I have been having bilateral constant facial pain for about a year now. I am 31 years old and and pain is so intense at times I want to give up. It is in all 3 branches of the trigeminal nerve. My teeth, my cheeks, my forehead.....into my ears. It is a constant ache, burning, pressure, sensitity. It worsens with exercies, stresss, alcohol, anything that dialates my blood vessels. The MRI and other scans they did came back fine so no easy answer. I do respond to high doses of prednisone, but as soon as I am off the prednisone, the pain is back immediately. I also respond to anticonvulsants. I am currently on 1200 mg neurontin, hydrocodone, and valium for the pain, which take the edge off. I am wondering if anyone else has pain like this and has found surgery or injections to be successful. I would like to FIX this - I just need to find the right solution. Can anyone relate or offer any advice? I have been to about 15 doctors and have so far been told I have migranes, atypical facial pain, trigeminal neuralgia......Please let me know if you have any advice for me!
I share the same pain as u…I had it now for a yr,And not having much luck with finding a solutiuon for the pain.I beeen on many med that i cant even recall half of them.I have many nerve blocks that aslso didnt work.I also had radio frequance(cant think of the full name) done.I am now on Gabapentin 900 mg and tylenol 3s …I just increased my Gabapentin a few days ago and i have to say im pain free today(lets hope it continues)
I get the pain on my left side.Eyes ear teeth temple,and the back of my head.When it starts my eye starts to close.Wondering if this happens to you also.
Good luck in trying to fix pain Thats all i want right now also.Somedays i cant deal with pain either i feel like pounding my head off a wall.God Bless and hope ur having a pain free day
Hi Katie,
My pain is in all the areas you mentioned except the forehead. Mine is also only on one side. I had MVD over a month ago but am still having pain. If I take things extremely easy the pain subsides. This means minimal talking, smiling, chewing , and especially like you said, exercise and stress. My pain was at it’s worst last Christmas and into Jan. My doctor put me on tegretol which relieved the pain, but not the pressure. It was like a miracle to have the pain go away. However, the side effects were bad. I’m hoping and praying my surgery helps once the nerve heals…only time will tell. As I am writing this, my teeth are very sensitive and I am getting a shot of pain in my jaw. I went to Dr. Lee at The Cleveland Clinic. You can get lots of information on this website. Keep asking questions and pour your heart out here. Only people with this condition can truly know how terrible it can be. I am 46 and also going through perimenopause (hot flashes and such) along with TN! There are days when I truly get close to giving up hope. But then the next day something happens to keep me going. Hang in there…keep searching…we are here for you. God Bless.
Katie,
I’m sorry you are having pain. I primarily have typical TN. But I know someone who has had the steroid and alcohol injections and they have helped her. They hardly helped me but gave me some relief.
Liz
you sound like my twin… i have had bi-lateral going for 4 yrs same things mri’s were all fine catscans everything i have pretty much tried everything out there and nothing seems to help. i am on tegretal, lyrica, baclafin, amytriptaline, and i take vitamine d which thanks to another tn patient i found was very low as well. i have every pain across the board long and short unfortianatly i haven’t been able to find any long term relief but i wanted to chime in to worn u that i was using the steroids to treat as well to knock edge off and i ended up making things worse after a while …prolonged use of the steroids can eventually break down the ability for your other meds to work…so now i only take steroids during an attack that lasts several days. i use benedryl and an anit anxiety pill to help knock me out through the smaller attacks so i can at least sleep through the pain and hopefully when i awake several hrs later it has subbsided some. the doc said its a safe way to put me to sleep so to speak lol with out any long term side affects or damage being done to liver. sorry i couldnt help anyother way
Thanks everyone for all you’ve said! Stacey, so steriods helped you as well? My doctors all find that unusual? But if it is a strong enough dose it definetly helps. Are any of you sensitive to alcohol? I never was until I got this. Now it sets off pain immediately. I didin’t realize that steriods could actually make things worse in the long run? Grrrr…well, I I am hoping that I can up my neurontin (gabapentin) soon and see if that makes a difference. I am so lucky to have found all of you. It is so hard to explain to anyone else how this feels, including my husband. I just wish we could all find a fix! Thanks again.
