First Bite Syndrome

[oyabun]

I will be seeing a patient next week for eval and tx of first bite syndrome. First one I've seen. Any pearls or hints as to what to look for? Any ideas for treatment? pharmacologic, interventional or otherwise? Pt apparently had resection of a schwannoma from the vagus. Thanks in advance for any ideas.

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[Tenesma]

Head Neck. 2002; 24(11):996-9 (ISSN: 1043-3074)
Chiu AG; Cohen JI; Burningham AR; Andersen PE; Davidson BJ
Department of Otolaryngology-Head and Neck Surgery, Georgetown University Hospital, 3800 Reservoir Rd, NW, Washington, DC 20007, USA.

INTRODUCTION: First bite syndrome (FBS) is the development of pain in the parotid region after the first bite of each meal and can be seen after surgery of the parapharyngeal space. The cause is not clear but has been proposed to involve a loss of sympathetic nerve function to the parotid, causing a denervation supersensitivity of salivary gland myoepithelial cells. The purpose of this study was to review the records of 12 patients with FBS to determine any common features of the operations performed that would support this theory of parotid "sympathectomy" as an etiologic factor of FBS. METHODS: Retrospective review of 12 patients with FBS managed at two tertiary care centers. RESULTS: Twelve patients were diagnosed with FBS after surgery involving the parapharyngeal space. All patients had most of their parotid gland preserved. Six patients exhibited a postoperative Horner's syndrome, suggesting sympathetic chain interruption. The six patients without Horner's syndrome were found to have undergone external carotid artery ligation inferior to the parotid gland, suggesting an interruption of sympathetic innervation to the parotid gland itself. CONCLUSIONS: Preservation of parotid gland tissue and a loss of its sympathetic nerve supply, whether by disruption of the cervical sympathetic chain as evidenced by a Horner's syndrome or more selective denervation by ligation of the external carotid artery with its accompanying sympathetic nerve plexus, were common features of all patients. This series supports the concept of parotid "sympathectomy" as an etiologic factor in FBS.

 

[Tenesma]

i have never seen of it and heard of it until today - let me know what you end up deciding...

i would tell the patient to stop biting and just use a straw and live on Boost and Ensure ... 🙁

 

[Ligament]

AWESOME. Never seen it, best of luck.

 

[drusso]

Fascinating. Keep us posted. I wonder if Botox may be helpful?

 

[mille125]

Fascinating. Keep us posted. I wonder if Botox may be helpful?

my thoughts as well..it seems like botox would help...thanks for the interesting case

 

[Pain_doc]

I've had two patients with it. Both responded to AEDs. The first was treated with gabapentin (pre-pregabalin), the second with the newer drug. Both had undergone previous face/neck procedures.

 

[archtop]

I've got FBS, so perhaps my experience can help here. I had a sympathetic chain schwannoma (sp?) removed from the left side of my neck in April of 2006. Within a week I developed intense pain in the left parotid region any time I ate anything. Drinking water or coffee causes no pain. Citrus drinks are brutal, as is wine. Beer causes no pain. In my case, it lasted for most of the meal. I've tried gabapentin, but it made me forgetful, even with titration so I stopped it. I also tried acupuncture, to no avail. After 18 months, it seems to be starting to subside slightly, but it's hard to tell if I'm just getting used to it. Great for weight control, except I'm not overweight. What works? Sometimes it helps to massage that area while eating. Sometimes it helps to bite down hard on that side. Vodka works wonders - a good martini before a special meal makes a huge difference. 750 mG of Vicodin also seems to help, taken an hour before a meal, but I have the self control to limit this to once or twice a week maximum. I could see this being a problem for others. Please take this seriously, it's a truly debilitating syndrome. Good luck with your patient.

 

[axm397]

reminder - sdn TOS states that there should be no exchange of medical advice on this forum. Patients should go see a physician in person to seek medical advice.

 

[brori]

Never seen it.
These came to mind
superior cervical ganglion block
sphenopalatine ganglion block
glossopharyngeal nerve block
auriculotemporal nerve block

 

[lobelsteve]

Never seen it.
These came to mind
superior cervical ganglion block
sphenopalatine ganglion block
glossopharyngeal nerve block
auriculotemporal nerve block

You left out gasserian and stellate.

I do not see how Botox or any of the above would provide relief for a sympathetic denervation mediated pain state.

