I have underwent MVD two years ago. about a year ago my TN came back but to my suprise it started on the left side of my face and not the side that the MVD was performed on. This was the first time my husband had witnessed a episode of TN. He felt lost didnt know what to do, theres nothing he could of done to make it better, except offer his support. The pain came and gone by the next day, a month later bam its back on my right side. R u kidding me, both sides what is going on here. I made an appt with my family dr. and she had never heard of Bilateral TN. shes has had me on Neurotin, tegetrol, trileptor, With nothing but insane side affects i feel like a alien no one knows what to do with my pain, they look at me sometimes like im crazy. My last ecperience was with Tripltor i though i was having a heart attack. as soon as i stopped taking it my chest was normal again but hello TN is Back. My neurologist Said i have the rarest form of TN, and the hardest to treat, and that Its going to be very hard to find a neurosurgeon who specializes in Bilateral TN. Hello does it look like i can handle trying to find a dr. that deals with this. Its been five months now and i feel like im looking for a needle in a haystack. Ive searched all over the world only to find out yea theres ALOT of neurosugerons out there that deal with TN but Bilateral ATN does not exsist. MVD has the best succes rate for this which is only 40% serioulsy and Gamma knife of only 35% success. which leads me to think since I have already done the MVD and medications with no success. So then there is no help out there for me at all. Im only 38 yrs old, dr’s have told me about other procedures but bottom line the TN always wins. I am very very scared of even thinking of doing another invasive sugery since my last MVD was scary, the Dr came out and told my family that the sugery went great but for somereason i was not waking up from anestisia, and they didnt think i would. Come to find outjust when everyone was in my room saying there last goodbyes I started to respond. So dr, look at me like what would you like to do with your life live with the pain or take a risk. Well hello would you honestly take a risk like that when you already know that your the type of person that if anything can happen will happen with you. Right now i am currently on 25 mcg of duragesic, 7.5 mg vicoding every 4 hrs, 1 mg zanax to sleep at night. they have tried cymbalta, trazadone, zoloft, for my depression that did not work. Finally my dr told me that chronic pain and drepression are a rotating door one always following the other. My hope is all gone, and feel worthless. My independence is totally gone, I done drive anymore because of fear that a attack will happen while driving and also with all the drugs im on its no difference than a drunk leaving a bar. I would just like to know is there something that i am overlooking that i havent tried yet/ HELP. I know understand why this is called the sucide disorder
Hey JD, It looks like you have been given a whole lot of negative feed from your medical community. You are in the right place because we have a whole lot of bilaterals in this group who cope fairly well.
You have GP who's never heard of bilaterral, a neuro who's told you this the rarest form and good luck finding a surgeon....you need someone to tell you - "I have good news, I can help you, it might not be easy but I'm going to stick with you until we find a solution". You deserve to hear that - we all do. If you are feeling low because you haven't heard it, that's not your blame its theirs.
I suggest you start reading in the Face Pain Info tab. You are going to find a lot of positive info there. In the groups you will find a Bilateral Group. You may even find a group in your area and a recommendation for a Doctor who is more willing to make that statement above. Most of all, I think you are going to find some Hope.
Bottom line - TN does NOT always win. Sometimes we win a battle or two. Its a matter of not only finding the right procedure, but the right medicine and Doctor too. Don't give up. Keep going - the right combination is out there for you.
I see your meds and there are a lot of anti-depressants / pain meds. Are there any anticonvulsants? Not everyone needs that, but if your current med load isn't doing the trick, change it up. After reading, reading, reading and reading some more - don't be afraid to challenge your Doctor. And if your Doctor STILL hasn't heard of Bilateral - find a new one. If they can't update their knowledge you, they don't deserve you as a patient.
Hope is waiting for you around the corner - you just haven't found the right corner.
Elaine
Yea my doctors have perscribed me the anticonvulsants from neurotin, tegetrol, to trileptor. right now im not on any on the anticonvulsants do to real bad side affects.
