Introduction and Brief History

General General TN & GPN (Old Site)
1

Hi, my name is Robert and my wife is Brandie. We are not sure what she has but it is pretty constant bilateral facial pain. More of a bone crushing pain in the cheeks, nose, and teeth than an electric shock pain. She does have some sharp pain but that is controlled by 70mg of Amitriptyline -- any less than that and it comes back. The bone crushing pain cannot be controlled by anything and goes 7-9 for long unending periods of time most days. She is 29.

About 4 years ago she was put into a chemically induced menopause to stop her endometriosis after laparoscopic surgery. She went on microgestin without breaks for a cycle to keep it at bay.

Sometime around this time she started getting shooting pains on the right side of her face. It became so severe that she had to seek out help. She found the survey at OHSU (we are in Portland) and tracked down Dr. Burchiel. He decided she had TN and while he could not find a vessel or any issue in any MRI he performed an MVD shortly after diagnosing her. Well, no vessel could be found during the procedure so he scored the nerve. This gave her about 2-3 mos of pain relief.

The anti-convulsents at this point were the usual, neurontin, etc. They did not seem to help much with her pain.

Later Dr. Burchiel suggested radio frequency ablation. This didn't work at all and she had no numbing of her face afterwards leading her to feel that the surgery was not successful. An ENT later believed that her jaw had been pushed down on with such force that it was dislocated. Which is pretty painful.

More unsuccessful drugs and some time later the pain became bilateral and turned into more of a bone crushing pain than an electric shock pain. It also became more constant.

Dr. Burchiel then told her that she did not have TN that it was probably ATN, dismissed her as a patient and recommend she go to a pain clinic. BTW, various psychiatrists and psychologist believe that her pain is not psychogenic that there is no conversion. It does not move around or change. It is constant, bone crushing, feels like a broken face in the cheeks, nose, lower jaw and teeth -- sometimes forehead.

She then found a new neurologist and went through many more tests, drugs, etc. Nothing could be found and she went through a litany of anti-seizure meds with no real results. As the pain progressed to become more intense and frequent a year later we finally relented and went to a pain clinic.

At the pain clinic she gets peripheral nerve blocks in her cheeks and forehead and these actually work. They actually removed 99% of the pain. Unfortunately, they only last around 11 hours until the numbing agent wears off.

She has tried many other things -- acupuncture, peripheral pulse radio frequency ablation, atlas orthogonal, diet, nutrition, etc. Nothing really works. That we tried atlas orthogonal is saying a lot since we are scientific people and there is not a lot of science backing UCC. But we tried it even though it did not work.

Currently she is on 60mg of morphine ER and 70mg of amitryptiline. But she still has several days a week in constant 7-10 pain.

Because we have had such good luck with the peripheral nerve blocks -- I mean they work just not for long. But since they do eliminate the pain, we are going to look at getting botox injections.

Anyone familiar with this sort of pain? Currently we are calling it Persistent Idiopathic Facial Pain. I'm pretty appalled at the start of the art in facial pain. There really seems to be no Dr. House out there looking for diagnosis beyond the typical stuff. And no one is interested in really finding out what is going on with Brandie. So each specialist treats it with their pet procedures or drugs. I will say that while we were really unhappy with Dr. Burchiel we have been really happy with the doctors at her pain clinic. If the botox doesn't work we will look into Johns Hopkins or the Mayo Clinic. We also considered MHNI. But I fear that all these place are basically the same....same procedures, same tricyclics, same anti-seizure medicines. We'll see.

2

CORRECTION: Brandie says that the ENT said her jaw was dislocated because he believed a motor nerve was hit instead of a sensor nerve during the RFA and that the ENT had seen that fairly often. Not because of pushing down to hard during the procedure as that would have resulted in both sides of the jaw being dislocated.