OK, I'll take that back. YOu could smooth talk me into an SPG by nature of the parasympathetic fibers running through there- though I have no idea if this would make it better or worse as far as symptoms go. Fortunately this appears sufficiently rare that we do not need to worry about EBM to try and help these patients out.

 

[windsurfer]

Don't know how much of an expert on this I am but someone cited the paper I co-authored above. I was looking for a paper I reviewed sometime back on botox injections into the parotid for FBS and stumbled upon your thread.

One of the theories behind the cause of FBS is that injury to the sympathetic supply to the parotid results in un-opposed parasympathetic stimulation during any action that usually would result in salivation. So, FBS is in someways a misnomer since some patients will complain of the pain even when they smell food or think about food. So avoiding chewing ie: using a straw may not be too helpful. The pain will usually fatigue quickly leading to the observation that it occurs only with the first bite or several bites of a meal. Many people will comment that certain foods are less likely to cause the pain than others thus they will start their meal with one of these foods then move on to more stimulating ones (cucumber has been mentioned by one of my patients). One of my patients came up with the idea of never stopping the stimulation so the fatigue of the reflex never goes away, so he chews gum all the time, thus he only has the pain first thing in the morning with the first piece of gum.

Since the theory is (and I emphasize it is only a theory) that the cause is sympathetic denervation I doubt that a procedure to cause more sympathetic denervation would help. Procedures such as tympanic neurectomy to interupt the parasympathetic supply to the parotid should work however in my experience the results are quite variable and while the procedure is easy to do I'm not sure the variable results are worth it. Sphenopalatine ganglion block would probably not work since the otic ganglion is what supplies the parotid. Auriculotemporal nerve block might theoretically work. I'm not a pain specialistic so I don't know how completely one would be able to block that nerve.

I have also seen variable results from gabapentin, haven't seen anyone that I recall who has tried pregabalin but don't see how that would be much different.

I have reviewed an as yet unpublished small study that claimed good results from botox injection into the parotid. The rationale was that it would lead to a temporary parasympathetic block similar to its use in hypersalivation syndromes and gustatory sweating (Frey's syndrome) after parotidectomy. Hopefully that will be published soon, until then I'll not say anything more.

I've had one patient who had a malignant schwannoma of the sympathetic trunk who had the FBS until his postop radiation happened. This makes sense since the radiation destroys the salivary tissue and the presumed root cause of the pain is the intense stimulation to salivate due to the un-opposed parasympathetic innervation.

This can be a very troublesome problem for patients. I take particular care to warn them of the possiblity of developing this whenever I am removing a tumor of the parapharyngeal space such as a schwannoma, paraganglioma or deep lobe parotid tumor.

 

[jwhero]

I too have FBS. In July 08 a schwannoma was removed from my sympathetic trunk nerve (which was totally severed) and now I have Horner's Syndrome and FBS. For me it happened immediately. My ENT thought he was going in to removed an enlarged lymph node so I didn't have the benefit of knowing what I was in for until I came to. Initially I had FBS pain just thinking about food. I saw a bumper sticker that said "waldorf" and I immediately thought of a waldorf salad and then experienced a painful, intense throbbing in my cheek. Now, 8 weeks later I just get pain when I eat. Tangy foods or anything flavorful are impossible for the first five minutes of eating. The pain which originates from the back left side of the base of my tongue eases up after that and I can eat my entire meal, though flavorful foods still hurt me. I, too, experience weight loss because I no longer snack. The trade off of intense pain isn't worth it. Massaging my check doesn't really help. My ENT suggested gum chewing but that option sounds too painful to even try. I also have another problem, which is I have intense pain if I bite down on anything or chew. About 6 weeks after the surgery I tried eating a peach. The pain made me cry. I haven't eaten a sandwich or meat since July, unless it comes in the form of chili or something very soft. I can't chewed on the left side of my mouth. Also, and here's the lovely part, I have intense sensitivity in my left upper and lower jaw. In the beginning I could feel the roots of my teeth all day long as well as pain/awareness in my left ear lobe. The root pain caused me to go on Neurontin but I stopped that due to side effects. Having been off that a month the pain in my jaw and the roots of my teeth have subsided. But now have heightened pain in my teeth and I can't brush them. My temporary solution is to use a topical gel (orajel) so I can brush my teeth. I plan to try acupuncture because I dread going on pain killers. The above referenced article should come out in Head and Neck magazine. If anyone has questions, experience, feedback I'm very interested in hearing from them.

