I am getting scared. Is it possible to have this pain constantly??? For a year I kept it away with meds…but since Oct. it has never left…searing pain everyday if I try to talk or eat. Is that possible? I read that some have it once or twice a day…but I have it constantly…never, ever stops. I am considering MVD in the next month…I can’t live like this. Bad timing…I am in the middle of selling my house…I just wonder if anyone else has it non stop. Thanks
Hi Mary,
I have periods of time where my TN, GPN is really active. I keep a pain journal. In retrospect, I only had 7 days in December without pain, so yes, I would say it's possible tohave nonstop pain. Do you journal?
I know I am saying the sames thing over and over, but I just don’t know whether to have the mvd or not. As torturous as this pain is…it is better that dying. I am terrified of that. My Dr. says he does about 6 or 7 a month at Vanderbilt and no one has ever died. But still…I just wish somebody would TELL me what to do. I sure hate this.
Hi Mary,
I don't think anyone can make that decision for you. You have to be at peace with your decision. For those that have successful MVD's, they look back and wonder why they waited so long.
The chances for success are are about 85%. Those are good odds. About 15% of patients don't experience pain relief and about 5% have complications. I, unfortunately, was in the 5% group. Before my surgery, I had been in so much pain, I was completely at peace with whatever was going to happen in the operating room.
I think, therefore, that you have to be 100% comfortable with your decision and no one can make it for you. If you are not ready, then you should continue taking meds and wait until you are ready. There is no reason to hurry. The odds for a successful surgery only decrease if you've been suffering longer than 7 years.
How long have you had TN?
Jackie
Jackie M said:
Hi Mary,
I don't think anyone can make that decision for you. You have to be at peace with your decision. For those that have successful MVD's, they look back and wonder why they waited so long.
The chances for success are are about 85%. Those are good odds. About 15% of patients don't experience pain relief and about 5% have complications. I, unfortunately, was in the 5% group. Before my surgery, I had been in so much pain, I was completely at peace with whatever was going to happen in the operating room.
I think, therefore, that you have to be 100% comfortable with your decision and no one can make it for you. If you are not ready, then you should continue taking meds and wait until you are ready. There is no reason to hurry. The odds for a successful surgery only decrease if you've been suffering longer than 7 years.
How long have you had TN?
Jackie
Hi Jackie…thank you so much for talking with me about this…nobody here gets it…they are all just pushing me to have surgery…and if I knew I would make it through I would do it…I just have a little fear. I have had this for a year and 4 months. For the first year the meds helped, but in Oct. it came on so bad and has never let up. I take 1200 mg of Tegretol a day and 9 10 mg of baclofen a day which cut back to 6 because I was a total zombie and the pain is the same so I cut back. I cannot eat without holding my cheek back and now the skin is sore from doing that. I got shingles at Christmas so that is a double whammy. I keep hoping it will let up, but I guess I just need to buck up and go for it. Vanderbilt is supposed to be one of the best.
Jackie M said:
Hi Mary,
I don't think anyone can make that decision for you. You have to be at peace with your decision. For those that have successful MVD's, they look back and wonder why they waited so long.
The chances for success are are about 85%. Those are good odds. About 15% of patients don't experience pain relief and about 5% have complications. I, unfortunately, was in the 5% group. Before my surgery, I had been in so much pain, I was completely at peace with whatever was going to happen in the operating room.
I think, therefore, that you have to be 100% comfortable with your decision and no one can make it for you. If you are not ready, then you should continue taking meds and wait until you are ready. There is no reason to hurry. The odds for a successful surgery only decrease if you've been suffering longer than 7 years.
How long have you had TN?