3

Wow - I don't even have words to say but there are so many knowledgeable people on this site who will have answers for you. I am still new with my TN - 6 weeks of atypical TN with constant pain on the left side - and crushing bone pain it is. I am on gabapentin therapy at this point, and just had my head MRI. I'm hoping for the best, that the treatment will help me. I can't imagine what your wife has been through. This is a horrible disease and no one should have to deal with it. I agree that there is no emphasis on treatments, etc. I think some doctors still believe it's "all in your head". I hope you find some answers here and you and your wife will be in my prayers. I wish you the best.

4

I know the feeling of "bone crushing". At first, I kept telling my doctors that I thought my upper jaw was fracturing. That is how it felt. I am sure you have tried Lyrica, but I can tell you that after over a year of terrible pain, with no help from the generally prescribed anticonvulsants, my pain is almost totally under control with Lyrica. Since Brandie responds to an tricyclic antidepressant, she should respond well to Lyrica. It took some tweeking to get me to the level that I am at. (And at least 5 different doctors). I am laughing again, sleeping on the "pain" side and packed away my heating pads. I did not respond well to Lyrica at 2X 75mg per day, but the pain doctor upped it to 3 and WOW, pain started diminishing within days. I also take Xanax to sleep, (although I may not need that anymore) and Doxepin, another kind of tricycli antidepressant. I wish you all the luck in the world in your search for answers. I think that Brandie definitely has ATN as hers sounds exactly the way mine started. I never had the "electric shock" pains, but have had some pains similar to that. Sometimes, the pain was like TN1, but mostly constant ATN for me. I completely agree with you about the limited research and interest by many doctors regarding this disorder. I am grateful every day that I am pain free and have a whole new appreciation for life.

5

Robert and Brandie,
I am absolutely amazed at your tenacity in the face of a medical community that has let you down. I admire you both. (So as to not repeat myself, please see my page for details on my use of botox for migraine with the added benefit of tn relief.) I live just north of Portland and see a pain specialist at Peace Health Hospital in Salmon Creek. Dr Lucklwitz not only has helped with botox inj, but he took me off the med gabapentin two weeks ago, and on to a new, more efficient neurontin called Gralise. 1200 mg 1x p/day works better than 2400 mg gabapentin (generic neurontin).
If you’d like to meet my husband and I or talk privately over email, msg me and we can chat. Meanwhile, I will be praying everyday that Brandie finds relief. It has taken ten years to get to a place where there is adequate pain control and an enjoyment in life is being restored. Robert, you remind me of my hubby as he went on the net and beat down doors for me to find help. Lately, he is on a kick wanting me trying medical marijuana to help with the hard days, but I won’t listen as long as the kids are young. Although there are patients at the pain clinic that are allergic to the first line meds for tn, so they use MM to great success. My hubby is the type to try to help make this better for me w/o comprimising my overall health. I love him for this and many other reasons :slight_smile: Just know that a wife with this type of pain is MORE than blessed to have a mate who cares so much to be a catalyst for relief. Sometimes this kind of stress hurts a marriage, and when we have this stress, more love and understaning are needed. We found we are still best friends and could NOT do this life w/o each other. I am glad you two have each other…there is so much strength in one another.
Take care,
LyndaS

6

Thanks Lynda. For what it's worth Brandie has tried marijuana and it really didn't do much for the pain but your experience could be different. Brandie has not had a great reaction to the various anti-seizure medicines like neurontin, tegretol, topomax, etc. But the tricyclics seem to help with some of the pain. The last time she tried an SSRI she got serotonin syndrome so I'm not sure how she would react to drugs like Lyrica. We are cautiously optimistic about the botox injections. She doesn't have any occipital pain so the injections will be in the face rather than the scalp.