 

[aharbour]

I too have FBS. In April08 a schwannoma was removed from my sympathetic trunk nerve(left part) and now I have Horner's Syndrome and FBS. so Initially I had FBS pain just thinking about food. When i cut onion, i feel pain because i thas strong smell . Flavour food make me fell much more pain (lemon orange salad..)Drinking is not heard that much but sometimes while drinking water if i dont sato drinking i feel pain. Massaging my check doesn't really help. Sometimes pressing on my ear lobe while chewing helps but not really . Bite something makes me fell pain or chew. I can't chewed on the left side of my mouth. . In the beginning, i waqs nt awrae that i have FBS only i had Horner syndromebut suddenly pain startand doctor gave me Neurontin. Neurontin help me because i was feeling so much head ache as well but it did not help for FBS. Doctor suggest me to use Tegretol but i did not because of the side effects.
I reaaly dont know how many years i will have it or i can stand with this pain.
[deleted for asking for medical advice]
By thw way i am not a doctor sorry about my english🙂

 

[axm397]

It's educational for us to hear patient perspective but please do not solicit medical advice on this forum.

 

[sandyr]

I've got FBS, so perhaps my experience can help here. I had a sympathetic chain schwannoma (sp?) removed from the left side of my neck in April of 2006. Within a week I developed intense pain in the left parotid region any time I ate anything. Drinking water or coffee causes no pain. Citrus drinks are brutal, as is wine. Beer causes no pain. In my case, it lasted for most of the meal. I've tried gabapentin, but it made me forgetful, even with titration so I stopped it. I also tried acupuncture, to no avail. After 18 months, it seems to be starting to subside slightly, but it's hard to tell if I'm just getting used to it. Great for weight control, except I'm not overweight. What works? Sometimes it helps to massage that area while eating. Sometimes it helps to bite down hard on that side. Vodka works wonders - a good martini before a special meal makes a huge difference. 750 mG of Vicodin also seems to help, taken an hour before a meal, but I have the self control to limit this to once or twice a week maximum. I could see this being a problem for others. Please take this seriously, it's a truly debilitating syndrome. Good luck with your patient.

I've got FBS but my surgeon won't admit that I have it. I had a right parotid bening tumor removed in July 08 and developed this syndrome afterwards. He says that because he didn't disect the carotid artery that I couldn't have FBS, but my symptoms are just as you and others have described. I haven't sought a second opinion as my surgeon said there was very little info on it and no-one is likely to know anymore than he does! It's good to know that I am experiencing the same pain caused by the same type of food as you are. My pain started in my neck originally, near where the tumor was removed. After a month or so, the pain moved up to the top of my right ear, and that is where the pain is felt now. If I squeeze the top of this ear I feel pain/strange tingling, I guess because the nerve here is damaged.
I am now also getting pain/pressure/headache upon waking behind and on my right eye brow - if I touch my eyebrow it feels bruised and painful, and I need to take pain medication to relieve the headache. I am going to see a neurologist. I hope I am not developing Horner's syndrome as a result of this operation.
For management of FBS, my neurologist prescribed Pro-Banthine which reduces salivary output, and I am meant to take this half an hour before meals. It dries my mouth up so much that I don't take it and food sticks to the inside of my mouth when I eat because I have no saliva - plus, it's very hard to know when you are going to eat in half an hour's time. I can't really comment on whether it did help with pain relief as I really only took the tablet a couple of times - it may have helped. I have found that pressing on my ear while I am taking the first bite or taking liquid does ease the pain a bit, and I try to eat whatever it is quickly, and I start off with small bites first to de-sensitise the area. If I stop eating the food for even a few minutes, and then go back to it, the pain comes again. If I take a large bite of food it hurts like crazy, so smaller bites are better, and avoid really citric food. I haven't lost weight - the pain hasn't stopped me eating or drinking. The next medication he suggested was Neurontin, but I am not too keen to start this medication full time. Another publication said a woman used carbamazepine 800mg per day and this helped the pain. She stopped the medication after 2 years and had no further relapse (C Cernea et al, "First BS after the resection of the styloid process"; Annual Mtg of the American Academy of Otolaryngology, California, 2007, Vol 117, no. 1, pgs 181 -182.)
I am worried about these headaches now and need to know if it is related to the post surgery. I am a layperson, and am keen to know anything else I can do to help the pain. Thanks

 

[axm397]

I am worried about these headaches now and need to know if it is related to the post surgery. I am a layperson, and am keen to know anything else I can do to help the pain. Thanks

it is against the TOS of studentdoctor to solicit medical advice on these forums. This is meant to be a forum where healthcare professionals and students can exchange opinion/ideas on various topics related to pain medicine. It's fine to post a patient's perspective but please do not solicit medical advice. I will also pm you the same warning but I wanted to post this publically since this is not the first time a patient has posted asking for medical advice on this forum.

