Hello.. my name is Julissa.. I am a 40 year old mother and wife.... About two or three weeks ago, I started having what i thought was bad toothache, or molar pain... Due to fear of going to dentist, and limited funds, i kept putting off the visit. About one week ago, the pain became so ubearable i finally made it into the dentist. He xrayed my teeth, lower jaw area and told me I had "nothing wrong with my teeth". According to him, there was no reason for my pain, and he was baffled. He advised I see an ENT. The following day, I went to an ENT and again, he said that he doesnt know what is causing the pain, and asked that I see a Neurologist. This past Wed, I went to see a Neurologist and she diagnosed me with Trigeminal Neuralgia. The pain is unbearable. It starts behind my jaw joint area, and it throbbs and hurts reallybad. I have always been a tough one when it comes to pain, but this pain is so bad it drops me to my knees. On some days, it will just be constant, and throbbing all day long... and on others it will go away and suddenly come back. I dont know yet, what triggers it... since i havent had it that long. But, my Neuro ordered a Brain MRI his past Friday, and i will be receiving the results Monday. The weird thing is that only me left side of my face, gums, eye, head,teeth, hurt. The right side of my face is fine. I have also felt like some very mild electrical "sensations on my left cheek. Also, I have some stabbing pains in my head.. left side.. almost feels like someone is stabbing in my head with something. I am so scared. For the past few nights, the pain has awoken me up.. and all i can do is sit there and rock myself back and forth until the pain passes. sometimes it takes seconds , other times it takes minutes... and it starts really low and starts getting stronger and stronger and then reaches a peak and then starts going down slowly, until it dissappears...
has anyone else been diagnosed with anything else besides trigeminal neuralgia ? Is there a chance this could be something else?
I am afraid to say it does sound like so many stories here, however I am not qualified to diagnose anyone. I only write from the experience of reading hundreds of profiles here. Are you prescribed anything yet? When the therapeutic dose of suitable meds is acheived, then most of us find relief to some degree. Some like myself almost total relief. Yes, I do know how very lucky I am, as I have suffered dreadfully with run away pain for very long periods of time. I hope you find relief soon.
Hello.. and thanks for responding.. the only medicine I was put on by my neuro three days ago is ...Trileptal 300mg (taken twice daily) and Diazepam 10mg to help me "relax" and sleep at night..... I also have a stock of Hydrocodones which my Dentist gave me , but they dont do anything to minimize the pain....
I’m sorry to say the others are correct on saying it sounds like TN. The medication for tn needs to build up in your system, so keep taking it. You’ll start with a low dosage and then slowly tilter till it gets to a therapeutic dose, where the pain goes away. I know it’s rough waiting till you get to that point with your medication. It might help you to read over the facial pain info area. It’s at the top on right side for the link to take you to that page. You might get a better idea of what could be your triggers for pain. It takes some time to figure these out. Be gentel with your self, and ask if you have more questions. I’m sorry your going through this, but we’re all here if you need some support. Take care and have a pain free day.
I'm so sorry to hear about your pain and your diagnosis. I'm pretty recently diagnosed myself and its scared the bajeezis out of me. I'm up to 300mg of trileptal twice a day also. It makes me pretty spacy and dizzy. It hasn't done very much for my pain yet...I hope it kicks in soon. I'm also on Baclofen, just for the past week or so, again I'm waiting for the relief.
Don't be surprised if your MRI comes back with nothing showing. It's just how TN is. Mine started after running in to something with the side of my face...;(
Their is great support here. Wonderful stories and words of wisdom.
Hang in there
Hello.. Im actually having an episode right now.. and Im at work... I work for a bank, doing customer service... Good thing is im at the end of my shift and will be getting out in 30 minutes.... this pain is so horrible.. just throbbing.. wont go away.... I hate it!!!!
It's like nothing I've ever experienced! Thank God your days almost over... I'm counting down with you
sounds like TN to me!! I've done the same thing, sit in the dark in my room rocking back and forth, talking to the Big Guy, please take it away.....I had a tooth removed that's what started mine. very minimal at first but then gets stronger. Your doctor will give you meds and give you meds and give you meds until you get the right cocktail. DO NOT HESITATE to call your doctor if they don't work! I had one med that I took one day and by night time it was hurting twice as bad! I'm good now and you will be too just keep in touch with your doctor!!
Just know that you are not alone. Keep taking your medicine hopefully your mri willshow something but dont be suprised if it dosent show anything. It really helps to have this site.
you might have to go up on your trileptal when doctor says you can -- but it will make your brain foggy #1 side effect
You might call doctor asap and see if you can get some topical lidocaine cream or patches to put on your face -- saved my life and sanity because I was able to stay on lower doses of meds.
Keep reading and posting because this site and the TN Association site will help you learn how to work as a team with your doctor because even neurologists - 80% of them really dont "Get It" they can't understand it because it's not much in their texbooks and we are rare -- ONLY 12 people in 100,000
The more you learn, the faster remission comes - best book here "Striking Back" by Dr. Ken Casey - really only comprehensive book on TN with 100's of ideas of how to make it better/bearable
Let us know after your next appt. -- they are probably doing MRI to rule out MS -- sometimes they go hand in hand
Sorry to hear you are going through this. I was recently diagnosed about 3 1/2 months ago. It sounds like TN to me too. READ, READ, READ..........research this as much as you can. Make sure you advocate for yourself if meds don't work, but keep taking them and give them time to work. ((((HUGS))))
I have been dealing with this for 11 years without medication and then it just became unbearable and started with Tegretal. I didn’t find the meds very helpful and the side effects became impossible to deal with. The important thing is to get to specialists with experience in this disease. There is a new protocol for the brain MRI that showed the loop this time where my first one didnt. I just had an MVD on 11/28 and ended up having 4 veins cut and cauterized. I’m still suffering with the post surgical nausea, neck stiffness, but I’m so glad I elected that procedure since the others wouldn’t have discovered all the involvement. Best of luck, it’s not fair for anyone to suffer this disease including their family members.
