First of all, I want all of you guys to know that I appreciate each and every one of you who respond to my posts. I am not really having a good day today.. I went to my neuro a few days ago, got about 25-30 shots (nerve blocks) for temporary relief and for the next 24 hours I felt like the old me. However, last night, the pain came back, and has gotten stronger and stronger as the hours have passed. For years I have sufferred with Fibromyalgia, or at least thats what my Rheumotologist diagnosed me with. About a month ago, I started having some tooth/molar pain, and the pain became so unbearable I ended up in the ER. I have family that somewhat supports me, but as many of you know, it gets to a certain point where people either dont believe you, or start giving you doubtful looks. The ER doc gave me meds and told me to see a dentist. The next morning, I was the first patient waiting for the dentist to open. He xrayed my teeth, and said I had nothign wrong with my teeth or jaw and couldnt explain where the pain was coming from. He then referred me to an ENT. THe following day I went into the ENT and he said my tonsil was a little big, but nothing that would cause such tremmendous pain. He gave me meds, antibiotics and referred me to a neurologist. The following day I went to the neuro, he mentioned he thought it could be TN and sent me for a MRI. Two days later, the neuro read the MRI results and said they were normal. My heart sank. I knew that finding the reason or getting a diagnosis was going to be a long road ahead. He offerred me nerve block injections and I said yes. He gave me like 25-30 shots around my jaw, neck, shoulders, all around my face basically. While I was in the office, the pain was gone. I enjoyed the next 24 hours pain free. However the pain is back. I feel depressed. Im not my usual self anymore since about a month ago, when this whole thing started. THis pain has become my greatest fear. He did give me some anti-seizure meds which i notice that do reduce the throbbing to a less amount, and some Valium to help me relax and sleep at night. I just want to get this fixed now, and get my life back. I dont want to live the next 30 years of my life suffering with this pain. After the Neuro finished giving me the multiple nerve blocks, he said that "he is starting to doubt its TN" . He ordered another MRI of the back of my head and neck area. He said he thinks it may be something there causing this.
I dont know if I should continue to follow thru with this doctor or find a Neuro who specializes in TN... Im sorry if I feel a little down today, but as many of you know, living with this condition isnt easy. You question yourself, as to why over and over.... I am so happy to have found a group where I can feel at home, understood.... Sometimes I try and explain to my family what I feel, and how much it hurts and they just blow me off.. or think Im exaggerating.
I would look into a new doctor! I have been crying all afternoon because of what the neurologist told me today! My neurosurgeon sent me to see a neurologist to get extra medication until I can have my MVD surgery. This neurologist basically ripped me a new one for wanting to get surgery when I can medicate to make this go away (even though I am on 1200 mg of Tegretol and still having horrible pain). I felt like I was fighting him to get a word in! He wouldn't let me talk!! Then he told me my biggest concern should be to lose weight!!!!!! I know I am overweight, ALL of this started 2 weeks after I had my daughter and I haven't been able to lose any of it. I guess I will just suffer until I can get the MVD. Sorry to complain to you when you are down too :( I will be praying for you that you find a doctor that will take you serious!! Check out the list of doctors above it seems to have doctors on there from every where!!
Its okay Sara.. Im sorry that that "doctor" brought up the issue of your weight.. that was totally uncalled for.. First of all, what in the world does the weight have to do with the pain? I wish I couldve been there with you so I wouldve set him straight!!!! lol There are so many doctors out there that have no empathy what soever... its discusting... Please keep in touch and let me know how you feel after your MVD. I will keep you in my prayers too... and as far as you "complaining" to me.. dont feel like that.. youre not .. as far as I see it, we are all a family here and we have to stick together against this horrible disease....
I have no medical training Julissa, but I do know that a positive response in pain reduction after taking anti seizure meds is indicative of TN. Of course there may be other factors involved. I want to give you some hope. I joined this group in deep crisis. My pain had been out of control for months. Any GP I saw at my surgery was stumped as to how to help me. Maxiofacial had discharged me as they were out of ideas!!!
All of a sudden I had access and communication with people who understood me and my TN. With the knowledge I gained here and meeting my new and wonderful Neuro I was given a medication plan which worked and did not have too many side effects.
I now have an almost normal life, my pain is mostly managed. I am happy. I hope this can be the case for both of you ladies.
Jackie’s story is one of hope, we must always have hope! I experienced an 8 year remission before it came back! Theres always hope.
Julissa, get the 2nd MRI maybe there is another cause for your horrid pain, maybe not. Mris are supposed to be normal with TN. They order them to check for MS or tumors, TN doesn’t show up on mris. Sometimes with specialized mris people are able to see compressions on our 5th cranial nerve sometimes not. That doesn’t mean we don’t have TN.
Most important is pain control, it can take time unfortunately to find the right med or combo of meds.
Don’t give up! Having this horrid pain is exhausting mentally, physically and emotionally, don’t be too hard on yourself. Your stronger than you think! Huge ((( hugs))) Mimi
SaraM, don’t walk, RUN to a new neuro! Ignorant… insert bad word here!
Call up neuro surgeon and have his office refer you to new one and stress importance of needing extra pain control ASAP! Perhaps he can prescribe you something in the meantime ?
I too had to go through several ignorant neuro’s until I found mine. We need partners to help us through this…(( hugs)) to you, Mimi
If you can tolerate low to medium doses of anti-seizure meds - do give them a couple of weeks to see if there is a difference - in the mean time find a DIFFERENT doctor - maybe your gp - who will prescribe you lidocaine patches or cream - saved my sanity !!!!
Julissa, My heart goes to you, please dont't give up. My pain started in 2003 but not diagnosed until 2007. All molars on my bottom left side are gone because all were pulled, it was tooth pain. IT WASN'T TOOTH PAIN. Find yourself a neuro who will listen to you. It was a hard fight, I think TN is too uncommon to be an easy diagnosis. You're right, everyone here understands your pain. I looked up TN symptoms on the internet and highlighted all the symptoms I was having, which was all of them. Also peoples stories of how it started. I went to my doctor with this and told him I'm not just trying to find something I have TN and please help me deal with this because of the pain. Luckily enough he did listen. You have to find someone who will listen. Have paperwork with you, demand help. Now I have recently had an MVD and am recovering. It seems to take time but please please don't give up. Be strong and demanding. I agree family doesn't understand, no one can unless they've suffered. Please take care...many hugs Linda