Jackie
Hi Jackie…thank you so much for talking with me about this…nobody here gets it…they are all just pushing me to have surgery…and if I knew I would make it through I would do it…I just have a little fear. I have had this for a year and 4 months. For the first year the meds helped, but in Oct. it came on so bad and has never let up. I take 1200 mg of Tegretol a day and 9 10 mg of baclofen a day which cut back to 6 because I was a total zombie and the pain is the same so I cut back. I cannot eat without holding my cheek back and now the skin is sore from doing that. I got shingles at Christmas so that is a double whammy. I keep hoping it will let up, but I guess I just need to buck up and go for it. Vanderbilt is supposed to be one of the best.
Jackie M said:
Hi Mary,
I don't think anyone can make that decision for you. You have to be at peace with your decision. For those that have successful MVD's, they look back and wonder why they waited so long.
The chances for success are are about 85%. Those are good odds. About 15% of patients don't experience pain relief and about 5% have complications. I, unfortunately, was in the 5% group. Before my surgery, I had been in so much pain, I was completely at peace with whatever was going to happen in the operating room.
I think, therefore, that you have to be 100% comfortable with your decision and no one can make it for you. If you are not ready, then you should continue taking meds and wait until you are ready. There is no reason to hurry. The odds for a successful surgery only decrease if you've been suffering longer than 7 years.
How long have you had TN?
Jackie
Mary, Hey there. I have had bilateral TN since June 2007. I have been in almost constant pain every day. I have been on more drugs than I can begin to remember. I have had no relief. October 1, 2010 I had my 1 st MVD on the left side which was worst thsan the right. I had many complications. I went through all this just to realize it didn't work!! I was pain free for sabout 6 weeks maybe, on that side. I am now back in seveere pain constantly. I went back to my surgeon and last week and he said he will not do anymore surgeries on me, cuz the 1st one didn't work. He told me to go to a pain specialist and he will be putting me on meds and lots of them. This sickens me cuz I have already been on many many meds and either they didn't work or they made me worse or they messed with my heart and blood pressure. I don't need pain meds I need meds to control the TN. I am going today to my original Neurologist to see what he says. Good luck and yes you are the only one that can decide to have the surgery or not. I would do it again if there were any chance at all that it might take, even after all the problems I had.
Thank you Pat for your advise. I really am sorry to hear what you are going through. This is a horrible thing and I can hardly believe there are no pain medications that we can take that will help. I had my MRI last Tues. I am waiting for the Dr. to call me with the results…he was out of town from Friday till today. He feels sure it is type one, but only from my symptoms. What are we to do??? The pain is unbearable and the surgery is scary for what will happen as a result. My daughter and ex husband get mad when I tell them I don’t feel comfortable with surgery and are pushing me to do it. Hey…this is brain surgery and I have to wonder how quick they would jump into it. It’s easy to tell someone else to do it. On the other hand, honestly, I have not been able to eat anything without terrible pain for 3 months…so what kind of life is that??? I appreciate your input. What a decision this is going to be. I really hope things get better for you. I wish I could help.
Pat said:
Hi Mary,
I'm not one to tell anyone what to do because this is an extremely personal disease and all of us respond differently to the myriad of treatments. However, I would like to offer some counsel based on my own experience. Like you I struggled for a year with the pain and when the meds stopped working I started instantly looking into surgical procedures and in hindsight, rushed myself into an MVD. Looking back (under the influence of so many meds at the decision point), I never got comfortable with my decision. In fact the night before my surgery, my husband was pleading with me to postpone or cancel because I was in so much fear. But I felt so desperate to get pain relief and so afraid of more of the lancinating, electrical attacks so I gutted my way through my fear. In truth I was never comfortable with the surgeon's personal demeanor either. Little did I know that would play out later in him dropping me like a hot potato when I had complications - more than one. In the end, it turned out badly and I was one of the 1% who ended up in even worse pain with AD (anesthesia dolorosa, intractable and untreatable neuropathic pain).
