I also have ATN and doctors do not want to acknowledge it because they do not know what to do for it, with TN they can do the comp. surg and it may help, with ATN it could make it worse therefore lowering their success rate.
I have been on may meds and right now Keppra, tegretol,oxycondone and clonazepam along with something for nausea have been helping me for the last 2 mos. Have to be very careful because it wrecks your balance. It seems as if someone could figure this disease out as it is called the suicide disease. best to you. judith
D; I have been through the same parade of 'expert' doctors. I agree - drop him, but let your neurosurgeon who sent you know what a jerk this guy was. This feedback could save someone else the frustration...
After I do the followup visit tommorow, I will see if he still insists that I do not have ATN. I think my pain that is in the right cheek/tooth area that continued even with the block, is proof enough that there is more going on than a headache. I did have to take melatonin twice today to deal with the severe headache pain that has continued after the numbness wore off. I was amazed that the melatonin worked and extremely happy that it did. Wish there was something like it for the cheek pain as that is driving me crazy right now. The lyrica is not helping at all. My husband and I are already researching neurologists with the university hospital here in Denver as our next course of action. Thanks Dale for your support. I agree. I need to let the neurosurgeon know that this neurologist has a bad bedside manner - to say the least.
Red - unfortunately, Dr Prall was the neurosurgeon who recommended and referred me to my new nuerologist. When I asked Dr Prall to add Amitriptelene to my meds, he said that he was not up on all the drug monitoring and said I should see this neurologist who could better monitor my medications. I must be conveying my pain incorrectly or something.
In your place, I wouldn't assume that you aren't conveying your pain incorrectly. However, if you'd like me to look over your shoulder and see what you're saying, then send me a private message here on Living With TN, describing your pain as you would with a physician. I'll give you feedback if it seems pertinent.
Red - I have no problem voicing my pain here at living with TN. It is the only place that I can find out what is going on and learn what is helping other people with the same affliction. I used to believe doctors, dentists etc were "Gods" and knew everything. I now know that they are human and also in business to make money. I just hate it that they have done it at my expense at times. Anyway, one thing that I know I have expressed wrong so far is that I have said my pain was constant. No, it isn't and it took keeping a minute by minute account of my pain to discover that. Constant to me meant pain occuring repeatedly for hours. Constant to the doctors means unrelenting and not "flashing". When the doctors ask me if I have electrical shock like pains, I say no. I have never been shocked in the face, so I don't know how that feels. I describe my pain as "bee stings", like a thousand bees are stinging me in my cheek, lip and tooth. The biggest problem so far has been expressing how the pain changes so much and the location changes too. I have eyes that burn and tear intermittently. I have extreme pain on the side of my temple at times - same location, right side - as my cheek pain. Sometimes the cheek pain is boring and throbbing in nature. Starting Jan 20th, I was having severe pains - very deep - inside the back of my head and the top of my head. These too were sporadic and intense, lasting up to 60 seconds. I described them as a feeling that my brain was exploding from the inside. I have also had intense pains on the right side of my head, like someone with a hammer was pounding away at the side of my head. All this has been said to the doctors that I have seen. Pain keeps changing in intensity and location for me - on a daily basis. I don't know what else to tell them.
Sorry, I wrote "correctly" when I meant "incorrectly". From years of reading and talking to patients, I would say that you have symptoms that seem to characterize a mixture of Type I (classic or typical) and Type II (atypical) Trigeminal Neuralgia. If your pain emerged after a dental procedure or in association with blunt force trauma, then many physicians would say that you have "trigeminal neuropathic pain", which means in practical terms that you aren't as a good candidate for rhizotomy and may experience less than the best outcomes from MVD or Gamma Knife surgery. Likewise, the burning and tearing might suggest that one component of your pain could be SUNCT headaches.
Well - hoping what you have just said, is what the neurologist will say tommorow too. However, knowing that I am not a good candidate for MVD, is discouraging as I have been pretty much ready to have it done now. I am ready for even a month of no pain. It is the likelihood that my pain could get worse, that keeps me from scheduling the surgery. I could not take worse pain right now. Thanks for all your help. Hope I don't start another thread tommorow that is titled: 2nd New Diagnosis from Same Doctor! Changing Doctors Yet Again!
you know you can go to different doctors and get different diagnosis....luckily I have been diagnosed with TN and ATN by every one I have visited so that is not a problem for me...but I would ignore the last Dr you have seen...your symptoms sound like classic TN and ATN and if he refuses to acknowledge this then more fool him...and he really is someone you do not wish to see again...
I would go back to the Nurosurgeon who originally diagnosed you with ATN and see if he can reccomend another Dr who actually beleives this condition exists. Im sure if he had TN or ATN for a week he would certainly beleive in it...good luck
i so much understand you and the doctor that said he doesn't "belived" ATN (sorry for my lousy english).
i also think ATN is a general name for saying "we don't really know what makes a healthy person one day get these horrible pains".
that's why i'm not "relaxed" getting a ATN diagnosa. i WAS a perfectly healthy guy. did a simple dental work - and lost my life to this pain . something happened in my mouth - and i must understand what.
i wierd about him ignoring the blood vessle. for times i prayed they would found a blood vessel at my MRI, or even a tumor they could remove. it's wierd he ignored that.
i've done an injection this week to the gloss. nerve (after several other injection) - didn't help.
did it help you ? i think it's at least good that you doctor is trying to find the cause.