stacey nason said:
you sound like my twin… i have had bi-lateral going for 4 yrs same things mri’s were all fine catscans everything i have pretty much tried everything out there and nothing seems to help. i am on tegretal, lyrica, baclafin, amytriptaline, and i take vitamine d which thanks to another tn patient i found was very low as well. i have every pain across the board long and short unfortianatly i haven’t been able to find any long term relief but i wanted to chime in to worn u that i was using the steroids to treat as well to knock edge off and i ended up making things worse after a while …prolonged use of the steroids can eventually break down the ability for your other meds to work…so now i only take steroids during an attack that lasts several days. i use benedryl and an anit anxiety pill to help knock me out through the smaller attacks so i can at least sleep through the pain and hopefully when i awake several hrs later it has subbsided some. the doc said its a safe way to put me to sleep so to speak lol with out any long term side affects or damage being done to liver. sorry i couldnt help anyother way
have you had a spinal tap? sometimes the spinal fluid can give some helpful info. bilateral pain is suggestive of something systemic. have your blood checked for ANA levels. a positive result may give you an avenue to explore in the auto immune field.
also, this sounds crazy, but it could be anatomical. have your cervical spine and your bite checked. my bite changed when i started to wear a splint that my dentist made for me, obviously it was inappropriate. it caused bilateral facial pain in all three branches. teeth, cheeks, forehead and scalp. it wasn’t until i had a new splint which corrected my bite that most of the pain started to correct itself. i still wear the corrective splint.
hope this helps.
the researcher
I have not had a spinal tap yet, but my doctors have suggested it. I think it would be worth trying. They did do my blood work and found my ANA results to be normal, but are not ruling out an autoimmune disease causing this…but there are so many, which one? I had a baby July 27th of last year and had an epideral and then the pain began Sept 1st, do you think that there could be any relationship to that? I have always wondered…but no doctor has seemed to excited about this theory. I am pregnant again now, so I probably won’t have the spinal tap done til after the baby, but i really do think it would be a good next step. Thanks for your reply.
the researcher said:
have you had a spinal tap? sometimes the spinal fluid can give some helpful info. bilateral pain is suggestive of something systemic. have your blood checked for ANA levels. a positive result may give you an avenue to explore in the auto immune field.
also, this sounds crazy, but it could be anatomical. have your cervical spine and your bite checked. my bite changed when i started to wear a splint that my dentist made for me, obviously it was inappropriate. it caused bilateral facial pain in all three branches. teeth, cheeks, forehead and scalp. it wasn’t until i had a new splint which corrected my bite that most of the pain started to correct itself. i still wear the corrective splint.
hope this helps.
the researcher
doubtful the epidural caused your facial pain. if there was weight to support this theory, you should have localized symptoms where you had the shot, in addition to the face.
definitely get the spinal. immune conditions which can manifest in the face are sjogren’s, scleroderma, sarcoidosis and sometimes lupus. the normal ANA is reassuring.
check your bite with a dentist.
good luck.
the researcher
Katie said:
I have not had a spinal tap yet, but my doctors have suggested it. I think it would be worth trying. They did do my blood work and found my ANA results to be normal, but are not ruling out an autoimmune disease causing this…but there are so many, which one? I had a baby July 27th of last year and had an epideral and then the pain began Sept 1st, do you think that there could be any relationship to that? I have always wondered…but no doctor has seemed to excited about this theory. I am pregnant again now, so I probably won’t have the spinal tap done til after the baby, but i really do think it would be a good next step. Thanks for your reply.
the researcher said:have you had a spinal tap? sometimes the spinal fluid can give some helpful info. bilateral pain is suggestive of something systemic. have your blood checked for ANA levels. a positive result may give you an avenue to explore in the auto immune field.
also, this sounds crazy, but it could be anatomical. have your cervical spine and your bite checked. my bite changed when i started to wear a splint that my dentist made for me, obviously it was inappropriate. it caused bilateral facial pain in all three branches. teeth, cheeks, forehead and scalp. it wasn’t until i had a new splint which corrected my bite that most of the pain started to correct itself. i still wear the corrective splint.
hope this helps.
the researcher
Thanks for the advice…been to 2 dentists and they say all is good. I do use a bite plate at night for grinding my teeth, but only started using that again after this whole thing happened. Both dentists say there is nothing wrong with me and the one suggest something with the trigeminal nerve. Do you know, can they do a spinal when you are pregnant? Or is that unsafe? Either way, I do think that is a logical next step and I plan to do that.