Therefore my counsel based on my experience would be to: make sure you have a clear diagnosis (type 1 or type 2), you've gotten more than 1 opinion, had a thin slice 3T MRI, that you understand the potential risks/complications, and slowed yourself down enough to get OK with whatever you decide to do. It's your life and I hope that you get to experience the rest of it out of pain. My best to you, Pat
Oh my God Pat I just looked up that nervosa that you have. I cannot imagine what that would be like. I am so sorry for you. I just don’t know…this is a big thing. Thanks for suggesting that book. I think I will try to find it and read it. I am miserable now, but what you have sounds a lot worse. My goodness, why can’t they find something to help this. I will be thinking of you and I really appreciate you responding to my post.
Pat said:
Mary,
You're right, I haven't been able to eat solid food for a year and it's no way to live. It's just surviving. I wonder if you would get more reasonably comfortable with your decision if you read Striking Back (if you haven't already) and if you get more than one opinion. If I had it to do over I would have gotten several more opinions. Most likely I would have ended up in Pittsburgh at UPMC. Who knows if it would have turned out differently but at least their reputation is that they are interested in their patients and follow up with after care if need be. It's good to come here and ask questions to learn/educate yourself. It would be an easier decision if we could be assured of the outcome, but you will figure it out. If I had listened to my intuition it would have been much better for me, so trust yourself.
Pat
I’m sorry Pat…I meant dolorosa.
Pat said:
Mary,
You're right, I haven't been able to eat solid food for a year and it's no way to live. It's just surviving. I wonder if you would get more reasonably comfortable with your decision if you read Striking Back (if you haven't already) and if you get more than one opinion. If I had it to do over I would have gotten several more opinions. Most likely I would have ended up in Pittsburgh at UPMC. Who knows if it would have turned out differently but at least their reputation is that they are interested in their patients and follow up with after care if need be. It's good to come here and ask questions to learn/educate yourself. It would be an easier decision if we could be assured of the outcome, but you will figure it out. If I had listened to my intuition it would have been much better for me, so trust yourself.
Pat
Hello, Mary.
A couple of meds still help me, but yes, for the most part, mine is constant, bilateral and searing. It is getting to the point where I am afraid to eat solid foods, and conversing with anyone is becoming a chore. I don't know what to do.
I now see a Neurologist. I had a clean MRI, so it is not M.S. I had an MRI of my TMJ joint bilaterally to rule that out. The only thread I cling to is what I am able to glean from my Pain Mangement Clinic. I go tomorrow. I wonder if there will come a day when no med they will give me will ever work.
Some days are better than others, but today, I feel exactly as you described, searing pain . . .everyday. Today, like many days, even my tongue burns on both sides. I wish I had something inspirational to say to you. I suppose my point in this post is only to tell you that I understand what you are going through, to an extent. Without my pain medication, I would never get the 1 1/2 -2 hour break that I get sometimes, and to tell you that I will remember you in my prayers.
Hang in there. There are so many people who have found the right combination of either Pain Management or a procedure which has helped. I do not believe that anyone should push you to have surgery. That is an extremely personal decision. As for myself, I would welcome it. I was told by my Neurologist that I have to see an Orofacial Pain Specialist and try possibly two more medications before I would be referred for MVD.
Good luck. Hang in there. God bless.
Stef
Thank you Stef…What pain meds do they give you??? THey have never given me any because they said they will not work.
Stef said:
Hello, Mary.
A couple of meds still help me, but yes, for the most part, mine is constant, bilateral and searing. It is getting to the point where I am afraid to eat solid foods, and conversing with anyone is becoming a chore. I don't know what to do.
I now see a Neurologist. I had a clean MRI, so it is not M.S. I had an MRI of my TMJ joint bilaterally to rule that out. The only thread I cling to is what I am able to glean from my Pain Mangement Clinic. I go tomorrow. I wonder if there will come a day when no med they will give me will ever work.
Some days are better than others, but today, I feel exactly as you described, searing pain . . .everyday. Today, like many days, even my tongue burns on both sides. I wish I had something inspirational to say to you. I suppose my point in this post is only to tell you that I understand what you are going through, to an extent. Without my pain medication, I would never get the 1 1/2 -2 hour break that I get sometimes, and to tell you that I will remember you in my prayers.
