Maybe y’all can help me understand what’s happening to me. I feel crazy 99% of the time. I need some support. I don’t have a diagnosis yet. I’ve only done extensive research and drawn my own conclusions. Here is what I am experiencing - it all started about 11 years ago with burning mouth syndrome and mild to moderate facial pain. I tried tegretol and neurontin but the side effects were too much. Clonazepam was the only thing i could tolerate and helped with the burning pain. I basically coped for many years by using drugs. In fact this all started a couple years after I started using crystal meth, during a brief break from using. When I stopped doing drugs the pain came back and it was more intense but happened in flares so I just got through it. I did a lot of research and always came back to TN but didn’t fit the typical description so I would move on in my research. Well after I had my son (he is almost 11 months) it’s gotten progressively worse. The flares are longer and longer with very few pain free days in between. In reality, I always have pain it just fluctuates from mild to severe. Some days it’s barely noticeable and I can get through the day feeling ok. Other days I don’t know how I get through it. I work 4 days a week, am a wife and mother. It’s overwhelming and finding a balance is challenging to say the least. I also have suffered from migraines since I was little and those have been at an all time peak lately. Anyways. The pain has mostly been on both sides of my face. Which I know for TN is rare. I feel it in my cheeks, nose, sinus, teeth, jaw, around my ears, sometimes temples. It is burning, aching, tiring, pulling, cold, tingly, stinging, heavy, full, numb and pressure. Lately it’s fluctuated from side to side. It started happening on the left and then on the right. The other night I felt a migraine coming on but it was different than any other migraine. The left side of my face ached, it was numb feeling, tingly, burning, and felt tight but I could move it just fine. The pain went around my ear and eye and forehead jaw and cheek. In desperation I took a clonazepam I had left over from before I was pregnant and the burning and ache subsided some. The next day I still had pain but it was mild compared to the night before and I got the ache to subside eventually with Advil and ultram. The following day the right side of my face felt funny. It was numb, tingly, burned, but had a cold pain too. Even the right side of my lips felt numb. It subsided within 30 mins and I had 2 relatively mild pain days following that. My dentist doesn’t think this is TMJ related, or bruxism related even though I do clench - I have a night guard and NTI and neither one seems to help or hurt either way. I try to correlate the pain to those devices but I don’t think they are contributing. When I shared my fears with my dentist about TN he actually felt I was on the right track and encouraged me to see a neurologist. So I made an appt and its the end of the month. I’m documenting everything. Trying to find triggers. I feel like cold, the fan on my face, chewing, excessively talking, intense exercise, and stress are definitely triggers. Also, when I scratch the inside of my nose with a tissue after blowing it (to clean it out, no im not picking my nose :-P) there is a spot that has never quite healed from the drug use and that spot can make my entire face, especially that side (the left) buurrrrnnnn and ache so bad! So I am just totally confused and would like to hear other people’s experiences. I hope someone out there has been through something similar! Thanks for listening!
The pain you are describing can very well be bilateral ATN combined with a neuralgia of the 8th cranial nerve rather than the 5th (Trigeminal nerve). Some practitioners would call your combination bilateral trigeminal neuropathic pain, which can be pretty much the same thing. Some of the symptoms would be called "parasthesia", also fairly frequent in trigeminal pain. Nerve lesions from crystal meth do not appear to be well studied in the literature of neurology, but they could plausibly be a source of peripheral nerve damage that has contributed to your pain patterns at least in part.
FYI, when I surveyed 1800 of our member records a year and a half ago, I found that at least 20% of our members reported bilateral pain, and 40% reported atypical TN as a component in their pain. The term "atypical" is gradually passing out of general neurological practice and I think better so.
Clonazepam is used most often in treating panic disorder, and in treating certain types of epileptic seizures. Use in facial neuralgia and neuropathy is off-label but I believe reasonably common. Some patients do get positive relief from it. If you haven't already been tried on Trileptal, that would be another avenue to explore. Trileptal (Oxcarbazepine) is better tolerated than Tegretol or Neurontin by some patients. Also of interest would be tricyclic antidepressant meds like Amitriptyline and Nortriptyline, which have a known cross-action against neuropathic pain.
Please consult your neurologist on these options.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
I have bilateral atypical pain as well. I think it’s more common then what you think. Look at different discussions there are different groups within the living with tn to help support you as well. You’ll get a lot of answers from your neurologist. And probably have a MRI. But I would also look into a pain management place. It’s going to take time to find the right doctors and the right concoction of medication to work for you. I to am allergic to Anti seizure meds. So we are pretty much on the same boat although I did not do illegal drugs. Also look into acupuncture and homeopathic remedies to help ease the pain if your pain meds aren’t working to their full effect. I pray you will find the answers you are looking for. But from the sound of all the descriptions you have listed, I would personally say you have TN. But again, this is my own personal opinion and experience from having bilateral atypical tn. I also have ON, TMJ and my C3 & C4 of my neck/spine are damaged which also causes me a lot of grief. I pray that the Neurologist has experience with TN and can get tou on some medication that will work for you.
God Bless and Healing,
Amy
I also have bilateral pain, which is ‘atypical.’ as Amy84 says above, it’s probably more common than you’d think. I’ve had good success with amitriptyline after several of the anticonvulsants failed to help substantially. I’ve found with this atypical stuff, there is a lot of trial & error work. be patient, keep the faith. most people find some things that help, but it can take time. hang in there!
Dear Sara, I hope you find some answers from the neurologist. This type of pain can make you feel crazy. You are being proactive and will find relief soon. Whatever diagnosis the neurologist gives. I have bilateral TN and I just want to say that if the neurologist prescribes anti convulsants I hope you will give them a fair chance. I had terrible side effects from the Trileptal (oxcarbazapine) at first. I was afraid to take them and afraid to stop them because I could tell they were helping my pain a little. Going backwards was not an option. My doctor had me increase the med more slowly and encouraged me to continue if I felt I could. For me, the side effects were a better option than the pain. Eventually the side effects got much, much better and the meds ( a combination of them) really helped. I too felt like I would go crazy if I didn't get some relief. The pain can really mess with your head. Warm wishes sent your way.
I also have bi lateral tn as well as ON and degenerative disc disease it took me a little while to find the right combo of drs that would woek with me to help controll my pain. But now I’m on the right combo of meds and have had surgery to help with some of the issues and I’m doing much better. My advice is keep asking questions, doing research and give the meds that the drs prescribe a chance before you give up a d try a different med, meds are kinda trial and error they dont all work the same for every pain for every body and a journal definitely helps.