Chris, I think that is pretty terrific that they took the time to chart everything out for you. It shows they have concern and are interested in getting to the heart of what's really going on here. Restore's my faith in mankind. .
Onwards and upwards. :D Min
I wholeheartedly agree, Min. I’ve always thought my doctor was pretty awesome, but he has gone above and beyond this time. I’m so pleased that he wants to utilize every available resource to get to the bottom of this. His colleague was a superstar as well. Hopefully he can offer his input again down the road.
Thanks for the encouragement!
I take lorazepam 2mg every other night. Helps me sleep but most importantly is that even if i get what has become no more than6 hrs of sleep per night the next day I feel a sense of inner initiative. I would take this benzo every night except for the problem of an increased tolerance, which happens very quickly. This drug helps me so much that I keep telling the pain doctor that the response must offer a clue as to the underlying etiology of the pain. His response is that medical science vaguely uses the term "anti-anxiety" but when it comes to grasping the mechanics within the cns as to how the benzo's work, they don't have a clue. My days following the nights without lorazepam are almost always throw away days. I'm fall down tired, clumsy, and just very depressed. Sleep is really the best medicine and after five years I have never been able to regain control over my sleep pattern. About one year ago, I started using marijuana every night with a vaporizer. Heaven sent but it is only good for about three hours, and I think that to use a second time in the middle of the night is taking me into dangerous territory. Long term use of this drug/herb can truly damage the brain. At least, that's my assumption based on clinical experience. We really need more research.
As for clonazepam, the pain doctor plus a neurologist with extensive experience using this drug advised against it. I do not understand the reasoning, only that they both independently said that this drug can increase the level of pain and lead to a need for higher dosages. Having said that, I see many people reporting how helpful the drug is to them.
As for folks saying that they chew a benzo medication or allow it to dissolve in the mouth, I strongly do not think that this results in a topical application. Until proven otherwise, this sounds like bs. We have a neurological problem, not a peripheral problem. Sublingual use of the drug....which is how I take it...will shorten the time for the drug to get into our system...at least, that's my take.
Stress is not the cause of our problem but it will aggravate it. My temperament includes a driven quality. Until there is a medical break through that addresses the heart of the onset, I rely on exercise, positive distraction, communion with nature, healthy eating (no/low: sugar, dairy, wheat, grain) and herbs that are associated with relaxation (passion flower extract, hops extract, and a Chinese formula(jujube as the primary ingredient).
Meanwhile, I do think that anyone researching ATN should ponder why so many of us benefit from benzodiazepine meds. Unfortunately, this class of drugs often turns out to be high on the list of abuse and utter agony when making the attempt to stop taking them. I just skimmed through the discussion here, and I wonder if I missed more comments that highlight the risk of using them for pain management.
Wm, thank you so much for your input. Getting to hear other points of view is so valuable and I really appreciate your thoughtful contribution to the discussion.
When I was first diagnosed, I was offered medication for treatment, as I am not a surgical candidate. I was extremely reluctant to take medication in general and anti-convulsants/benzodiazepines in particular because of the potential risks of long-term use. My doctor told me that he is not a pill pusher and that it was entirely up to me whether I wanted to pursue that course of treatment. After considering my options, I let him know that I wanted to see if I could bring my pain down to a manageable level on my own first before turning to medication. For nearly year and a half, I was successful. I had some bad days, of course, but overall my pain levels decreased and I felt that I was functioning quite well with this condition as part of my life. At the start of February, everything changed. My pain levels started to inexplicably escalate and spiral out of control. None of the alternative remedies that had provided relief in the past were helping. After ruling out an abscessed tooth with both my dentist and endodontist, I turned to my orofacial pain specialist and accepted his offer of medication. This was not a decision that I made lightly. I knew that I had reached the point where I had done everything humanly possible on my own, and that I needed more support. I also knew that I was not making this decision under duress; I have carefully weighed the pros and cons and determined that taking medication is a logical next step towards (hopefully) feeling better and regaining some quality of life.
Doctors are human beings, and they certainly aren’t infallible, but I do feel that my doctor is doing all that he can for me and that he has my best interests at heart. He has proven this with his depth of knowledge, his availability, his utmost respect for my wishes, his willingness to avail himself of all available resources and most important of all, his track record of helping me to feel better. His colleague has many of the same characteristics and an impressive resume to boot. I knew that whatever they prescribed, I probably wasn’t going to like it anyway, but the process they used was so thorough and so thoughtful that it won me over. That doesn’t mean that I am clonazepam’s biggest fan or anything. I find it hard to believe that some little yellow pill is going to correct whatever complicated malfunction that is going on in my brain, so I am skeptical about the whole situation. Still, I want it to work and am hopeful that it will.
