Bilateral Atypical Facial Pain (Almost identicle)

Hello Everyone,

My name is Joe and I am 28 years old. I have been dealing with facial pain since November of 2009 that started above my eyes. Eveytime I spoke or breathed it would increase my pain. I went to a GP and they performed a CA Scan and blood work that showed up negative. I was taking 75mb of Effexor for 5 years due to anxiety/depression. During this time I was under a lot of stress but nothng out of norm. I decided to deal with the pain because it wasn't enough to cause a significant impact on my life. My wife was pregnant at the time so we both were real excited to be starting a family. On March 31st my beutiful daughter was born and I was so excited but by this time the pain had migrated to my cheecks and upper/lower jaw. Every morning I woke up my face would be aching and burning. I decided that I had TMJ so I came off the Effexor since bruxism is a known side effect. Well that did not resolve the issue as I saw 2 TMJ specialist and a Chirpractor with no luck. I continued to deal with the pain for a about 6 months and then it migrated into my left ear. During this time the muscles that control the ear drum began to spasm to external noises including my own voice. I saw an ENT specialist and they said there is nothing wrong with my ears and that it's all neurlogical. This is when I hit rock bottom and because depressed. I experienced my first panic attack and was prescribed Xanax until I could speak to my Psychiatrist. I took one Xanax and every single pain and ear issue disappeared. My wife and I went out for dinner with our little one and for the first time since her birth I had no pain. I'm sorry I'm crying no..... Unfortunatly I have not had the same results since then. Not even close. It was like as if my body shut down my nervous system in my face and everything was healed. Well I ate up the 3 hours of no pain and will never forget what it felt like to play with my daughter and be emotionally and physically free of pain. Now whenever I attempt to take an anti-depressant it seems to make my symptoms worse. They tried Paxil and my nasal passage completely closed up and the headaches from the compression is unbearable. I have also tried Remeron, Cymbalta, Lexapro and Effexor again but all serotonogenic medications seem to make things worse. The only thing I can take is Ativan, Xanax or Klonipin which I don't like because of their addictive nature. I also take one Vicadin a day but again, another addictive med. I got up to 900mg of of Neurotin but did not really notice a difference. Mind you, I only tried this for a week because I felt it was effecting my thought process too much. I've had an MRI/MRA, ton's of blood work lymes, heavy metals etc but everything has come back negative. I'm just curious what you all think I should do next. I'm here at Myrtle Beach in SC receiving laser therapy but unfortunately it's not working. Remarkably all the patients that have typical trigeminal neuralgia seem to be improving quite well. Prior to our treatments we get to speak to other patients. There's a guy who has been on the highest dosage of Tegretol, Perkoset and daily Morphine. He has lost 3/4's of his hair and much hearing from the Tegretol and was about throw in the towel. After only 4 days of therapy he says he feels the best he has ever felt since all this started and it's only getting better. He has 9 more days of therapy. I have run into 4 other patients and not one that I have run into have said they are not getting better. All of them said they were on their last rope (numerous medication) but are cutting back. I had to try because they said they treated Atypical Trigemnal Neuralgia. Looking forward to better days.

God Bless,

Joe

I forgot to mention when I have my flareups, I feel more pain and pressure in all 3 branches of my trigeminal nerve. My pain is worse when speaking/breathing. I can feel pressure in my forehead, nose cheeks, jaw and upper and lower teeth. I can’t seem to find a trigger for the flareups but anxiety exacerbates my condition. I also always have feeling of tension/numbness in the back of left throat. I have had this ever since the ear thing kicked in. Had to take another 1mg of Ativan:(

You asked for advice on what to do next.

One thing that might make sense would be to ask the physicians who are treating you at LMC, for medical literature reports which demonstrate under controlled conditions that their technique actually works. What is the "mechanism" of pain relief supposed to be? How does it work? I've been unable to find a thing that looks authoritative, and the LMC website offers nothing beyond individual patient testimonials -- the least reliable form of evidence. The Laseacure technique has been certified "safe" by the FDA. Low energy laser illumination of your neck or skull probably won't hurt you. But FDA has made no finding at all on whether it is effective. And it is highly expensive to do without insurance.

Apart from LMC issues -- 900 mg of Neurontin is a relatively low dose. I suggest that you go back to your neurologist and get a schedule for tapering up. Though you might initially have cognitive or balance side effects, many patients report that Neurontin becomes better tolerated over time as dose levels in the bloodstream stabilize. Likewise, in the treatment of neuropathic pain such as you are experiencing in your face, the tricyclic antidepressants such as Amitriptyline or Nortriptyline tend to offer greater relief than the SSRIs. The opioid drugs also have a legitimate role to play for many patients -- and although they do create dependency in chronic pain patients, they generally do NOT create the addictive cravings reported by recreational users.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

Joe, I was gonna suggest Nortriptyline too. If the Effexor stops working for me, that would be one that I am interested in trying. But right now I have relief with it. I started it in August of this year. I have a lot of the same issues that you have and the Effexor has been the most effective for me so far. The two that Red have mentioned are known to be helpful with ATN. You should ask your neurologist what he thinks about them. Best of luck, hope you have pain free days soon! Peace, Min

Dear Joe,

I too have Bilateral Atypical Trigeminal Neuralgia. I've been on 2,700 mg of Neurontin/Gabapentin daily for about a year (have also heard of other members who have been on higher doeses) and have found a lot of relief. Being on it for a week is useless because it takes time to build up in your system. I also take Hydrocodone for pain, Cymbalta for depression and Vicodin for muscle relaxation. Yes, I have flare-ups, but the combination of medications I'm taking have made a huge difference in my quality of life.

