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Old 12-29-2009, 03:34 PM   #1
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Question Pain Management of Atypical Trigeminal Neuralgia

Hi all,

I was recently diagnosed with atypical trigeminal neuralgia. The pain is excruciating and constant. I have been misdiagnosed with migraines, cluster headaches and cephalgia for the past five years that the pain has been constant. I live with pain at a level 8 and am having a very difficult time coping. I can't tolerate many of the anticonvulsants and am interested in entering a pain management program. My old neurologist, who misdiagnosed me with cluster headaches, had me on vicoprofen which helped a lot. It didn't cure the shock-like pain but definitely helped the constant burning pain. I left him because he was unwilling to reconsider my diagnosis even though I wasn't responding to prophylactics. My 3rd neurologist correctly diagnosed me but I can't tolerate the Trileptal due to side effects. I am feeling so hopeless.

The only medication I have found to be helpful is opioids. Anticonvulsants affect my mood very negatively and I have a history of suicide in my family. I am going to see my PCP soon and am going to ask for a referral to a pain management clinic. Do you think that a multidisciplinary clinic will be able to help someone like me? Its worth noting that MVD and Gamma Ray surgeries aren't very effective for ATN and not at all for someone who's been suffering for pain for more than three years (I've been suffering for a total of ten, but only 5 constant as my classical TN morphed into ATN).

 
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Old 12-30-2009, 08:05 AM   #2
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Re: Pain Management of Atypical Trigeminal Neuralgia

I'm new to this posting thing, so I do not know if I posted correctly last night or not. But, take omega 3, DHA. It works. If I don't take it, my pain comes back really badly. I have the sharp pains in my left ear. On and off for 9 years. It may take a month or so for it to kick in. I just know what happens when I stop taking it. I always have it with me!

 
Old 12-30-2009, 12:33 PM   #3
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Re: Pain Management of Atypical Trigeminal Neuralgia

Dear Apple,
I am so sorry to hear about your pain. I, too was diagnosed with atypical trigem. I was told that with atypical it is very dangerous to try surgery because it usually makes the problem worse. So, do not go that route. I finally found a pain doctor and am treated with duragesic patches. It works great. I can not tell you how incredible it is to not have to deal with the pain on a day in, day out basis...I'm sure you can imagine, though.

I recommend you find a good pain doctor. I would also like to warn you about one med that they typically use with trigem patients. They use neurontin for this a lot...and it works pretty good in calming the nerves that are in pain down. However, they have a history of causing severe depression...it did with me. Oh, man...it was the worse feeling, there are no words to describe the depths of the depression that it caused. But, it goes away about a week after you stop taking it. And the depression side affect did not begin until I had used it for quite awhile. So, I would have to say it was worth taking...just stop if you get the depression.

But, definitely consult with a pain specialist...narcotics were the only thing that helped the situation. For me the patch is the best because it is a constant flow of pain med, so I have very little break through pain. I was able to return to work, again after the patch! Good Luck!

 
Old 12-30-2009, 04:28 PM   #4
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Re: Pain Management of Atypical Trigeminal Neuralgia

I agree that a good Pain Management physician in a reputable practice is the way to go. Sometimes your primary care, or neurologist if you have one, can provide a referral. It took me two tries to find "the" right pain management practice.
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Old 12-30-2009, 06:15 PM   #5
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Re: Pain Management of Atypical Trigeminal Neuralgia

Thanks for the advice guys. I have been pain-free... when I was on IV Dilaudid in the emergency room for internal bleeding (separate issue!). Opioids do not cure the pain but they make it more tolerable. I'm sure you know what I mean!

Lacy, thanks for the heads up on Neurontin... a family member committed suicide due to a combination of psych/neurological drugs and untreated pain. I too have suffered from suicidal thoughts on psych drugs. I refuse to take any drugs that will increase the risk of suicide, which unfortunately includes all the anticonvulsants.

Atlantagirl, I swear by fish oil. I take the nordic naturals 3-6 Omega formulations daily and it has really helped cut down on the electric shocks.

Do you recommend I come right out and ask my PCP for a referral to a pain management doctor? All 3 of the neurologists I have seen are very cold/reserved individuals. I really like my PCP and feel like we have a good relationship.

Last edited by AppleSTS9; 01-01-2010 at 07:45 AM.

 
Old 12-30-2009, 06:17 PM   #6
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Re: Pain Management of Atypical Trigeminal Neuralgia

Hi:
I have trigeminal neurolgia since I was assualted in 1988. I was knocked out for about 20 minutes and when I woke up I had a sharp stabbing pain in my left ear. It feels like someone is stabbing me in the ear with a ice pick. The pain is about a 8 on a scale of 1 -10. The put me on everything to help. Nothing much helped. The block the nerves in my trigimenal nerve cluster and the pain went away for 3 great hours. The could not block it for good because it would have taken feeling out of my throat and so on. The tried blocking single nerves but more than 1 is damaged. So, I have been on opiods 4 the last 18 years. Right now I am on MS contin (long lasting morphine). I take 100 mg 3 times a day and I take Morphine Sulfate Instant release (MSIR) 30 MG 2 TIMES A DAY 4 BREAKTHROUGH PAIN. The opiods help but I still have about a 4 level pain. It also makes it hard to handle my pain when I have surgeries or other pain. I am sorry I can't tell u that it will get better 4 u. Although I hear the gamma knife has helped some patients.
Constant pain in Jacksonville,
Patti

 
Old 01-02-2010, 08:34 PM   #7
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Re: Pain Management of Atypical Trigeminal Neuralgia

Patti,
That sucks...to have your pain given to you by someone attacking you just makes it that much worse. I didn't ask for my pain, but, I did willingly go under the knife for the sinus surgery that seemed to cause this pain. You were completely innocent and were hurt...that seems so much worse to me.