I welcome any ideas or thoughts that anyone has to offer. Getting to learn from all of you is what makes this site so incredible.
Take care,
Chris
Chris K,
I'm going to be opinionated, knowing full well that every case is different. IF the pain onset is relatively recent and your dental providers didn't take you down a harmful rabbit hole (extraction, root canal, or even treatment for TMJ) then I give points to your tx team. However, if a tricyclic med was not their first med of choice I would question their depths of knowledge. When I dove into the web struggling to find answers, the ONLY patients who reported termination of constant pain were those that almost immediately were placed on this class of meds. Moreover, they were encouraged to tolerate the side effects for a few months. This is only anecdotal knowledge, but it is a pattern even if no one can explain the underlying mechanics. In my case, my immediate providers (dentists, endo's, and orofacial pain specialist(just another dentist) were partial to a root canal and hydrocodone. None of this was appropriate. As for their bedside manner, it was generally pretty good. They seemed empathic and caring, and even "seemingly" knowledgeable. Looking back, I am much more cynical. It is normal for patients to project positive characteristics onto their providers. We are searching for that constant of hope. However, I would guess that many of us, over time, would downgrade our evaluation of them. I loose respect for professionals that leverage their image of being the expert without doing the homework. And, I was shocked at my own judgment, overestimating their expertise. I recently had an updated mri and spoke at length with one of the most respected radiologist in the city; he is the go-t0-guy when other doctors need a diagnosis. It was clear from the conversation that the radiologist knew the diagnostic and treatment problems associated with A- TN. His advice was, "Go out of town" to find knowledgeable providers. The culture of the profession within a city can be a major factor. Too many limitations become the norm and resistant to change. Well, that's my rant even if I miss the mark of your own situation.
p.s. I just looked back at the thread. Crystal mentioned the effectiveness of amitriptyline, and she lists her provider as Dr. Graff. Based on various sources, he is highly respected.
Yes, he is my doctor, and he is the one who prescribed me Klonopin. He told me to swish it around for three minutes in the gum area, so it can be absorbed the mucous membranes. He also gave me amitriptyline, which has been a life saver for me. But Klonopin helps too. Together they are a great combo.
Hey wm phillips,
I can tell from your manner of writing you've had a long hard journey. I did wish to pull you up on your opinion of the nature of ATN about it being neurological not peripheral. I think a little differently to you at this stage and believe that in many cases of neuralgia the sheath of the nerve is breaking down leading to nerve pain. This phenomena has actually been examined and many cases of ATN, whether its a cause, bi-product or a combination of the two is yet to be determined.
Other cases develop from damage to the nerve in other ways such as car accident or dental work and these cases are most definitely both peripheral and neurological in nature.
Pain isn't something which can be measured and compared easily. It sounds to me like crystalv's Dr. has seen, that in peripheral cases, application of this kind near the damaged trigeminal nerve has led to faster relief. If crystal says it helps to do this than I believe her and for the physical reasons I've stated above. Your case may be 100% neurological but there are many cases where it has a peripheral component as well.
I've read on this site for certain members that topical creams and gels created from a mixture of particular medications etc do have their place in the fight and I dont think such methods should be ruled out so manner of factly.
my 2 cents
wm phillips said:
I take lorazepam 2mg every other night. Helps me sleep but most importantly is that even if i get what has become no more than6 hrs of sleep per night the next day I feel a sense of inner initiative. I would take this benzo every night except for the problem of an increased tolerance, which happens very quickly. This drug helps me so much that I keep telling the pain doctor that the response must offer a clue as to the underlying etiology of the pain. His response is that medical science vaguely uses the term "anti-anxiety" but when it comes to grasping the mechanics within the cns as to how the benzo's work, they don't have a clue. My days following the nights without lorazepam are almost always throw away days. I'm fall down tired, clumsy, and just very depressed. Sleep is really the best medicine and after five years I have never been able to regain control over my sleep pattern. About one year ago, I started using marijuana every night with a vaporizer. Heaven sent but it is only good for about three hours, and I think that to use a second time in the middle of the night is taking me into dangerous territory. Long term use of this drug/herb can truly damage the brain. At least, that's my assumption based on clinical experience. We really need more research.
As for clonazepam, the pain doctor plus a neurologist with extensive experience using this drug advised against it. I do not understand the reasoning, only that they both independently said that this drug can increase the level of pain and lead to a need for higher dosages. Having said that, I see many people reporting how helpful the drug is to them.