It was really reassuring to actually hear from someone else that there may be a solution to this. I was on the phone once more again looking for a neurosugeron and they all want to perform some kind of sugery as an only option. At this point i am not ready to believe that that is the only option for me. Its like as soon as they find out the insurance i carry they want to schedule me for another MVD. I just cant bring myself to do that again knowing what i have alreay gone through with it a couple years ago. the sugeron that origionally performed the first MVD was aggorant when he found out that the MVD failed. I mean do any doctors now days care about the person there treating or is it all nothing but a monopoly for them.
I jsut want to say thank you Elaine for your positive feedback. It totally put a smile on my face.
Thanks
Thank you Tommy,
Is good to hear that there are some doctors that do care and are out there to help. I just wish that there was a option out there to bilateral ATN that you know that when you get out from the sugery you know that you will have to worry about it flaring up again, and that it was one other thing in you life that you conquered and put behind you.
As far as the sucide, there is no way i could ever do that, i can totally understand why they call this disorder the sucide disorder. I mean i look at myself as a VERY VERY srtong person not only mentally but physically. And just knowing that some of my friends think its the end of the world when they get a migrane, can you just imagine what they would think living with TN.
I feel that this disorder needs more researching as far as remadies. I know that the anticonvulsants work for some time but needs to be increased to high doses. I was only on 600 mg of trileptor and my heart felt like it was in a vise. The side affects that i get from the anticonvulsants were insane. Maybe it was because when i was a child i had epilepsy that i ended up growing out of, my whole life i was on anticonvulsants. I just am curious has anyone every done the acupunture for TN, and or the herbals that are out there, and if so did they work???
I guess im ready to try anything right now as long as it keeps me out of the operating room.
Tommy R said:
You are not alone. I have trigeminal and occipital neuralgia on both sides. The trigeminal neuralgia is in the jaw area on my right side (TN 3 branch) and trigeminal neuralgia on both TN 2 branches. The Trileptal at a very high 2400 mg is of some help. After I did a standup MRI my neuro told me to avoid any and all surgeries. All of my doctors have been against any surgery other than a fusion at C6-7. My damage is from all of the torn ligaments and deflated discs in the cervical discs. Not all people have the same wiring. Some of the damage is as low as c5. It is odd but rare for the nerve roots to be as low as C5. When important nerves are cut by a surgeon there is always, a possibilitiy that the nerves will find a new smaller nerve and then comes the pain. Even worse, some surgeries cause permanent paralysis and you have pain and half your face is paralized. I know all of my doctors are very opposed to surgery. I know the longterm success of the gamma knife might not be as positive as we think. I have had some improvement from occipital rhizotomies. This is not permanent procedure and they last between 6 to 12 months and there is no limit to the number of times you can have the procedure. It take about thirty minutes from the time I am walked into the operation room and walk out. There is also a trigeminal rhinotomy. Because it is a much more difficult procedure, I decided against it. The results from occipital bi-lateral nerves and the bi-lateral trigeminal nerve at the second branch are very positive. They have dropped my pain level a couple of points and my occipital neuralgia is not nearly the problem before the rhizotomy. I had to repeat the procedure and again recently.
Don't mention suicide. You have no idea the forever pain you will cause everyone you love. Instead of that irreversible act, I find that, as soon as, I wake-up, I offer all of my pain and suffering of the day for someone in need. It is very beneficial to layout a plan for the first two hours of the following day. It gets you into some form of purpose and more importantly it forces the brain to not completely be consumed by sending pain signals. If you start to feel worse, catch yourself and try any distraction of the brain. My doctor tells me, and I found it some what true, that your brain can focus on several things but focus on only one major thing. That is the reason for the importance of having the two hours planned. Tommy R
I have headaches on a daily basis, but i never complained of them or connected them to the TN. Its funny you should ask if i Have Earaches with this. That is how i origionally figured out that i Had Tn in 2007. I woke up at 4 am to get ready for a normal day at work. I though i had the starting of a earache since it was in Dec middle of winter. Well i went to work and through out the course of the day my ear got worse. Everyone in the office was telling me to goto the dr. well with me being so stubborn i didnt goto the ER till about 5 pm. The Er dr. put drops in my ear that didnt help and some other stuff he then came back into the room to tell me that i dont have a earache, and that he wanted to do another test. Well the other test was of him putting a needle into the roof of my mouth, OMG i have never felt anything like this pain before. This lasted for about a minute but if felt like forever. Thats when he told me i had TN, and it was about 4 months of hell later i had the MVD. To this day i have the continual inner ear pain, headaches, the zaps that last about a minute at a time, pressure. but i will say that my left side of my face is nowhere as bad as my right.
