Joining the TN club

[ARCookie]

What a great group of people that hang out here! :)
But I'm not thrilled to become a member of this club. :(

I was diagnosed with TN by a small town ER doctor on 8/4. That is amazing to get a diagnosis so quickly. Having a close friend with TN, I pretty much knew what I was dealing with, but was hoping for something else. He started me on 200 mg of Tegretol which immediately stopped the stabbing attacks.

I finally got in to see a neurologist this week who confirmed the diagnosis. I believe it it TN2. I have a one-side headache, sore teeth and various deep aches on the left side most of the time. It is worst after 9 pm. (I take meds at 8). The Tegretol is making me clumsy and stupid. Three times I have ended up driving to places I did not intend to go, etc. Overall, I am much better off than most of you who have been at this a while.

This forum does several things for me. First, it scares me to death about where I may be headed. Second, it inspires me to see the attitudes of people who are struggling with things I have never had to deal with (yet). Third, it is a great source of info.

Thanks for being here! I will have lots of questions

Joy in Arkansas

[gene1950]

Welcome Joy!

I can understand your feelings about not being thrilled to be here. When I was first diagnosed all I found was doom and gloom, then I found this site. While we may not be a laugh a minute, we do take some time out for some humor.

The side affects of tegretol will diminish as time goes on. Actually, I rather enjoyed those side trips to places I had never been before! It was finding my way back home that was the problem.

Don't be afraid to ask questions. We have some rather "interesting" dialog.

[ARCookie]

Thanks, Gene!

I appreciate your humor! It does indeed help to laugh. :p

I've never been graceful (my Mom named me Joy, not GRACE!), but I just missed a step and landed on my behind (ouch!). You are saying this gets better??? I have a feeling that the same mechanism that helps "get used to" the meds will cause me to have to up the dose.

[Fizzbw]

Hey Joy!

So sorry that you are here to! But glad that if you had to you found us!

Tips - join the TNA, buy Striking Back, get an MRI to rule out other things, know that you are brave enough to cope with this, talk to us if you have any questions or need support on anything.

Also - don't be too discouraged by some of our horror stories! There is a natural selection which means that the ones for whom the meds work or the surgery, dance off into the sunset quite rightly to live life to the full!!! I hope you do to!

Big hugs

Niki x x x

[ARCookie]

Thanks, Niki... I got the MRI yesterday... Still waiting for results. I have Striking Back and really appreciate the info.

[EE03]

Joy, welcome, etc... we all hate that we're here, but glad for the understanding and support. Hang in there, Ellena

[baywatcher]

Hi Joy - nice to have you here - wouldn't wish tn on anyone, but I've found this site supportive and informative and have made some good friends here. How great to be able to talk to folks who actually understand and sympathize, a lack of understanding in the general world is tough to take sometimes.

But be assured, there's a lot of life and pleasure ahead, tn or no tn. We'll look forward to hearing more as you learn, sharing is a big part of what keeps us all sane and healthy (well, most of us are sane most of the time!).

Your dose of tegretol is pretty low and may be raised, and most but not all of the side effects lessen to a tolerable level after a while. You'll cope as we all do with some little adjustments here and there. Hugs, Nancy

[bilateral]

Hi Joy,

Welcome to the forum. You'll find it a great source of information and soon you will know more than some of the doctors who are treating you, but that also means that you can take an active part in your own treatment.

The side effects of the drugs increase as your dosage goes up, but having said that, you get used to the way the meds affect you.

But for now you are on a low dosage which has stopped your pain.
All the info about TN can make pretty scary reading, but you may well have remissions and long periods of time without any symptoms.

Take care,

Anne

[chasingmytoddlers2]

Welcome Joy, not Grace (that was funny!)
How wonderful for you that your small town doc. knew what was going on right away.
Keep posting here anytime you have comments or questions. It feels so good to get it out w/ people who do get it.
You are also lucky you have a dear friend w/ TN. Not lucky you both have it but to know someone who feels the pain on a deeper level. I have a friend w/ MS, one day she said "you get the icepick jabs?" and I said "yes". It felt like such a blessing for us to have similar pains. She said she only gets them for a few days and then they are gone.
The next time we talked she said "how are your headaches?" It cut me to the bone. I wish it was a normal headache. I hope your friend is close by you and you can help each other out as you go thru this together.
Nice to meet you,
Stephanie

[heyjude55]

HI Joy...A big welcome from me as well. I am new to this forum although I have had TN for a number of years. I see already that these folks are very educated on the subject of Tn and also ever so caring and supportive. A friend and co-worker of mine was diagnosed with TN earlier this year. She was describing her symptoms, seeing the dentist, internist, etc just as I did 12 years ago and I was so hoping that it would be something "easily fixable" and not TN.It sounds as though you have a good Dr and support system and you will find that here as well as plenty of humor to get you through the tough days.
Take care...Judy

[merymete]

Welcome, Joy! Ditto what these lovely people have said so far, sad you're here but you're in good company.
Lauar

[Immo]

Hello from Australia Joy!

Everyone else has already given you such great welcomes, I can only add mine to there's and welcome you to our growing group of fantastic people. Like the others, I am Sorry you had to find us, but glad you did! Just jump right in wherever you like (I do :D).

Best Wishes ~ Kerry xx

[ARCookie]

Thank you all. I can tell this is a healing place. I sure need healing!

Joy

[mary0705]

Welcome Joy! I haven't been here all that long myself. Great group of people like everyone has said. Glad to have another one on here, although sorry you were dealt a "club membership". At least you found a great place for support and information.
Mary