VERY Atypical Trigeminal Neuralgia Patient Needs a Doctor

General General TN & GPN (Old Site)
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Hello, everyone, I am Burning Man D (for Derek), and altho I joined your community a few months ago I only just now am able to begin using your collected knowledge and wisdom to help me with the battle I have been waging against the neuropathy in my face doctors have called Atypical Trigeminal Neuralgia.

MY MAIN PROBLEM IS I DESPERATELY NEED A DOCTOR/SURGEON WHO WILL OPERATE ON ME BECAUSE DRUG THERAPIES HAVE FAILED AND OPIATES NO LONGER HELP ME. PLEASE SEE BELOW FOR THE FULL SAD STORY.

I have been searching first for a diagnosis, then any effective treatment, for the last 24 years, without success. My case is difficult because my symptoms were so different from "normal" TN that every neurologist and neurosurgeon I talked to told me because they didn't understand my condition, or why it does not respond to any of the traditional medications for TN, they (and anyone else it was said or implied) were unwilling to perform surgery on me. My problematic symptoms are this:

1) Pain very like burning, tingling numbness and crushing pain is BILATERAL

2) The pain is CONSTANT, not intermittent.

3). Altho I have had 3-4 "jolts" of pain like "typical" TN in the last 10 years, I do NOT have these symptoms overlaid intense, intermittent stabbing pain of terrible intensity.

4) Because of all these, I do not fit into your websites given description of Atypical TN ...

5) ... but I also do not fit into any other category's defining symptoms, yet all doctors are agreed i have a kind of TN. And finally,

6). Every drug used to treat TN does not work on my condition, or it causes such extreme side-effects I cannot live with it. I have had (check my new member info if you like) MANY different kind of injections and treatments of the trigeminal nerve (the latest unsuccessful one being Radio Frequent Bombardment), and NOTHING has helped at all, except the CONSTANT application of ice-cold gel packs on my face ... and opiates, which no longer work well enough for me to continue using them. I went on opiates 7 years ago when I finally went to my pain doctor and told him "I never wanted to be on these drugs, but you have to give me something for the pain or I am going to kill myself because I've been in constant pain for 15 years and I can't take it anymore.

WHAT I WANT TO KNOW IS THIS: Am I missing something about what this condition is? Does this actually fit a kind of TN I am unaware of? More importantly, I ABSOLUTELY DESPERATELY NEED a doctor to whom I can have a serious discussion about surgical options. If you know ANYTHING about surgeries that could help me, please direct me to the info if it is on your site or can be seen through the web. I am kind of overwhelmed by all the info on this wonderful site, so ANY help would be GREATLY appreciated. Thank you and God bless,

Derek

Burning Man D

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What you describe is pretty close to me, and I have Bilateral Atypical Trigeminal Neuralgia. I do not experience the burning pain though, thankfully for me, sorry for you. I’m currently going through a flare-up, or breakthrough pain right now. But I have had luck with Baclofen combined with Gabepentin, and when a flare up strikes, normally a hydorcodone with a Valium seem to take the edge off. Unfortunately this time the hydorcodone and Valium aren’t helping. I’m currently trying to get in to my doctor to add Dilantin to my “cocktail” of meds, I have read a few accounts of Baclofen with Dilantin seems to help. I don’t know. We’re all different and meds effect us all differently.

I too have seen several neurologists and neurosurgeons who had basically said, sorry nothing we can do. And wanted to send me to pain management. Thankfully I found a primary doctor who is willing to take this journey with me. Unfortunately he is so backed up right now, it’s hard for me to get in to see him.

There is a doctor in Detroit who is supposed to be a rockstar, he’s on my short list, his name is Dr. Ben Casey. There’s another at the University of Chicago named Dr. Arnason, who’s on my short list also. And one more who’s name escapes me at this time.

I’m sorry you’re going through this, but you can get through this. It’s horrible to not have anybody understand what you’re going through. Dr Ben Casey worked on a book called striking back. From my understanding he is on the forefront of TN treatments. He’s 4 and a half hours from me, but I am seriously considering taking the trip.

Hope you find some answers.

Andy

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There is a description at

http://www.livingwithtn.org/page/striking-back

about "striking back" its a must read for everyone with TN or TN symptoms. If nothing else, it can help one deal with their disease from a better position and some empowerment.