Half the meds I'm on are for migraines and after 8 years of TN its only this last year that I have actually seen the relation between the two. My migraine is a warning of a bad TN attack. The worse the migraine, the worse and more quickly the TN attack will follow. It can be anywhere from 1-2 days later to a few hours. There are quite a few people on here that have both.
For many, TN is caused by a looped vein or artery on the nerve. Many migraines are triggered by changes in pressure.....perhaps in the same person there is some kind of vascular link? I tend to think so.
There is also a type of Neuralgia that is related to the ear. Can't remember the name but it should be on the Face Pain info page. You should read a bit on it. I'm glad Tommy mentioned his experiences and the reason why his Doctors are against surgery. Whether you agree or not, they have at least given a reasonable explanation. You should expect this out of a Doctor when they are making any sort of recommendation to you - a reasonable explanation to backup their opinion.
I didn't really offer much medical advice, but I am glad I helped you understand that we are here to support you.
Elaine
I actually tried acupuncture one time. I fell asleep during the procedure because it was very relaxing and relieved all the pain while the session was going on, but about half an hour after the session it was right back and just as excruciating. I haven't ever gone back to that, but there are a lot of herbs I use when I just need a break from the pain because I'm at a breaking point. There is an entire list of stuff in the book "Striking Back" and I've used all of them before but what I do now is take 1000mg of B-12 and a B-complex every day. That seems to help some and something is always better than nothing with this. I'm not sure if it actually helps though or if it's because I feel like I'm doing something and not quite so powerless.
The acupuncture and herbs may help but everyone is different. I was willing to try anything because I was so sick of being on a ton of medication combinations that never really helped. I always believe that getting a massage, a reiki session, acupuncture, or anything like that can help just to relax your body which is so hard to do with constant pain that won't go away.My neurologist highly suggests this as well, just to release tension and help with my mental coping.
Good luck to you and I hope things start turning up!
When I was 13 yrs old I was diagnosed with depression. . .so thats always been a problem. I was rediagnosed as rapid cycling bipolar and borderline personality last year. . .yikes!! But I had bilateral face pain all my life. I never told anyone about the pain until 3 yrs ago. And the only reason I started dealing with it was because i couldn't ignore it anymore. Once I was diagnosed with ATN 1 yr ago my life changed allot very quickly, my boyfriend dumped me 3 weeks after my diagnosis, my family doesn't believe i'm in pain. I applied for ODSP and after a year got on disability. My family are embarassed by the fact I'm disabled. I'm having a hard enough time dealing with my own thoughts and feelings without dealing with everyone elses thoughts. AND! oh i forgot. I started seeing a pain doctor who told me the entire 6 months i saw him that there isn't much he can do(he'd say that 8 times a session every session), he would tell me that most of the meds for ATN aren't covered by odsp drug coverage, and there are all kinds of therapies that aren't covered. They only thing that doctor did for me was give me meds that help some(finally, thank god, but its still not enough). And then he just stopped seeing me!! I want an on going relationship with a specialist, especially someone that works with TN. I sometimes wish I had a more common disorder so i could go to a group therapy session about it or something. And being only 25 with this really makes it harder. Everyone I know is getting married, getting a house and having kids. I'm painfully single, disabled, in an apartment with my cat and with a family where most of my family don't like me right now cause of some stupid thing that happened a year ago that i apologized profusely for. ARG!!!! If they had any f-ing idea what our lives are like they'd probably kill themselves. lol I just wish there was a way to show them what we feel. But there is no way. Anyways, sorry i went off on a tangent. My point was that I had this pain doctor that always said he couldn't help much and expected me to accept that and then suddenly stopped seeing me. I just seemed to come at a terrible time and was like my boyfriend dumping me a year ago all over again. Except I was dependant on the pain doctor for different reasons than the boyfriend. lol anyways, I had to get that out. Thanks for listening and we all need to stay strong no matter how hard it is.
