Hello, I am new to TN. My neurotologist thinks I have it and I definitely have the pain and symptoms for it. Friday night I had to go to the ER due to pain. I am wondering what ya'll do to help the pain and if people doubt the pain, saying you are over reacting??
Hi lizloulou, Sure wish you didn't have to be here. I am glad you found the site it is a great place to research. Everyone here knows you are not overreacting. This is a pain that cannot be understood unless it is experienced. I am fortunate to be married to a someone who works in the medical field and was familiar with it. So I had a lot of understanding and support. Unfortunately a lot of people even in the medical field have very limited knowledge when it comes to TN. I was on anti-seizure medicine and an antidepressant that did not work well for me. Pain medicines didn't work either. Fortunately in my research here I found a lady who recommended a clinic in San Antonio. Long story short I did Mckenzie physical therapy and I have not had TN pain since the end of Nov. and I am so grateful. I still have some ear and neck pain which I think is tied into the whole thing. But I believe as I continue to research I will find the answer to that too. Educating yourself is probably the most important step. Good luck in your search for answers.
Shawna
Physical therapy??
90%+ are doing meds or surgery == some supplement that with other things or cannot do surgery or meds - so they do other things - anything to get relief! But maybe you will be started on an anti-seizure med soon?
If you get the book "Striking Back" by Dr. Ken Casey, it's our bible.... it has helpers like acupuncture, reiki, vitamins....but no matter what you do, it just goes in and out of remission.... It can go away for days, months, years, but we just call ourselves in remission when pain free.
My shortcuts for newbies include what I would hope would help you faster!
Google Images: Put in Trigeminal Neuralgia if you have the lightning strikes to your face
If burning, boring , seering pain - put in Atypical face pain instead. - THEN you can print out and show people tangible evidence that 12 out of 100,000 have dealt with. We are rare.
Ask your regular doc or any doc to call you in some lidocaine prescription patches or cream -- that is the only instant relief for many. ER narcotics only take the edge off for most. Remissions will get shorter and shorter over a long period of time so you have to play around with what works for you.
Lastly read read read / ask ask ask
The faster you get really educated on this - I believe the faster way to more quality life.
Keep Posting!
I am on anticonvulsants but its just so hard to function and it didn’t help when I had to go to the ER for pain Friday!
.....(taze them in the face and scream am i over reacting now!? )....
Ok, that wasn't helpful, but it's what i want to do sometimes.
What has helped me to explain and convince those around me about my pain was that i printed out a diagram of the face nerves and a paragraph or two about the condition, then sat down and really explained it to them. (i used info and diagram from wiki)
For ER and other medical personnel ...they seem (to me) to be dead set against believing me unless i had proof. So i just had my doc write me out a short paper saying basically.."yeah she's got TN, yes she's on these drugs for it, if there's a problem or questions, call me." Nicer and a bit more diplomatic, of course...lol That little paper has helped a lot.
As for pain....*sigh* there are so many different things that everyone tries. Keep taking your drugs...ask you doctor if you can increase them during bad days. Take KC's advice about lidocaine. If you pain is on the outside of your face, get the cream or patches, if it's inside your mouth (like mine) then ask for viscous lidocaine 2% liquid. You can swish with that and it numbs.
In the ER ...ask for dilaudid (sp?). My last ER visit was made much better by a shot of this.
Most importantly, don't give up. Keep fighting and explaining and demanding help. And keep coming back and posting here.
Wishing you peace and some pain free days
~Mistee
That was the shot I was given lol and I slept the entire day and night 