Hang in there. There are so many people who have found the right combination of either Pain Management or a procedure which has helped. I do not believe that anyone should push you to have surgery. That is an extremely personal decision. As for myself, I would welcome it. I was told by my Neurologist that I have to see an Orofacial Pain Specialist and try possibly two more medications before I would be referred for MVD.
Good luck. Hang in there. God bless.
Stef
I heard that Neuros and GPs' will tell you that. But, currently my regimen of meds prescribed by my my Pain Management Clinic includes Oxycodone 15 mg. x 4 daily. It is pure Oxycodone with no Acetaminofen. I was on Hydrocodone for so long, as well as other meds, I began to worry about the longevity of my liver. So, I am relieved that I have a pain medication which helps for a little while. I take my Neurontin, Cymbalta which they give me too, yet, I cannot tell that they do much. I think the Cymbalta may elevate my mood a bit (which I desperately need). If I am remembering correctly, you reside close to me. If you like, I will e-mail the name of my Pain Management Clinic to you and recommend my specific nurse practitioner. The downside, is that tolerance and dependency builds fast. However, withdrawals can also happen with anti-convulsants.
Sometimes, I honestly believe, from hearing the general consensus speak about this condition, that opiates work well for Type 2 symptoms, like what I have, the burning, searing, crushing, stinging , pressure feelings. They do not give me a buzz. Others wonder why I am not totally foggy. I think perhaps it is because, if someone is experiencing legitimate pain, these medications work on the pain, rather than cause euphoria, as they do with recreational users, who make me want to vomit due to the fact that they make it harder for those of us who really need pain medication to receive the help we need in this country. This is one of my largest personal pet peeves. Any time I hear any one say to me that they took pain medication just to "feel good", I know there is someone out there suffering who really needs the relief.
Try anything that may work, or may improve your quality of life. I want surgery, because I know eventually, no pain meds will work, or they may cut me off. I just want to be fixed. I want MVD, but I am being denied by my Neuro as a candidate until I try more meds and see another specialist.
I forgot to mention that I also am prescribed 5 10 mg. Diazepam daily. This would knock a normal person into oblivion, I know. But, this is prescribed to me by my psychologist to help my anxiety over the loss of my husband in '06, my chronic anxiety disorder, post traumatic stress disorder, and it does, for some reason, help relieve some of my TN2 symptoms. I find that taking the 10 mg. Diazepam and the 15 mg. Oxycodone simultaneously is the only relief I ever get from this monster.
I have searched long and hard to try to save myself, as I am raising two girls. They need me. I cannot chicken out. If it is opiates and benzos I need to control my pain, then that is what I will try to find. I do not dismiss the helpfulness of all other medication. Surely, the Neurontin does something, because when I run out, I know it, for sure!
I am going to drag myself into the kitchen and stir up something. I don't feel like it, but I took my third and final dose of the day. I had better work while it is kicking in.
Pat, I just looked up Anesthesia Dolorosa. I had no knowledge of the condition previously. This was knowledge that I needed as I go through the routine of getting different procedures and trying anything and everything which may help. Now, I will be a bit more careful on what I try. I am sorry that you suffer from such a horrid condition, sincerely, my heart goes out to you and Mary as well.
Best of luck to you,
Stef
Mary Miller said:
Thank you Stef...What pain meds do they give you??? THey have never given me any because they said they will not work.
Stef said:
Hello, Mary.
A couple of meds still help me, but yes, for the most part, mine is constant, bilateral and searing. It is getting to the point where I am afraid to eat solid foods, and conversing with anyone is becoming a chore. I don't know what to do.
I now see a Neurologist. I had a clean MRI, so it is not M.S. I had an MRI of my TMJ joint bilaterally to rule that out. The only thread I cling to is what I am able to glean from my Pain Mangement Clinic. I go tomorrow. I wonder if there will come a day when no med they will give me will ever work.