LyndaS said:

Robert and Brandie,
I am absolutely amazed at your tenacity in the face of a medical community that has let you down. I admire you both. (So as to not repeat myself, please see my page for details on my use of botox for migraine with the added benefit of tn relief.) I live just north of Portland and see a pain specialist at Peace Health Hospital in Salmon Creek. Dr Lucklwitz not only has helped with botox inj, but he took me off the med gabapentin two weeks ago, and on to a new, more efficient neurontin called Gralise. 1200 mg 1x p/day works better than 2400 mg gabapentin (generic neurontin).
If you'd like to meet my husband and I or talk privately over email, msg me and we can chat. Meanwhile, I will be praying everyday that Brandie finds relief. It has taken ten years to get to a place where there is adequate pain control and an enjoyment in life is being restored. Robert, you remind me of my hubby as he went on the net and beat down doors for me to find help. Lately, he is on a kick wanting me trying medical marijuana to help with the hard days, but I won't listen as long as the kids are young. Although there are patients at the pain clinic that are allergic to the first line meds for tn, so they use MM to great success. My hubby is the type to try to help make this better for me w/o comprimising my overall health. I love him for this and many other reasons :-) Just know that a wife with this type of pain is MORE than blessed to have a mate who cares so much to be a catalyst for relief. Sometimes this kind of stress hurts a marriage, and when we have this stress, more love and understaning are needed. We found we are still best friends and could NOT do this life w/o each other. I am glad you two have each other...there is so much strength in one another.
Take care,
LyndaS
7

Yeah, doctors hate not to be able to have what they know help. When THEY are out of ideas or don't know how to treat something they are inclined to blame the patient. I guess it is just human nature but it sucks. But most of our doctors see no conversion in Brandie and that's on her charts.

typqueen said:

Wow - I don't even have words to say but there are so many knowledgeable people on this site who will have answers for you. I am still new with my TN - 6 weeks of atypical TN with constant pain on the left side - and crushing bone pain it is. I am on gabapentin therapy at this point, and just had my head MRI. I'm hoping for the best, that the treatment will help me. I can't imagine what your wife has been through. This is a horrible disease and no one should have to deal with it. I agree that there is no emphasis on treatments, etc. I think some doctors still believe it's "all in your head". I hope you find some answers here and you and your wife will be in my prayers. I wish you the best.

8

Thanks we'll look into Lyrica. Unfortunately, Brandie is at risk for serotonin syndrome.

D McGinnis said:

I know the feeling of "bone crushing". At first, I kept telling my doctors that I thought my upper jaw was fracturing. That is how it felt. I am sure you have tried Lyrica, but I can tell you that after over a year of terrible pain, with no help from the generally prescribed anticonvulsants, my pain is almost totally under control with Lyrica. Since Brandie responds to an tricyclic antidepressant, she should respond well to Lyrica. It took some tweeking to get me to the level that I am at. (And at least 5 different doctors). I am laughing again, sleeping on the "pain" side and packed away my heating pads. I did not respond well to Lyrica at 2X 75mg per day, but the pain doctor upped it to 3 and WOW, pain started diminishing within days. I also take Xanax to sleep, (although I may not need that anymore) and Doxepin, another kind of tricycli antidepressant. I wish you all the luck in the world in your search for answers. I think that Brandie definitely has ATN as hers sounds exactly the way mine started. I never had the "electric shock" pains, but have had some pains similar to that. Sometimes, the pain was like TN1, but mostly constant ATN for me. I completely agree with you about the limited research and interest by many doctors regarding this disorder. I am grateful every day that I am pain free and have a whole new appreciation for life.

9

Funny you mention seritonin syndrome, I had this experience, too, and it was the worst part of my life. And, that is saying a LOT since my childhood was horrific! Docs blamed it all on me when they could have warned me with the meds given that this may happen (a friend who is an ER nurse was warned and was on the identical meds as I). Anyway, thank God Brandie and I lived through the ordeal! I was apprehensive about ANY anti-depressants, so I mostly use a machine called Alpha Stim 1000hat works for pain and depression (the depression caused by pain is an automatic low seritionin level). I use this machine about two full weeks out of a month as that is when the lowest seritonin levels appear. If I use amitriptelene, it is a very low 25 mg at night. Doc asked me to not take this and Baclofen for a time while the Gralise is established. I gained 17 lbs in 17 weeks and he is applying it the meds.

