Hello Everyone! Thanks for the warm welcomes and comments on my profile - It's great to know that if in fact I am diagnosed with TN that such a supportive group is out there!
I only just began to experience the facial pains associated with what I assume to be TN about 4 days ago...Awaiting a CT scan on Friday and the results next week to get more details. Luckily (or perhaps better phrased "unluckily"), I am very familiar with the signs and symptoms of TN due to the trials and tribulations my mother has experienced over the years, and was able to relay this concern to my doctor, who reacted quickly to help me determine the root of my pain...What at first I assumed to be a one-sided sinus infection quickly became something else entirely when I began to experience the worst pain of my life in my jaw, check, and temple.
I took my first dose of Tegretol yesterday - 300 MG twice per day - And began to see almost immediate improvement within about 4 hours...The pain is still there, but extremely muted and not as sharp/stabbing as before.
The only thing left to rule out would be dental issues, but my last visit about 3-4 months ago did not reveal any concerns in the x-rays they took - Although at that time, TN wasn't even on the radar...But I would only assume that they would have mentioned any problems they saw at my last visit, and doubt that such an extreme condition could develop in that short a period with regular brushing.
Knowing the long-term effects of Tegretol, I'm left feeling very apprehensive and concerned. It's my hope that the sinus infection brought this about, and that once it clears up, the TN will go away with it...Hopeful thinking, I know.
I pray for you that it is indeed a sinus infection and will be gone soon....
However, i don't think the tegretol would help with a sinus infection.
When i was first diagnosed, my dr basically gave me a prescription for tegretol...said go home and take one. after four hours if it's not gone, take two...etc. Take 200mg every 12hrs helped so much! He told me that the fact that tegretol helped was basically a confirmation that it was TN.
Eventually the dose had to be increased as my pain increased. I'm taking 1200mg each day now....plus other meds.
Anyway...it's good that you are informed about the condition and know right away what to ask about. It took me years (years!!) to get a proper diagnosis. So for that, i am happy for you!
Welcome to LwTN! Glad you’ve had a positive reaction to the Tegretol! Sorry too…with your familiarity due to your Moms suffering, I hope it’s not TN.
But if it is, remissions are possible and low dose meds can keep the monster at bay, I hope your pain continues to respond well, and I wish you the best!
(( hugs )) Mimi
Thanks Mistee, Mimi, KC, and Jackie for your replies and info!
My mother was very lucky to have an amazing neurosurgery team, led by Dr. Richard Ellenbogen - Her initial MVD was done at Walter Reed back in the mid/late 90s, and I believe with her more recent experiences, she can point me in the right direction for a specialist in our area.
That was my next question...Does my reaction to tegretol confirm TN...Sort of a bitter-sweet dose of reality :-/
It's been a pretty bad year for me (2013) in terms of health, and at 31, I'm starting to wonder what's next!
Started out 2013 with a workers comp injury...The hassle of dealing with the claim process was almost worse than the injury...But that ultimately required surgery on my shoulder/bicep, which will never really be the same.
Then I screwed my back up and had to start seeing a chiropractor...Luckily, that's subsided with regular stretches and exercise.
Next, I sprained my ankle playing kickball...As that ankle healed, I favored my other foot too much, and ended up with a swollen tendon that required a pneumatic boot for six weeks.
I discovered last year that I'm allergic to my pet cat of 12 years, as well as dust and grass, and have to get a shot every week...Cat still sleeps with me - Not giving her up for anything - lol
Throw in a few intermittent sinus infections throughout the year (those always having been an issue for me)
If you tack on my sleep apnea, high blood pressure, and carpal tunnel, it's a real sh#t show! :-P
I'm an upbeat kinda guy and take the good with the bad though...On the positive side, I've lost about 35 pounds, and counting still! Not to mention I have an amazing wife who puts up with all this mess! And now it appears as though I've got a really great group of folks here to guide/support me through this...
I've been very active in other online forums in the past, and am looking forward to getting to know each of you and contributing as best I can :-)
Welcome to the site though sorry you are here, it is always great to talk to someone in the same position. The guys here are terrific. Hope you get results soon and it is not TN but as others have said Tegretol helping usually confirms it. Hope you keep well. Let us know how things go on.
A positive response to tegretol is often seen as a positive sign of TN. I
IsThisReal said:
Thanks Mistee, Mimi, KC, and Jackie for your replies and info!
My mother was very lucky to have an amazing neurosurgery team, led by Dr. Richard Ellenbogen - Her initial MVD was done at Walter Reed back in the mid/late 90s, and I believe with her more recent experiences, she can point me in the right direction for a specialist in our area.
That was my next question...Does my reaction to tegretol confirm TN...Sort of a bitter-sweet dose of reality :-/
Welcome to the site and I'm very sorry that you may have this awful affliction. (not sure what else to call it) :( It was interesting to me that you mentioned that your mother also has TN. I had never heard of TN until I came down with it 4 years ago at age 56. Thank god for a successful MVD surgery. I found out last year that my aunt on my fathers side of the family also has TN. Was wondering if it was possible for it to run in the family? It's just a thought. Everyone wonders why me?
Anywho....again welcome to the site and we are here for you.
I'm sorry that you are have had so many problems with your health and I am sorry too that you are facing the possibility of having TN.
My mother has TN and I have ATN. I have never seen anyone else on here that has it in their family. I am the forth person in my family to have TN, or symptoms of it anyways.
Having it in my family I was fortunate to know the symptoms but it is also scary to see how it can progress. My mom has suffered terribly over the years. It sounds like your mom has been through a lot too.
This is a wonderful website and everyone on here is amazing!
So sorry you had to join this group, but yet happy you have found it. Sinus infections, dental problems and sometimes just the wind blowing across your face can trigger a TN flair. Do not confuse triggers with the actual condition......this disease is great at mimicking other conditions, it hides amongst normal problems like colds, it follows the weather patterns.Everyone must learn how to spot it and deal with it on their own because this disease is also highly personal and hardly affects any two people in exactly the same way. I am glad the Tegritol seems to be helping, i could not take it due to side effects. You may want to ask about adding an anti-depressant to it like amytriptolene to it, Depression is common amongst us and I really noticed a positive change in my life after being started on the amytriptolene.