Can anyone share their trigeminal neuralgia experience with me? Is there hope? Do you have numbness? Has anything helped it go away or stop progressing?
I have TN- type 2/ Atypical face pain, with constant aching in my lower jaw/ teeth, and regular spells of aching in my upper jaw/ teeth, eye, and across my scalp. It's mainly one side, but I do have it occasionally on the other side. I think it's more than likely down to Eagle's Syndrome (an elongated bone at the base of the skull which can press on the nerve) rather than anything to do with Sjogrens though. Before surgery I was also starting to have numbness and tingling on my cheek too, but that's stopped now. Unfortunately not the rest- that's getting worse. I have noticed that it is definitely worse with the muscle knots I have all around my neck and shoulders, and with bad posture. Like sitting for too long at a computer! I'm on amitriptyline which has helped a lot- and it helps with sleep too which is a big bonus!
For anyone else with TN- the Ben's Friends TN site is really helpful!
When this first started, I was reading that painful TN by itself is more likely due to compression (by vein, artery, tumor, hadn’t heard of eagle), but that if numbness was a component it implies antibody attack (I also read Lyme can do it).
So if this nerve issue is caused by antibody attack, how can I make the antibodies chill out?
Thanks for the Ben Friends TN rec. It has been helpful, but I’m looking for info on autoimmune related TN and if I can stop progression or reverse the cause. Gabapentin helps my pain a but it feels like I’m just putting a bandaid on a festering wound that really needs an antibiotic.
Does anyone have any form of neuropathy associated with their SS? What treatment are you on? Did it reverse it ?
That’s interesting, the numbness component. I have some neuropathy, tentatively diagnosed as small fiber neuropathy, but no biopsy at this point to prove it. Right now it’s manageable so I am not treating the neuropathy specifically, but am treating the autoimmune component.
Annie said:
When this first started, I was reading that painful TN by itself is more likely due to compression (by vein, artery, tumor, hadn’t heard of eagle), but that if numbness was a component it implies antibody attack (I also read Lyme can do it).
So if this nerve issue is caused by antibody attack, how can I make the antibodies chill out?
Thanks for the Ben Friends TN rec. It has been helpful, but I’m looking for info on autoimmune related TN and if I can stop progression or reverse the cause. Gabapentin helps my pain a but it feels like I’m just putting a bandaid on a festering wound that really needs an antibiotic.
What med are you on and where is your numbness?
Annie- I think this question was directed at me?
I have had facial numbness and twitching, pain and burning on the balls of my feet, and just randomness all over. I’m not on any meds for the nerve stuff. Meds I do take are Enbrel, diclofenac (an nsaid), and leflunomide which is a dmard.
Annie said:
What med are you on and where is your numbness?
As far as Lyme disease contributing to TN, I think that would be a case of Post Treatment Lyme Disease Syndrome. In rare cases, patients who have been successfully treated with antibotics for Lyme can develop autoimmune diseases resulting from the body's immune response to the initial Lyme infection. Inflammation from an inflammatory autoimmune disease could cause irritation to the Trigeminal Nerve or surrounding tissue/ structures that result in pain. In those casues, treatment for the autoimmune disease in addition to medications to control the symptoms of TN would be of benefit. However, any connection between Lyme and TN has to be INCREDIBLY rare, since I can't find a single scholarly article for it anywhere. It can be connected to inflammatory autoimmune conditions as I described above. I sincerely hope you are able to get some relief soon. I can only guess how painful that must be. Remember to take care of you!
Hi annie, I'll share my story which sounds a lot scarrier than it is..... TN is very rare and is only 1 of about a 130 known conditions/causes of the face pain neuralgia you are describing and has such has frequently become a "junk diagnoses" and everything that goes with it. Actual TN where blood vessels impinge the nerve is rare.
That being said I have dual dx of PsA and SS along with periodic bouts of what can be described as TN. I understand where you are at........... Last winter I was having some other problems which lead to diagnoses of colon cancer. I had surgery to cut it out and as a precaution went a round of chemo. It took care of the cancer (knock on wood) but because of the troubles I had to DC all my meds. Its a great way to learn they to more good than sometimes we think (Nuff said)
I was woken up one morning by the most god awful "tooth pain" I have ever had. My whole face hurt like a s-o-b. I was waiting at my dentists door when he opened up. He ex-rayed cold tested etc etc for an hour and couldn't find a thing. Meanwhile I was looking for a pair of vice grips to start pulling teeth. He called my rheumy who sent me to the ER where they started massive work up TMJ xrays etc etc and ultimately a whole head neck ct and MRI. What they found that day was all SS everyone of the little glands in my neck was inflamed. They started me on IV steroids and fluid IVs they day before they were going to insert a feeding tube (I hadn't been able to eat or drink for week by then) the steroids finally took hold. I was then able to restart my meds (which took a while to kick in.
I wish I could say that was the end of it...... I have had several more similar bouts but thanks to being back on my meds oral steroids has done the trick (I'm on day 3 of a five day burst as we speak)
During a bout this past summer they repeated the neck CT and it showed no inflammation but a hunch they did an echo cardiogram (based on xrays) and low and behold found an aneurysm on my ascending aorta. We are managing it medically as I have refused open heart surgery. (for now - I don't want to give up my meds and frankly I'd sooner have a ruptured aneurysm than uncontrolled inflammatory disease its not suicidal, its a quality of life decision and I'm old its only a 4mm annie so chance of it rupturting are fairly low)
Is it all related? You bet it is.All of it the face the body the cancer etc... Inflammatory diseases can effect everything everywhere. Grumpie makes a good point about PTLDS. The original lyme can (about 5% of the time) injures the immune system causing these symptoms. Usually the body recovers. Sometimes it doesn't.
I can not stress enough to everyone the importance of taking all your meds every day without fail even if you THINK you are doing okay, prevention and control of inflammatory processes is critical.
This BTW is the most I have shared about me anytime anywhere. I hop it is helpful.
Wow, TJ…that does sound scary. But point taken about staying with the meds.