As for folks saying that they chew a benzo medication or allow it to dissolve in the mouth, I strongly do not think that this results in a topical application. Until proven otherwise, this sounds like bs. We have a neurological problem, not a peripheral problem. Sublingual use of the drug....which is how I take it...will shorten the time for the drug to get into our system...at least, that's my take.
Stress is not the cause of our problem but it will aggravate it. My temperament includes a driven quality. Until there is a medical break through that addresses the heart of the onset, I rely on exercise, positive distraction, communion with nature, healthy eating (no/low: sugar, dairy, wheat, grain) and herbs that are associated with relaxation (passion flower extract, hops extract, and a Chinese formula(jujube as the primary ingredient).
Meanwhile, I do think that anyone researching ATN should ponder why so many of us benefit from benzodiazepine meds. Unfortunately, this class of drugs often turns out to be high on the list of abuse and utter agony when making the attempt to stop taking them. I just skimmed through the discussion here, and I wonder if I missed more comments that highlight the risk of using them for pain management.
Luke,
I agree with your practicality 100 percent, and you are right...it's been a hard journey. Buttons can get pushed, so I rant...hopefully, just a little and not to offend anyone. (This excludes the medical/dental profession who lack a sense of shame.) Bottom line, do what works as long one knows the risk involved. As for the theoretical point of view...I wish that it was only a peripheral problem and, of course, all of our cases are different. For me, I have tried many topical applications and I feel like I am spinning my wheels. They function more like a counter-irritant, a distraction. I end up feeling as if I am merely "doing something" about the pain and relating to a physician as if he really has something to offer. Capzasin sounds interesting and given hope that it really can lead to nerve repair. But, has it? Well, I just prefer to find hope in other places until there is a medical break through with unequivocal dramatic results.
Wm, thanks so much for taking the time to share more of your thought process and
your approach to the medication issue. I am sorry to hear that you had unnecessary dental
work done. That is awful.
When my pain suddenly escalated at the start of February, it was focused on one tooth
only, which is extremely unusual for me. It was also keeping me awake at night, which
normally my TN pain does not do. I had no way of knowing if I had developed an abscess or
if I was simply having a particularly horrendous flare up of TN pain. After the pain
persisted for two weeks, I went to my dentist so that he could take an x-ray to rule out
an abscess. He saw a potentially suspicious shadow on the x-ray and sent me to my endodontist for
another opinion. Luckily, the endodontist said that my x-rays were clear and ruled out
the tooth as the culprit. Now that I knew the tooth was not the cause of the pain, I saw
my orofacial pain specialist, who said that given my symptoms, I had been prudent to have
the tooth checked out. After he did his own evaluation, he and his colleague prescribed
the clonazepam after an intense review of my symptoms and pain patterns. Both doctors
pointed out that finding the right medication is sometimes a matter of trial and error
because everyone responds to a particular medication differently. They said that there
would likely be some fine tuning down the road and possibly other meds added to the mix,
but that they recommended that I try this med on its own initially so that we could learn
if it was beneficial to me and then go from there. This seemed reasonable to me and I
agreed that it was something I was willing to try. Time will tell how this pans out. In
the meantime, I know that I have made the best possible decision for me at this point in
time and I am comfortable with my choice. I know that others may approach this same
situation from a different angle, and I respect that, but this is right for me.
Per my review of my doctors, I only meant to assure you that my trust in them is not
blind. It is based on the excellent care that I have been given, as well as their
experience. My doctor's colleague who suggested the clonazepam is a member of the TNA
Medical Advisory Board along with Dr. Graff-Radford, so I do feel that he is a
knowledgeable provider. I feel very lucky to have such a great team on my side.
Take care,
Chris
Ps, I am glad that you are opinionated. It keeps things lively around here.
Chris, I think starting with just one med is the right way to do it. I will always only try one new med at a time, so that way I can be sure I know what's working and what isn't working. It would be terrible to be on a med and dealing with its side effects, only to find you didn't need it the whole time.
Once I've been on a med for a while and I know it's working, I will continue that, and if I need something else, I'll stick to the rule, one new med at a time, but of course the meds I'm currently on don't count. Not sure if I'm making sense!
I hope you're doing better and the Klonopin is helping.
Luke, haven't seen you around, hope you're having low/no pain.
wm phillips, just wondering if you read my thread about my "stent" and the med compounds that I wrote about. Below is a link. Since, like me, your pain seems to be mainly in your teeth, it's something that might help you. I hope you're having a low/no pain day as well.
http://www.livingwithtn.org/forum/topics/using-a-stent-for-oral-and...