cause accepting it as it is is not an option for me.
the ATN diagnosis - what does it mean ? infection ? inflammation of the nerve ? presseure of the nerve ? that it's all 'in our minds" ? what ? (i don't belive things without explanation). maybe if it could go away over time.. .we would take meds to ease the peroid inbetween... maybe
I was wondering if anyone had ever had an EEG while having an attack of ATN. Many years ago I had an EEG for balance problems and it showed transient and irradic brain wave patterns When I told my brain doc this she just poo poo it. As a child I had blunt force trama to back of my head but now I am 68 and they say there is no relation. There has to a reason for Atypical. I would like to find a doc. who would be willing to discuss all things. best to you
Judith, in quite a lot of cases there really is no evident cause-and-effect relationship between ATN and any other event of condition in daily life. I know that can be a bit crazy-making for some folks. But that's just the way it is. Medical science still contains a lot of judgment and art.
Thanks Red, I really know and accept this most of the time and if not for this Web site and people like you I think I would give up sometimes. But I have so much love from my family and friends it would be selfish to just give up.
I find myself getting more agressive with my doctor about my meds and stopped worrying about whether or not she thinks I am a junkie. I think that is what we all have to do. best to all. Judith
Gee, hope I can address some of the comments here. Didn't realize this would touch a nerve (pun intended) with so many other people. First, I had head trauma injury when I was young to my right front forehead. Does this have any correlation to my present condition - I have no idea. Also, this "condition" started spontaneously about 2 weeks after a filling in one of my right upper teeth. The shot in the roof of my mouth for that filling was particularly painful. Correlation? I have no idea. Is all my pain in my right upper cheek region? - absolutely. As for the new doctor, the appointment this morning was totally different then what I experienced 2 days ago. (He still needs to "listen" better) However, finally, I have a doctor that is willing to work with me on trying to control the level of my pain with different combos of meds. He definitely feels that I have 2 disorders going on. One is a headache thing - he said like SUNCT, but not exactly the same. (He did not give me a name for this). Note here, he seems to be a very very busy neuro, arriving 30 min late for my appt because of emegency across town at a different hospital. He apologized profusely for making me wait!! Anyway, he felt that I definitely had TN also. So, he has now put me on Oxcarbazepine, Verapamil for headache, and Temazepam to help with sleeping because the pain level does not allow me to sleep. He said he was going to put me on a tricyclic antidepressant also, but just noticed that he didn't prescribe that. Guess I will be calling him back. He did state that I had to accept that I would be on medication for a very long time and I had to accept that I had TN. He did not state whether he thought my TN was 1 or 2.
As far as the onset of the extreme head pain, this just started (sponteneously again) on Jan 20th. My MRI was last year so no correlation there. The head pain was actually worse at times than the TN pain. I was sure I had an aneurysm (spelling?) and it was exploding deep in my brain - back of my head or top of my head. THAT pain scared the you know what out of me. That pains stopped entirely within 12 hours of the lidocaine block.
Oh, please drop this doctor like a hot potato! I don't have the experience many people on here do so far, because I'm new to TN, but I do know that my doctors have both acknowledged the TN part of my disorder, and the one neurologist who didn't, he isn't my doctor anymore. I think the pain is clearly evident when you have it, and if they can't figure that out, they have no business practicing medicine. My own family doc is the one who said neuralgia first. I certainly hope you can find a competent doctor who can help you and treat your disease. We need help from our physicians. They need to work for us, not against us. Keep looking until you find a doctor you are comfortable with who will work with you. Keep us posted.
D, I know what you are going through, I just seen a neurosurgeon last week after consulting with three different neuros who all dx me with ATN, which by the way sounds just like yours. I have severe pain and pressure in my both ears, pain down the right side of my throat across my right cheek and pressure behind the right eye and above the right eye as well as pain and intercranial pressure behind the ear down to the base of the skull where it meets the neck. I also have pain across the jaw bone on the bottom. My pain is constant and has responded to nothing other than tegratol, which unfortunately has caused serious side effects that leaves me unable to take it. Anyway, the neurosurgeon told me that I don not have ATN or TN, so I asked then what do I have ? He responded with I dont know, it seems as though you have some sort of unusaul facial pain, but this is not ATN or TN and so there is nosurgery or procedure that could be done or that would benefit me. When I asked what do I do he referred me to another neurologist which I will see next week. I cried for almost two days straight over this, I am so confused and do not know where to turn. i dont even know what to tell anyone when they ask what is wrong with me because I really do not have a good dx. Anyway, I wanted to let you know that I feel your frustration and fear, so you are not alone. I hope you get some answers soon. Oh I wanted to add one more thing here, about the amitripteline, alot and I mean alot of docs do not like to prescribe it b/c it has a very serious side effect that can cost you your life and that is that it can cause what is known as "long QT" which effects the heart and its rythmn, It can happen at any point during your therapy with it from the first pill to 5 years after taking it, and if it happens you will most likely not make it to a hospital in time to save your life. It also has the potential to raise your blood pressure very high and give you an irregular heart rythmn, so you need to be watched closely on this drug, which is why so many are very reluctant to give it out and would much rather prescribe the newer ones which so not have that side effect. Now with that being said, when you are in our kind of pain who the hell cares about that potential, just give it to me!!! And rightly so they should try you on it. I have been tried on it but unfortunately it did not work for my pain and caused me irregular heart rythmns so I was taken off it immediately. but it may work for you, so keep trying for it.