 

[brori]

Appropriately, we can't make medical recommendations without examination. You say "layperson", but you are clearly of high intelligence. A general suggestion might be to research pain management societies and find someone near your home. Looking in local hospital directories under "pain management" might also prove useful.

 

[momof1]

I too have FBS. In Dec 08 a schwannoma was removed from my sympathetic trunk nerve and now I have Horner's Syndrome and FBS. I'm looking for help with dealing with FBS. A cure would be great. At this point it feels like the pain on my left side is getting worse. I have so many question but my doctor doesn’t have any answers. WILL THS GO AWAY?? I've tired gabapentin and it didn't work for me. Can someone recommend a doctor that can help? I'm in pain and eating is miserable.

 

[axm397]

I too have FBS. In Dec 08 a schwannoma was removed from my sympathetic trunk nerve and now I have Horner's Syndrome and FBS. I'm looking for help with dealing with FBS. A cure would be great. At this point it feels like the pain on my left side is getting worse. I have so many question but my doctor doesn't have any answers. WILL THS GO AWAY?? I've tired gabapentin and it didn't work for me. Can someone recommend a doctor that can help? I'm in pain and eating is miserable.

Again, it is against the TOS of studentdoctor to solicit medical advice on these forums. This is meant to be a forum where healthcare professionals and students can exchange opinion/ideas on various topics related to pain medicine. It's fine to post a patient's perspective but please do not solicit medical advice.

 

[kmjameson68]

I too had a Schwannoma (misdiagnosed as an enaleged lymph node for 4 years) removed, mine was February of 09. I do not have Horner's Syndrome but I definitely have First Bite Syndrome and its not fun at all. I have tried, heat, ice, pressure, massage and pain meds such as Tylenol but they don't help. The doctors have offered nerve meds such as Neurontin or the option of a Stellate Ganglion Nerve Block, however since I am not a fan of more medications and really dont want my neck messed with anymore, I passed on both. One thing I have that found that works to speed up the length of the pain is to distract myself so my brain is not 100% focused on the pain. I will squeeze a stress ball, walk around while eating or thump my foot.😱 The pain is less intense but it still definitely there.

Apparently Eastern Medicine (Accupuncture, etc) can help but since my insurance doesnt cover it I will just tough it out. I know it hurts more than anything (right up there with labor) but when I think of what else could have happened I am grateful. The Pain Mgmt doc told me that stress will make the pain worse and the pain will make me stress so its a vicious cycle. Its definitely good weight loss but its truly altered my social life as I dont want to ruin others meal's by my impression of a victim of someone who has a voodoo doll of me.

The best thing that a doctor can do is to be supportive. Luckily my doctor is that. I have no idea how I would have gotten this far without him.👍

 

[1runr]

I had a Carotid body tumor removed in March of 09. It turned out to be a Schwanoma connected to the Sympathetic nerve chain. The nerve was dissected and three days later FBS set in. I am currently starting (after much research), Stellate Ganglion Blocks using flouroscopy. I have had two injections so far. The first did not see much of a result. Yesterday I had another (under anesthesia), along with a nasal sphenopalatine ganglion block . I had a few more hours of relief with a sore throat..The doctor would like to see me twice a week to get on top of it, but I can only schedule surgery once per week.I'm going in for another nasal sphenopalatine ganglion block tomorrow. I'm thinking that eventually I will up for an injection sphenopalatine ganglion block under flouroscopy.
to be continued

 

[acc support]

My partner developed first bite syndrome following the removal of a tumour from the roof of his mouth and the rebuilding of his palate using a 'free flap' from his thigh. He also had a neck dissection to remove a few tumours there. His overall diagnosis is adenocystic carcinoma, a rare cancer of the salivary glands.

His advice to anyone with this syndrome is to start the meal with something very bland like scrambled egg with no salt. Then he finds he can eat relatively normally.

