Just curious if your rheumy has connected your Autoimmune disease and your TN? Anyone have their TN go into remission by controlling a “flare?” Anyone have and intervention for their TN (gamma, MVD, injections) and be successful?
My autoimmune is primary. Earlier this year I had a flare that was the mother of all flares. I had to go off all my meds because I had to have some surgery and chemo. Before it was all done I was in the garage with a pair of vice grips threatening DIY dentistry. I couldn't us any part of my "face" and ultimately was on home infusion for fluids and a feeding tube. Of course narcs were no help. Eventually I was able to hospitalized for IV steroids once my white counts were high enough. The pain management docs tried injections with some success. But bringing the facial pain under control really didn't happen until the flare was under control. Its amazing what a "touch" of inflammation can do to an already touchy situation.
We have looked at MVD but have rejected it for now until we can control the autoimmune stuff and keep it controlled. The chances of being the 1 in 5 for whom MVD fails or makes things worse is just too great. I have a great team (except for the cancer stuff that I did out of state) that works well together. But I have found the Rheumy driving the bus works the best for me. There is no doubt in his mind of the connection.
TJ
An interesting question,
But to what type of autoimmune disease are you questioning?
I have Sjogren’s. I’ve read TN can be associated with lupus, Mutiple sclerosis, RHematoid, scleroderma. Maybe others.
I have hypothyroidism, which is an autoimmune disease. I had it for about 6 years before I had my first TN pain and it was well controlled with Synthroid. When I was put on the anti-seizure drugs, they interfered with my body's absorption of Synthroid and it sent me into full out hypothyroid symptoms for most of my 9 months in TN pain. Tegretol was the worse for this. I had a successful MVD 2 years ago and remain pain free and med free. My primary doctor had to work with me for nearly a year after my surgery to get my thyroid numbers right. They are back now to what they were before TN fell into my lap and on the same dose of Synthroid as before.
I have tested positive for an autoimmune disease but there are a lot of conflicting arguments from my doctors about which disease I have! I have fibromyalgia, TN, GN, sciatica and osteoarthritis so anything could have caused a positive ANA. My doctor has been concerned that all these types of neuralgia could be a major disease they are missing but no MRI or blood test has been positive for any. I have yet to find relief from any of my flare ups but have learned the "normal" pain relievers can sometimes worsen the pain. Several people on the site have found relief from special diets or herbal treatments. I hope you find something that gives you relief!
Do any of you have numbness on your face associated with your TN?
I did have, but after my operation for Eagles, that has improved. It was in my lower jaw and cheek one side. That's strange though, 'cos the aching and burning I get is still there, and has been worse!
I have several autoimmune diseases: hashimotos, ulcerative colitis and COPD. I was recently, last Saturday, diagnosed with TN. I am not yet on medication. Good luck to you. I'm glad to be on this site.
Thanks.
Ues. Right cheekbone and sometimes the right side of my nose goes numb.
Annie said:
Do any of you have numbness on your face associated with your TN?
Yes, I have had numbness since my first (and only, so far) episode - the numbness is left lower part of my chin and lower lip. Does this numbness go away?
My numbness is progressing. It’s developed over 3 months. From my lower eyelid down is numb on one side, and half my tongue and half the inside of my mouth. You would think this would decrease the pain and shocks and sensitivity of things like hair, wind, etc but it hasn’t. I’m just feeling so sad and depressed about this really. If this TN is antibody driven due to to my autoimmune disease, then how do I get the antibodies to stop? I’m taking Plaquenil and as you can see it’s not working
This disease is the freaking pits. I got acupuncture 3 days after my first and so far, only episode. I think that has helped a bit. I have intermittent tingling and sensitivity on my lower cheek and chin. I have heard from others - not on this site, that acupuncture and cranio-sacral therapy helps. I have not taken any meds yet as I don't want to. I am wondering, since the pain is manageable, why I should start taking these meds anyway. I read somewhere that the meds prevent the pain pathways from getting "fixed" and permanent but I don't know if this is actually true or not.
Annie, I just lost a dear friend to a much worse disease. She modeled grace for me and appreciated every good day she had. I am going to go that route. Today I took an hour walk and it was great - it was a beautiful fall day. If tomorrow is terrible, I'll deal with it then. When I think about the future, I, too am sad and depressed. I just have to focus on what is good.
It is true that the right medication can prevent the pain from starting. It can take time to find the right medication for you. This isn't technically a progressive condition, but some people find that their pain changes over time or gets worse, so you may find at some point that you want to try medications or other therapies. For now, if you're able to find relief naturally, and prefer that route, I can't see why your doctor would have a problem supporting you in that.
Nonna said:
This disease is the freaking pits. I got acupuncture 3 days after my first and so far, only episode. I think that has helped a bit. I have intermittent tingling and sensitivity on my lower cheek and chin. I have heard from others - not on this site, that acupuncture and cranio-sacral therapy helps. I have not taken any meds yet as I don't want to. I am wondering, since the pain is manageable, why I should start taking these meds anyway. I read somewhere that the meds prevent the pain pathways from getting "fixed" and permanent but I don't know if this is actually true or not.
Annie, I just lost a dear friend to a much worse disease. She modeled grace for me and appreciated every good day she had. I am going to go that route. Today I took an hour walk and it was great - it was a beautiful fall day. If tomorrow is terrible, I'll deal with it then. When I think about the future, I, too am sad and depressed. I just have to focus on what is good.