Hi. I'm new to this site and I've had a bit of a read through other discussions and hope I haven't missed anything and am repeating an earlier question ...
I'm not sure if I have TN (I have been tentatively diagnosed as such). I have a blood vessel pressing on my trigeminal nerve which they believe is causing my face to be numb (picked up on a CT scan). I have numbness on my left check, scalp around the ear, above/below my eye, sometimes close to my nose, and twinges in my lips and tongue at times. It comes and goes (possibly related to caffeine intake - I've started monitoring this). I have no pain at all.
Is there anyone else like me - with numbness but no pain? Did anyone start this way and the pain followed? This only started about 6 months ago and my neurologist has no explanation for my condition, and I've been told to get back in touch if it gets worse (the affected areas are now slowly increasing, so I've emailed my Dr for advice). If anyone had any comments, I would be really interested to hear.
It sounds as if you have TN based on the MRI. And my neuro noted and also the pain center doctor noted my period of numbness before I had TN pain. But my numbness was years before my TN. I had a period of numbness that lasted for about 2 yrs but gradually got better. There was also no explanation but mine happened after a severe allergy attack which caused my face to swell. That was the night before the numbness. And then my TN hit me out of the blue. And caffeine can aggravate TN. Anything that can cause a migraine may also aggravate TN.
Even though you are not in pain, have you consulted a neurosurgeon about your MRI results?
My TN didn't come on gangbusters like so many other descriptions on this site. Mine was a lot of numbness and tingling that just got worse, worse and worse until I realized that there actually was pain in the mix.
My TN is NOT electrical shock pain - it is more the tingling - burning type of pain.
As you may have already figures out from browsing this site - everyone is different but there is likely someone out there that shares a similar story with you.
Clare - I hate to tell you but some days it is all the way up to a 10 on the scale. At first it was the annoying tingling sensation then more burning than tingling. Go to Stef's discussion where she asked people to describing the face pain in detail. I have a fairly lengthy detailed description on there that I think will really help you.
It sound like you may be starting where I did. With a lot of numbness, tingling and annoyance rather than pain. Please be cautious when you read my posting on Stef's site. It has been 5-6 years since I have been diagnosed so what I feel now may not be what you will have in the immediate future.
Yes - I do take meds. Right from the beginning I started with tegretol / topomax combo. I have been on it ever since in increasing dosages. Right now I feel I have developed an intolerance and I am seeking to have the drug changed. I am starting to do a lot of research on MVD. I have no clue if that will be an option for me.
I hope this helps.
If you have trouble finding Stef's discussion - let me know
Elaine
Clare said:
Thanks for replying Elaine.
How bad is your pain now? A few times recently I have thought the tingling has a slight burning edge to it ... But then I try to ignore it (much like I did when I first felt the numbness!). Is your pain triggered by things as other people describe (i.e. touching the skin, etc.)? Do you take medication for it? Have you considered decompression surgery for it?
Unfortunately yours sounds very familiar to me. When I was first diagnosed in in 2001, I had the more stereotypical descriptition. But, then I had the cyberknife treatment and it was successful (2007). Then this summer I got hit in the head by a softball this summer and have had the numbness, tingling, stinging, burning and pain progressing quickly. I am currently switching off of Neurontin (Gabapentin) since it was not working when at a healthy dose paired with Nortriptylene also at a healthy dose. Before my cyberknife treatment, I was on tegretol, baclofen, nortriptylene and neurontin. Too much! I am too young to be on that many meds all the time! Right now they are switching me to trileptyl but today was HORRIBLE! I was almost in tears all day with so much pain. I hope it is better for the rest of y’all.
You have the same type of TN I have. Not a compressed nerve, but a nerve irritated by the blood vessel beating against it. There is a surgery where they insert a silicone disk between the nerve and blood vessel, protecting the nerve. I have pain though. But if you ever do get the pain, that less complex surgery is an option.
I moved up to a higher dosage of trileptyl on Monday and I think it finally got to a therapeutic dose today because tuesday was pretty awful too. But today was great! Yay for good days! It is such a relief to have a day without constant tics, pain, twinges, stnging, feeling like you’ve been beaten. Right now I have a small amount of pressure for the first time today. That’s about it! Yay. I hope the rest of you can have a similar experience today or tomorrow. Thanks for your support.