the researcher said:
doubtful the epidural caused your facial pain. if there was weight to support this theory, you should have localized symptoms where you had the shot, in addition to the face.
definitely get the spinal. immune conditions which can manifest in the face are sjogren’s, scleroderma, sarcoidosis and sometimes lupus. the normal ANA is reassuring.
check your bite with a dentist.
good luck.
the researcher
Katie said:I have not had a spinal tap yet, but my doctors have suggested it. I think it would be worth trying. They did do my blood work and found my ANA results to be normal, but are not ruling out an autoimmune disease causing this…but there are so many, which one? I had a baby July 27th of last year and had an epideral and then the pain began Sept 1st, do you think that there could be any relationship to that? I have always wondered…but no doctor has seemed to excited about this theory. I am pregnant again now, so I probably won’t have the spinal tap done til after the baby, but i really do think it would be a good next step. Thanks for your reply.
the researcher said:have you had a spinal tap? sometimes the spinal fluid can give some helpful info. bilateral pain is suggestive of something systemic. have your blood checked for ANA levels. a positive result may give you an avenue to explore in the auto immune field.
also, this sounds crazy, but it could be anatomical. have your cervical spine and your bite checked. my bite changed when i started to wear a splint that my dentist made for me, obviously it was inappropriate. it caused bilateral facial pain in all three branches. teeth, cheeks, forehead and scalp. it wasn’t until i had a new splint which corrected my bite that most of the pain started to correct itself. i still wear the corrective splint.
hope this helps.
the researcher
a spinal is possible during pregnancy but most doctors will probably make you wait. triptan medications address vascular facial pain; something to consider as a possibility as well. imitrex, indocin, etc.
make sure your MRI/MRA is a thin slice scan.
good luck.
the researcher
Katie said:
Thanks for the advice…been to 2 dentists and they say all is good. I do use a bite plate at night for grinding my teeth, but only started using that again after this whole thing happened. Both dentists say there is nothing wrong with me and the one suggest something with the trigeminal nerve. Do you know, can they do a spinal when you are pregnant? Or is that unsafe? Either way, I do think that is a logical next step and I plan to do that.
the researcher said:doubtful the epidural caused your facial pain. if there was weight to support this theory, you should have localized symptoms where you had the shot, in addition to the face.
definitely get the spinal. immune conditions which can manifest in the face are sjogren’s, scleroderma, sarcoidosis and sometimes lupus. the normal ANA is reassuring.
check your bite with a dentist.
good luck.
the researcher
Katie said:I have not had a spinal tap yet, but my doctors have suggested it. I think it would be worth trying. They did do my blood work and found my ANA results to be normal, but are not ruling out an autoimmune disease causing this…but there are so many, which one? I had a baby July 27th of last year and had an epideral and then the pain began Sept 1st, do you think that there could be any relationship to that? I have always wondered…but no doctor has seemed to excited about this theory. I am pregnant again now, so I probably won’t have the spinal tap done til after the baby, but i really do think it would be a good next step. Thanks for your reply.
the researcher said:have you had a spinal tap? sometimes the spinal fluid can give some helpful info. bilateral pain is suggestive of something systemic. have your blood checked for ANA levels. a positive result may give you an avenue to explore in the auto immune field.
also, this sounds crazy, but it could be anatomical. have your cervical spine and your bite checked. my bite changed when i started to wear a splint that my dentist made for me, obviously it was inappropriate. it caused bilateral facial pain in all three branches. teeth, cheeks, forehead and scalp. it wasn’t until i had a new splint which corrected my bite that most of the pain started to correct itself. i still wear the corrective splint.
hope this helps.
