I am looking for a little advice before I visit my neurologist next week. I was diagnosed with TN approximately 5 years ago by my general practitioner. Since that time, I have had an MRI(normal) 3 years ago and have seen a neurologist. None of the medicine prescribed to me was in any way effective. I have experienced episodes lasting up to 3 months at least twice a year since I was diagnosed. The pain can be intense and frequent during these episodes. My main question is what is the methodology or tests that are used to determine exactly what I have. I am currently in remission and loving every minute of it, but I know it will come back.
We need to know what you’ve tried and for how long in terms of medication and treatments. That way we can give you good advice.
There are no specific tests you can take. In some cases a MRI will show a compression to the nerve but not always. Dx is done via a nuerologist and will be ancedontal in nature. I’m a little concerned you were Dx by a general doctor as most chronic facial pain issues are considered rare and are dealt with by a nuerologist.
Have you been completely reviewed dentally? Have you had herpes or shingles? Has there been trauma to the head in any way at any time?
1 Like
Carbamazepine was the first drug I was prescribed. I cannot remember the dosage. I took this for about the first two years. To be honest, the first two years
were rather low intensity attacks. The third year the pain level increased markedly and got bad enough to be referred to a neurologist and required nerve blocker injections above my right eye. I was prescribed nortriptylene 125mg/day and started taking it whenever i felt the first indication of an attack coming. I never got any relief and the attack would run its course. I have tried to be better at documenting my treatment the last couple of years. The last attack lasted 3 full months with about 3 weeks of real pain. Tried rubbing some essential oils on the painful area of my head and more nortriptylene. The attack ran its course. During the “painful” period of my last attack is when I scheduled my upcoming appt.
Dental work could have been a trigger, I know i had a root canal about 15 years ago.
Okay, a few suggestions for you based on the additional info:
- Carbamazepine is not the first line med for this – the first med should have been Trileptal (Oxcarbazepine). ATN always responds to it, so that helps Dx it as well. TN can also respond to it, although not as well, and gives you a good starting point.
- TN/ATN usually responds to a cocktail of meds vs. just one med, I think you need to explore that option
- Using medication interrupters to an attack (acute treatment) has very low odds of working if you’re not already supported by daily meds, this is a chronic condition that needs chronic care, not just acute care
- There are at least another dozen meds out there you can try and mix-and-match. Things like gabapentin, lyrica, amitripiline… plus lidocaine patch and other creams
Because there’s no test for this you need to be able to describe the attacks in exacting detail. Saying you have an attack and it’s intense or has a painful period isn’t good enough. You need to make comparisons to what it feels like (ex: being hit in the head with a hammer ever 15 seconds) and how long it lasts and where it happens. Different descriptions will lead to different Dx. Different locations of pain will also lead to different Dx.
Sorry, forgot to sign my name… still azurelle
Hi, I’ve been diagnosed with TN (since ~2000). I was diagnosed with an MRI and am currently on Gabapentin which will maintain me for a while and then the pain climbs over it. If I go over 800mg/day (low dose, I know) I can’t trust my walking but Dr will up my dose and I schedule myself for another glycerol injection (minimum of 6 weeks to get in) which has held me for 6 to 8 months. (less the 2 -3 mos. to reduce my meds) For those excruciating moments when I feel I’m being electrocuted in the face by some creep who chases me around and holds a hot wire to my face, I use cayenne salve. It takes bravery and pain to put it onto the shock points as I trigger TN as I do so, but the relief is rapid and SOOO greatly appreciated. It lasts a few hours for me so is a blessing in crisis. I carry a small container if this where ever I go. (also does wonders for my arthritic hip pain)
I was on so much Carbamazapine, baclophen and gabapentin at one time that I was just not myself. I was slow, foggy and wobbly. This treatment seems to be the best so far for me.
Oh, also, I would suggest that you go to lymedisease.org and check on other symptoms as neuropathy is a symptom of Lyme Disease. I have Chronic Lyme and believe my TN is caused by it.
My personal goal is to eliminate the cause (whatever it is) and to help my body recover and heal. There ARE herbs that will assist the body in repairing the myelin layer of nerves.
I hope this helps and wish you wellness.
I am sorry that you are having issues. First of all, contrary to what someone else has said, carbamazepine is the recommended first drug. If that doesn’t work, then pregablin or trileptal are the next drugs followed by gabapentin and other antiepileptics. Baclofen, which is a nerve relaxant is generally a good drug to add with any of these. Now, keep in mind, what works for one person, may not work for others. You just have to experiment.
As for antiepileptics like nortriptyline, you should be taking it all the time. If you wait until an attack happens, it of course will not help. It has to build up in your system before working.
Regular MRIs will generally NOT show any compressions. They are used to rule out MS and other things. You need to get an MRI using a CISS, VIBE, or FIESTA protocol. This can be done using a regular strength (1.5Tesla magnet) MRI, however it is better to have a 3Tesla magnet using the aforementioned protocols. The increased magnetic strength gives a more clear picture. MRIs using these protocols are generally in large city or university hospitals. This is not a guarantee that you will find compressions, but it has a way higher chance of finding them.
Finally, I wish you nothing but the best in finding out what works for you. Remember, you need to advocate for yourself. Do your research, join some FB support groups, if you haven’t already. There is one that I admin that is called TN, ATN, ON Sufferers Group. There is a lot of good support and information in that group. Our files tab has tons of information and links to research articles and results.
I had very mild TN for about 7 years. I was able to hold off on treatment then on Thanksgiving Day first bite of dinner I screamed out in pain like I had never felt before. My GP in New Jersey diagnosed me with TN. First drug I was on was Carbamazapine but only helped for about 6 weeks. He then sent me to Neurologist to put me on Oxcarbazapine. I took this for approximately 4 years, but liver function test began to climb and I was in a fog. Meds were losing their affect. I had the Fiesta MRI and was sent to a Neurosurgeon. He showed me on the MRI film where I the nerve was rubbing on an artery. I had MVD April of 2017 when I came to, the neurosurgeon said he also found a second compression with nerve rubbing on vein. He placed what I understand to be a Teflon sponge between the nerve and the artery and vein and I have been okay so far. Off all meds. I do understand that the pain can still come back. Can be in a different spot or same general area. I could not do drug cocktails because of liver function tests. Sounds like you need to see a Neurologist to get the ball rolling in the right direction meds wise and go from their. Best of luck to you.
It has been about four years and my neurologist said I suffered from “Sunct headaches” and not TN. I actually had been doing very well with a recent stretch of 1.5 years totally pain free. Towards the end of 11/21 the issue returned. Finally got to see my neurologist last week and have an MRI next month. Your information on mri’s was very helpful.