After several months of severe facial pain, needless dental treatments, and all sorts of antibiotics, I was finally diagnosed with TN today. But instead of sending me home with more pain meds, I am now taking something called Tegretol. I'm on 800mg of ibuprofen and 1000mg of Tylenol, but I'm still practically on my knees from the pain. I was told that the Tegretol might take a few days to start working. So what do I do in the meantime?? I'm losing it, I really feel like I am. I've already cried several times from the level of the pain. I'm pouring sweat, I haven't had the energy to take a shower in 3 days (yeah I know, gross), and I can't even keep down sips of water. I know I'm dehydrated because my mouth is dry. But the pain has taken over, I feel so helpless, like it's all I can do just to keep drawing a breath. I don't know what to do, I'm going out of my mind!
Your story sounds exactly like mine lots of dental work lots of antibiotics lots of pain as I got diagnosed a little over a month ago im currently not on anything the seizure meds made my pain worse so I stopped who diag with TN?
I am so sorry you are experiencing such pain. You must feel terrible and hopeless. My med, Carbamazapine, is very similar to yours. It took only about two days till I started feeling a difference. Prior to it giving me pain relief it sedated me so much that I slept most of the time. That was a blessing in disguise. I took three weeks off of work to deal with the sedation and mental dullness which are side effects of these meds. Give in to the sleep. I am praying the meds kick in quickly. Keep us posted. You are not alone, we all walk this together.
I went through the same thing three months ago. My neurologist said pain medicine doesn’t work with this kind of pain. I actually asked about it on this group and they told me the same thing. I was put on 150mg of Trileptal twice a day,after a week I could still not handle the pain so he upped it to 300. I very seldom have pain now and when i do a couple Tylenol take it away. I am new to all this but I don’t think it should take very long and you should feel relief. There are a lot of great people in this group to help get you through this. I will keep you in my prayers.
Shawna
Tegretol (carbamazepine) is the first med usually given, you should start to feel a difference within 24-48hrs although total pain control will take longer . Please be patient with the med, I know how hard that can be…it needs time to build up in your system. Expect to feel drowsy, hopefully you can get some sleep to escape the horrid pain. (( hugs ))
In the meantime if you have a Heating pad you can microwave, that sometimes takes the edge off…
My doctor prescribed tramadol for interim pain relief, however I couldn’t tolerate it, it made me extremely loopy and I always got a hangover type headache afterwards.
I take Advil extra strength some days to also help with the pain, I see your on ibuprofen so that’s good, can’t imagine the Tylenol is doing anything…
Maybe your doctor has something he can prescribe you until the Tegretol kicks in.
If you really cant take it anymore… go to your ER and see if they can give you something immediately so you can get a small break from the pain.
So sorry for your pain, glad you finally have a diagnosis and can now try and find relief…
Thinking of you, Mimi
It shoul dbe noted that it is not adviced to take Tylenol when on Tegretol or Carbamazapine. It can interact in a nasty way. This caution is on the pharmacy sheet as well as most docs will let you know. Advil is fine. There is no need to add more misery and combine meds that are not compatible. I hope today is already a wee bit better.
Bless your heart. I know how you feel. That's what my doc told me too, but luckily, after my FIRST dose and a night of sleep, I miraculously awoke with no pain! I have a few breakthroughs now, but not NEAR as severe as the initial pain. If Tegretol works, that's your cue that it's definitely TN. Please when you have the pains, just freeze in your tracks, take deep breaths and whatever you do, DO NO cry. The crying makes it way worse. Since you wrote this on the 5th, I am hoping you are pain-free by now. BIG HUGS TO YOU! Message me and let me know how you're feeling.
get any doctor you are working with - gp or specialist or dentist - to call you in lidocaine patches prescription - they go right on your face for hours of relief for many!!!
It let me sleep!!!!
Also, since you are new here -- sorry you are here - but welcome!
(you will have to do all or most of your own research as TN doesn't go away - you only go into remission)
1.go also to the website of the TN Association -
2. and run get the book - Striking Back, by Dr. Ken Casey--our bible here- hundreds of treatment options
3. asking questions and
4. reading the face pain tab here
will give you a good head start on how to direct your own treatment without suffering as much as if you did not have any knowledge. we are only 12 in 100,000 -
Make sure and find a neurologist that has plenty of TN patients - if not - look on our tab for "doctors" here. I had to fly from MO to MI for the best treatment for me.
Read up so you can teach family and friends what this devastation really can feel like.
Kimberly