the researcher
Hi Katie and Researcher,
I haven’t been on here in a long time. I am usually on the FB support group alot and don’t find time to check in to this group as well. I was reading your posts and I am just wondering what mg. Katie you were on when they gave you the prednisone? They don’t know what I have for sure but think I have Atypical facial pain. I have had it for 6 years and I actually just finished taking Carbatrol XR. I was on that for about 3 weeks and got up to 600 mg. I think it was helping because I hardly had any pain during the day but at night the pain would come back but not as intense. I came off because the side effects were killing me. I felt dizzy, nauteous, and extremely tired. I am now taking prednisone. It is something I have been wanting to try becuase I found someone who’s pain is very similar to mine. Constant, one sided teeth, gum, face pain that is deep, gnawing and aching. The prednisone is helping her. Anyways, it is been 48 hours since I started the predinsone and still no relief. They have me on a taper for 12 days starting at 60 mg tapering down. I am just wondering if maybe this is not enough or maybe it just isn’t going to work for me. Researcher, you also mentioned someting about checking your bite. I often wonder if all this could be that my bite is off but wouldn’t I have it on both sides and you would think a dentist or someone would have noticed this by now. You also mentioned having your ANA levels checked or a spinal tap. I have never heard of this. I have done just about every kind of testing but never this. Maybe this is something I should pursue as well. I am just at my wits end and losing hope. I am a mom to a two year old and I feel horrible that I can’t be the mom he needs me to be. I also want to have another baby but with this condition I just don’t know how. I could go back on the carbatrol xr but the side effects were awful. Any suggestions? Thanks guys!!!
Hey! Well, I was just put on another round of prednisone as well. They start with 60 mg typically and then taper me off within a 2 week cycle. I have experienced that alot of times that the pain does not get better until I have totally gotten to the end of the steriods…if even then. The doctors also have confirmed that this can be the case in most instances. I hope you find some luck. I know that the prednisone helps wth the facial burning and some of the aching. But right now I am 6 weeks away from delivering my next baby so they felt this was my safest option. Then they want to run me thru the gauntlet and try every anti-convulsant they can find. The neurosurgeon I just met with told me he has a hard time finding this to be TN based on my age, altho the neurologist felt it was. So he told me to try all the drugs first, then if that doesn’t do the drink we will start with facial injections or radiation to the nerve. Let me know if the prednisone helps you. It is really hard not to think about how different life would be without the pain! It just seems to consume me at times. Lots of times. I’ll be thinking of you!
Lori Branco said:
Hi Katie and Researcher,
I haven’t been on here in a long time. I am usually on the FB support group alot and don’t find time to check in to this group as well. I was reading your posts and I am just wondering what mg. Katie you were on when they gave you the prednisone? They don’t know what I have for sure but think I have Atypical facial pain. I have had it for 6 years and I actually just finished taking Carbatrol XR. I was on that for about 3 weeks and got up to 600 mg. I think it was helping because I hardly had any pain during the day but at night the pain would come back but not as intense. I came off because the side effects were killing me. I felt dizzy, nauteous, and extremely tired. I am now taking prednisone. It is something I have been wanting to try becuase I found someone who’s pain is very similar to mine. Constant, one sided teeth, gum, face pain that is deep, gnawing and aching. The prednisone is helping her. Anyways, it is been 48 hours since I started the predinsone and still no relief. They have me on a taper for 12 days starting at 60 mg tapering down. I am just wondering if maybe this is not enough or maybe it just isn’t going to work for me. Researcher, you also mentioned someting about checking your bite. I often wonder if all this could be that my bite is off but wouldn’t I have it on both sides and you would think a dentist or someone would have noticed this by now. You also mentioned having your ANA levels checked or a spinal tap. I have never heard of this. I have done just about every kind of testing but never this. Maybe this is something I should pursue as well. I am just at my wits end and losing hope. I am a mom to a two year old and I feel horrible that I can’t be the mom he needs me to be. I also want to have another baby but with this condition I just don’t know how. I could go back on the carbatrol xr but the side effects were awful. Any suggestions? Thanks guys!!!
katie,
do not do anything destructive to your nerve. i had a simple nerve block and i have worse pain than ever.
when the answers for your pain are not clear, do NOT do anything destructive. let’s consider the logic with this neurosurgeon; he doesn’t support the TN diagnosis with you because of your age (which we all know is blarney), but yet is willing to inject you and radiate you anyway? RED FLAG NEUROSURGEON. run, do not walk from his office. find another practitioner, and quickly.
lori,
if you are responding to the anti seizure med, this is giving you information. your pain likely has a neuropathic component to it. most nerve pain tends to get worse at night. if the steroids arent working then we know that it’s not inflammation. it may be you need to keep working until you find your drug and your dosage that work for you. and don’t feel bad, carbatrol is a tough drug; it sucks and nobody feels good on it. there are others to try. i take topamax which works pretty well in conjuction with an anti depressant at a low dose. i use two drugs which synergize with one another to “amp” each other up but i can keep them at lower doses so i am not as dopey.
