In the last year TN has been cropping up now and then. I have it mild. Mostly pain in skin, with some shooting pain. Was bad in June, and was put on the steroid pack and pain meds and something else, got rid of it, to the tune of gaining 12 pounds and edema. Most of the time I do not have to deal with it or just ignore it. Back yesterday and today, left side of face hurts, left eye dryer than normal too...small problem sleeping. Been taking aleve but not this afternoon, as it seems to have only minor impact. What do you do for it when you have it and for minor attacks?
Oh yes Spring, used to get it a lot - before Lyrica that is! It would get so bad that I wished someone would have pulled my teeth and gums out of my mouth (it would hit and hang out for an hour or even days - never knew how long or how bad it would be from episode to episode). Was never put on steroids for it, but I wished someone would have done something a lot sooner; awful pain and I sure do feel for you.
Are you on Lyrica or a similar med? If you're not, can you see if the rheumy or neuro will give you a script (it may take a few weeks or so to build up)?
Hang in there and ( ( ( H U G S ) ) ) to you!
Patze
I had Lasik eye surgery in 2000 and got the gift of trigeminal neuralgia in my left eye. My surgery was a disaster and I still have bad vision from the surgery. For 9 years I had this incredible pain in my left eye that then went into my facial area around the eye. I spent much of my time lying down with an icepack on the eye which would help.
I did not have sjs at that time, or did not know it. Was dx in 2007. A couple of years ago a doctor wanted to try Lyrica on me. The Lyrica helped the pain in my eye and also the numbness around my lips and face area. The numbness was different than the TN. The TN was some sort of injury from the Lasik surgery. It looks like Lyrica has helped a couple of us.
Yes indeed Lucy, when it struck, it was like a continuing electric shock along my gums (both upper and lower)... My gosh, I don't wish that mess on my worst enemies worst enemy.
Patze
The Trigeminal Nerve appears to be part of the stomach meridian. A gentle mint tea like spearmint or wintergreen may help to reduce some of the Trigeminal Neuralgia. An infection under your teeth could also be a trigger that antibiotics could relieve.
Spring, sorry you are having to deal with this. I had never heard of this, so I read up on it - it sounds painful. :(
Hoping it settles down for you.
You had a cold recently, maybe this is somehow related? The picture I saw of where the three main trigeminal nerves in the face are the eye, nose/cheek area, and the jaw. Have you had any dental work done or dental pain?
Wish there was something I could recommend, but I don't know of anything.
Wonder if warm compresses would help?
Bucky
Hi Spring,
I'm sorry you're having pain from TN. It is extremely annoying and painful.
I had it a long time ago when I was diagnosed with Hash. Thyroiditis and Sjogren's. At the time I thought I was getting multiple sclerosis. My primary doc had me get an mri which was clean and showed no lesions.
I never took anything for the TN because the pain episodes were not constant and would kind of subside on its own for long periods.
I had a very sharp, extremely painful, shooting electric pain on the right side of my face. My teeth and gums did not hurt but sometimes I had to be careful opening my mouth to eat because the shooting pain would startup again on the right side of my face.
If the pain and discomfort is affecting your quality of life and from enjoying things you like to do, I would definitely consider speaking with your dr. about it.
I wish I had a helpful forum like this when I was first diagnosed. I think its great other sjoggies share their experiences and let you know what has worked for them.
That's the weird part for me Spring, mine did hurt on one side of the face or another, but it always involved the gums on the particular side of the face that was effected at that time. I do understand that it usually common to have it effect the face only and sometimes it involves the nose and eyes, but my body has always been a bit different. ;) :D
http://www.emedicinehealth.com/trigeminal_neuralgia_facial_nerve_pain/article_em.htm
http://www.medicinenet.com/trigeminal_neuralgia/article.htm
These have some good information about TN.
Take care -
Patze
I don't know what I have. I just call it cranial nerve pain. Taking low dose cortef helps. I take it all the time. Extremely painful condition!
Spring, Sorry that you are having this symptom now. Sometimes people will have TN from the way they chew or they may grind their teeth in their sleep and it places pressure and irritation on the nerve.
I hope you can get this settled down and never see it again. Have a good New Year. Irish ;D
I had this and it was terrible. As bad as mine was, from my reading I think I had a mild case compared to some, yet it contributed greatly to my "non-functional" days. MRI was done and shown to be normal. I had a tingling / neuro sensation moving around my eyes, cheeks, bridge of nose, upper lip, and back of teeth. The main focal point was on my right cheek, just under my right eye, the pain would start there and migrate to the rest of the areas, every 10-15 seconds or so, round the clock. At it's worst, my sinuses went numb and very dry, and the back of my mouth and throat went very dry, and my eyes were bone dry, with an STT of 0 (leading to blurry vision and additional headaches). The sharp, shooting electric pains out my ears and teeth were the worst, but thankfully, were brief in nature.
In my case, aboutg 95% of the symptoms cleared up with thyroid hormone, being especially responsive to T3. Currently I'm on T4 only, and not optimal for either T4 or T3, and I'm left with just a mild tingling on the right cheek still. I can always tell when I'm a little hypo, because the tingling worsens. It improves when I'm hyper. I'm currently swinging beween the two states because I have Hashi's. I'm also convinced my symptoms are worse when the antibodies are higher. My current goal is to try and get rid of these antibodies if possible; if that ever happens, I hope to get rid of the TGN for good. I know this may be wishful thinking, but I'm going to try anyway.