Please don't confuse the difference between addiction and dependency. People with chronic intractible pain don't get "high" on pain medications and there's a lot of confusion about addiction. You wouldn't be taking pain meds for recreational use - there's a big difference. I'm on a very high dose of Hydrocodone and don't consider myself "addicted". I don't get high or buzzed or any cravings from the pain meds - just relief. It sounds like you need to see a neurologist who understands Atypical TN and get on some medications to control your pain.

I agree with Red and Jackie about the Laser treatments. We've done a lot of research on the Laser treatments and have found no medical studies or medical proof that it works. I hope you get relief, but we've heard of many Laser patients who have received no relief and it's a very expensive process. Personal testimonials are really of no value because there's no way of knowing if a real patient wrote it or if an employee of the Laser Center wrote it. You don't even know if the other "patients" you've spoken with are real or employees of the Center. It''s a very slippery slope. Please be aware that there's no medical evidence that holding a light source to your neck or skull is a "cure" or a scam. We've had many employees of the Laser Center joining our group pretending to be Trigeminal Neuralgia patients, only to try to solicit new patients for their treatments.

Please keep us informed of your progress and know that we are here for information or support, but we know at this time that there is no "cure" for Atypicals. The MVD surgery is not recommended by informed neurosurgeons for Atypicals as it is for Type I patients. I've had two MVD surgical evaluations and both neurosurgons refused to do the surgery because according to them (following the progress of former Atypical MVD patients) it can do nothing, it can work for a short time or most importantly - it can make the pain worse. I'm very glad I didn't have the surgery and am able to manage the pain on medications. Yes, there can be side effects, but for me the relief far out-weighs the side effects.

Good Luck and know that we're here to help and support each other.

Gloria E

Administrator

Living with TN

Ok so this morning I work up and it was the best 4 hours since January. My pain was literally a 1 out of 10. I couldn't believe it! My ear was still problematic with the fluttering but my pain was so little I was rejoicing. I have had pain for 2 years next month and I felt like I finally had a glimpse of what it would be like to have little pain. It was weird because I could feel a flare up begin and then settle right back down. Then my left facial cheek started to spasm. Good signs. I'll keep everyone posted about my progress. Unfortunately the pain is back full force so it's back to the vicadins. Hopefully this is a sign of a future to come. By the way, everyone I have spoke to at the LMC has been getting relief. Everybody is different. Here is to hope for a better future.

God Speed,

Joe

Excellent advice Gloria! You have told me in the time it took me to read your information more than any doctor or neurologist I've seen has been able to tell me.

Sincerely, Thank You,

Jack

Gloria E. said:

Dear Joe,

I too have Bilateral Atypical Trigeminal Neuralgia. I've been on 2,700 mg of Neurontin/Gabapentin daily for about a year (have also heard of other members who have been on higher doeses) and have found a lot of relief. Being on it for a week is useless because it takes time to build up in your system. I also take Hydrocodone for pain, Cymbalta for depression and Vicodin for muscle relaxation. Yes, I have flare-ups, but the combination of medications I'm taking have made a huge difference in my quality of life.

Please don't confuse the difference between addiction and dependency. People with chronic intractible pain don't get "high" on pain medications and there's a lot of confusion about addiction. You wouldn't be taking pain meds for recreational use - there's a big difference. I'm on a very high dose of Hydrocodone and don't consider myself "addicted". I don't get high or buzzed or any cravings from the pain meds - just relief. It sounds like you need to see a neurologist who understands Atypical TN and get on some medications to control your pain.

I agree with Red and Jackie about the Laser treatments. We've done a lot of research on the Laser treatments and have found no medical studies or medical proof that it works. I hope you get relief, but we've heard of many Laser patients who have received no relief and it's a very expensive process. Personal testimonials are really of no value because there's no way of knowing if a real patient wrote it or if an employee of the Laser Center wrote it. You don't even know if the other "patients" you've spoken with are real or employees of the Center. It''s a very slippery slope. Please be aware that there's no medical evidence that holding a light source to your neck or skull is a "cure" or a scam. We've had many employees of the Laser Center joining our group pretending to be Trigeminal Neuralgia patients, only to try to solicit new patients for their treatments.

Please keep us informed of your progress and know that we are here for information or support, but we know at this time that there is no "cure" for Atypicals. The MVD surgery is not recommended by informed neurosurgeons for Atypicals as it is for Type I patients. I've had two MVD surgical evaluations and both neurosurgons refused to do the surgery because according to them (following the progress of former Atypical MVD patients) it can do nothing, it can work for a short time or most importantly - it can make the pain worse. I'm very glad I didn't have the surgery and am able to manage the pain on medications. Yes, there can be side effects, but for me the relief far out-weighs the side effects.

Good Luck and know that we're here to help and support each other.

Gloria E

Administrator

Living with TN