Hi everyone, I’m new to this forum and I’d thought I would reach out for some support as I’m seriously lacking it at the moment. About 2 months ago it started with a terrible toothache or so I thought. I had a problem tooth removed. 2 days later I was at work and the pain returned with a vengeance. I was in the shower and the pain was so intense that my legs gave out on me and I lay there for about an hour, eventually landing in the er. The doctor was amazing and diagnosed Mr with tn. I was put on carbamazepine and sent home with the assurance that I would be pain free. As most of you know carbamazepine takes quite a bit of time to kick in. I didn’t sleep or eat for a total of 3 days. After which I went back to the er in even more intense, agonizing pain. I was given 2 Percocet, 5 in doses of dilaudid and antianxiety medications. I was still in pain. My neurologist came into see me before our first appointment and provided me with some relief with another dose of iv something or other I can’t remember the name of it. I went home and slept for days.
Current I am taking 400mg of carbamazepine. Twice a day and baclofen as needed for breakthru. My problem is I live in a province with horrible health care issues. I can’t find a family doctor, so when my pain increases I have to call my Neurologist who more often then not is at the hospital and unavailable until the following week or a few days later. I work 50 hours a week and lately I’ve had to cut back. My employer is an immediate family memeber, who doesn’t get it at all. I’ve been told to work thru the pain and man up more then once. I get frequently made fun of for not stepping up to the plate and if I ask for small favours regarding my health I’m being selfish. I live in a place with 0 neurosurgeons, and after reading posts and other people’s experiences I’ve decided I would like mvd surgery. I have been told it won’t be considered unless I’ve tried all medications? And that I won’t be able to pick my surgeon if it does get approved? Has anyone else had these experiences? If so how have you handled them? Thanks
I’m so sorry you’re struggling so! I completely understand!!
I’m from Montreal but have lived in Alberta for many years now, I can assure you that you have every right to pick your neurosurgeon. The only province that doesn’t have reciprocal healthcare with the rest of Canada is Quebec. That being said, some provinces will ask for prior approval for mvd surgery in a different province and that request can be done through the neurosurgeons office and your provinces health care, OR you and your neurologist can make the request and include documentation.
I had my MVD in Winnipeg with Dr. A. Kaufmann, his office took care if the request for me. I didn’t have to do a thing. If you haven’t already been to his website, go check it out.
I emailed him personally for a second opinion, and received a reply from his office within 2 weeks. You can also have your neurologist refer you to him for a phone consult and forward your records and recent MRI to him.
The doctors are right though, they usually want to see that you’ve tried at least 3 medications before you consider MVD…
Tegretol takes time to build in your system, and sometimes it helps to change to the extended release version as it lasts longer in your system for better pain coverage. Something to consider…baclofen works to boost the effectiveness of the tegretol and should be taken daily not on an as needed basis, I’d talk to your neuro about that on your next visit.
Also next time you see your neuro, ask for a plan in advance for how to increase your dose of tegretol/ baclofen should you have an increase in pain, this way you’re not waiting in pain for a doctors visit or call back.
Welcome to the group, sorry you have to be here, but glad you found us and this is the place for support! I feel and understand your pain, I lost 5 teeth before I was finally diagnosed, I just wanted the pain to stop and who had ever heard of TN, apparently not my dentist! I can't give much advice on getting things approved as I am in USA, but I do know from things here persistence is the key! Call your Neurologist as many times as needed and try not to take no for an answer. My experience they eventually get tired of many calls and get you up with Dr! As far as work and family, it is most difficult for many to understand TN, as there is nothing to see. It has been said here while no one would wish this pain on anyone, wish they could feel it for just a few, then they would understand. But since that is not possible, if they are willing, education is the key, there are a few great videos that explain it well, they are not long. TN Awareness day is coming up in October, and there is one video someone posted to raise awareness and understanding. Link is at the end of this. No you are not alone in folks not understanding. Especially hard because most have not heard of TN. I do have really down days, ah this is one of them, but I try my best to keep on. I am on Gabapentin, have had to increase dose over the years, and do have break through pain, but I still live. Most importantly, be good to you, and know we are here and we care very much. Anyone who lives with TN is manning up everyday! You will get a lot of good suggestions here. Also check out some topicals, such as Lidocaine patch. I have not used but many that do can give you those tips.
My dr seems to be adamant that the province will not pay for me to get surgery done “all the way out there” as Dr kaufmann was who I asked to be referred to. As I’ve already asked for a referal and been refused ( not by his office) would it be wise to contact his office directly? I’m already taking baclofen after requesting breakthru meds several times, my dr finally gave me something this month. It works some of the time but not always. Mri was done and came back as idiopathic. No mra was even considered could that be why she’s refusing a referal as well? So far I’ve been on carbamazepine and tramodol, carbamazepine and diclofenac, and now carbamazepine and baclofen.
