And that frustrates me, even though it somehow rhymed. :-/
I'm so happy to hear all the people who are nervous yet eagerly anticipating their upcoming MVD operations. And for those who have had it and are in remission. That is a testament to prayers being prayed for you by loved ones and strangers and friends from this forum. Jesus was watching over the doctors who performed those operations each and every time!
With Type II and Atypical Odontalgia, where MVD is NOT an option, I will never get to experience a "remission" or full-blown CURE. I have to wait patiently for the doctors and researchers to find better operations for the Atypical population. It's like it's wonderful that TN patients have the opportunity to be cured and get their lives back. But Atypicals are kind of the oddities, the one's nobody knows what to do with except hand out meds and hope they work maybe 10% in helping the pain.
I would never want TN. I can't imagine what those electric shocks must feel like, but TN2 can bring me to my knees too. And it doesn't let up. It's always there.
I guess I want better representation from the medical community to help with Atypical cases. It seems all they've done in last two decades is change the name from ATN to TN2. O_o Really? WoW!
I'll ask my new PM or find a Neurological Association and ask what is currently being done to address the needs of the Atypical patient when the gambit of anti-seizure meds have not helped. And most surgeries end up making the pain worse or developing another pain on top of the Atypical pain (Anesthesia Delarosa).
Anyway. Those are my thoughts after coming down off that loopy Musinex (blog post). I hope at least one person with TN2 or even TN undstands my plea. :-/
Be blessed everybody.
So sorry to hear you are suffering so! While I don’t have Atypical Odontaglia, I do have ATN which did not respond to MVD. In August of 2013 I had a peripheral nerve stimulator implanted to control the pain. It works wonderfully well, and I no longer take medication. I do not know if this is an option for you, but it may be something for you to consider.
Best of luck
Christine
Jamie,
I was just thinking the same thing as I was reading through posts on a Facebook page for TN. It is very frustrating to know that medication is basically my only option. Thankfully my medication is working well for me right now but I really worry about the future. A year and a half in my pain and locations of pain have increased so greatly. Scares the beans out of me.
I also feel very confused sometimes because it seems like some people with ATN believe there are procedures and some have been helped. But I have also talked so many that say to stay far away or have ended up in worse shape. I can't even figure out what my diagnosis really is at this point. After seeing a neurosurgeon and a new neurologist I really have zero answers.
Just wanted to let you know that you are not alone in your thoughts :)
Jane
Jamie, I have bilateral TN, diagnosed in 2002.
Right side TN1
Left side TN2, as it worsened, became progressive and med resistant I also have TN1 on this side.
I did have MVD when the meds no longer worked for my TN2, no compressions were ever visible on any mris over the course of all those years. 3 compressions were found during MVD. Although the MVD did not “cure” me of TN, and I only had 4-5 months pain free on 1 med…
It did help slightly in that instead of being on 3 meds and having excruciating pain 24/7 …I now have hours of minimal to no pain each day. I’m still in a bad way, sadly, but I have no regrets trying MVD.I’m currently on 2 meds and suffer daily but not like pre-MVD.
My TN2 is not managed. The meds help only slightly.
I agree with and completely understand your post and the thoughts you express in many ways as it’s predominantly my TN2 that I suffer from with little to no options on the table. I’ve been there bought the shirt with almost every med, treatment available except for the nerve stimulator as Christine mentioned and I have yet to try nor will I Botox.
However research IS being done through the Facial Pain Research Foundation!! Not just for TN1, but for ALL facial pain!! This is the HOPE I hold on too! I support this foundation made up of researchers around the world collectively working on several different projects to find a cure or at the very least an effective treatment!
If like me you find yourself completely discouraged, go read through The facial Pain Research Foundation’s website to find a glimmer of HOPE, encourage friends and family to donate and support this cause, ultimately I truly believe they are our only hope at this point!!
Huge (((( hugs )))) , Mimi
Hi Jamie,
I totally understand where you are coming from. I have ATN too and while I'm ecstatic that people are finding relief through MVDs I also really wish there was something for us ATNers too. Ive been to so many doctors who know exactly what TN is and what to look for but the Atypical aspect completely throws them off and they think its not TN and come up with all these wacky diagnoses like TMJ, migraines, myofacial pain etc. Its super frustrating especially when they don't listen to you. So I feel like I have this extra hurdle to overcome because its atypical to just find someone who believes me.
The burning is just the worst!! nothing like I have ever experienced in my life! thankfully I have been lucky responding to an tricyclic antidepressant called anafranil and Im able to function quite well. But when I get break through pain it feels like the fear turns my body to ice because I know how bad I used to feel and I know my pain has progressed. You are definitely not alone. Hang in there we are all in this together! please feel free to msg me if you ever need a chat or to vent! xx
Hi Jamie
The leads for my implant run along the Trigeminal nerve. Since I have all three branches affected, one lead runs in front of my ear into my cheek, and the other is behind my ear into my temple. Each lead has 4 contact points, so I am able to control the current to different areas with a remote control.The battery is in my chest, just under te skin.
