My story

I was prescribed lorazepam 1MG a day for 30 days for anxiety in January 2010. I took it for 17 days, tapered to .5MG for several days then stopped. Within 24 hours of discontinuing Lorazepam, I began to experience burning, numbness, burning numbness (an entirely different sensation from burning and numbness), tingling, leaden heaviness and electric shock sensations in right forehead, around the eye and on to top of head; burning tingling in left lower and upper lip. Aural fullness, spasms in the ears, dizziness, tinnitus and barotrauma. These sensations vary in intensity, but never totally subside. These sensations have been persistent for three years. They appear to be affecting the opthalmic branch of trigeminal nerve on right side and maxillary and mandibular branches on left side. Could possibly be affecting the facial nerve as well, although I am not sure. Lorazepam withdrawal appears to have been the proximate cause. I have seen a neurologist, neuropshychiatrist, multiple ENTs and a headache specialist. All are utterly clueless as to what is wrong with me. I was told that I have "atypical facial pain" by the headache specialist, but that diagnosis is unconvincing. I have been told in no uncertain terms that I do not have Trigeminal Neuralgia. The doctors don't know what to do with the fact that this emerged as a result of Lorazepam withdrawal. Some totally dismiss this; others are more open, but still don't know what to do with it. I have been offered gabapentin, amitryptline, depakote and bachlofen, but I am fearful of these drugs because of my reaction to lorazepam. Nobody will give me carbamazepine (not that I particularly want that either). I am totally unsure of how to proceed with this. I don't consider any suggestion that this is psychogenic in origin very serious.

There IS no such medical entity as "atypical face pain". The label might as well be "damned if I know what this is" pain. Likewise, use of the term "psychogenic" should be sufficient grounds for washing out a medical doctor's mouth with lye soap! There is no such animal in chronic pain patients. And "conversion disorder" is an even more stupid if not outright evil mythology. I can send you articles by psychiatrists who make these points in arguing against the pending revisions to criteria for so-called "complex somatiform symptom disorder" as an axis in the Diagnostic and Statistical Manual of the American Psychiatric Association.

Your symptoms and the reactive pattern to Lorazepam are not common in TN. But that doesn't mean you don't have trigeminal neuropathic pain or trigeminal neuralgia as one component of a larger complex such as a Cephalgia, Cluster Headache, or SUNCT headaches. Lorazepam is a benzodiazepine medication normally used as an anti-anxiety agent, rather than in the treatment of neuralgia. It's got a pot load of side effects, some of which overlap those you have listed. My speculation (as an informed layman, not a physician) is that you may be hyper sensitive to it. Please spend some time at rxlist.com, reading up on it.

One bit of good news: the anti-convulsant medications like Tegretol (Carbamazepine), Trileptal (Oxcarbamazepine), and Neurontin (Gabapentin) are in a different class of meds, and Amitryptyline is in yet a third relative to the Benzodiazepines. My instinct here is that if your physicians are willing to start you out on a very low dose of any of these meds, and taper you up gradually over a period of weeks rather than days, you might find some relief from at least part of your spectrum of symptoms. I also wonder why nobody has tried you on one of the anti-migraine meds (Indocin, others newer).

You are not receiving the recognized standard of care, Rosa. You may have to go to a major regional medical center such as Mayo or Johns Hopkins or Cedar Sinai to find a team that is qualified to help you. But there really is help out there.

Go in Peace and Power

Red

Thanks for that reply. I agree with your rejection of "psychogenic" causality. Its an unfalsifiable concept that flunks just about any test for scientificity. Unfortunately, it has so permeated our culture that it is difficult to get away from. In my case, this assumption is made worse by the fact I was given Lorazepam for anxiety in the first place. Anxiety is part of my overall condition today, but there is no way in heck it is causing these strange neurologic sensations on my face. Far too often it seems, anxiety, stress, depression, etc. are used as a "deus ex machina" by doctors, who simply can't explain your symptoms medically. Its a sad state of affairs to be sure.

Thank you also for the advice on how to proceed from here. I think out of all the medications that have been discussed, gabapentin seems the most benign, but unfortunately for me--it does appear to come with some risk of a "benzodiazepine like withdrawal syndrome." I don't know likely this is, but given my possible hypersensitivity to benzos, I think I would prefer something with a mechanism of action that isn't primarily on the GABA system.

I have appointments at Mayo and Hopkins scheduled in the coming months. We will see how it goes, but I am not looking forward to explaining to another doctor how I think Lorazpeam may have caused "neuralgia of the trigeminal nerve" that isn't exactly trigeminal neuralgia!

