Atypical Pain Switching Sides

Hi, has anyone ever experienced their pain swithing sides? My Atyical Facial Pain was on the right side for 6 years and has now switched to the left. I have been experiencing most of my pain now on the left and at times it will go back to the right and even both sides at the same time now. I am supposed to be going in for a nerve block in February. We only spoke about my right side because that is the side I was always having pain on. Now I don’t know what to do. It doesn’t make sense to get a nerve block on the side not having pain. Does anyone know if you can get a nerve block on both sides at the same time? I am hoping he will do my left now instead. So confused by all of this!

I actually experienced this night before last and since then…it has been on my left side consistently since 2008 and actually since the first outbreak in the laste 90s…it was inactive from the late 90s until 2008…sporadic pain from 2008 until this past Sunday…suddenly night before last it grabbed my right side with the left side completely calm with no numbness, tugging, tightness, heaviness, etc. There is never pain at the same time on both sides, but there is pain on both sides at different times now. I intend to contact the doctor. Prior to the right side having pain I was concerned that it was a bad tooth, as so many of the symptoms mimic one another and I have had dental issues from time to time, but the pain on the right side confirmed this is not related to dental issues. There is Atypical Trigeminal Neuralgia. I seem to recall reading about the progression of the disease sometimes including it eventually impacting both sides, but that could be wrong. I am trying to confirm that and will repost if I locate that again. Let me know if you find anything on that.

Lori,

Not just atypical pain; my pain is mostly typical. I agree with Amy. I definitely read that the progression of TN may include pain on both sides and may start to include atypical pain. The pain on my other side started in less than two months after my pain becoming very severe one day and the pain continuing to escalate. Then the atypical pain started the week I had my first nerve block. But the pain on my other side is very minor in comparison and pretty infrequent. But the pain is in almost the same areas as my primary side. I don’t know if the doctor will give you nerve blocks at the same time. But you may insist instead of asking especially if you feel the pain is about the same and one side isn’t any worse than the other.

Liz

Hi guys,

Thanks for the reply. Over the 6 years I had the pain on the right side I would get some minor pain on the left side however I really just chopped it up to maybe a sensitive tooth acting up because it never was really intense like the right side. But now after all this time I guess the left side has decided to become just as worse as the right. It is just frustrating because I wish it would just stay on one side. Also, I have read that in Atypical cases the pain can spread to a larger area of the face and even on the other side over time. I think I read it in the book "Striking Back". My pain has always been Atypical. Never have I gotten the electric shocks that people describe. My pain is always constant and achy, throbbing, crushing, burning type of pain. I would rather have the electric shocks. At least I would get some breaks in between. I know that is horrible to say but I hate the constant pain.

Although pain on both sides at the same time is somewhat less common than on one side, I rather often hear of pain developing or "switching" sides. My wife deals with that pattern. Basically, you simply have the same type of problem with two nerves rather than just one. Nerve blocks can be administered on both sides at the same time, but it generally wouldn't make sense to administer one in an area that isn't presently painful. Your neuro people should know that. Likewise, be aware that multiple stellate ganglion blocks may need to be administered in a series rather than only once, to get the best effects in pain management.

Go in Peace and Power

Red Lawhern, Ph.D.

http://www.lawhern.org

Hi Red,

thanks for the info. I am getting my nerve block done at a pain clinic here in MA. The Lahey Clinic. He said he was going to do a mandibular nerve block with a long acting steroid. He didn't say he was doing a stellate ganglion block. I believe this is different right. My pain is in my 3rd branch on the right and left side. It can switch sides at a moments notice. It really is crazy. But then again everything about TN is crazy isn't it???

Richard A. "Red" Lawhern said:

Although pain on both sides at the same time is somewhat less common than on one side, I rather often hear of pain developing or "switching" sides. My wife deals with that pattern. Basically, you simply have the same type of problem with two nerves rather than just one. Nerve blocks can be administered on both sides at the same time, but it generally wouldn't make sense to administer one in an area that isn't presently painful. Your neuro people should know that. Likewise, be aware that multiple stellate ganglion blocks may need to be administered in a series rather than only once, to get the best effects in pain management.

Go in Peace and Power

Red Lawhern, Ph.D.

http://www.lawhern.org

Lori,

I believe the two procedures may indeed be different. It would be wise for you to inquire of your physician concerning his experience with the outcomes of cortico-steroid nerve blocks versus Lidocaine or Phenol. Steroids are anti-inflammatory drugs that act differently and generally for longer periods than the anesthetics. But from what I've heard and read, a sequence of nerve blocks with anesthetics such as Lidocaine have a fair record of extended pain relief (weeks) in patients who have facial neuralgia.