In addition some privacy at the beginning of every meal is a neccessity.
The medical interventions suggested for this syndrome so far have quite unpleasant side-effects, whereas these behavioural changes have relatively few!

 

[specepic]

This seems to be a syndrome that causes a impact on patient's lives (along with hundreds of other pain syndromes we may discuss here) but please keep in mind these forums are for medical professionals. I'm sure there are other outlets/support groups on the web and if there aren't there clearly is a demand.

 

[sfMSWi]

For over 20 years I have suffered from not only 1st bite syndrome, with NO known cause (most drs. thought I was insane! and have never heard of this) except dental work and root canals. NO SURGERIES. But here's the kicker...I also had the same extreme pain 45 yrs. ago starting with the SWEAT GLANDS under my arms. That went away, fortunately. Started during 1st pregnancy. Then, along with the 1st bite, I have the same excruciating pain when my tear glands are stimulated...when I start to cry. I have been living with this almost as long as the 1st bite pain. My mouth starts to shake and over-salivation occurs as you endure the pain. It can last for many minutes and happen over and over, and can occur with putting a toothbrush in my mouth or just thinking about food, or upon drinking even a coke or anything with a flavoring. Not milky or watery or sugary tastes.
Root canals are forever sensitive teeth now, and dentists and oral surgeon just think I'm a little crazy or super pain sensitive or a baby. It's demeaning to be treated thusly. I intend to point all drs. now to this site so they know it is a for real condition. Thank you to pain sufferers from this (I have met many in restaurants when I see the "signs" of pain!), and I hope you get it figured out.

 

[Bambi2Shoes]

I was in a car accident on 11/11/11, i was completely stopped and was hit from behind and then i hit the car in front. I smashed my jaw on the steering and my head a few times. I was referred to a TMJ Specialist.
I started to develop this sour type pain when i would take the first bite of food, i had never heard of First Bite before and i thought i was crazy and i was not sure how i was going to describe this to the specialist but when i did she said it sounds like First Bite...I was actually shocked to hear that there was actually a name for what i have...she said that usually first bite occurs in individuals who have had some sort of surgery, she was going to check into the possibility of accident induced first bite. Is it possible that i have not had any surgery and that i have developed first bite do to the accident.

 

[xavente]

For over 20 years I have suffered from not only 1st bite syndrome, with NO known cause (most drs. thought I was insane! and have never heard of this) except dental work and root canals. NO SURGERIES.
.

That is exactly my situation. Several years ago this started to happen, both first bite pain along with the tear gland activation pain. For years i'm having this pain with every meal.

Discovered two of my friends also having this, one started new and the other has sinc she was born without knowing it's a disease.

I did not have surgery, nor my friends.

But herpes like symptoms emerged in same time with this pain on me. What i believe is this pain connected with herpes.

 

[Rural Juror]

This may be of interest- the chemotherapy drug Oxaliplatin causes first bite and first sip pain in most patients.

 

[Lindy]

I will be seeing a patient next week for eval and tx of first bite syndrome. First one I've seen. Any pearls or hints as to what to look for? Any ideas for treatment? pharmacologic, interventional or otherwise? Pt apparently had resection of a schwannoma from the vagus. Thanks in advance for any ideas.

Please take it seriously. My 44 year old son has had this for over 5 years. It's driving him slowly insane. He has never had surgery on his glands. He has Crohn's Disease and Type 1 Diabetes. He's 6 feet tall and his weight varies from between 97 to 120 pounds. The pain in his mouth, jaw and cheek gets worse all the time. The pain continues past the first bite sometimes.
His life is a living hell and no one has been able to help him. He has no mouth problems, and has dentures so the problem does not lie there. Over the years, every doctor he's seen simply says he has never heard of anyone having this problem and has no idea how to treat it. The pain is so severe that I often hear him scream when he first starts to eat. (He eats alone, in his room because of it!) He says it's like someone is stabbing him with an ice pick in his nerve endings. I am at my wit's end trying to find someone who can help him!!

 

[powermd]

This sounds like a parasympathetic pain disorder. I would discuss with your doctor(s) trying medications that tend to block or blunt salivation. I know when I take a first bite of something, especially if I'm very hungry and the food is flavorful, I feel a rush of nervous energy come over my mouth and I begin to salivate. It would seem to me that blocking this response would take the edge off the problem.

The trick would be finding a way to do this only at mealtimes so you don't need around the clock medicine.