Some days are better than others, but today, I feel exactly as you described, searing pain . . .everyday. Today, like many days, even my tongue burns on both sides. I wish I had something inspirational to say to you. I suppose my point in this post is only to tell you that I understand what you are going through, to an extent. Without my pain medication, I would never get the 1 1/2 -2 hour break that I get sometimes, and to tell you that I will remember you in my prayers.
Hang in there. There are so many people who have found the right combination of either Pain Management or a procedure which has helped. I do not believe that anyone should push you to have surgery. That is an extremely personal decision. As for myself, I would welcome it. I was told by my Neurologist that I have to see an Orofacial Pain Specialist and try possibly two more medications before I would be referred for MVD.
Good luck. Hang in there. God bless.
Stef
Stef, I live in Murfreesboro, Tn. Me email is Stonesfan01@comast.net
Mary Miller said:
Thank you Stef...What pain meds do they give you??? THey have never given me any because they said they will not work.
Stef said:
Hello, Mary.
A couple of meds still help me, but yes, for the most part, mine is constant, bilateral and searing. It is getting to the point where I am afraid to eat solid foods, and conversing with anyone is becoming a chore. I don't know what to do.
I now see a Neurologist. I had a clean MRI, so it is not M.S. I had an MRI of my TMJ joint bilaterally to rule that out. The only thread I cling to is what I am able to glean from my Pain Mangement Clinic. I go tomorrow. I wonder if there will come a day when no med they will give me will ever work.
Some days are better than others, but today, I feel exactly as you described, searing pain . . .everyday. Today, like many days, even my tongue burns on both sides. I wish I had something inspirational to say to you. I suppose my point in this post is only to tell you that I understand what you are going through, to an extent. Without my pain medication, I would never get the 1 1/2 -2 hour break that I get sometimes, and to tell you that I will remember you in my prayers.
Hang in there. There are so many people who have found the right combination of either Pain Management or a procedure which has helped. I do not believe that anyone should push you to have surgery. That is an extremely personal decision. As for myself, I would welcome it. I was told by my Neurologist that I have to see an Orofacial Pain Specialist and try possibly two more medications before I would be referred for MVD.
Good luck. Hang in there. God bless.
Stef
Thank you for your contact information. You know that you have on e-mail on your living with TN page too. Check your gmail for me. Coming your way! Take care.
Mary Miller said:
Stef, I live in Murfreesboro, Tn. Me email is Stonesfan01@comast.net
Mary Miller said:
Thank you Stef...What pain meds do they give you??? THey have never given me any because they said they will not work.
Stef said:
Hello, Mary.
A couple of meds still help me, but yes, for the most part, mine is constant, bilateral and searing. It is getting to the point where I am afraid to eat solid foods, and conversing with anyone is becoming a chore. I don't know what to do.
I now see a Neurologist. I had a clean MRI, so it is not M.S. I had an MRI of my TMJ joint bilaterally to rule that out. The only thread I cling to is what I am able to glean from my Pain Mangement Clinic. I go tomorrow. I wonder if there will come a day when no med they will give me will ever work.
Some days are better than others, but today, I feel exactly as you described, searing pain . . .everyday. Today, like many days, even my tongue burns on both sides. I wish I had something inspirational to say to you. I suppose my point in this post is only to tell you that I understand what you are going through, to an extent. Without my pain medication, I would never get the 1 1/2 -2 hour break that I get sometimes, and to tell you that I will remember you in my prayers.
Hang in there. There are so many people who have found the right combination of either Pain Management or a procedure which has helped. I do not believe that anyone should push you to have surgery. That is an extremely personal decision. As for myself, I would welcome it. I was told by my Neurologist that I have to see an Orofacial Pain Specialist and try possibly two more medications before I would be referred for MVD.
Good luck. Hang in there. God bless.
Stef
Mary,
I'm sorry. I meant check email, not gmail. Sorry, I am having a "bad face night", and am less than all together.