About Botox, the highest part of my pain is right sided, so the doc uses most of the botox in the right front scalp. He also uses a small amount of steroid in an area that feels like a little piece of bone near the MVD scar behind the ear. The steroid gets used every 3 months. The botox, however, every 6-8 weeks or I'm in trouble. Last time the appt setter messed up and I saw the doc at 9 weeks and was in a really, really bad way pain wise. There is not very much scalp muscle so the botox for pain releif wears off quickly, but for migraine relief, even at 9 weeks is still working. The doc goes along the forehead, into the hairline 1/2 inch and injects a lot of med here. If it's in the forehead's lower area, then the muscle causes my eyebrows to droop and I look really goofy. He puts 3 units x3 shots right at the top of the cheekbone, directly under the corner of the eye. This is done on both sides. It stops the burning of the eyeball and electrical shocks to the eye completely. 2.5 units go right in the lowest part of the nostrils, this stops the ant crawling in the nose area and burning in the area above the lip. He also puts a LOT in directly in front of the ear, where the three branches of the trigeminal nerve begin to branch out into the face. He does this on both sides as my left side is beginning to act up, but not nearly as bad as the right.Very little of the 200 units used every couple of months is used in the face. The migraine and tn are mostly on the right side, so it's concentrated there for the most part. It's a powerful drug and since April of 2009, we've been experimenting to find where the best places are to put the med. My dentist thinks the Trigeminal nerve should be hit with it, but I wonder if it was hit, instead of hitting the muscles surrounding the nerve, if it would have adverse effects on the full system?

My problem on the right is that I had Gamma Knife x2 and it caused ATN symptoms and anesthesia delorosa. A life long sentence, I suppose. Although, I like to think that we live in an age where information is doubling every 5 years in the medical findings, so we are probably on the precipice of a full blown breakthrough for our problem. I like to think that TN has come to visit!

Has Brandie tried Katamine 10% cream? There is also a mix of compounded gabapentin, amitriptelene, lidocaine, and katamine that is helpful. I'm allergic to lidocaine, so I must use this sparingly, but it works when I do use it!

Take good care,

LyndaS

10

have your wife's PCP do some blood work to check for something auto immune. barring that, the MRI would have picked up some kind of neuro-degenerative disorder which occasionally can cause face pain. so her having MS is likely ruled out.

your wife never had a compression, and that was confirmed by the lack of findings during the MVD. the surgeon should have immediately closed shop instead of mechanically traumatizing the nerve. so here are my two cents:

the bilateral pain is highly unlikely to be neuralgic. people will tell you it's possible, but with a clean MRI and bloodwork (get that done) it's very low. like House episode low. the surgeon created a lesion on the nerve with the MVD, so any pain signals coming from the face would be disrupted by this lesion and not reach the brain. the 2-3 window may be the amount of time your nerve took to heal from his mechanical wound. the radiofrequency not working is weird; the surgeon could have indeed missed the mark, which would be outrageously incompetent, or perhaps he did not create enough of a lesion to cause any symptoms (which would be a good thing in my opinion.) the motor nerve was likely not hit; she would be drooling and unable to chew or form words properly. a dislocated jaw is more than obvious; she wouldn't be able to open or close.

the lidocaine working on the pain means the problem is peripheral ie. in the face, as opposed to the problem being near the brainstem or actually a malfunction in the thalamus itself. however, the pain could have a nerve component to it, because any imbalance or disjoint in the facial skeleton or musculature can irritate the peripheral nerves in your face.

the origin of the pain is convoluted by the surgeon traumatizing the nerve with his treatments. she likely has two problems happening at once now; pain from iatrogenic damage and pain from something peripheral happening in her face causing the bilateral symptoms. but she may have escaped unharmed from the previous treatments, and this is where people go crazy, doctors and patients alike, from trying to figure out what is coming from where. the most difficult way to get good information is to come off the medication and document the quality of the pain. this is not easy to do. however, if while un medicated, she starts getting electric shocks or serious burning, then you know she has residual effects from the surgical trauma.

