hi, just wanted to introduce myself and talk to people who are going through the same or similar experiences as me. i got diagnosed with TN last week but thinking about the previous years it all makes sense.i used to suffer really bad with headaches when i was in school, and once had a what i can only describe as the worst pain in my life in the right side of my temple, only lasted a few mins but was strong enough for my bfriend to consider calling an ambulance cause he didnt know what was going on.
i then started with pains along my jaw and cheek line a coupke of weeks ago and one of the docs that i saw said it was TMJ, then last thursday had the pain in my right temple again at night, it came for a few mins then went then came back again.now i have got a 2 year old and i must say id rather have been in labour right then than have the pain cause it was worst...and i never thought id ever say any pain was worst than labour,lol.
so went to docs next morning and he said he thought it was more likely to be TN and gave me carbamazepine and i havent been in pain since.
sorry its been long but wanted to explain to see if i could talk to someone about this as im only 22 and havent read anything good so far about the symptom, and alot of sights are saying that cause im so young at getting it theres more of a chance of me developing ms aswell? dont know if this is tru but its all freeking me out abit and my docs not mentioned anything about a mri scan either?

Oh my dear, I am so sorry that this type of pain has hit you. I do remember with my first jolt of pain, like yours, I thought I was having a stroke or didn't know if I should call an ambulance, etc. It was that bad, so I do understand how it seems as bad as labor pains or worse.I have four kids so have a lot to compare it to. I'm so glad that you found this site as you have great support here. If you want to cry, we'll cry with you and when you smile, we will smile
too. I'm Glad that the medicine is holding your pain in check right now.
You will find that neurotalk has many people to reach out to,.:grouphug
most have had similar experiences or might be going through them right now.
You're not alone cause we are here!
Blessings, Doodle bug7

thanks im glad ive found a site where i can talk to people. im just wondering if anyone can suggest any other medication as the carbamzepine is working really well for the pain when im on 2x100mg tablets 3x a day but it really knocks me out, i cant drive and i need to sleep alot, i walk around like a zombie.
ive had a couple of days off work but have got to go go back tomorrow, i dont get sick pay and were really struggling to pay our bills as it is so we cant afford for me to have time off work.im a hairdresser aswell so i need to be wide awake and all there.
i cant get into the doctors until next thursday unfortunately so any suggestions are welcome and needed.

thanks

Hi curvy,
welcome to neuro talk Doodle is right there is alot of great caring supportive folks here. Doodle is one of them
sorry to start off with a question but....
was wondering if when the doc said it was T.M.J. if they suggested mouth guard or gave you one to use ? before you were told it is T.N.???
I am So happy to hear the med is working at controlling the pain monster. I think after a few weeks your body will adjust to the med and you might not be so much zombie or get tired when you take it. You could mention to docotor that the zombie sleepy side affects are causing you to miss work and possibly lose job etc... There are many meds out there to treat t.n. I would give this a couple months see if the zombie and sleepy lessen then present issue to doctor .

Have you noticed any triggers? like wind or pressure/touching on that area? try to avoid if possible.
I think I am going to message you some info from up top here in case you haven't looked threw it all.

oh yes age lol I know of 3 kids ...kids as in under 12 that have this. Dont freak out to much ...that adds to the pain. take a hot bath and also get info and research about this. that way you will have some power and knowledge when you see and talk with doctors.
alright off to message you...send low pain and positive thoughts to you and yours.
PEACE
BMW

oh yeah wanted to say most times it is the other way around you have .M.S. then T.N. comes a stomping along into your life . At least in my experience of talking with others who have both t.n. and m.s. it seems that way.
Most important number one rule to remember
is #1--- each of us are different and what works for one may not work for you...but we are NOT alone we are all living with this and coping as best we can.
PEACE
BMW

thanks for the response, im still learning how to use this forum so you'll have to be patient with me,lol. yea went to the docs and she suspected tmj but said there wasnt anything she could do id have to go to my dentist but im on a waiting list so that will be another couple of months anyway. but the the pain was getting worse and i he first doc i saw wasnt very nice or very good so i dont think she diagnosed me properly anyway, she wasnt listening to what i was saying and kept interupting me when i was talking.
the second doc was great and listened to me properly and asked a load of questions as to where the pain was and so i think he gave the right diagnosis.
had alot of cold wind where i live today and funnily enough ive had some pain today, sharp shooting pains. i realise aswel that if i get upset or mad and worked up i get pain then aswel, and a headache.
thanks for listening to me going on about this, i dont really have anyone to talk to cause my partner works alot and even when hes at home i think that he thinks am over exagerating most of the time, he doesnt understand how painful it can be and gets annoyed when i havent done the housework,etc.

carly

Did you know that T.N. is the worst pain known to man.? Just cause you look
OK it is hard to imagine the amount of pain that is going on. You can look
just fine to others. I believe thats why others don't understand.
I wonder if your Doctor will refer you to a Neurologist. It is hard to know what medication will work for you. There are so many. I've been on everything
including Methodone and Oxycontin and a slew of other med's When I tried Tegretol, I looked like I had the measles for a good week. Neurontin is another med that is used quite a bit with this kind of pain as it can be regulated in high doses. At this point I am narchotic free.The side effects of narchotics are not so easy to deal with.
We will get through this with you, OK?
Blessings, Doodle bug7

BMW and DB - it's good to see you back on your watch. LOL - I know it's nobody's personal responsibility to check in here on a daily basis. We just get used to seeing you around and worry when we don't hear anything from you.

Thanks so much for all the information you give to the newbies - and all that you gave to me when I first came here.

Carly - the first article I read about TN when I was diagnosed came from http://www.tna-support.org

The first line reads "TN is a pain that is described as among the most acute known to mankind." Print out a copy of that report and make him read it and that should get his attention. Good Luck!

Rhonda

hey, went back to the docs again today and hes changed my med, the other stuff was great for the pain but unbearable for the side effects! i need something thats not going to turn me into a zombie as im a hairdresser...dont wana cut anyones ear off!!
so hes put me onto gabapentin instead and has said to see him in a week and then he'll probably refer me to a neurologist.
im just glad that ive finally found a doctor that actually listens to me.
thanks for the help, ive looked on those sites and theyve been a good help.

carly

curvycarly,
I think your spirits have been lifted somewhat! So glad the Doctor seems on the right track with your meds and seeing a neurologist. I know how much better you will feel just having someone to lean on. Sit back in a chair and breathe a big sigh of relief. You need it. Let us know, we're not goin anywhere.
Blessings, Doodlebug7