac
Sorry that you are suffering so. I was diagnosed in 1999 and have had the stereotactic radiosurgery and an MVD. Unfortunately, neither have had great outcomes. I had a few good years after the radiosurgery, but the pain returned with a vengeance and I then opted for the MVD. I now have occipital neuralgia as a result of the MVD. I currently am taking Cymbalta, Topamax, Amitriptyline (to sleep), Fentanyl patches and Vicodin as needed. Some days are okay and some are not. I recently retired to try to manage the pain without stress and I’m not even 50 yet. And I loved my job! I meditate and try not to live mired in my pain. Life is too good to miss! Some days, mine is a little lacking though… 🙁
Mayo Clinic has a truly respected reputation. I wish I would have sought counsel there. My suggestion would be… to be sure you trust who is doing whatever you do and ask a LOT of questions. Take someone with you to hear all of the answers. Sounds simple, but can be oh, so important.
I agree with you wholeheartedly, I have a similar story, however, I have also been dx with Sjogren’s and Fibromyalgia. But I suffered with the trigeminal neiuralgia for years and wish I had all the money I have paid out for it. Also, I had to medically retire at 49. Getting to the right doctor is key to your health and your life quality! I have had shots in my face, around my right eye and every kind of treatment imagineable and more. My pain was helped with Botox shots in my face, eye and trapeziod muscle. It took about 3 times and now my pain is manageable. I wanted to have the surgery I was in such pain, but the MD I was seeing did not believe me and actually scolded me for wanting to have the surgery. You must have a doctor who believes you when you tell them what symptoms you have.
Liked by NancyM, zipmac
You are quite lucky the gamma knife worked as it’s not the procedure that is often successful. I had the gamma knife and then mvd and still have pain just not as frequent or mind bending and have the entire right side of my face in pins and needles mode most of the time and now the sneezing has restarted, which is controlled by the Trigeminal nerve. Good luck to you! I hope it lasts a very long time :0)
Would like info on Trigeminalneuralgia.
Hi, I too suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don’t think we are alone with our suffering.
Were you treated at Mayo? If so, how long was the stay and what treatments did they do?
No, I was not treated at Mayo. I have been to my local neurologist and he treated with nerve blocks into my occipital nerve, about 5 Kenalog injections. Started and still on Gabapentin (Neurontin) and Epitol (Tegretol).
I’ve had an MRI, MRA etc … I’m on the same medications, but they have stopped working. This is normal according to Mayo. My neurologist wanted to have a doctor in his complex do a nerve block procedure, but I read on the Internet that the procedure they wanted to perform was obsolete and would need to be repeated every 3 months if it did work. I’m tired of the pain. I have an appointment at Mayo in November, but I’m afraid they will start all over with the same testing. I want some type of procedure done to permanently address it. Even if it causes some numbness – that has to be better than the pain I have had for the past 9 months.
Liked by Om Lee
So I had this pain 14 yrs ago, now having a recurrence and the same treatment is given. You may be under the impression that it is obsolete, but it is very effective. Injections into a nerve sound very painful, but luckily they are not.
There are some fancy-do-dah surgical procedures that actually remove part of the nerve…that would be the next treatment I have read about. I don’t think I’d go there–heard of the outcomes and I am not ready for that drastic measure.
thanks for the post. my experience goes back about just that far with tn. a year ago, i finally gave in to a tegretol generic, carbamazepine—because the pain intensity and frequency was racheting up. The drug has worked fairly well, but the pain has begun to return in its ‘changing week to week’ ways. Has put me back in that old fear mode, and I’m pretty sure I need to find another answer before too much time goes by—so I greatly appreciate your post (it was my reason for signing up) and the possibilities it presents.
Please, please, tell me about the procedure you mention: injections into a nerve. What’s it called? Do Mayo people do a good job? Could it be done in Arizona for me (I understand they have a clinic there, and it’s closer to Oregon)? I share the strong dislike for the ‘cut it out’ surgical mentality, btw! Again, Thanks!
p.s. i had not read Zane’s post before sending mine out.
I hear you, Zane (I didn’t know my just prior post was going to you). I just don’t want to get back into that ‘stopped working’ place you mention!!! And your apptmt isn’t til November! Huh? How could they have you wait so long? I keep putting it out there that someone is going to find a non-invasive (read that ‘no drug’ ‘no knife’) means for healing that which has stricken us. Just a thought in closing: you ever had concussions? or blows to the side of your head? do you have good posture (I don’t)? do you have scoliosis (I do mildly, always have)? Thanks! Let’s stay in touch!
Hi…just to follow up…the nerve blocks are tender, directly into the occipital nerve. Though it sounds painful it really REALLY is effective! Do not stop those meds either, they are specifically for trigeminal neuritis. I don’t want any surgery if possible. My pain started about 6 mos after a car accident. Initially I was treated for about 1 1/2 yrs with periodic nerve blocks and continued the meds as well. Eventually the pain resolved. I also have some scoliosis and have sought pain relief from massage therapists and chiropractors–they really help as well. As far as waiting for appointments–I got lucky and there was a cancellation 5 days after the initial onset of pain this time…I also spoke with the office manager impressing on her the severity of pain I was in…another thought: DO NOT SETTLE FOR A WAIT AND SEE NEUROLOGY OFFICE! Shop around and find someone that can see you in the next couple of days if you are in pain!!
version 18.104.22.168.3.2Page loaded in 0.830 seconds