 
Old 01-03-2010, 12:00 PM   #8
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Re: Pain Management of Atypical Trigeminal Neuralgia

Quote:
Originally Posted by AppleSTS9 View Post
Hi all,

I was recently diagnosed with atypical trigeminal neuralgia. The pain is excruciating and constant. I have been misdiagnosed with migraines, cluster headaches and cephalgia for the past five years that the pain has been constant. I live with pain at a level 8 and am having a very difficult time coping. I can't tolerate many of the anticonvulsants and am interested in entering a pain management program. My old neurologist, who misdiagnosed me with cluster headaches, had me on vicoprofen which helped a lot. It didn't cure the shock-like pain but definitely helped the constant burning pain. I left him because he was unwilling to reconsider my diagnosis even though I wasn't responding to prophylactics. My 3rd neurologist correctly diagnosed me but I can't tolerate the Trileptal due to side effects. I am feeling so hopeless.

The only medication I have found to be helpful is opioids. Anticonvulsants affect my mood very negatively and I have a history of suicide in my family. I am going to see my PCP soon and am going to ask for a referral to a pain management clinic. Do you think that a multidisciplinary clinic will be able to help someone like me? Its worth noting that MVD and Gamma Ray surgeries aren't very effective for ATN and not at all for someone who's been suffering for pain for more than three years (I've been suffering for a total of ten, but only 5 constant as my classical TN morphed into ATN).

 
Old 01-03-2010, 12:02 PM   #9
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Re: Pain Management of Atypical Trigeminal Neuralgia

i am experiencing sever facial pain and numbness taking neurotin and not helping if you have gained any other options let me know

 
Old 01-03-2010, 12:05 PM   #10
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Re: Pain Management of Atypical Trigeminal Neuralgia

Quote:
Originally Posted by patti678 View Post
Hi:
I have trigeminal neurolgia since I was assualted in 1988. I was knocked out for about 20 minutes and when I woke up I had a sharp stabbing pain in my left ear. It feels like someone is stabbing me in the ear with a ice pick. The pain is about a 8 on a scale of 1 -10. The put me on everything to help. Nothing much helped. The block the nerves in my trigimenal nerve cluster and the pain went away for 3 great hours. The could not block it for good because it would have taken feeling out of my throat and so on. The tried blocking single nerves but more than 1 is damaged. So, I have been on opiods 4 the last 18 years. Right now I am on MS contin (long lasting morphine). I take 100 mg 3 times a day and I take Morphine Sulfate Instant release (MSIR) 30 MG 2 TIMES A DAY 4 BREAKTHROUGH PAIN. The opiods help but I still have about a 4 level pain. It also makes it hard to handle my pain when I have surgeries or other pain. I am sorry I can't tell u that it will get better 4 u. Although I hear the gamma knife has helped some patients.
Constant pain in Jacksonville,
Patti

 
Old 01-03-2010, 12:08 PM   #11
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Re: Pain Management of Atypical Trigeminal Neuralgia

i was hit on my left side of my face 10 years ago nowexperiencing severe facial pain AND numbness had cyberknife which only made my brian swell now on neurotin but not helping. any suggestions

 
Old 01-04-2010, 09:46 AM   #12
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Re: Pain Management of Atypical Trigeminal Neuralgia

What have you tried in the past (besides Neurontin)?

 
Old 01-04-2010, 01:39 PM   #13
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Re: Pain Management of Atypical Trigeminal Neuralgia

I did cyberknife 7 months ago. My recent MRI showed extensive swelling as a result. I can no longer feel the left side of my face and have severe numbness and burning. I have tried all vitamins.

 
Old 01-04-2010, 09:27 PM   #14
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Re: Pain Management of Atypical Trigeminal Neuralgia

I have heard of several people who have found relief with chiropractic. However, it must be a talented upper cervical chiropractor. Just a typical, every day chiropractor probably won't help as much as an upper cervical will.

It has worked wonders for me. I actually know a man who had planned to commit suicide because of the pain...he went to the chiropractor for his wife on the day that he had planned to take his life...he began to get some relief after one session.

It's worth a try!

 
Old 01-04-2010, 10:00 PM   #15
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Re: Pain Management of Atypical Trigeminal Neuralgia

A good chiropractor will carefully evaluate any x-rays, CT, MRI, etc. Recently somenoe posted here who went to a chiropractor and when he saw the extent and type of the problem he immediately said no chiropractor should treat her and she should be seen by a spine specialist only (Neurosurgeon and/or Orthopedic Spine Surgeon). So you want a chiropractor that will look at all those factors.
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

 
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