Hello, Gloria. I'm constantly learning on this site, and hopefully contributing as well. My neuro seems to only have a limited knowledge of TN. When I feel like it and have time, I will be looking for someone else. I realized this at my last appointment. I was sincerely hoping that my MRI would reveal the source of my pain, so that it could be corrected. However, it is she, my Neurologist, who told me that I needed an MRI to rule out MS, because I have marginal unsteadiness. However, I believe that this is due to all of the medications I have to take.
Thank you for further clarification.
Stef
Hi Gloria…thank you for responding to my post. I wonder if when I say constant…they think every second. When I do not move my mouth or talk…there is absolutely no pain. Only when I try to talk or eat, etc do I have pain. So would that be Type 1 or type 2? I may have described my symptoms wrong…there is no pain unless I do something to cause it. What type would you think that is. It is amazing to me how these doctors just ask a few questions and then they all of a sudden know what you have and what kind.
Gloria E. said:
Hi Mary,
I, like you, am in constant atypical crushing, searing, burning, aching TN pain. I've gone through two MVD surgery evaluations and please consider what I was told...
According to my neurosugeon, Douglas Anderson at Loyola University Hospital in Chicago, who is reported to be one of the top in the TN field, told me that it has been his experience that the MVD surgery DOES NOT HELP WITH ATYPICAL TN (our kind of TN). He said that it may do nothing or can make the pain worse. He advised that he would not do surgery on me and I'm glad.
I've heard of enough MVD horror stories that made me realize I didn't want to go through all that for no relief or the possibility of the pain becoming worse (hard to imagine). Please do more research and don't believe that MVD is the Holy Grail for TN patients.
I'm still working with my third neurologist, who has a much better understanding of TN than the first two, on a combination of medications. It's a frustrating journey, but hopefully we'll find the right medication combination that will make a difference.
Good luck and feel free to ask me more about my situation.
Gloria
Hi Mary,
TN Type 1 is characterized by jolting, stabbing, or electrocution-type pains, and Type 2 neuropathic facial pain is better described as constant, dull, burning or boring pain with intermittent sharp stabbing pains. Numbness and tingling may also be present with neuropathic facial pain.
I was diagnosed with TN Type 1 because I thought that an ice-pick was being jabbed into my head, then heated up, then jolts of electricity were introduced to it and radiated out from it. And when I thought it couldn't get any worse, it did. I would have these types of ice-pick pain over and over again, many times an hour, over and over again and my worst bout was 22 hours long.
TN Type 2 or atypical trigemina pain is the dull, burning, aching pain like when all my teeth feel like they need to be root canaled at the same time, or my face feels like I've got a horrible sunburn, but I haven't been out in the sun and the burn is on the inside and the outside at the same time. Or my jaw just aches and I can't figure out why. (For me, it's in that division of the nerve).
I hope this helps to clarify the two types of pain.
Jackie
Thanks Jackie…then I am positively type 1…appreciate your help
Jackie M said:
Hi Mary,
TN Type 1 is characterized by jolting, stabbing, or electrocution-type pains, and Type 2 neuropathic facial pain is better described as constant, dull, burning or boring pain with intermittent sharp stabbing pains. Numbness and tingling may also be present with neuropathic facial pain.
I was diagnosed with TN Type 1 because I thought that an ice-pick was being jabbed into my head, then heated up, then jolts of electricity were introduced to it and radiated out from it. And when I thought it couldn't get any worse, it did. I would have these types of ice-pick pain over and over again, many times an hour, over and over again and my worst bout was 22 hours long.
TN Type 2 or atypical trigemina pain is the dull, burning, aching pain like when all my teeth feel like they need to be root canaled at the same time, or my face feels like I've got a horrible sunburn, but I haven't been out in the sun and the burn is on the inside and the outside at the same time. Or my jaw just aches and I can't figure out why. (For me, it's in that division of the nerve).
I hope this helps to clarify the two types of pain.
Jackie