ANA levels check for an auto immune disorder…lupus, etc. It is done with blood work. Spinal tap is not to be taken lightly, and you will be hard pressed to find a neuro who will do it with unilateral symptoms, but it could be done if you exhaust all med options with no relief.
you can go to you dentist and have him check your bite; a TMJ MRI would check your joints and discs. these are costly and not always covered by insurance but you can try.
good luck to the both of you,
the researcher
Hi Katie,
I usually get 100 mg of prednisone and taper off in 3 weeks. And sometimes my pain isn’t really helped until I get closer to the end of the meds. And I’m not sure why your doctor doesn’t believe they help. I’ve had prescriptions from two neurologists and also my surgeon. And I believe alcohol increases my pain. I rarely drink any way so it didn’t bother me to quit it. I would quit any food or drink I thought aggravated my pain. Coffee also increases my pain but I try a cup once in awhile. And I usually pay for it with increased pain. I got the pressure aching atypical pain within a week of my first nerve block. But I continued to get more (4 in all). They did give me slight relief from the typical pain but I did it mostly because I was desperate to try anything while waiting for my surgery. My surgeon also recommended but didn’t insist that I try two of them. But I have a friend who has had great success with nerve blocks and gets them quite often. But in hindsight I wished I had only had the MVD without the blocks because the atypical pain. I won’t get another nerve block. But that is just my situation. As we know everyone responds differently.
Liz
Katie, Thanks for the info about prednisone. Maybe I just need to give it more time. Or maybe I will find out it doesn’t work for me in the long run. How often do you go on the prednisone? I always thought prednisone isn’t something you can typically stay on. So Katie, basically you have gone throught the gamut of doctors as well with still no real diagnosis. Same here and it has been 6 years for me. I feel let down by the medical community. I feel like half the time I have to do all the research and tell them what needs to be done. I just need to find a competent doctor who is understanding and actually cares about helping his patients rather than how many patients they can get. At least that has been my expeience. Congratulations on your pregnancy and being able to handle this while pregnant. This is exactly what I am struggling with right now. I so desperately want to have another baby but don’t know how I can handle being off any meds. I would be so depressed if I came off my antidepressant. Shucks, I am already still depressed and I am on one now so I can’t imagine being off it. Also, I like to be able to take clonazepam and percoset as needed to take the edge off. But my doctors say the risk is too high. My first pregnancy was a nightmare. I was in horrific pain because I wasn’t on any meds and on top of that I had placenta previa with bleeding and was in and out of the hospital throughout my whole pregnancy and then had an emergency c -cection 2 months early because my son’s heartrate kept dropping. He is beautiful and healthy but I was in severe pain and having panic attacks so they put me on Ativan and prozac at the very end of the pregnancy. Right now I am on Prednisone, Effexor 150 mg. and clonazepam 1 mg. I guess my question is what meds have you been on while pregnant and are you or your doctors concerned about any risks? I know that with all drugs there are risks but I guess I just need to do what is best form me and I feel a healthy pregnant mom is better than a non-healty pregnant one. Any advice for me? What you said at the end is exactly the way I feel. The pain consumes my life and is all I can think about. I am constantly researching. One day I think I understand and know what to do and other days I am just so confused. Which the escalates into severe anxiety. I feel so out of control. I want my life back and can’t imagine another 6 years like this. So many people seem so positive but I just can’t seem to get there. I don’t want to live like this. I don’t want to feel pain anymore. 
Please keep me posted as to your circumstances and I wish you the best with your upcoming birth!! Do you know what you are having yet?
the researcher said:
katie,
do not do anything destructive to your nerve. i had a simple nerve block and i have worse pain than ever.
when the answers for your pain are not clear, do NOT do anything destructive. let’s consider the logic with this neurosurgeon; he doesn’t support the TN diagnosis with you because of your age (which we all know is blarney), but yet is willing to inject you and radiate you anyway? RED FLAG NEUROSURGEON. run, do not walk from his office. find another practitioner, and quickly.
lori,
if you are responding to the anti seizure med, this is giving you information. your pain likely has a neuropathic component to it. most nerve pain tends to get worse at night. if the steroids arent working then we know that it’s not inflammation. it may be you need to keep working until you find your drug and your dosage that work for you. and don’t feel bad, carbatrol is a tough drug; it sucks and nobody feels good on it. there are others to try. i take topamax which works pretty well in conjuction with an anti depressant at a low dose. i use two drugs which synergize with one another to “amp” each other up but i can keep them at lower doses so i am not as dopey.