It works really well!
Hi Jamie, glad you had a chance to read up on the FPRF, I try to check it regularly, some good reading there. I’ve also donated because I truly believe they are well on their way…
Botox, well I haven’t seen enough long term studies or have found anyone showing any lasting benefit nor anything regarding adverse effects…
One moment at a time … (( hugs )) Mimi
Oh I have never heard of anafranil. I will look that up. I’m on Nuerontin 2400 mg Noratrypline 100 mg Lorazapam 4 mg These are all spread out through out the day. I usually have to take an extra Lorazepam and or extra Neurontin. Ready to go to bed by 8pm. And this is the rest of my life because it’s ATN.
“Thankfully”, there are a lot of us here and we are all in variations of the same boat and understand eachother - in the end only so much can be done. But I like to think of this as a lot, compared to nothing at all! I struggle the most with my ATN too, and have currently run headfirst into a Neuro of the variety that tamzee describes. But, at least there are doctors and meds, and at least I am in good health, all limbs working and exciting carreer ahead, and I have a large and loving family and enough money. In other words, I like to stay positive.
I have had this thing since I was 20, and surgery was never an option for me, due to the virus that causes it in my case. You adapt, make your own strategies, and the most valuable lesson I have learnt is to thoroughly enjoy the pain free days, and NOT think about the pain if I am in pain. Distraction is my survival and even a smidget of self-pity makes my pain so much worse.
I think it is easy to forget that there are so many people in this world faring much worse than us. People are injured, displaced and lose their families in war. Others suffer from hunger, oppression and extreme poverty. Real people, not just statistics. (And among them, there are bound to be untreated TN sufferers…)
My life would be different without the pain, but I would not be the same person, and that is at least a gain. I don’t feel anywhere near rock bottom - I actually feel like I am living life like I want it. Sure, I am in pain, but this is my life! If I am to live for 50 more years (I hope), then I better make the most of it!
I've had ATN for decades -- called AFP for most of that time. Now it doesn't seem to matter what it's called. You simply have to have a doctor who is willing to try new approaches. For hope you should look at Dr. Casey's video talk, a link to which can be found on the home page of this site. An insight of my own (as I sit here with searing pain throughout the soft tissue of my head, bilaterally): this pain has been hell to live with, but as I look back on my life, the happy memories present themselves to me now as if I hadn't experienced them thru pain. This is hard to explain, but it certainly has nothing to do with an inborn (or learned) sunny disposition. In fact, I'm a world class grouch, who overanalyzes and overthinks as easily as I breathe. I'm also quite lazy. But I have to admit, the good memories come from times I challenged my natural inclinations (or let others prod me to). I'm still too grouchy for my own good, and I can spend some days curled up on the sofa feeling sorry for myself, while the day's pain grows worse and worse. But I can look back and see that my life was better, is better, on those days I keep busy, do things that have always brought me pleasure, and see people despite the fact that they will never understand what it is I go thru. My son just got his masters from Oxford, first in his class. I just came home from seeing my daughter play in her band. I think of all the good times (yes, there were bad times, too) and all I feel is the joy they bring me (and, oh, it's so hard with a teenage daughter to feel my way past the bad stuff!) It's real and untouched by pain. My wife and I took a vacation to Europe a few years ago and while I know I was in pain all the way through it, that pain is just an ancillary part of my memory. For putting up with me, she deserved the vacation, no matter how lousy I felt. And despite the fact that I felt lousy, I will always fondly remember our trip. That was the main thing. So what if my head was exploding. It was a great vacation. We fought only once in 11 days. (No kids for the first time may have helped.) So call me the reluctant optimist. I fight optimism with every fiber of my being. And still I'm thankful for the times I lose, for the times I'm able to act as if I were an optimist. I haven't totally quit on new approaches to the pain. It's still a nightmare. So I'm not suggesting that anyone quit. I'm just saying: act as if.
I am loving all this positive attitude! thehoward you are so right. When Im going through a bad spell, thinking of all the things I have done and accomplished while having ATN gets me through and I remind myself if I could do all that, then who knows what I can accomplish next! When my ATN first started I was a semester away from graduating law school. I didn't think I would be able to finish but I went back to school and did it. We had been planning a trip to Ireland for St Patricks day with my friends and they insisted that they wouldn't go if I didn't, I was so hesitant to go but then I thought either way I'm going to have pain may as well enjoy life. So I did and had an absolute blast. When I look back I'm amazed and it makes me smile to remember all the fun I had,I'm sure I was in some pain but I really only remember the good, trying Irish coffee, going to the Guinness factory and even accidentally finding ourselves in the middle of the parade and ending up on TV!
I am quite an emotional and pessimistic person but if anything, having ATN often forces me to appreciate the good things in life more, to look at the things that matter and to hope for the best. I almost lost my sister who is like my other half in life to a mental illness 2 years ago. I took her halfway around the world to get the best treatment. We suffered and cried and worked hard and now she's doing so well. I would take on ATN any day if it means she's happy and healthy. Anyway lets try to keep this positive attitude going. When someone feels down, a kind word or support can make all the difference.
tamzee said:
When I look back I'm amazed and it makes me smile to remember all the fun I had,I'm sure I was in some pain but I really only remember the good.
