My neuro is Dr. David Racher, of Miami Florida. I have ATN. He is kind, VERY intelligent and understanding. He tried several medications and was very patient. My pain was outrageous. I am now on an oral med and a compounded cream. I’m getting very good improvement. I was so VERY frightened and now I see clear HOPE. An excellent, superb doctor!!!
Congrats!! That’s great news! I live in Palm Beah, I will keep his name handy. Wishing you continued success!
Tiffanie
I live in the Keys and saw Dr.Racher, also, well over a year ago. I was dealing with type 1 TN and the low dose of Lyrica a local neurosurgeon prescribed for me was doing very little. Once the Lyrica dosage was increased to reach a therapeutic level, the severity and frequency of my "events" improved. I was pleased with Dr.Racher's sincere interest in my welfare. A few months later, I had an MVD at Johns Hopkins by Dr.Ben Carson and here I am, one year later, pain free and off all meds.
I am happy to hear that you see clear HOPE. Let us all know how you are doing.
Is the oral medicine similar to a mouthwash? Does it take the pain away with the addition of the cream?
Misunderstanding. I take regular RX medication (tablets) by mouth.
The medication is called Desipramine. I take a low dosage. I also rub a compounded cream on the side of my face with the pain.
(No mouthwash or anything like that)
I use the cream often; four or five times a day
How were you diagnosed with ATN? I Ilive in Boynton Beach and have been told I have nueropathic pain ,TMD, Atypical face pain or possibly ATN. My nuero told me I might want to go to the University in Gainesville facial pain clinic since he treats so many different things and is not sure what my diagnosis is. It is a long way from my home but I would be willing to go there if I knew it was the right place to get a diagnosis. It is so frustrating to have the bad pain and not know that is wrong. There are a lot of nueros that say they treat TN but I am not sure what is wrong with me. i have been dealing with this for a year and a half and on different meds but nothing helps. Do you have anyone to recommend that can diagnose what is wrong with me? My pain seems to be getting worse and I am getting desperate to find an answer. Any help you can give me will be greatly appreciated.
Thanks,
Gizmoq
Gizmoq
I had several dental procedures prior to having my facial pain. I went to the dentist originally for a simple procedure and had no pain whatsoever. She had problems, which led to other problems. Eventually, I had pain. So…I kept on going to other dental professionals trying to fix the pain…confused, and thinking this was a dental issue. The pain kept on worsening and then it got VERY bad and one dentist convinced me to pull the tooth. Since it was nerve pain, this did not help. I saw an oral surgeon, who was also an MD. He strongly hinted to me that I had ATN, likely CAUSED by the dental work, and I needed to see a neuro right away. I saw the neuro (the one i mentioned in the top post here) and he listened to the very very long story of how I had no pain and how with each weird dental visit, the pain worsened, until it got to the point that it was excruciating and I would spend many hours laying on the couch crying daily. He dx’d ATN after doing two MRI’s and an MRA. We also tried many different meds. Some didnt work, some helped a little, but i had too many side effects. But the routine I’m on now has been helpful. Things aren’t perfect, but I’m clearly in a better place and I am very grateful. It is important to find an intelligent and CARING neuro!!! Whether you go to this neuro mentioned above in Miami, or another one, make sure you get some recommendation, that they are familiar with nerve pain, that they are intelligent and that they are a caring individual. This pain, as you know, is horrible and frightening. Wishing you well.
Nomad, I replied several days ago but it didn't go through. I also requested you for my friend but haven't heard anything. I probably did it wrong. Please let me know if you get this. I have had an MRI and MRA and they were normal. I was wondering what other ways they can tell if it is ATN because nobody seems to be sure what it is. I would consider gamma knife but the nuero said don't do it unless you are sure it is TN. It seems that some nueros are not too experienced with TN and I'm not sure how to find one that knows what they are doing. When you call their office they all say they treat it but I need to have somneone that knows how to diadnose it. Did you have similar experience.?
Nomad said:
Gizmoq
I had several dental procedures prior to having my facial pain. I went to the dentist originally for a simple procedure and had no pain whatsoever. She had problems, which led to other problems. Eventually, I had pain. So...I kept on going to other dental professionals trying to fix the pain....confused, and thinking this was a dental issue. The pain kept on worsening and then it got VERY bad and one dentist convinced me to pull the tooth. Since it was nerve pain, this did not help. I saw an oral surgeon, who was also an MD. He strongly hinted to me that I had ATN, likely CAUSED by the dental work, and I needed to see a neuro right away. I saw the neuro (the one i mentioned in the top post here) and he listened to the very very long story of how I had no pain and how with each weird dental visit, the pain worsened, until it got to the point that it was excruciating and I would spend many hours laying on the couch crying daily. He dx'd ATN after doing two MRI's and an MRA. We also tried many different meds. Some didnt work, some helped a little, but i had too many side effects. But the routine I'm on now has been helpful. Things aren't perfect, but I'm clearly in a better place and I am very grateful. It is important to find an intelligent and CARING neuro!!!!!! Whether you go to this neuro mentioned above in Miami, or another one, make sure you get some recommendation, that they are familiar with nerve pain, that they are intelligent and that they are a caring individual. This pain, as you know, is horrible and frightening. Wishing you well.
Gizmo, I’m having trouble with this site. Can you see this? My neuro has experience with TN and ATN, but I don’t think an excessive amount of experience.Another neuro suggested him, perhaps because of his intelligence and calm demeanor and that he had at least some experience with this. He simply listened long and hard to my story, symptoms, reactions to meds plus test results and made a diagnosis.
Nomad, I received your response. I have an appointment with a nuerologist that is supposed to have experience with TN. It is not until the end of the month. I hope it works out. Will keep you advised on what happens. Gizmo
Nomad said:
Gizmo, I'm having trouble with this site. Can you see this? My neuro has experience with TN and ATN, but I don't think an excessive amount of experience.Another neuro suggested him, perhaps because of his intelligence and calm demeanor and that he had at least some experience with this. He simply listened long and hard to my story, symptoms, reactions to meds plus test results and made a diagnosis.