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I have bilateral TN. My left side is a combination of TN/ATN and the right just TN. I have a wonderful surgeon in St. Louis who is very knowledgeable in this condition. I am a very complex case due to underlying medical issues as well. I can't put into words how amazing he and his practice have been! If you would like his info, please inbox me.

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Derek,

I have TN, although not as acute as yours. However, I had gone to a Facial Pain specialist (DDS) and he treated it with a topical compound that is applied to the gum inside the mouth. The pain subsides within fifteen minutes. This neuropathic compound consists of Gabepentin, Lidocaine and two other drugs that work in combination with the other two. It is mixed with a gel that is called oragel which is the delivery system. For some reason this therepy is not well known. I believe it can also be used with a patch. In any event, let me know if you feel that this could be of some value and I will forward info or you can do the research. The important thing is that it must be prescribed by someone who specializes in oraofacial pain. When I mentioned this to a Nurogogist he looked at me as if I was crazy.

Hang in there.

Ron

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News here, also in st louis and would appreciate name of you r doctor, how do I inbox
rblair said: you? Thanks!

I have bilateral TN. My left side is a combination of TN/ATN and the right just TN. I have a wonderful surgeon in St. Louis who is very knowledgeable in this condition. I am a very complex case due to underlying medical issues as well. I can't put into words how amazing he and his practice have been! If you would like his info, please inbox me.

7

I feel your pain and anger at this insane disease. I too have thought I can’t go on like this anymore. But I do have two amazing doctors in Georgia. One is my pain management dr who has worked diligently with me to find right combination of medications. I have tried the topical compound but it was applied to my face and it didn’t help me. But my pain management dr sent me to neurosurgeon at Emory university who specializes in TN and he said my only option at this point is a periphial nerve stimulator. It is helping some. I have an appointment to meet with my tech next week to work on reprogramming it to see if will work better. In my prayers!
Kim

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@flowerpower, here is his information:

https://m.mercy.net/doctor/justin-michael-sweeney-md?mobile_detect_caching_mobile&mobile_detect_caching_nottablet

That’s a direct link to his profile on the hospital website.

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I'm new to the community, but I see a doctor in Richmond, Virginia named Dr. Singh Sahni. Perhaps he can help you. I feel your frustration. I've been searching for the right treatment for over a year. I can't imagine this going on for decades. Bless you, sir. I hope you can find help!

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Ron can you please send me the info on your neuropathic compound? Thanks!

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Topical Medication to Treat Orofacial Neuropathic Pain

The Department of Diagnostic Sciences, Division of Orofacial Pain, University of Medicine and Dentistry of New Jersey, Newark, conducted a study to evaluate the effect of topical medications alone or in combination with systemic medications in the treatment of orofacial neuropathic pain conditions. A retrospective chart review was performed for 39 patients who were diagnosed with a neuropathic pain condition such as deafferentation pain, traumatic neuroma, or trigeminal or glossopharyngeal neuralgia, and were treated for orofacial neuropathic pain at the Orofacial Pain Clinic.

The review concluded that topical medication as single treatment or in combination with systemic medications can reduce orofacial neuropathic pain severity.<

“The topical medication can be ordered from a compounding pharmacy where it can be formulated to contain carbamazepine 4%, lidocaine 1%, ketoprofen 4%, ketamine 4%, and gabapentin 4%. Carbamazepine and gabapentin … act by suppressing paroxysmal discharges and reducing neuronal hyperexcitability. Lidocaine, which is a local anesthetic, acts by blocking sodium channels, preventing nerve depolarization.Ketoprofen has anti-inflammatory activity.Last, ketamine blocks N-methyl-D-aspartate (NMDA) receptors, whose hyperactivity contributes to maintenance of neuropathic pain.” The topical preparation should utilize penetration enhancers such as anhydrous gel base and bio-adhesive copolymers. These are used to carry the medication transdermally and transmucosally. “


Eileen said:

Ron can you please send me the info on your neuropathic compound? Thanks!
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Hello

I am so sorry you are going through so much pain. If you are willing and able you may want to get a consultation with Dr Levesque in Beverly Hills Ca. He is very knowledgeable. Look him up on the internet to see if he would be a possible course of action for you. Please continue to seek help...you will eventually find it