We are patients living with Trigeminal Neuralgia, here for your support.

New Doctor - New Diagnosis!!!

Okay, went to a new neurologist today and he completely contradicted the other neurologists and neurosurgeons that I have seen. He said I did not have TN because my pain was also in my ear and the right side of the head - not just in my right cheek. I also told him that I have been having (in the last couple of weeks), strange, intense headaches in the top and back of my skull. He said ATN was just a term that "other" doctors used when they have no idea how to treat you and basically, it means, there is no treatment for that condition. He felt I had more going on with my pain and gave me 2 nerve blocks in the back of my head, behind each ear, into the ocipital nerve. He said that if these nerve blocks prevented the pain in my cheek, upper right jaw, that it proved that I did not have TN. He pretty much refused to acknowledge that a condition called ATN exists. He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve! I am totally confused, frustrated and numb all over the back of my head. Also, had to pay for the nerve blocks right then because my insurance doesn't cover them. I am sooooo tired of seeing different doctors. Geez. Why do all these doctors have different diagnoses? This doctor was a referrel from the neurosurgeon that confirmed that my pain was ATN!!

Tags: ATN, block, nerve, neurologist, ocipital

0 members like this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Min on February 10, 2012 at 3:23pm

For REALZ Judith....for Reals!!

Peace, Min

▶ Reply

Permalink Reply by D McGinnis on February 10, 2012 at 3:24pm

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.

▶ Reply

Permalink Reply by judith on March 20, 2012 at 6:01am

Richard A. "Red" Lawhern said:

Our "Find a Doctor" listing has positive recommendations for the following doctors and facilities in Colorado:

Denver:

    Rocky Mountain Gamma Knife Center - St. Anthony's Hospital

      Dr. Prall

Fort Collins

     Dr.Sisson

Littleton:

    South Denver Neuro:

        Dr. Adair Prall

         www.southdenverneuro.com

     University of Colorado (Boulder?)

        Dr. Breeze

Regards, Red

▶ Reply

Permalink Reply by typqueen on March 20, 2012 at 6:13am

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.

▶ Reply

Permalink Reply by jolie on March 20, 2012 at 2:27pm

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.

▶ Reply

Permalink Reply by typqueen on March 20, 2012 at 2:34pm

Jolie, I am so sorry. Doctors can be such idiots. All we want is a reason, an answer so we can feel better and they make it worse. I'm so sorry you are going through this. How long have you had TN? I will be praying for you.

▶ Reply

Permalink Reply by jolie on March 20, 2012 at 2:53pm

I have only had mine for 6 months, which already seems like a fricking lifetime. I spend most of my time in bed and unfortuantely I cannot sleep through it b/c the pain is almost always at a 10 with flares that I would put at a 20. Unfortunately I am allergic to opiods so there is no pain relief for me unless I go back to the tegratol which causes severe problems but someitmes I have no choice, I am hoping to find something for relief or at least to tone it down with this next doc.

▶ Reply

Permalink Reply by typqueen on March 20, 2012 at 2:57pm

Oh that's awful. I'm so sorry you can't take any medications. I am only about 6 weeks into mine, and it feels like a lifetime. I am in my second week of Neurontin, but I can take Percocet too. I can't take antiinflammatories though. Is your family doctor supportive of you?

▶ Reply

Permalink Reply by Richard A. "Red" Lawhern on March 20, 2012 at 3:48pm

Has any doctor tried you on Amitriptyline or Nortriptyline? Baclofen? Lyrica? Particularly with ATN, there are other alternatives to Tegretol.

Regards, Red

▶ Reply

Permalink Reply by typqueen on March 20, 2012 at 4:01pm

That's good to know Richard. I will keep that in mind.

▶ Reply

Permalink Reply by judith on March 21, 2012 at 5:56am

I have been taking generic for Keppra for 2 mos. It has helped more than anything else. Although after a month you have to go up on dosage because pain starts coming back. I am now taking 750 3x day and lately I have started having pain in my teeth again. I find the only thing to do is give into the meds and sleep. Sleep is the only thing that helps me. But I would like to have a life again and not be a zombie. Judith