ANA levels check for an auto immune disorder…lupus, etc. It is done with blood work. Spinal tap is not to be taken lightly, and you will be hard pressed to find a neuro who will do it with unilateral symptoms, but it could be done if you exhaust all med options with no relief.
you can go to you dentist and have him check your bite; a TMJ MRI would check your joints and discs. these are costly and not always covered by insurance but you can try.
good luck to the both of you,
the researcher
the researcher said:
katie,
do not do anything destructive to your nerve. i had a simple nerve block and i have worse pain than ever.
when the answers for your pain are not clear, do NOT do anything destructive. let’s consider the logic with this neurosurgeon; he doesn’t support the TN diagnosis with you because of your age (which we all know is blarney), but yet is willing to inject you and radiate you anyway? RED FLAG NEUROSURGEON. run, do not walk from his office. find another practitioner, and quickly.
lori,
if you are responding to the anti seizure med, this is giving you information. your pain likely has a neuropathic component to it. most nerve pain tends to get worse at night. if the steroids arent working then we know that it’s not inflammation. it may be you need to keep working until you find your drug and your dosage that work for you. and don’t feel bad, carbatrol is a tough drug; it sucks and nobody feels good on it. there are others to try. i take topamax which works pretty well in conjuction with an anti depressant at a low dose. i use two drugs which synergize with one another to “amp” each other up but i can keep them at lower doses so i am not as dopey.
ANA levels check for an auto immune disorder…lupus, etc. It is done with blood work. Spinal tap is not to be taken lightly, and you will be hard pressed to find a neuro who will do it with unilateral symptoms, but it could be done if you exhaust all med options with no relief.
you can go to you dentist and have him check your bite; a TMJ MRI would check your joints and discs. these are costly and not always covered by insurance but you can try.
good luck to the both of you,
the researcher
Researcher,
thanks for your reply. I agree with you about the Tegretol and it being a neuropathic component. Do you think 600 mg was low for Tegretol? Which anti depressant do you take? I also would like to work with my neurologist to find the right combo of drugs with the least amount of side affects but right now I want to get pregnant. I hate to sound like this but I just want to get pregnant now and have my baby so that I can be open to all drug trials once i have a baby. I only want one more and then I an try anything they want to throw at me. It is just so hard when all you want is to have a baby but then you have this excruciating pain and you think what am I doing? Am I being selfish wanting to have another baby. Do you know any drugs that are safe while pregnant? Why won’t any of my doctors work with me on this and help me find a way. There has to be a way to control my pain and still have a healthy baby. Remind me again, is your pain atypical? You also live in MA right? Do you have any doctors you could recommend? I also think I will see a tmj doctor. I could have two things going on. But I just wonder if some of these so called TMJ doctors scam you. You seem to be so knowledgable. Thanks for your help!
firstly, don’t let any doctor tell you drugs are out during pregnancy. baloney. what if you had epilepsy? would your doctor say, “sorry, no drugs.” of course not! epileptic women have healthy babies everyday on drugs. Keppra is a newer anti seizure drug which, while taken during gestation, is making babies smarter after they’re born. so much so they’re being dubbed “Keppra babies.” this has given birth (no pun intended) to a subculture of healthy non epileptic American women taking it in the hopes they will give birth to “smarter” babies. Sad, but true.
medical practitioners are preoccupied with lawsuits. they weigh the risk of dispensing advice to a patient against the benefit the advice may bring. pain (TN) vs. possible death (epilepsy) results in much different advice, sometimes in the same practitioner. pain does not have as great a risk to the medical community or the patient as death.
600mg of Tegretol is low. 800 mg is usually the average dose for things to start happening. I take Nortriptyline along with the Topamax and my pain is atypical. Before the nerve block injury, I am not sure if it was truly neuropathic. You are right; not many people (at least in Mass) to trust for TMJ. Everyone does their own thing. A good MRI is a place to start.