I sympathise with what you are going through. I also have bilateral tn. It started on my left side and moved over to the right side as well. My pain is constant and I just recently started having pain in the back of my head so not sure what is going on there. I tried both the gamma knife and the MVD with no success but there is hope. I found a pain management doctor that has changed my life. I was on 100 mcg fentanyl patches and break through meds and that still wasnt controlling my pain. I have a pain pump now with fentanyl in it. It has made a big difference in the pain control. I dont sleep all the time now (like i did on the patches). Most importantly my pain control is so much better. It can be a slow process at first because they have to increase the dosage in your pump a little at a time but anytime you need it increased it is a simple process. I recently got the remote type thing that i can give myself a boost 4 times a day instead of taking the oxycodone. I had my doubts as to whether or not it would work and I am actually the first patient my pain doctor has that has a pain pump. I was willing to try anything. There is hope. Talk to your primary care doctor and see if he can recommend a good pain doctor that isnt afraid to give pain medication. That will be the biggest problem you run into when trying to find a pain doctor.
Thank you for all of your responses, it’s very helpful and much appreciated. It’s been awhile since I’ve been on here, since my last post I have actually found a neurosurgeon in the Elk Grove Village area of Illinois. I have learned that I have to give this dr. a fair chance to do his job. It’s a really hard thing for me since having the door so called slammed in my face because i went from having no insurance to having the best insurance because of my husband. It sad that what kind of insurance you carry is ultimately the deciding factor of what kind of treatment you will receive. This is something that bothers me allot. I went from being holding a Senior Executive position for years to not being able to work because of this illness. Now I’ve been fighting to receive disability and that is a rat race in and of itself. To dr. telling me let’s TRY a procedure on you left side to see if it will work.
When i went to have a tooth extracted a couple weeks ago the oral surgeon was very very adimate that I do not do any surgery/procedure for my bilateral ATN until they (Dr's) have done more research with it. He stated that all the procedures that are there now will only cover up the symptoms like and band aid for a period of time and the symptoms end up coming back. When i went to see the Neurosurgeon he was called out for and emergency and i met with the radiation oncologist who was also schedule to be there at this appt. The oncologist went through the processes and described that the MVD process only removes the arteries/blood vessels that around the Trigeminal Nerve and they will end up growing back in the cases not all but allot. Gamma Knife is a procedure that per se destroys the nerve that only can be done twice; it’s a very good and common procedure with a good success rate for TN 1. I asked him the question that has bothered me for some time; since i have this on both sides of my face would any procedure be just once procedure or two different ones because of it being on both sides. He stated that since my case is very rare, they have never done gamma knife on bilateral at same time. And that any procedure would be one for each side. He wanted me back to see the neurosurgeon right away and schedule another apt for this Friday. I’m just lost on where to go with this. I’ve taken a list of anticonvulsants which of no success due to the side effects. I asked about the tricyclic antidepressants and he sighed and said he wasn’t sure about going that route. All i know is what i go through every day. And trying to explain that is hard I’ve kept a journal of my experiences on a daily basis, because my memory is not like it used to be.
Between trying to win disability talking with my lawyer, trying to win this battle with TN and lower back issues is to say the least overwhelming.
I try to challenge myself every day in some way shape or form, just to make myself think this is NOT going to control my life. But I’m always led to it is controlling my life and now i have to learn a whole new way of living and that is daily living with chronic pain. It’s a rotating door between depression, pain, the thought of what’s my purpose with these daily limitations. I know I’m a fighter for what’s right will continue to search and try to find answers and solutions to where i will be able to have some kind of NORMAL life or a life without such an evil pain.
i nedd cheering up. im on 3 braches and need reconstructive surgery, im on fetanyl 100, oxy-30 2-3 a day. valium 10 mg. 3x day.,wellbutin150 mg. this is from a facelift in 2002 with no improvement. i am going on amitryptaline. am i depressed-very.
cant get out of this dark hole. i hate this life.