You pretty clearly have something else going on in addition to TN, Rosa. Finding out what that something is, ought to be high on the list of medical priorities for your case. However, if you are going to gain control of your pain, my own intuition is that you're going to be forced to embrace either the GABA system or anti-migraine meds as the core program.

If the psychogenic thing ever comes up again in discussion with a doctor, you can inform him or her that no less an authority than the Medical Advisory Board has published a strong repudiation of psychogenic pain in face pain patients, and re-defined "atypical facial pain" as "facial pain of obscure origins". There is a short paper on the TN Association website in their Knowledge Base.

Regards, Red

Thanks again Red,

I think you are probably right. Actually, one neurologist mentioned "vestibular migraine" as a possibility, but there seems to be some disagreement as to whether this should be treated as "neuralgia" or as an atypical form of headache. I will probably try gabapentin at some point soon, but I am worried that the doctor's won't be willing to go slow enough. One doctor has told me that gabapentin is so mild that it probably won't even help. I think he is only willing to prescribe it, because he thinks it will fail and then I will be willing to try his preferred treatment for my condition: SSRIs. I don't think I will be messing with those though.

Rosa, one of the things that we try to encourage at Living With TN, is a sort of "balanced view" of medications. They have side effects, sometimes severe. In a few cases we see reports of truly toxic reactions. But at this stage of medical knowledge, they are pretty much what we have, imperfect as they are. SSRIs have a role to play for some people, some of the time. But if I'm reading the literature correctly, they are not the preferred first line of approach to either trigeminal neuropathic pain or migraine. They tend to be prescribed as adjuncts to anti-convulsive meds, tricyclic antidepressants which have a cross-action on pain, and migraine preventatives (which are themselves generally not preferred if the pain is primarily trigeminal in distribution and neuralgic in character).

There is a lot of information in our "Face Pain Info" tab and its sub-tabs. I encourage you to do some further reading there, and to run key words in our on-site search engine at the top right of every page.

Go in Peace and Power

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

Resident Research Analyst, LwTN

Rosa, gabapentin is helping me but I have to increase it very slowly. I started at 300 mg daily, then the second week tried to go to 600 mg daily, but I couldn't tolerate that much of an increase, so the neurologist gave me 100 mg tabs and I'm taking them. Even if it's a slow improvement, I will take it. I have irritable bowel and it seems anything I put in my mouth right now is upsetting the stomach and bowels. So I will back down and slow down with the Neurontin (gabapentin). I hope it helps you and they can find a way to ease your pain. Keep us posted.

Thanks for that typqueen. That's helpful.

Yes, I agree with you Red. At this stage of medical knowledge, what more are we to do? The problem for me is that it is hard to get someone with an M.D. after there name to take the Lorazepam reactions seriously. Even if they do, they don't know what to do with it, so they "bracket it" and fail to consider that maybe my case might require a revision of the script. I have been told more than once that I am "misattributing" my symptoms to Lorazepam. Well, that's horse hockey. They emerged within 24 hours of stopping the medication and never fully resolved. There is an Occam's razor problem there for anyone who wants to think that the Lorazepam was not involved at some level. Given the cavalier attitude of many of the doctors to this, I think my caution is warranted--but in the end, the need to get some relief and go on with life will probably trump those fears. The question for me right now is gabapentin or carbamazepine (first, I would have to find someone willing to prescribe it) ?.



Richard A. "Red" Lawhern said:

Rosa, one of the things that we try to encourage at Living With TN, is a sort of "balanced view" of medications. They have side effects, sometimes severe. In a few cases we see reports of truly toxic reactions. But at this stage of medical knowledge, they are pretty much what we have, imperfect as they are. SSRIs have a role to play for some people, some of the time. But if I'm reading the literature correctly, they are not the preferred first line of approach to either trigeminal neuropathic pain or migraine. They tend to be prescribed as adjuncts to anti-convulsive meds, tricyclic antidepressants which have a cross-action on pain, and migraine preventatives (which are themselves generally not preferred if the pain is primarily trigeminal in distribution and neuralgic in character).

There is a lot of information in our "Face Pain Info" tab and its sub-tabs. I encourage you to do some further reading there, and to run key words in our on-site search engine at the top right of every page.

Go in Peace and Power

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

Resident Research Analyst, LwTN

Well put Red!

