Hi there , for a long time I would occasionally get severe shooting, searing and electric like pain in my face, mainly the right side. It would last a while and go away. However in December I had it really bad and the doctors said it was a sinus infection and gave me antibiotics. They did not help however the pain reduced greatly for a month or so. The pain has now been back for about 3 weeks with no relief. They gave me more antibiotics but they have not helped at all. I went to the dentist had x day done and it has nothing to do with my teeth.
Now the pain doesn’t necessarily get worse when I touch my face. The pain is the worst I’ve ever felt and seems to come in a series of episodes. I will get relief for about a half hour a couple times a day. These last 3 weeks of pain have really affected my quality of life . It mainly affects one side of my face but the other side sometimes hurts too. Now I mentioned it could be TN to my doctor and he said it’s a possibility but thinks I’m to young( 26 yrs old) but he’s sending me to an ENT to rule out sinus first. It could be weeks before my appointment with the ENT and will be longer to see another doctor after that. I can’t go that long with this pain . Any advice on what I can do for the pain while I wait? Any advice would be greatly appreciated.
I just want to say that I was only 29 when I first had problems with TN. And some drs will also say that because you are having bilateral pain (on both sides of your face) that it isn't TN. Bilateral TN is not as rare as some drs seem to think. I have it. And I was told a figure that one fifth off all members on this website have it. I also don't have any specific triggers. Some people do and some don't. It can be very difficult to get proper help at first.
It does sound like TN to me. TN can be unpredictable with many episodes in one day and then not any in days. Mine is the same. Comes and goes.
I also want to commend you for not running to the dentist, but looking for answers yourself first.
Where on the right side are your pains mainly?
I'm sure one of the moderators will chime in or someone with Type 1. Hang in there!
Thanks for your response, I appreciate it
The pain is located in my lower cheekbone. So yours comes and goes randomly? This is the longest I’ve had this without it going away so I’m concerned that it could be here to stay.
Often a Dr will take as confirmation of a TN diagnosis, if you have a positive reduction in pain if you take an anticonvulsant. You could discuss taking a course of them with your Dr. I am hoping for relief for you.
Well, to put your mind at rest you need to research that. They are powerful meds and they do have side affects. They don’t work as the normal painkillers we are all used to such as aspirin etc. they build up in our system and help more as we titrate the dosage. The Drs recommended regime must be adhered, it can be detrimental to take too large a dose to quickly. Almost all of us here will take the side effects over the Tn pain. Any day.
My tn was not affected by touching my face or brushing my teeth. I, too, had episodes that were crazy painful. I did research and pretty much went to my doc and told him what i suspected. He put me on tegretol right away ( he prescribed the generic called epitol) This drug is used to diagnose TN. If it works to alleviate the pain-- you have tn!! There is no reason to wait in pain any longer!! I took 200 mg --100 in am and 100 in pm. within a week the pain was gone and has not come back. You start with a low dose and take more if you need it-- it starts working within a few days! The only side effect i had was a first i felt a bit drunk and light-headed but part of that was because I wasn't able to eat. Some people are on 1200 mg/day-- so the low dose is no big deal... It has been nine months and I am now off all meds. If you catch it early before the nerve gets all worked up i think it is easier to control!! If your doc won't just give tegretol a try-- go to a new doc!!! I, too, was in a panic and had horrible pain in all three nerves--couldn't eat or even sleep much--so there is definately hope!!
Good luck-- go to the doc-- tomorrow -- let him know HOW BAD it really is and tell him you want to try this!!!
Hi Tacocat, thanks for your input, our situations sound very similar The doctors around here are terrible and I’m hoping one will listen to me and try something for me. It’s good to hear that your doctor listened to you and helped you out and that your pain is gone. I will try tomorrow to see a doctor. Thanks again.
Yep-- it might help if you print some info off the computer and take it along. Especially about how they use tegretol to diagnose tn. Many docs have never even had a patient with tn or even heard of it!! My doc looked online when I told him what I thought I had and he agreed when he read the symptoms! Also-- don't be a tough guy-- tell him how BAD it really is.. this is not like any sort of "normal " pain!! It threw me into a panic-- you can't go on living a normal life when you are hurting like that!! Hope you are feeling better soon. This really sucks but lots of people deal with it pretty well.
One other thing-- I called the tn clinic at John Hopkins-a pretty famous hospital in Baltimore- and they said you don't even need a neurologist-- they said a regular doc and prescribe the meds. You only need a neurologist if the meds don't work!!
Adam said:
Hi Tacocat, thanks for your input, our situations sound very similar The doctors around here are terrible and I'm hoping one will listen to me and try something for me. It's good to hear that your doctor listened to you and helped you out and that your pain is gone. I will try tomorrow to see a doctor. Thanks again.
Thanks for the tip Tacocat, I will print some stuff and and bring it to the doctor. You’re right it isn’t a normal pain, it’s in a league of it’s own. Thanks for the advice and support.
My appointment went terribly. The doctor refused to believe it could be TN. He said wait for the ent. I feel so hopeless. I went out and bought zostrix cream which seems similar to lidocaine .
