Pain Management Options

Have my first appointment with a pain management specialist tomorrow. Has anyone had success with pain medications? I am already on 1200 mgs of Oxcarbazepine. My primary doctor told me that pain medications do nothing for nerve pain but then I see several comments on different pages where pain medication helped to get their life back. Just looking for some feedback. PS my primary said carbamazepine was the only treatment for tn and the ER gave me oxcarbazepine. The oxcarbazepine helps remove the shocking pain but I still have 24 hour aching, burning, and the feeling like someone cracked all of the bones in my face all day long....I really need relief from that!

I was on carbamazapine for 8 months cause NO doctor would listen when I said it was doing nothing for me. To which I was told, that’s what all tn patients use and I begged them to try something else. They put me on gabapentin. My entire world changed. The constant ringing in my ears went away. I saw a pain specialist. We tried everything and nothing helped so finally we tried opiates and again my life changed. If your doctor tries everything and your reserved about not wanting to use opiates, don’t feel ashamed about it. I waited 2 months til I agreed to try opiates and man did they save me. I hope you find something that helps, quickly and lasts. For me i’d have 3 days of relief and then it didn’t help.

I take non narcotic daily meds that are helpful. Then I take Percocet for breakthrough pain and that is usually helpful.

Thanks for the replies guys :) I have been plagued with a general practitioner that didnt understand chronic pain at all, I am hoping since this is his specialty that he will get my life back. If he cant help me I have no idea where I am going to go from here!

I am having so much trouble with doctors not wanting to even go over my meds with me. I saw several on this site were taking muscle relaxers plus I read in the TN book that they can be helpful. I agree that they are because I had a few soma from 3 years ago when I was in the bad car wreck that started this nightmare. I would take them when the pain was unbearable and they helped just enough to stop my crying. This last doctor that I saw diagnosed me with atypical tn and mailed me info which included a link to this site. I was over the moon excited that I had finally found that mythical wonderful doctor that knew what I was going through! But on my next visit when I brought up going over my meds and maybe adding a muscle relaxer referring to what I had read on this site and the tn book she yelled at me saying that, "I didn't need anything to take the edge off of the pain!". Then she changed my diagnosis to atypical facial fain. Ummm, ok.... My husband asked her the difference and she said basically nothing but that what I read here and in the book didn't apply....uumm what? She wants to send me to a rheumatologist now and back to the Mayo Clinic since I think they obviously know better. The problem with the Mayo is that they are 6 hours away and don't prescribe meds as they want your home neurologist to do that. She said they have to and I said I guess they don't have to because they don't do it. She said, "Well then they can tell your primary doctor what to prescribe and he can handle it". Then she had the nerve to try to schedule me to see her again in two months! Ummm...I don't think so!!! I am seriously about to pull my hair out from frustration from doctors that just don't get it!

I am 8 hours from my appointment and terrified its sad that a doctor can be so careless with our care. If they only spent one day in our shoes...if they only felt the pain for ten minutes maybe they would get it. If this man doesn't help me I am at a loss of what to do :/

Brainburn said:

I am having so much trouble with doctors not wanting to even go over my meds with me. I saw several were taking muscle relaxers plus I read in the TN book that they can be helpful. I agree they are because I had a few soma from 3 years ago when I was in the bad car wreck that started this nightmare and I would take them when the pain was unbearable. This last doctor that I saw diagnosed me with atypical tn and mailed me info which included a link to this site. I was over the moon excited that I had finally found that mythical wonderful doctor that knew what I was going through but on my next visit when I brought it up and referred to this site and the book she yelled at me saying, "I didn't need anything to take the edge off of the pain!". Then she changed my diagnosis to atypical facial fain. My husband asked her the difference and she said basically nothing. She wants to send me to a rheumatologist now and back to the Mayo Clinic since I think they obviously know better. The problem with the May is they are 6 hours away and don't prescribe meds as they want your home neurologist to do that. I am seriously about to pull my hair out from frustration from doctors that just don't get it!

Heather,

I just know that there has to be someone that understands and can help. We just have to be brave and keep looking. I am on Tegretol 200mg 3 x day, Gabapentin 300mg 5 x day (down from 8 due to side effects from the near toxic level) and Amitriptilyine 100mg 1 x day.