Hey Elaine, I hope by now you're feeling better and that things are looking up. Thinking of you....
~ Vicki
elaine48 said:
i nedd cheering up. im on 3 braches and need reconstructive surgery, im on fetanyl 100, oxy-30 2-3 a day. valium 10 mg. 3x day.,wellbutin150 mg. this is from a facelift in 2002 with no improvement. i am going on amitryptaline. am i depressed-very.
cant get out of this dark hole. i hate this life.
Vicki Dvorak said:
Hey Elaine, I hope by now you're feeling better and that things are looking up. Thinking of you....
~ Vicki
elaine48 said:i nedd cheering up. im on 3 braches and need reconstructive surgery, im on fetanyl 100, oxy-30 2-3 a day. valium 10 mg. 3x day.,wellbutin150 mg. this is from a facelift in 2002 with no improvement. i am going on amitryptaline. am i depressed-very.
cant get out of this dark hole. i hate this life.
Hey there. My name is Lynnette, and I'm in several support groups for TN because my dad suffers from this painful illness. I don't know what it's like, but I've seen my dad in severe agony, tears rolling from his eyes, and no one not being able to help the pain go away. It literally tore me apart to see that. We are considering MVD if his symptoms continue. For now, it seems to be under control. We are all praying for him daily. Have you tried the skull Base Institute in California? I personally spoke to the doctor there over the phone and he was very certain he could help us if we chose that route. The only thing is that it's not covered under medical insurance. I can't remember all that they told me, but it was alot of out of pocket. That will be our last resort. However, if that's the only thing that gives him relief, we'll do it. For now, I have found a dr. who was highly recommend to me. He is in Tampa, Florida. If dad's pain gets worse, we are going there. His name is Dr. Loveren. Many have told me how good their experience was with him. Also, another recommended dr. works with Dr. Loveren, under him actually, he was trained by him. His name is Dr. Youseff. Not sure I spelled that correctly. They said either one is awesome. See if one of these can help you. There is no price tag on your health and being pain free. I live in Louisiana and it'll take me 12 hours to drive there for a visit, then again for the MVD if he's a good candidate. I'm just praying that it goes away forever.
Good luck, and NEVER give up. Keep me posted.
Lynnette
Well said Elaine! I have ATN bilateral plus TN and probably GN on the left side. I really needed to hear your words…thanks a lot @
Elaine Kobelka said:
Hey JD, It looks like you have been given a whole lot of negative feed from your medical community. You are in the right place because we have a whole lot of bilaterals in this group who cope fairly well.
You have GP who’s never heard of bilaterral, a neuro who’s told you this the rarest form and good luck finding a surgeon…you need someone to tell you - “I have good news, I can help you, it might not be easy but I’m going to stick with you until we find a solution”. You deserve to hear that - we all do. If you are feeling low because you haven’t heard it, that’s not your blame its theirs.
I suggest you start reading in the Face Pain Info tab. You are going to find a lot of positive info there. In the groups you will find a Bilateral Group. You may even find a group in your area and a recommendation for a Doctor who is more willing to make that statement above. Most of all, I think you are going to find some Hope.
Bottom line - TN does NOT always win. Sometimes we win a battle or two. Its a matter of not only finding the right procedure, but the right medicine and Doctor too. Don’t give up. Keep going - the right combination is out there for you.
I see your meds and there are a lot of anti-depressants / pain meds. Are there any anticonvulsants? Not everyone needs that, but if your current med load isn’t doing the trick, change it up. After reading, reading, reading and reading some more - don’t be afraid to challenge your Doctor. And if your Doctor STILL hasn’t heard of Bilateral - find a new one. If they can’t update their knowledge you, they don’t deserve you as a patient.
Hope is waiting for you around the corner - you just haven’t found the right corner.
Elaine