I as well am having a bad day! The shocks are really intense today and because I am at work I am just bearing it! I am so sorry you have no support from you family/co-workers but I agree that education is the key! I printed off fact sheets and gave them to my family and sat down with my manager and explained what was happening to better help them understand that I was not making up anything to get out of working or helping! You have to take care of you...this pain is nothing that you can press through some days. Don't let anyone make it seem less than what it is. Don't let anyone make you feel bad for wanting to feel better...you owe yourself that! I pray that today gets better for us all and that at some point healing or restoration is achieved.
Thanks to betsy and more as wel. I’ve been struggling in silence for the past few weeks and it’s so great to hear from people who are feeling the same. Education is an excellent weapon against ignorance, but you can’t do much if the pupils are unwilling. Everyone close in my life know of it and very few are willing to try to understand it. Those few are truely incredible people who have been great resources for me. I’m sorry to hear so many other people are having a similar day, I just hope that with patience and time we will all feel better
Wanted to add one more thing, I have found the unknown brings fear in people, they choose to be ignorant because it is easier than learning what you have, scares them. I have found something else about people too, my husband was in hospital years, home now, leg amputated and in a wheelchair. Many, many that knew him have stopped visits, it is too much for them, this includes some of his family and my family has not come to visit once, they say too much for them, lol, too much for them???Hello what about me! Sometimes we just have to be patient and hope for understanding and like you said, embrace the wonderful that do understand. There are many awesome people here. And can't say it enough, like said, be kind to yourself!!! I took an extra dose of meds and feeling better already, off to groom my dogs and hoping I can with no pain! Thinking of everyone and gentle hugs to all!
THIS IS TRULY A VERY DIFFICULT EXPERIENCE! HAD SURGERY LAST YEAR AND THOUGHT THAT WOULD BE THE END OF IT. THE SYMPTOMS WERE INTENSE BUT NO NOTHING COMPARED TO WHAT IS GOING ON RIGHT NOW.
MY GP PRESCRIBED MEDICATION THE OTHER DAY WHICH SEEMS TO BE HELPING HOWEVER, JUST WAITING FOR THIS TO KICK UP AGAIN.
HAVE CONTACTED TUFTS MADICAL WITH ALL THE APPROPRIAT INFORMATION TO HOPEFULLY GET AN APPOINTMENT FOR THE GAMMA KNIFE TREATMENT. IT CAN BE USED OVER AN OVER AGAIN. MY PRIMARY CONCERN WITH THAT TREATMENT WAS THE RADIATION BUT, IT DOES NOT SEEM LIKE SUCH A BAD SOLUTION AT THIS POINT.
PLEASE DO NOT BE DISCOURAGED, THERE IS A SOLUTION.
Hello Amlee: You are fortunate to have been diagnosed relatively quickly. I experienced TN pain like yours in Aug 2005 and was started on Tegretol and it took up to 1200 mg per day to be completely pain free, but it took a seemingly long, painful time to build up to that amount (about 2 months if I remember correctly). But that is the best way to minimize side effects. At that dose (max possible), I had to take it in multiple small doses around the clock. After 2 1/2 years, I was able to gradually reduce the dose, due to it going into remission, but then I developed Leukopenia (and was declared allergic to Tegretol). So the doc switched me to 30 mg/day of Cymbalta and 50 mg/day of Topamax which worked fine up until spring 2013 when the TN came back with such a vengeance that 120 mg/day of Cymbalta + 800 mg/day of Topamax + 50 mg/day of Lamictal was having zero effect and she recommended seeing a neurosurgeon who performed only Gamma Knife surgery. I immediately scheduled an appointment at the Mayo Clinic in Rochester, MN USA. Here is what I learned and so what I recommend: (1) avoid surgery as long as possible - try all possible meds before reverting to surgery because all of the surgical options have dangers and will likely have to be repeated or will ultimately have to be supplemented by meds; (2) their recommended preference /sequence of surgeries were first long-needle balloon procedure, 2nd MVC, and 3rd gamma knife radiation; (3) quit consuming any caffeine and other stimulants - these work against your meds - which are Central Nervous System suppressants. Nobody had ever told me this before - guess it was such a common sense thought, they just thought we would all figure it out on our own -- but it made an immediate difference!!! And oh, by the way, they reviewed my blood work that caused the local neurosurgeon and GP to conclude I was allergic to Tegretol and they concluded that I was NOT allergic to Tegretol and they would never have taken me off it, but would just have monitored me carefully for a while. They suggested that I could return to Tegretol if my current protocol failed. They recommended a slight increase in my current level of Lamictal (which brought me complete relief within a week, combined with the elimination of Colas & teas). And they suggested other RX protocols that my local MD had thought were not possible due to the supposed Tegretol allergy. Keep up your hopes. DO NOT resort to surgery without trying more meds --- building them up very slowly. AND CUT OUT CAFFEINE COLD TURKEY IMMEDIATELY.