i personally am too impatient for holistic treatments, i'm rooted in research and i like studied evidence, but god bless for those whom it actually helps. look into cranio sacral therapy or some kind of muscular treatment which focuses on the head, neck and shoulder. it's weird and expensive, but if it helps, it gives you more information about her pain. a trip to a competent orthodontist is also not out of this world. DON'T let them inject her with any blocks, or "adjust her bite", just go see if her jaw is in balance. again, a splint is not the worst treatment, if it helps, you get more information about what is happening. if it doesn't, you still get information.

tricyclics are great; they work on alot of different kinds of pain because they boost feel good chemicals in your brain. however, they knock you for a loop and you can sleep 14 hours a day. i imagine botox will give you good results because they work on the muscles in the face.

get the bloodwork, check out an ortho opinion and try the botox.

good luck,

vesper

ps. i am not a medical doctor.

11

Since she responds well to the amitriptyline, perhaps you could talk to your doctor about upping the dose to 100mg. Once I got to that high of a dose it made a big difference.

Why would Lyrica affect her risk for serotonin syndrome? Just curious, as I haven't heard that and since it's not an SSRI or an SNRI, and is an anti-convulsant, I hadn't heard about this risk.

I'm trying Topomax, starting this week. I hope it works well, but only time will tell...

12

Oh good, I think I had it confused with Cymbalta which has been linked to serotonin syndrome. Or maybe I heard it was possible when used in combination with Amitriptyline.

crystalv said:

Since she responds well to the amitriptyline, perhaps you could talk to your doctor about upping the dose to 100mg. Once I got to that high of a dose it made a big difference.

Why would Lyrica affect her risk for serotonin syndrome? Just curious, as I haven't heard that and since it's not an SSRI or an SNRI, and is an anti-convulsant, I hadn't heard about this risk.

I'm trying Topomax, starting this week. I hope it works well, but only time will tell...

13

Sorry, I thought it was obvious she didn't have a compression sorry I didn't make that clear. And right, he shouldn't have scored the nerve but we didn't know much then and went with his recommendation. This was maybe 3 years ago. She has been to various ENTs and orthodontists to look at her bite -- no issue there. 3 or so years of blood work is clean. Yep, no signs of MS on MRIs which would have been one possible explanation for it going bilateral. A peripheral nerve block working is not always an indication that the problem is peripheral. It can still be a central issue depending on how the system interprets the signals being sent to it. Those signals change with a nerve block, so it is not out of the question that there could be a thalamus issue or some other central issue -- even though a peripheral nerve block provides relief. I think the odds are unlikely that there is a nerve problem at the branches on both sides.

I'm close to thinking Cranial Sacral therapy is close to quakery but that is just my opinion and if people get relief from it that is great. I'm also not feeling the love on Atlas Orthogonal but I know a lot of people feel pretty religiously about it.

Thanks for the thoughts, and yeah, it looks like botox is a good way to go at the moment.

vesper venustas said:

have your wife's PCP do some blood work to check for something auto immune. barring that, the MRI would have picked up some kind of neuro-degenerative disorder which occasionally can cause face pain. so her having MS is likely ruled out.

....
14

Oh, and she was up to 90mg on the amitriptyline but she started to have side effects she could not tolerate -- being angry, cloudy, and other issues. So we backed off to 70mg. She liked Topomax for losing weight but for everything else it really didn't work well for her. :)

crystalv said:

Since she responds well to the amitriptyline, perhaps you could talk to your doctor about upping the dose to 100mg. Once I got to that high of a dose it made a big difference.

Why would Lyrica affect her risk for serotonin syndrome? Just curious, as I haven't heard that and since it's not an SSRI or an SNRI, and is an anti-convulsant, I hadn't heard about this risk.