If I never leave the house (going on 3 years), eat soft foods, drink room temp. drinks from a straw, don't ever touch my face, keep my hair short and cover or redirect the air vents in the house I can do pretty well most days. But I want to leave the house more than just go to the doctors (I do sometimes but not for long) and I really want to eat a steak (hehe)! Anyway, my point was that maybe you could try some of those meds. I hope with all of my heart that you get some relief! BIG hugs and I am keeping my fingers crossed for you. Please let us know what happened.

I have been down this road with the frustrating fact that some doctors don’t get it. 15 years of suffering from what I didn’t know led me to finally have an unbearable pain. When I was only eating and drinking thru a straw and it was finally time to convince the doctors something was wrong. From that point it took several years and 13 doctors later + CAT scan MRI and Angiogram. The first neurologist I saw was able to diagnose me within five minutes. His knowledge of trigeminal neuralgia was very disappointing And drug treatment options are very limited. I had read by this time the book Striking Back and knew about so many different drug options and combinations but I could not argue or educate this man.
My breakthrough came by learning that people get the most help when they see a high volume neuroscience center. This is where I got help. Currently I see a pain specialist who is fabulous and a neurosurgeon who is so knowledgeable. They work together to find the best options for me.
My advice to all is to find a high volume neuro science center. I only have to drive one hour to get to my Appointments. Some appointments are done over the phone. I know it might be tough for others who have to drive farther But it may be worth it!
Healing together, Tree

I have ATN which is now gone due to MVD surgery that worked! When I had both the TN pain and the ATN pain, i took lyrica and narcotics, after I had a glycerine rhizotomy, I went off the Lyrica and took an antidepressant and narcotics. You may want to take a look at the FACE PAIN TAB, I think there is a topic on meds there , and if there is, print it and take it to your doctor. There are many different meds out there for TN and ATN, and each person seems to find relief a different way

Wendy "crashgirl"

Hey Wendy! It's nice to hear from someone with no pain! That is so wonderful! My problem is that because I have ATN no one here in the south will do a MVD and they sure hate to see me bring in a list of meds that I want to discuss. They seem to feel as though I am telling them what to do and I don't get it because I use nice, non-threatning words. I think all of the good doctors must be up north! Grats on the pain relief!

Yay Tree! I was looking into the possibility of going south about 8 hours to a high volume neuro science center but I hated the thought of that long drive back crying and disappointed. Thanks for steering me in the right direction! I am going to try it after all! Kisses!!!

Tree69 said:

I have been down this road with the frustrating fact that some doctors don't get it. 15 years of suffering from what I didn't know led me to finally have an unbearable pain. When I was only eating and drinking thru a straw and it was finally time to convince the doctors something was wrong. From that point it took several years and 13 doctors later + CAT scan MRI and Angiogram. The first neurologist I saw was able to diagnose me within five minutes. His knowledge of trigeminal neuralgia was very disappointing And drug treatment options are very limited. I had read by this time the book Striking Back and knew about so many different drug options and combinations but I could not argue or educate this man.
My breakthrough came by learning that people get the most help when they see a high volume neuroscience center. This is where I got help. Currently I see a pain specialist who is fabulous and a neurosurgeon who is so knowledgeable. They work together to find the best options for me.
My advice to all is to find a high volume neuro science center. I only have to drive one hour to get to my Appointments. Some appointments are done over the phone. I know it might be tough for others who have to drive farther But it may be worth it!
Healing together, Tree

I live in Delaware and ended up going to Long Island NY for my surgery. Thats one of the tough things about this disorder! There are so few really competent doctors handling TN, that we have to travel to get to the good ones.
May be worth it for you to travel if thats at all possible, at least a consult with one of the top docs, then you would have more choices or at lease someone who listened!

Just my two cents

Wendy

Brainburn said:

Hey Wendy! It's nice to hear from someone with no pain! That is so wonderful! My problem is that because I have ATN no one here in the south will do a MVD and they sure hate to see me bring in a list of meds that I want to discuss. They seem to feel as though I am telling them what to do and I don't get it because I use nice, non-threatning words. I think all of the good doctors must be up north! Grats on the pain relief!

