I wanted to share my experience with this condition…
Severe but treatable pain in the face and head.
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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.
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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.
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.
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.
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.
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.
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