A couple of the more anti-salivating TCAs would include desipramine and nortryptiline.

Please note, this is in no way to be construed as medical advice. Just an idea for how another medical professional might approach a challenging pain disorder. Please do not follow up with specific questions about your personal case, I will not be able to address them.

 

[Taus]

Please take it seriously. My 44 year old son has had this for over 5 years. It's driving him slowly insane. He has never had surgery on his glands. He has Crohn's Disease and Type 1 Diabetes. He's 6 feet tall and his weight varies from between 97 to 120 pounds. The pain in his mouth, jaw and cheek gets worse all the time. The pain continues past the first bite sometimes.
His life is a living hell and no one has been able to help him. He has no mouth problems, and has dentures so the problem does not lie there. Over the years, every doctor he's seen simply says he has never heard of anyone having this problem and has no idea how to treat it. The pain is so severe that I often hear him scream when he first starts to eat. (He eats alone, in his room because of it!) He says it's like someone is stabbing him with an ice pick in his nerve endings. I am at my wit's end trying to find someone who can help him!!

I am sorry to hear about your difficult situation, however this is not a forum for medical advice.

 

[The First Bite Sucks!]

I have all the symptoms of FBS but I have had no surgery in the parapharyngeal space. I had a phlegmon in my throat removed by an ENT in his office. Basically he cut them/it open to let it drain and put me on antibiotics. He says we caught it before it became a peritonsillar abscess. As I was healing from this procedure apparently the infection moved into my parotid and submandibular saliva glands. The left side of my face became extremely swollen. Since I was already on an appropriate antibiotic, I was instructed to use warm or cold compresses (whichever felt better) (warm ones were best for me) and to massage and "squeeze" the pus out. I did this by leaning over the sink and pressing my cheek. At times the pus just streamed out into my throat and drained into the sink. As my swelling was increasing however, I noticed a numbness starting just to the left of my left eye running down my cheek to about the level of my mouth. I still have surface numbness in this area even though the swelling is gone because I finally was able to express a grey and red bloody clot from one or either of the previously mention glands. I say this because I could feel two distinct locations in my throat where the pus would come out. One higher than the other in my throat. It was weird how they just shot out with a gush of more fluid behind them.
Anyway, I am now on Neurontin and it appears that it is working only to relieve the "constant" pain I was feeling. It doesn't appear to be effective for the first bite pain. I am wondering if the extreme swelling of the infected salivary glands and my efforts to squeeze the pus out have caused nerve damage that is now imitating or resulted in FBS.
I am going to have a contrast CT of the neck in the next day or two to rule out a mass. Manual palpation of the area reveals no unilateral differences but we must rule out a mass too small to be felt at this point. God I hope there is no mass! (unless it is benign and removal causes full recovery) Wishful thinking I think.
The next possible remedy if there is no improvement is to inject Botox. I am told only a small amount is used and it seems to have some positive reviews from previous documented uses.
Your prayers are appreciated!

 

[Phisiggem]

Hi, I also get this first bite syndrome sensation most days on my first bite or if I haven’t eaten in a while. I am really not sure when it started, but have definitely noticed it in the past year. I have never had any surgery in this area of the face or jaw.
I just recently got braces off after 2 yrs, and over the past year I have been on nortriptyline for migraines, which has given me severe dry mouth. I am not sure if any of these are related to the FBS, but thought this may help you all when working with your patients and pinpointing the cause.

 

[Phisiggem]

This sounds like a parasympathetic pain disorder. I would discuss with your doctor(s) trying medications that tend to block or blunt salivation. I know when I take a first bite of something, especially if I'm very hungry and the food is flavorful, I feel a rush of nervous energy come over my mouth and I begin to salivate. It would seem to me that blocking this response would take the edge off the problem.

The trick would be finding a way to do this only at mealtimes so you don't need around the clock medicine.

A couple of the more anti-salivating TCAs would include desipramine and nortryptiline.

Please note, this is in no way to be construed as medical advice. Just an idea for how another medical professional might approach a challenging pain disorder. Please do not follow up with specific questions about your personal case, I will not be able to address them.

I am currently on nortriptyline and am actually wondering if this is what is causing the FBS! I am not sure if I remember having the condition before starting this drug for migraines. Hoping this info can help.

 

[Ducttape]

I am sorry to hear about your difficult situation, however this is not a forum for medical advice.