Important questions for the doctor-

I suggest that you always ask a new doctor "how many TN patients do you see, and how successful are they at treating them?" Same question for a surgeon "how many of these surgeries do you preform per month?" Someone preforming surgery on my face or head better be well practiced.

The answers to these questions can tell you whether to trust the doctor the you are interviewing remember they work for you! You can ask these questions before you drive all the way to that doctor also. Just ask their staff to ask him the questions.

Thanks Wendy. Thanks Tree. I just sent off an email to a Neuroscience Center nearest me. They have on their website that they treat TN and they do endoscopic MVD. I hope they don't require a referral. I will find out soon.

So an update I had my visit yesterday with pain management and it went awesome. He put on medication for my breakthrough pain and I was able to eat something other than a protein shake for dinner last night! I just met the best caring doctor who spent 45 minutes talking to me. He is a little mad about all of the doctors I have seen that never did an MRI because I didn't have the money. He was very worried about my age and extent of my nerve damage and the fact I have no feeling on the back side of my head ( which I never noticed until he did a vibration test today) he was also worried of what is causing me to have pain in all 3 branches of my face because you usually only have 1 or two but never all three especially in your twenties. He ordered me an MRI and a dye test at the local hospital and one in Little Rock he said out of both of them one of them should let it go through without payment up front and if not he will find a way for it to happen. He is contacting every establishment that will help with medical care to see what he can do to get me help. His daughter is a neurologist in a different state and he is calling her for some guidance and if needed to read my results. He said it doesn't seem good that there is a big possibility of a tumor, aneurysm, or MS but I may be lucky and it is none of them but I have pain in places that are not related the the trigeminal nerve so he is very very concerned. He said if we can find what is causing it they are all treatable but there is no good excuse of why I have been left to suffer for 2 years and no one would help me. He is also finding a neurologist for me that will take payments. He said he is worried about why my pain is down my spine, in the back of my head, and I had tremors in my hands whi8ch I never noticed. I have been stuck with a GP for 2 years that knew very little about TN and was not helpful at all!

Thats so encouraging to hear, someone is finally listening to you and thats exactly what you need.

One word of caution that I have learned, is that sometimes whatever caused the TN, does enough damage that even with good treatment or cure, the damage has been done and the TN has to be dealt with.

I think finding an answer will if nothing else make you feel so much better. I have been on a journey myself this year and its taken and entire year to find out that I have a very rare autoimmune disorder that can be treated. It sucks to suffer when theres a fix, but medical science has not come as far as we think, and until we find a doctor like you have that truly cares, we are stuck

I am so glad that you have someone to finally manage all this and help find an answer!

Keep us up to date

Wendy "crashgirl"

mommyheather said:

So an update I had my visit yesterday with pain management and it went awesome. He put on medication for my breakthrough pain and I was able to eat something other than a protein shake for dinner last night! I just met the best caring doctor who spent 45 minutes talking to me. He is a little mad about all of the doctors I have seen that never did an MRI because I didn't have the money. He was very worried about my age and extent of my nerve damage and the fact I have no feeling on the back side of my head ( which I never noticed until he did a vibration test today) he was also worried of what is causing me to have pain in all 3 branches of my face because you usually only have 1 or two but never all three especially in your twenties. He ordered me an MRI and a dye test at the local hospital and one in Little Rock he said out of both of them one of them should let it go through without payment up front and if not he will find a way for it to happen. He is contacting every establishment that will help with medical care to see what he can do to get me help. His daughter is a neurologist in a different state and he is calling her for some guidance and if needed to read my results. He said it doesn't seem good that there is a big possibility of a tumor, aneurysm, or MS but I may be lucky and it is none of them but I have pain in places that are not related the the trigeminal nerve so he is very very concerned. He said if we can find what is causing it they are all treatable but there is no good excuse of why I have been left to suffer for 2 years and no one would help me. He is also finding a neurologist for me that will take payments. He said he is worried about why my pain is down my spine, in the back of my head, and I had tremors in my hands whi8ch I never noticed. I have been stuck with a GP for 2 years that knew very little about TN and was not helpful at all!