Exactly! This is really true.
Jamie, thanks for the enormous compliment!
I am not at all a therapist, but I have lived through much worse than TN, which I guess puts things in perspective. This also forced me to take a look at how I live my life and how I want to live it. I went into therapy for the other things, but the seeds were sewn long ago by my wonderful father and his wife, and many long, demanding (but in a positive sense) conversations around the kitchen table, that forced me to face facts. And wouldn’t you know it: I emerged as a person with confidence, knowing that I am doing well in life and can take what it throws at me.
And in the end, I rest in the fact that there is nothing more I can do than to try my best. When it comes to pain, I try my best, and my best is to take my meds, relax, distract myself and enjoy my life.
I too suffer from ATN. It has been 3.5 long years. Sometimes it feels like my life without pain never existed. One thing that helps me endure the bad days is to look back in pride on what I have achieved DESPITE this disability. I was in the ER and hospital for 6 days a few weeks ago due to a severe pain flare (ATN-chronic migraine combo for me) and ended up getting DHE therapy to break the pain cycle. Those days of delusional pain are a blur, but guess what? I made it, with the help of wonderful doctors, nurses and drugs. I am tougher than I ever thought I was. I am told I am an example of strength to many. Secretly I laugh inside because some of the time I feel like a total mess, but I take the positive comments of others, put them on a shelf like a trophy, and admire them. In the midst of all of the negative that comes along with ATN, I pray that each day I will find something positive to come out of it. Funny thing. I am more grateful for the blessings in my life than ever before. I guess it takes losing something precious like your health to make you REALLY see all of the good things in your life. I still don't give up hope for a miracle. I find out this week if I am approved for a trial peripheral nerve stimulator. Maybe I will be like the gal who commented earlier and find some relief. Love to you.
You have the will, gurl! 
Mine started as TN2 and has turned into geniculate neuralgia, with Type II pain. I’m now on carbemazepine and neurontin, and I’m generally either loopy or in pain. I have ABSOLUTELY no energy, and I think I’m getting depressed. And I’m right with you. Where had my life gone? Is this it forever? I am really hoping for a remission, so I can live normally for a while. Ugh. Sorry to be a Debbie Downer.
Hi Jamie,
I totally understand your plea, I was diagnose with TN several years ago and then only last week I was told its ATN and that I shouldn't be experiencing pain on all three branches on both sides.
This so called MaxillofaciaI I saw last week got more confused when I explained to him that I also suffer the short sharp electric shocks of TN1, he look at me with disbelieve, he even gave a little giggle.
I wanted to slap him of his blooming chair, he would ask me a question but then not listen, it was the worst health care appointment I have ever had in the 8 years living with TN.
Luv and best wishes to you...
I have bilateral pain along all three branches, too. A survey on this group showed many more people have it on both sides than is generally acknowledged. I've also experienced the shocks of classic TN, an episode that lasted about a week, ending after a dentist corrected the bite between an upper and lower molar. (The ache in both teeth and the shocks to that side of the head disappeared at the same time -- hours after the correction. I was truly surprised, so no placebo effect here.) The ATN remains as ever.
I feel your pain I am here im only 32 but my TN2 started at 30 my life has been different since then. So lets do something like the ice bucket challenge lets figure out a way to voice this disease! Im sorry if you are still in pain the anti-sez meds did not work for me at all actually made me have worse pain. Mine started all in my teeth..following a lot of unneeded dentist work 5 teeth I have lost. So hard for me to rehash it all to someone whenever I need my meds of nortriptyline 75 mgs a day. for them to understand without this pill I will be in severe pains in my teeth crushing pain to my skull feeling like I have been beaten by a club in the head...In desperation at one point I wrote dr phil and dr oz on facebook never got a reply sadly. Yes something needs to be done. The funny part is I had a MRI scan showed compressions on both sides ...thought I would be happy to hear this news but I wasn't because brain surgery isn't something im willing to risk at this point esp since I don't have typical symptoms. But yes hard to read ppl having a fix because all we want is an out very hard to live with you are not alone!
Jamie -
Just to clarify. I've had the ATN for a long time. The shocks were, according to my dentist (someone filling in for my regular dentist) said there was a connection between the toothaches I came into to see him about did not come from some problem with the teeth per se. He called it TN. I described the experience in detail, and he said the bite could be acting as a trigger for the head pain. He fixed the bite (taking about 10 minutes of painless grinding) and I walked off, thinking he was nuts. Later that day, I notice thru the fog of my ATN that the shocks stopped and the toothaches were gone -- never to appear again since then. ATN, for me, means no talk of shocks, triggers, or breakthru pain. It's always there.I've told this story before on the forum and so far no one reports a similar experience. I don't know why.