You may also want to have the doctor explain the differences in placement that are implied between Stellate ganglion or spheno-palatine nerve block versus blocks delivered to a specific branch of trigeminal distribution such as the mandibular nerve. Does either placement have a superior outcome in more patients, than the other?

Although both typical and atypical TN patients can experience pain which seems to "move" between the two sides of the face, what is actually going on may be better described as a process that can affect both sides by compromising the functions of the two Trigeminal nerves. Some patients experience pain simultaneously on both sides. Others have pain at various times in each, which are outwardly unrelated in sequence. My wife happens to be one of the latter. Relatively few patients present with simultaneous pain on both sides. But the "rarity" may not be as significant as was thought 30 years ago.

From what I've heard from patients as well as read from literature, there is definitely a sense of "progression" in facial neuralgia. However, the progression for most patients tends to be one of greater and greater difficulty in managing pain by medication, in whatever physical distribution it initially presents. Likewise, some physicians have written of "atypical" trigeminal neuralgia (with constant, dull, grinding, burning pain) as a sort of precursor to "typical" pain patterns with the classic "stabbing electric-shock bursts or volleys of pain." Recently, the term pre-trigeminal neuralgia has largely fallen out of use.

Likewise, there is a more acknowledgment that distinctions between neuralgia (an inflammatory condition) versus neuropathy (pain response to mechanical damage) are often artificial. It may be useful to regard "classic" or "typical" TN as merely a form of neuropathy in which the removal of direct contact between the nerve and blood vessels in the region of the nerve's emergence from the brain stem, is often successful in reducing or eliminating pain. With "atypical" TN, it appears that other or additional neurochemical processes may be at work, which are not as directly or successfully addressed by the mechanics of the Microvascular Decompression procedure.

In both types of "TN", there is also evidence in the medical literature that protracted, prolonged experience of facial pain may be associated with reduced probability of later successful surgical outcomes. Some physicians quote seven years as a threshold of concern beyond which delays in surgery may become counter productive. However we know of patients who are treated successfully by medications alone for periods of 20 years or more. It is not now clear what distinguishes people who suffer from progression, from people who don't. It is possible (though at present speculative) that a form of central nervous system "sensitization" sets in over time, as chronic pain gradually compromises many nerve functions and generates multiple embedded nerve toxins that compromise separation of various chemical channels in nerve fibers. Research being done on Complex Regional Pain Syndrome (CRPS) tends to reflect this emphasis.

Thus it is reasonable for patients to point out to their doctors that the provision of EARLY and effective pain relief by whatever means necessary should be considered a requirement of best practice, for the avoidance of down stream worsening of pain levels, and development of new modalities of relatively intractable pain.

I hope this gives you a useful perspective. Please discuss the implications of this input with your doctor, to obtain his/her opinion on which forms of nerve block are most appropriate to you as an individual, and for what reasons, based on what observed and documented patient outcomes.

Go in Peace and Power

Red

Red,

I appreciate all of this info. However, I do find alot of what you say a bit confusing and hard to decipher. I did not ask any questions of the physician at the time. I wish I had asked him why he decided to do this particular nerve block and what exaclty he would be injecting. I basically heard him say nerve block and was ready to go. I just want to try something. I think the purpose of him doing the steroid is to hopefully get longer lasting relief instead of doind a series with less relief. I am basically putting my faith in him and hoping that as a physician who has done many nerve blocks knows what he is doing. Not sure how I can ask these questions of him now because I am already scheduled and I will not be seeing him again until surgery day. But now I feel more confused and not sure of what to do? Is there a way you could list for me in more simpler terms of exact questions I should be asking of him concerning the nerve block?

Richard A. "Red" Lawhern said:

Lori,

I believe the two procedures may indeed be different. It would be wise for you to inquire of your physician concerning his experience with the outcomes of cortico-steroid nerve blocks versus Lidocaine or Phenol. Steroids are anti-inflammatory drugs that act differently and generally for longer periods than the anesthetics. But from what I've heard and read, a sequence of nerve blocks with anesthetics such as Lidocaine have a fair record of extended pain relief (weeks) in patients who have facial neuralgia.

You may also want to have the doctor explain the differences in placement that are implied between Stellate ganglion or spheno-palatine nerve block versus blocks delivered to a specific branch of trigeminal distribution such as the mandibular nerve. Does either placement have a superior outcome in more patients, than the other?

Although both typical and atypical TN patients can experience pain which seems to "move" between the two sides of the face, what is actually going on may be better described as a process that can affect both sides by compromising the functions of the two Trigeminal nerves. Some patients experience pain simultaneously on both sides. Others have pain at various times in each, which are outwardly unrelated in sequence. My wife happens to be one of the latter. Relatively few patients present with simultaneous pain on both sides. But the "rarity" may not be as significant as was thought 30 years ago.