Chris K,
Thanks for giving me the space to rant, then again I do not want to become over focused on
resentment. If Dr. Graff signed off on Klonopin, this says a lot and, frankly, encourages me
to re-connect with Dr. Okeson...our local regional equivalent...the two of them know each
other well. And, I will re-visit the use of Klonopin. Benzo meds, for whatever reason, touch
the spot. You absolutely have a good team. It's ironic that Okeson is a world class authority and yet
dentists hundred miles away in the big city don't have a clue. I still wonder about the risks of Klonopin.
What did your doctors tell you along these lines? What's your dosage? Are you concerned about building up a tolerance? In my case, a second night of lorazepam(2m) would immediately reduce efficacy. I'm glad to see discussion of these meds brought up. Some time ago, I think that I tried to do the same.
Lorazepam is so effective....although contact with the tooth 8 is still out of the question...that I have looked for herbs to reproduce the same effect without the same risk. I purchased GABA. Tried it a few times. No impact. The pain physician agreed with me that since there is so little written on this herb that it would not be worth the risk of increasing the dosage.
Crystalv: I went back and read the thread on the stint. Okeson made one for me in order to hold his cocktail of a topical application. The stint was masterfully made. Thin, and just tight enough to keep the meds in place. It was a similar mix, minus the capzasin; I have a bad gut and over time it would become a problem. The results were never dramatic enough for me to persevere. It fit too much into the trial and error camp and Okeson agreed with me that this was only about pain management, nothing close to termination of pain. Unless I can bite into a sandwich with tooth 8, I'm not there, yet. Although I am dismissive of the stint, I did pull it out a few months ago to see if I could use it with an herb--cow parsnip extract, which functions as a counter irritant. The problem I had is that my teeth have moved and the stint no longer fits. My new dentist and I have an excellent relationship. Perhaps I should have him make me a new stint with Okeson's material. How long and when do you wear your stint loaded med combo? Or, has it become more of fall back tool?
Last night was a lorazepam night and thanks to the human connection with my wife I was able to get back to sleep after the standard early a.m. bolt like awakening. So, today, is a good day.
Luke, thanks so much for sharing your perspective on the neurological versus peripheral components of this condition. It made me see things in a different light. My doctor is also having me swish the medication around my mouth so that I can derive the benefit of a direct application to my area of pain. My take on it is that since it is a pretty easy thing to do, so I may as well give it a shot, especially since it won't make anything worse.
Crystal, yep, that makes perfect sense. We are on the exact same page with our approach to this. It's important to me to be able to evaluate my reaction to each medication individually, which is impossible to do if you are starting more than one at a time.
Wm, Dr.Okeson's body of work is certainly impressive. That is fantastic that you have someone so committed and knowledgeable as a resource.
I started with 0.5 mg of clonazepam at bedtime. After a week (which was a couple of days ago) we added a second dose, so I am now taking 0.5 mg every 12 hours, for a total of 1 mg a day. (I am supposed to call in tomorrow and give a report on my progress, so I will find out what to do next then.) Because we don't yet know if this medication will work well for me, my doctor focused mainly on whether it would be safe for me to take based on my health history and what the immediate side effects might be rather than what a therapeutic dose would amount to or what the risks might be of taking it long term. If it turns out that clonazepam does the trick, then I will have a talk with him about the steps we can take to minimize the long term effects. The way that I see it, there are risks with every medication (though some are worse than others, obviously) and one must weigh the benefits of a medication that actually works and improves one's quality of life and ability to function with the sometimes scary risks involved. One thing to keep in mind is that there are risks involved with suffering from irretractable pain as well, so that is something to be considered. I think the best we can all do for ourselves is to strive to find a balance that works well for us and allows us to have as full of a life as possible.
Take care, everyone.
Chris
Hello again, I just realized that I completely spaced on the question about building a tolerance to this med, which is a concern of mine as well. Would anyone who has taken clonazepam for a while care to weigh in? Has your dosage increased dramatically since you started using this medication or has it remained relatively stable? Any thoughts from your doctors on the effects of long-term usage?
Thanks so much!
Chris
Chris K.....can you clarify if Dr. Graff-Radford directly approved use of clonazepam?
I have emailed Dr. Okeson to ask his opinion about a low dose/daily (.25mg) at bedtime.
I started last night. More sedating. Drymouth but tolerable. Not as smooth as lorazepam.