Hello Guys! I just left my MRI follow up appointment. My Neuro says that the MRI was "normal". I was heartbroken. I wouldve preferred they tell me "we found this, we found that...etc".... So, he says he is going to run more tests. He also gave me a nerve block.. he gave me several shots, around my neck, my shoulders, etc... Felt like I got about 35-40 shots. He says he doesnt think I have TN, and ordered another MRI of my cervical spine area... next Monday.
I feel like im back to square one. Has this happenned to anyone before?
Information can be your greatest ally in facial pain. Here at Living With TN, suggest you start with the TN Fact Sheet near the top of the Main page. Then expand your knowledge in the Face Pain Info tab of our menus. While we can't diagnose you as lay people, I can say that your reported symptoms are common to thousands of other patients who have a combination of trigeminal neuropathic pain and/or classic (typical) trigeminal neuralgia. It may take you a few weeks to titrate up to the effective dose range in one or more of the anti-convulsive drugs, or alternately on one of the tricyclic antidepressant meds that have a cross action on neuropathic pain.
FYI, be aware that although MRI results can eliminate certain problems or confirm that you have one of the known causes of TN, this imagery CANNOT positively eliminate TN as a diagnosis, simply because a vascular compression isn't detected. Compressions are found in many microvascular decompression surgeries where MRI didn't indicate them previous to surgery. If a practitioner tells you that you don't have TN, then the question he is ethically obligated to answer is "then what DO I have, and what is the normal course of treatment for it?" You would be highly justified in calling the doctor's office and posing that question to him via his triage nurse.
Feel free to follow up.
Regards and best,
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
My story is sort of similar to yours as well and I was told that I have trigeminal and glossopharyngeal neuralgia last Friday. I just started on treatment and so far I am still having pain, but it isn't as intense now. It was still pretty bad the first few days though. My MRI will be next week and I am quite nervous. I am like you, I would rather a doctor tell me that they found this or that instead of nothing. I like to have answers!
I always recommend a second opinion. If this doctor doesn't know what it is or if he doesn't help you (some doctors have given up on me in the past for other medical conditions), definitely find another doctor who can! I am glad that he will be running more tests and that you have some medications to help with the pain! Best of luck to you! :)
This is definitely trigeminal neuralgia. Sounds like how my story started exactly. Only difference was my dentist pulled teeth because I told him he had to do something I couldn't stand the pain. I now have no molars on my left bottom side thanks to the pain. Don't be surprised if your MRI comes back clear, another sign it it TN. Keep us updated please on your story and welcome to the group. Everyone here completely understands your pain and how severe it is. Big hugs to you as you go through this. I hope they fine a drug that will work for you, this is the only way to start trying to control the pain. If you have read some of us have had a surgery called MVD, this was after no drug would help anymore at least in my case. Heart goes to you as you cope with this pain. Linda
A minor correction or nuance, Linda, if I may? A CLEAR MRI doesn't really confirm TN. It merely eliminates discrete structural causes of facial pain such as previous stroke, benign tumors, sinusitis, aneurism, cyst, arterio-vascular malformation (AVM), or possibly (at maximum resolution) MS plaques. When there is a vascular compression visible on the 5th cranial nerve, many neurosurgeons will regard that result as confirming of the diagnosis of trigeminal neuralgia -- But even when there is no evident compression, you can still have TN. The most reliable indicators in diagnosis are the patterns of pain, existence of variable trigger zones, and/or a positive response to anti-convulsive or tricyclic antidepressant medications.
Regards and best,
My first MRI did not show anything. But when I went to have a Gamma knife procedure done.. they did a more intense Cat scan and MRI and did find a very small blood vessel pressing on my tri nerve. I don't know what they were called. I just know I had a halo on and they had to do mapping with a new MRI and cat scans to target the area to know where to apply the gamma radiation.
First of all, a million thank you's to all of you who post.... I finally had my second MRI, havent gotten the results back yet, but as soon as I do, i will let you all know what they found, if anything. Second, Ive noticed that the anti-seizure medicine they have me on, is somewhat working. As soon as I feel a pain episode starting, I take it , and it tends to either "kill it" or make it less painful. So I am very grateful for that. The medicine name is Trileptal 300mg, taken twice a day. This year has been a tough one. I am grateful I have a job at a bank, and have good insurance. My husband is currently in the hospital, just had his thyroid taken out. Doctors thought it was cancer, so you can imagine what our family is going thru.. first with his medical issues, and then having to deal with my TN.... its been tough.. but i have faith in God it will get better.
The last MRI i had was of my Brain and Upper "cervical area" or back of my neck i think... My appointment is coming up soon... so as i said before, i will keep you all posted.
Thanks to all of you..... I want to wish you all a Very Merry XMas and Happy New Year!!! :-)