From what I've heard from patients as well as read from literature, there is definitely a sense of "progression" in facial neuralgia. However, the progression for most patients tends to be one of greater and greater difficulty in managing pain by medication, in whatever physical distribution it initially presents. Likewise, some physicians have written of "atypical" trigeminal neuralgia (with constant, dull, grinding, burning pain) as a sort of precursor to "typical" pain patterns with the classic "stabbing electric-shock bursts or volleys of pain." Recently, the term pre-trigeminal neuralgia has largely fallen out of use.

Likewise, there is a more acknowledgment that distinctions between neuralgia (an inflammatory condition) versus neuropathy (pain response to mechanical damage) are often artificial. It may be useful to regard "classic" or "typical" TN as merely a form of neuropathy in which the removal of direct contact between the nerve and blood vessels in the region of the nerve's emergence from the brain stem, is often successful in reducing or eliminating pain. With "atypical" TN, it appears that other or additional neurochemical processes may be at work, which are not as directly or successfully addressed by the mechanics of the Microvascular Decompression procedure.

In both types of "TN", there is also evidence in the medical literature that protracted, prolonged experience of facial pain may be associated with reduced probability of later successful surgical outcomes. Some physicians quote seven years as a threshold of concern beyond which delays in surgery may become counter productive. However we know of patients who are treated successfully by medications alone for periods of 20 years or more. It is not now clear what distinguishes people who suffer from progression, from people who don't. It is possible (though at present speculative) that a form of central nervous system "sensitization" sets in over time, as chronic pain gradually compromises many nerve functions and generates multiple embedded nerve toxins that compromise separation of various chemical channels in nerve fibers. Research being done on Complex Regional Pain Syndrome (CRPS) tends to reflect this emphasis.

Thus it is reasonable for patients to point out to their doctors that the provision of EARLY and effective pain relief by whatever means necessary should be considered a requirement of best practice, for the avoidance of down stream worsening of pain levels, and development of new modalities of relatively intractable pain.

I hope this gives you a useful perspective. Please discuss the implications of this input with your doctor, to obtain his/her opinion on which forms of nerve block are most appropriate to you as an individual, and for what reasons, based on what observed and documented patient outcomes.

Go in Peace and Power

Red

Lori,

Let's try s reduced or simplified script for your encounter with the surgeon:

"Doctor, I've been reading up on nerve blocks. I really need help with this pain, but I also have questions. Was there a reason you recommend injection of steroids rather than Lidocaine? And have you seen better patient outcomes with placement of blocks in the Mandibular branch rather than further back in a nerve ganglion? How often do patients like me actually get long lasting relief from this procedure?"

Then let him explain his rationale to you. If he doesn't HAVE one, then walk out of the room and go looking for a physician who can explain why he's doing what he's doing before he sticks a needle through your cheek.

I understand what you meant when you wrote "I am basically putting my faith in him and hoping that as a physician who has done many nerve blocks knows what he is doing." It's often very hard for pain patients to overcome the fearfulness of their situation, and become active in the management of their own care. All the same, I respectfully suggest that "putting your faith in" a physician may not generate the best results for you over the long term. Patients who become members of their own treatment team generally do better than those who are more passive in their approach. It is never out of order to ask a professional whom you employ, to provide objective evidence for the effectiveness of the procedure he's charging you to perform -- whether from medical literature or from his own experience.

It may be that I am a bit too military in my approach to these things, Lori. I tend to kick tail and take names on relatively little provocation. I've not been overly impressed with the knowledge and patient manner of a lot of doctors whom I've heard described in postings to places like this one. If my approach on such matters doesn't work for you, then go with what you 've got and observe the outcomes with attention. If you're willing to report back your results to an old curmudgeon like me, I would be very interested in hearing how you do.

Go in Peace and Power

Red

Lori I had face injection’s for both side’s of my face I had buring in both cheek bone’s. My pain semm like it goe’s across the Bridge of my nose with Pain in front of the small bone of my ear across my face feel’s as if some one cut it with a razer blade , withother symtome’s. I asked the Nerologist if he thought these in jection’s would help. He could not answer at first then I asked again I wanted some kind of answer . He said It is a hit and miss thing what work’s for some may not work for others. I found what work’s for me is research and ask question’s look’s like your doing both . Be in charge what your will to try . Hope you find Pain Relief soon. Shirley