I'm trying Topomax, starting this week. I hope it works well, but only time will tell...

15

hi again,

your wife would have more globalized symptoms if the problem was central. pain localized to the head does not a central problem make. a clean MRI should be reassuring about this.

peripheral neuropathic pain results from the disruption of three chemicals in the nerve channel; sodium, calcium and potassium. one or any combination of these chemicals in a state of imbalance causes neuropathic pain. think of a sea anemone; the tentacles flow in and they flow out. this is much like how the nerve channels modulate these chemicals. an injury to a nerve breaks holes in the channels and disrupts the chemical symphony that the nerve conducts to modulate pain sensations.

central pain is difficult to treat because the malfunction stems from the brain itself, usually because too many cells have died as the result of oxygen starvation. generally strokes are the largest cause of CNS injury, excluding direct force trauma from a car accident or the like. trigeminal pain, either caused by surgical treatment or otherwise insidious, does not cause central pain or a central injury. be wary of providers telling you this is a possibility and ask them to prove their theory; central injury can usually be visualized through imagery.

the median dose for a tricyclic to achieve neuropathic pain relief is 100mg. nortriptyline is reported to have fewer side effects than amitriptyline.

an MRI of her TMJs is not totally crazy, but its hard getting an MD to sign off on one.

good luck, keep us posted on your progress.

vesper

ps. i am not a medical doctor.
rdifalco said:

Sorry, I thought it was obvious she didn't have a compression sorry I didn't make that clear. And right, he shouldn't have scored the nerve but we didn't know much then and went with his recommendation. This was maybe 3 years ago. She has been to various ENTs and orthodontists to look at her bite -- no issue there. 3 or so years of blood work is clean. Yep, no signs of MS on MRIs which would have been one possible explanation for it going bilateral. A peripheral nerve block working is not always an indication that the problem is peripheral. It can still be a central issue depending on how the system interprets the signals being sent to it. Those signals change with a nerve block, so it is not out of the question that there could be a thalamus issue or some other central issue -- even though a peripheral nerve block provides relief. I think the odds are unlikely that there is a nerve problem at the branches on both sides.

I'm close to thinking Cranial Sacral therapy is close to quakery but that is just my opinion and if people get relief from it that is great. I'm also not feeling the love on Atlas Orthogonal but I know a lot of people feel pretty religiously about it.

Thanks for the thoughts, and yeah, it looks like botox is a good way to go at the moment.

vesper venustas said:

have your wife's PCP do some blood work to check for something auto immune. barring that, the MRI would have picked up some kind of neuro-degenerative disorder which occasionally can cause face pain. so her having MS is likely ruled out.

....
16

Right, I've heard that several times about nortriptyline. Do you know how the side effects are different? Her ketamine cream uses nortriptyline. We've already been down the TMJ path from several different angles but thanks for the suggestion.

vesper venustas said:

hi again,

your wife would have more globalized symptoms if the problem was central. pain localized to the head does not a central problem make. a clean MRI should be reassuring about this.

peripheral neuropathic pain results from the disruption of three chemicals in the nerve channel; sodium, calcium and potassium. one or any combination of these chemicals in a state of imbalance causes neuropathic pain. think of a sea anemone; the tentacles flow in and they flow out. this is much like how the nerve channels modulate these chemicals. an injury to a nerve breaks holes in the channels and disrupts the chemical symphony that the nerve conducts to modulate pain sensations.

central pain is difficult to treat because the malfunction stems from the brain itself, usually because too many cells have died as the result of oxygen starvation. generally strokes are the largest cause of CNS injury, excluding direct force trauma from a car accident or the like. trigeminal pain, either caused by surgical treatment or otherwise insidious, does not cause central pain or a central injury. be wary of providers telling you this is a possibility and ask them to prove their theory; central injury can usually be visualized through imagery.

the median dose for a tricyclic to achieve neuropathic pain relief is 100mg. nortriptyline is reported to have fewer side effects than amitriptyline.

an MRI of her TMJs is not totally crazy, but its hard getting an MD to sign off on one.

good luck, keep us posted on your progress.

vesper

ps. i am not a medical doctor.