My internist signed off on it but I must say that he is a little quick to use meds. Previously, a functional
physician (same orientation as Dr. Mercola of the web) did not approve, nor did an australian oral surgeon who was an early writer of TN and tooth pain, nor did a senior neurologist with a specialty in sleep management. That's a lot of negatives. The benzo class of meds have a terrible hx of being associated with rx drug abuse and difficulty with getting off this medication. I regard what I am doing, and have been doing with lorazepam, as a dangerously slippery slope. My line in the sand for clonazepam is .5mg. I encourage anyone using any of the benzo's to have a steel like determination of setting their own limits.
Hi Wm, I haven’t seen Dr. Graff-Radford myself, but Crystal says in one of the posts above that he is her doctor and that he prescribed Klonopin for her. We are all so different when it comes to medications and what works for each of us, so if you prefer the lorazepam, then it may be that clonazepam may not be the answer for you (or for me, for that matter). It’s too bad that there isn’t some sort of test to determine which type of medicine would be most effective for each of us so that we wouldn’t have to go through all of this to try to find out.
I would very much like to learn what Dr. Okeson thinks of your taking this med, if you don’t mind sharing this information.
Take care,
Chris
Yes, Dr. G-R directly had me take Klonopin, and he's the one that said to "swish for three minutes then spit or swallow." I saw him last Thursday and even asked to make sure I was still doing it.
Chris, I wouldn't worry about tolerance. As long as you're not taking more than prescribed, you should be fine.
Chris K and crystalv,
This is a recent reply...I prefer not to name the source since I have not asked for permission to quote but I wanted to share as soon as possible. See below.
Personally, I do like lorazepam(2mg). I will continue to take it every other night and then use clonazepam/low dose of .25 to .5mg on the other nights. As you and others state, medication response can be unqiue to each of us, so it's a matter of trial and error. Benzo's have a very bad reputation for abuse and escalating tolerance. I wouldn't underestimate the risk. On the other hand, it may be unfortunate that the media has scared physicians from encouraging us to use some meds, responsibly.
Fwiw, after almost five years of exploring sources of help for atypical tn, I have a lot of respect for Drs. G-R, Okeson, and another oral pain specialist...Henry Gremillion. I believe all three have strong developed clinics at about the same time.
I assume that those posting on this particular thread share a history of having constant dental like pain that is neuropathic? It would be nice to have a community of the atypical category. Is there one? If so, I'd find it easier to check in from time to time. Personally, I don't want to over focus on pain and I find that web searching can be counter productive...at least, for me.
Actually there is more evidence in the literature supporting the use of clonazepam then lorazepam for neuropathic pain conditions. It can be taken before sleep which can assist in sleep.
This is interesting topic.
At my last attack,out of desparation it took my partners diazipam to get me through a few days till I could physically get to doctors.I did tell my doctor but she said it wouldn't have helped me.
I said to her" I slept a lot-it got me through" she gave me tegratol.This completely did me in.Loss of speech,balance short term memory and after a month I refused any more.She then tried nortriptyline which seems to be keeping pain at bay.Get some pain in waves.
I seem to have type 2.I'm loathed to try the diazipam (which arn't mine)with nortriptyline.Don't know if they can be mixed.
My doctor does not seem to know alot about it.She is a GP.But she is not refuring me on to anyone else.She might if I get a bad attack.I may just go to casualty if/when it happens again.
Crystal, thanks for the reassurance on building tolerance to this med. I definitely won’t be taking more than is prescribed, so no worries there.
Wm, I am not a doctor and therefore my opinion on this is not medically credible, but I think that alternating the lorazepam and clonazepam sounds like a reasonable compromise. It my enable you to get your pain levels under control without some of the risks that you are rightfully concerned about. I will keep my fingers crossed for you that this leads to the pain relief that you so deserve. In terms of my own situation, while I have tooth-like pain during most of my waking hours, it is not 24/7. My profile page has all of the details in case you are interested.
Jacksharky, I am so sorry to hear that you are in such pain. I have found my pharmacist to be so helpful in researching drug interactions (which in my case mostly involves supplements). There is also a website that is listed under the face pain tab up above that is worth looking at. That said, combining certain medications can be so dangerous that it is very important to always involve your doctor, which I am glad that you have done. I urge you to press for a referral to someone who has the training to deal with a condition such as this. It can make all of the difference in the world. I will be sending you good thoughts in the hope that you find relief as soon as possible.
Take care, everyone.
Chris
Chris K. et al,
The benzo's....are my best friend, meant to be spoken like a cautious patient. It's encouraging to see this medication class get more attention, and now I see that this thread is part of the ATN community...also, helpful.
Kudos to frequent responses from chris k and crystal...there's attention to detail, warmth, and a groundedness...all not easy for many of us coping with pain, disruption, and med side effects. Thank you.