Richard A. "Red" Lawhern said:

There IS no such medical entity as "atypical face pain". The label might as well be "damned if I know what this is" pain. Likewise, use of the term "psychogenic" should be sufficient grounds for washing out a medical doctor's mouth with lye soap! There is no such animal in chronic pain patients. And "conversion disorder" is an even more stupid if not outright evil mythology. I can send you articles by psychiatrists who make these points in arguing against the pending revisions to criteria for so-called "complex somatiform symptom disorder" as an axis in the Diagnostic and Statistical Manual of the American Psychiatric Association.

Rosa, I'm not a physician so I shouldn't advise you concerning which med is best for you as an individual patient.

What I can say from 17 years of talking with face pain patients, is that Neurontin is generally better tolerated and is metabolized outside the liver (which tends to reduce chances for toxic allergy). However, it also tends to more "take the edge off" trigeminal pain, rather than to suppress it completely. My wife switched at her own request from Tegretol to Neurontin, and has successfully managed a bi-lateral mixture of typical and atypical pain for the past 12 years. She is not without pain, but has twinges rather than sharp stabs or the grinding, burning 24-7 pain that tears your life up in shreds. Others I have talked to haven't had that success. It's a trial and watchful observation business.

Regards and best,

Red

I understand Red. The consensus of the doctors I have seen so far seems to be that carbamazepine has too many potentially serious side effects to justify it in my case (bone marrow suppression, etc.). One doctor told me he "needs something more," before he can justify carbamazepine. I think that was an unfortunate choice of words. What he should have said was, "I need something different." My pain may not be the absolutely excruciating pain of classical TN, but it is no less serious in its persistence and protracted nature. In any other circumstances, I would agree with the decision to try gabapentin first--but I am concerned that the history of possible benzo hypersensitivity might call for a rethink of that.

Rosa, the chemical structure of Gabapentin isn't even remotely similar to that of the benzodiazepines. While it's reasonable and prudent for you to avoid the benzo's, given your history with them, it may not be reasonable to extend your caution to all of the meds used in pain control.

Regards, Red

You may be right Red.

Its been three years since my encounter with benzos. I understand that there is an entity called "protracted withdrawal syndrome," but it is very controversial. Not a single doctor I have been to thinks the benzos have anything to do with my current condition. I think in theory that it is possible that the de-sensitization of the GABA receptors caused by exposure to the benzos could cause neuralgia, but should it last for three years? I don't expect the doctors to have the answer to everything, but if I can't get one to take the benzo connection seriously, then it is simply not medically actionable.

Going back on benzos after three years of abstinence doesn't seem like the best course of action. In fact, my fear of taking gabapentin is that it is too close in action to benzos and hence only likely to start the entire syndrome over again.

No, you’re right - it’s NOT psychogenic!

One of the most challenging aspects of this condition is finding a neurologist who knows what they’re talking about! Took me 3 years. I’m sorry you’re having such a difficult time! Please go to the “Doctors We Recommend” sign on the main page. There may be a doctor in your area who is more familiar with neuropathic facial pain than the doctor you’ve seen.



I had severe reactions to Tegretol and every other anticonvulsant except Gabapentin aka Neurontin. Fortunately, I was in the hospital and they were right on top of it. Some medications work for some where others don’t. It may also take some trial and error to get the doseage right. Everyone’s different.

Best of everything!

Gloria - what are you taking (medication wise) since you couldn't take those meds? That's the struggle I'm having right now, finding what I can take that I won't react to.

Currently on 3,000 mg Gabapentin/Neurontin and 20 microgram Butrans patch. I realized how well the Gabapentin/Neurontin was working when my pain management doctor took me off all my meds for 24 hours!!! It was a nightmare! I’m very pleased with the current results.



typqueen said:

Gloria - what are you taking (medication wise) since you couldn’t take those meds? That’s the struggle I’m having right now, finding what I can take that I won’t react to.

Benzo withdrawal is not controversial, but protracted withdrawal is. I have been told benzo withdrawal only lasts 2 weeks. You're symptoms can not possibly be due to the benzos at three years, etc. On other forums, I have cone across several people who claim to have developed persistent facial pain in the aftermath of benzo use, but this is not something the medical community accepts.

Thanks. I have read all of that before, hence my reticence to take any more drugs. But not a single doctor I have seen takes that seriously. They say benzo withdrawal lasts no more than two weeks; any symptoms that occur after that time period have nothing to do with benzos and are most likely the return of the original anxiety disorder (hence, they are psychogenic).