Hi Lori, I am new to the site and very desperate, loke you I have always had left sided pain but all of a sudden at Christmas it changed to the right side and isvery constant very sore and very mind consuming, i am still awaiting definite diagnosis but I have been told it is type 2 trigeminal neuralgia or atyuical facial pain, I have had about 7 teeth removed thinking it was toothache and the pain is still therem i have bad TMJwhich is another possil cause/factor, I am very scared incase it is a brain tumour or something and causing more anxiety which is probably making the face pain worse?? but yes if I have what you have which sounds identical then it does travel to other side, like you i dont have the electric shock pain only constant dull deep aching like toothace especially around my teeth, any advice or comfort from anyone would be so greatefully recieved, never been this scared before, I have 5 beautiful kids and I am scared there is a sinister cause although it makes sense that the pain is caused by dental work and numerous anaesthetics but difficult to apply logic when your mind races to worst case scenarios, keep well,x

Lori Branco said:

Hi guys,

Thanks for the reply. Over the 6 years I had the pain on the right side I would get some minor pain on the left side however I really just chopped it up to maybe a sensitive tooth acting up because it never was really intense like the right side. But now after all this time I guess the left side has decided to become just as worse as the right. It is just frustrating because I wish it would just stay on one side. Also, I have read that in Atypical cases the pain can spread to a larger area of the face and even on the other side over time. I think I read it in the book "Striking Back". My pain has always been Atypical. Never have I gotten the electric shocks that people describe. My pain is always constant and achy, throbbing, crushing, burning type of pain. I would rather have the electric shocks. At least I would get some breaks in between. I know that is horrible to say but I hate the constant pain.

thanks Lori in posting this discussion as I am now experiencing the same dreaded pain on the opposite side which has now got me very worried as I am booked in for MVD next month. I was hoping that I am a success story with the MVD and then get off the medication to have another longed for baby. But with the pain occurring on the other side, this may not happen. So reading the above discussion it is normal for atypical TN to change sides? I was diagnosed with type 1 TN even though most of my symptoms are more type 2. Luckly for me Lyrica is working well enough to keep the pain at a more tolerable level than previous symptoms. Should I go back to the neurologist to get a re-diagnosis. Have talked to the GP but they have fobbed it off as a random thing and my oestopath is a little concerned especially because of the upcoming surgery.

Red, did your wife have nerve blocks on both sides, if so, what were the results? Please advise. Thanks, Stef



Richard A. “Red” Lawhern said:

Although pain on both sides at the same time is somewhat less common than on one side, I rather often hear of pain developing or "switching" sides. My wife deals with that pattern. Basically, you simply have the same type of problem with two nerves rather than just one. Nerve blocks can be administered on both sides at the same time, but it generally wouldn't make sense to administer one in an area that isn't presently painful. Your neuro people should know that. Likewise, be aware that multiple stellate ganglion blocks may need to be administered in a series rather than only once, to get the best effects in pain management.

Go in Peace and Power

Red Lawhern, Ph.D.

http://www.lawhern.org

My wife has never had nerve blocks. She has been one of the neuropathic face pain patients for whom medications have been effective for 12 years without producing side effects so debilitating that she cannot function. What I know of nerve blocks, I have learned by talking with other patients and doing research on their behalf.

However, there are others now active at the website of the Trigeminal Neuralgia Association who have used nerve blocks. You can search a database of over 35,000 patient postings in their patient forums, to find somebody there who has first-hand experience with outcomes.

Regards and best,

Red

Stef said:

Red, did your wife have nerve blocks on both sides, if so, what were the results? Please advise. Thanks, Stef

Richard A. "Red" Lawhern said:

Although pain on both sides at the same time is somewhat less common than on one side, I rather often hear of pain developing or "switching" sides. My wife deals with that pattern. Basically, you simply have the same type of problem with two nerves rather than just one. Nerve blocks can be administered on both sides at the same time, but it generally wouldn't make sense to administer one in an area that isn't presently painful. Your neuro people should know that. Likewise, be aware that multiple stellate ganglion blocks may need to be administered in a series rather than only once, to get the best effects in pain management.

Go in Peace and Power

Red Lawhern, Ph.D.

http://www.lawhern.org

lori, i had bilateral pain which i thought was TN. it wasn't; it was my jaw muscles in severe spasm. the pain felt horrible, severe, crushing, aching, and it would flip flop on each side, sometimes every few minutes, sometimes longer, sometimes even shorter. the pain in my teeth felt like someone was holding ice cubes to them constantly. when i got a dental splint that put my lower jaw back into alignment, the spasms stopped and the pain went away over the course of a couple of weeks. dramatic reduction of pain by 50% was instant.

consider your jaw muscles before doing something invasive on the new side. atypical pain is not well managed invasively, never mind pharmacologically. i speak from experience.

good luck,

vesper