I was diagnosed with TN in January on this year. It is is my forhead and my jaw on the left side.. I also have severe TMJ in my right jaw. I am currently taking 1800MG of Carbamazapine a day and 120 mg f cymbalta. I HATE THIS!!! I am 26 years old and I havea 5 year old son that I Can't be a good mom to!! I just want a surgery and I want it to be GONE! I couldn't take him trick or treating.. I couldn't play in the leaves with him.. I know I can't build a snow man this year.. omg I just feel so depressed and overwhelmed that all I want to do is curl up in bed and cry! I was told that if I'm having a BAD attack I can go to the ER and get a 500 mg Dilantin drip... however.. It's getting REALLY ridiculous to be there every few days.. 4 times in the last 2 weeks.. UGH!! It's putting a stain on my relationship with my husband.. I want more children .. and I desperatly want to be a GOOD MOM!! I just HATE THIS!!!!
My Neurologist just keeps wanting to increase my meds and wants me to exhaust my medicine treatments before discussing surgery.. I have been to 3 different ones already and I don't have anymore options.. is there any suggestions on what I can say to push him towards helping get surgery without being rude.. Everytime he sends me home with more meds I get mad and upset because.. it's easy to prescribe medication and dismiss the surgery plea when you go home and YOU don't feel any pain.. When you can enjoy your children and wash your hair without EXCRUIATING PAIN!!
I'm sorry.. I just had to vent and see if anyone could possibly help me..
I am so sorry to hear that you are suffering so. This is a debilitating disease and the meds are often just as bad. I was diagnosed in June of this year, and started Tegretol. It was very effective , but within two weeks, I developed any allergy and had to change to Gabapentin. I am now taking 2400 mg per day, but still have constant pain that varies in intensity throughout the day. I am concerned with how quickly I have had to increase my dosage of this medicine, so at my last appointment with my neurologist, I told him I wanted to consult with a surgeon.He did say I am maxed out on Gabapentin, and wanted to add lyrica ( which did not help with pain at all), and that there were no other medications for me, but did not really seem to want to refer me to a neurosurgeon.
I do not know what your insurance is like, but mine does not require me to have a referral, so I have made an appointment to see Dr. Jeffrey Brown, who is a neurosurgeon in NY,a leading expert in the treatment of TN. He sees people from all over the country and his office staff is very helpful . It is not required that you be referred by another doctor to see him. I will see him this week to discuss my options. I did not see the need to inform my neurologist about this appointment, because even though I have been happy with his care, I do not think I need his approval to explore my surgical options. This is my pain and my health, and I feel the need to take charge of it. Of course, I would like to maintain a relationship with my neurologist, but if he is insulted or upset that I sought another opinion, I will find another doctor. I have learned the hard way that have to be an active participant in my treatment, and the personal feelings of my doctor cannot stand in the way of my getting better.
I would suggest that you find neurosurgeons in your area that treat TN and seek a consult. If you need a referral, and your neurologist won’t give you one, maybe your primary care doctor will?
I wish you all the best in your fight against the TN "monster "
Yes - if you are done with meds - get a neurosurgeon asap
for IMMEDIATE relief - have any doctor call you in prescription lidocaine patches for your face -- you will feel much less pain in most cases - and lasts 12 hours!
Hi Princess. First of all NEVER APOLOGISE when you are here with your TN family.We know what you are going through. Vent as much as you like whenever you like. We know what it feels to want it to be over. Honey, I have never had surgery. About that speak to some one who has. I just want to encourage you and wrap my arms around you and try to make you feel better. But don't be so hard on yourself. You are sick with a very serious illness. Don't aplogise for being sick. I have had a hard time getting doctors to get me onto the right meds - a very long time. One neurologist advised an op - another said 'no'. But when I am in real pain my husband injects me with Tramal for the pain and panamor anti inflammatory to settle the nerve.. What I also do is breathe slowly in... out... in... out andpretend I am lying in a bay of water with my head against the landside and my feet facing the water. I try and do that as long as possible and that brings me peace and does relieve the pain to some extent. I have four adult children but I do know how you feel with your little guy. I have four little guys and a little gal from my daughters and it hurts like mad that I can't be the grandma I always wanted to be.
My darling just know we can't ease the pain but we can share it. So TALK TALK TALK TALK whenever you need to.
I have read this through and I hope it makes sense. I have just taken my meds and a a little woozy.
That sounds so incredibly frustrating, I am sorry! I am new to this TN stuff, but I've heard from a few people that are having a similar experience to you.
It seems like a lot of doctors would rather drug you up and send you on your way than actually spend time trying to help the situation. Are you able to change doctors and see someone else? I know from experience that seeing a doctor who doesn't see eye-to-eye with you can make the situation so much worse.
I'm a single mom of a 2 year old and lately I've been having similar feelings to what you expressed. It's hard feeling like you aren't being the best mom you can be. It breaks my heart when my kiddo comes running over for a hug or a kiss and I am afraid of being touched and starting off another attack.
My heart goes out to you and I hope you are able to find some relief.
Keep coming back here! Venting seems very appropriate.
i have not been on this TN site for awhile since mymom had surgery to fix her TN problem, which was very very severe, last summer.
her pain hit suddenly and her neurologist put her on Gabapentin and something else and it did not help her at all with the attacks of pain in her face. she could not live with the pain.
her surgery was a needle in her face that deposited medicine that basically numbed the site. she is pain free...and only a little numb...no face drooping or anything.
her proceedure was done a Johns Hopkins in Baltimore MD. dr. Ben Carson. i know he has trained other doctors to perform the surgery. go to the Johns Hopkins website... Ben Carson and there will be a link to TN...send an email to them with your info and they'll answer.
i know there are different kinds of TN...i hope this helps someone.
I am so sorry to hear that you too dont know what to do. Seems as though we have the same treatments with our Doctors. I also would like surgery. I live in Florida. Just dont know who or where to go.