You need to speak with a specialist in “maternal fetal medicine.” Tell them you’re taking medication during the pregnancy and you want advice on how to manage it most responsibly. If a practitioner gives you grief, simply say, “I know my rights and I’m informed!”
hope this helps,
the researcher
Lori Branco said:
the researcher said:katie,
do not do anything destructive to your nerve. i had a simple nerve block and i have worse pain than ever.
when the answers for your pain are not clear, do NOT do anything destructive. let’s consider the logic with this neurosurgeon; he doesn’t support the TN diagnosis with you because of your age (which we all know is blarney), but yet is willing to inject you and radiate you anyway? RED FLAG NEUROSURGEON. run, do not walk from his office. find another practitioner, and quickly.
lori,
if you are responding to the anti seizure med, this is giving you information. your pain likely has a neuropathic component to it. most nerve pain tends to get worse at night. if the steroids arent working then we know that it’s not inflammation. it may be you need to keep working until you find your drug and your dosage that work for you. and don’t feel bad, carbatrol is a tough drug; it sucks and nobody feels good on it. there are others to try. i take topamax which works pretty well in conjuction with an anti depressant at a low dose. i use two drugs which synergize with one another to “amp” each other up but i can keep them at lower doses so i am not as dopey.
ANA levels check for an auto immune disorder…lupus, etc. It is done with blood work. Spinal tap is not to be taken lightly, and you will be hard pressed to find a neuro who will do it with unilateral symptoms, but it could be done if you exhaust all med options with no relief.
you can go to you dentist and have him check your bite; a TMJ MRI would check your joints and discs. these are costly and not always covered by insurance but you can try.
good luck to the both of you,
the researcherResearcher,
thanks for your reply. I agree with you about the Tegretol and it being a neuropathic component. Do you think 600 mg was low for Tegretol? Which anti depressant do you take? I also would like to work with my neurologist to find the right combo of drugs with the least amount of side affects but right now I want to get pregnant. I hate to sound like this but I just want to get pregnant now and have my baby so that I can be open to all drug trials once i have a baby. I only want one more and then I an try anything they want to throw at me. It is just so hard when all you want is to have a baby but then you have this excruciating pain and you think what am I doing? Am I being selfish wanting to have another baby. Do you know any drugs that are safe while pregnant? Why won’t any of my doctors work with me on this and help me find a way. There has to be a way to control my pain and still have a healthy baby. Remind me again, is your pain atypical? You also live in MA right? Do you have any doctors you could recommend? I also think I will see a tmj doctor. I could have two things going on. But I just wonder if some of these so called TMJ doctors scam you. You seem to be so knowledgable. Thanks for your help!
Thank you all for the advice…wow, I got a bunch of it! I guess I was hoping the nerve block thing would be a no-brainer and easy way to try something, but that doesn’t sound like the case. Did any of you have alcohol or glycerol injections? Just curious. Well, I am 6 weeks til I am due and the ultrasounds show that all measurements are good and in line…however, I am measuring 5 weeks smaller than I should which could indicate a smaller baby. (Good for the birthing process, but scary for whatever that means). I am currently on 2400 mg of Neurontin, 20 mg valium, and 40 mg hydrocodone, so I am going to try to wean off of the valium and hydrocone to see if that helps with the baby at all…plus those are both addictive so my doctor wants those to be at the lowest I can go when I have the baby. This has been a very hard pregnancy for me…haven’t gotten good cooperation from doctors, neurologists, ect…and just being pregnant is stressful in itself…and stress is certainly one of my triggers. Lori, I don’t have any good advice besides make sure to find someone that is willing to help and be on your side before you get pregnant. I have had at least 5 doctors write me off because I am and won’t even take my calls. The steriods this time around really don’t seem to be helping me. So not sure why they have in the past, but I guess. I don’t know which neurologist I will work with after the pregnancy but I know for sure they will try me on tegretol and an anti-depressant. Is is best to just try to find medications, or do we have a chance to find something more permanent. I know that the medications mess with my head. I don’t like that. And honestly, I don’t want to have to be on medication the rest of my life - - - but I need to look at all the alternatives first. Oh yea, and I agree, if we had epilepsy, a doctor would still work with us. I even called the epilepsy foundation and they agreed, but could not find me a doctor remotely close to where I live that would help me.