17

the usual suspects; sedation, dry mouth, dizziness, somnolence, etc. some people report less of these occurrences with nortriptyline, which incidentally, is a metabolite of amitriptyline.

compounding creams use but a fraction of the necessary oral dosage. ask the pharmacist how many mgs are used in her cream.

vesper


rdifalco said:

Right, I've heard that several times about nortriptyline. Do you know how the side effects are different? Her ketamine cream uses nortriptyline. We've already been down the TMJ path from several different angles but thanks for the suggestion.

vesper venustas said:

hi again,

your wife would have more globalized symptoms if the problem was central. pain localized to the head does not a central problem make. a clean MRI should be reassuring about this.

peripheral neuropathic pain results from the disruption of three chemicals in the nerve channel; sodium, calcium and potassium. one or any combination of these chemicals in a state of imbalance causes neuropathic pain. think of a sea anemone; the tentacles flow in and they flow out. this is much like how the nerve channels modulate these chemicals. an injury to a nerve breaks holes in the channels and disrupts the chemical symphony that the nerve conducts to modulate pain sensations.

central pain is difficult to treat because the malfunction stems from the brain itself, usually because too many cells have died as the result of oxygen starvation. generally strokes are the largest cause of CNS injury, excluding direct force trauma from a car accident or the like. trigeminal pain, either caused by surgical treatment or otherwise insidious, does not cause central pain or a central injury. be wary of providers telling you this is a possibility and ask them to prove their theory; central injury can usually be visualized through imagery.

the median dose for a tricyclic to achieve neuropathic pain relief is 100mg. nortriptyline is reported to have fewer side effects than amitriptyline.

an MRI of her TMJs is not totally crazy, but its hard getting an MD to sign off on one.

good luck, keep us posted on your progress.

vesper

ps. i am not a medical doctor.

18

Her primary side effects were muscle spasms, hair loss, and weight gain. And generally feeling pissed off on the drug.



vesper venustas said:

the usual suspects; sedation, dry mouth, dizziness, somnolence, etc. some people report less of these occurrences with nortriptyline, which incidentally, is a metabolite of amitriptyline.

compounding creams use but a fraction of the necessary oral dosage. ask the pharmacist how many mgs are used in her cream.

vesper


rdifalco said:

Right, I've heard that several times about nortriptyline. Do you know how the side effects are different? Her ketamine cream uses nortriptyline. We've already been down the TMJ path from several different angles but thanks for the suggestion.

vesper venustas said:

hi again,

your wife would have more globalized symptoms if the problem was central. pain localized to the head does not a central problem make. a clean MRI should be reassuring about this.

peripheral neuropathic pain results from the disruption of three chemicals in the nerve channel; sodium, calcium and potassium. one or any combination of these chemicals in a state of imbalance causes neuropathic pain. think of a sea anemone; the tentacles flow in and they flow out. this is much like how the nerve channels modulate these chemicals. an injury to a nerve breaks holes in the channels and disrupts the chemical symphony that the nerve conducts to modulate pain sensations.

central pain is difficult to treat because the malfunction stems from the brain itself, usually because too many cells have died as the result of oxygen starvation. generally strokes are the largest cause of CNS injury, excluding direct force trauma from a car accident or the like. trigeminal pain, either caused by surgical treatment or otherwise insidious, does not cause central pain or a central injury. be wary of providers telling you this is a possibility and ask them to prove their theory; central injury can usually be visualized through imagery.

the median dose for a tricyclic to achieve neuropathic pain relief is 100mg. nortriptyline is reported to have fewer side effects than amitriptyline.

an MRI of her TMJs is not totally crazy, but its hard getting an MD to sign off on one.

good luck, keep us posted on your progress.

vesper

ps. i am not a medical doctor.