Sara, have you had an MRI?
I hope so. 
Yeah, lol…not at all. Truly, though, I think it would be very wise to rule out larger CAUSES of TN, not that it can’t occur alone (as mine did), but with all of your new symptoms, I would feel better if the doc ruled out some larger things, too.
Good luck at getting a correct diagnosis, hope it all goes well! Stay strong!!
Sara, I just noticed and read you are breast feeding. This all tarted for me about 2 years ago when I was breast feeding and I used the leftover Percocet from my c section to get thru the break through pain. I too was undisguised at the time and being treated by an ENT (because pain started deep on ear). Maybe if you can’t get on or choose not to use strong antiseizure meds you can try acupuncture or some therapy? I plan on trying acupuncture after I see neurologist later this month.(((( Hugs )))and I hope you have a good appointment!
Ps- stay viligant if they try to blame being a “new mom” on your pain such as post partum 
Sara said:
I am not on meds yet. I currently take ultram as needed but am almost outI’ve found over the years clonazepam helps tremendously with the burning type pain. I’m breastfeeding at the moment and really don’t want to stop anytime soon!
redbird2448 said:I have break though pain now and then, but its not bad. I will say this. If your not on meds yet for this, it can take some real work to get used to .
I kept stopping it, as I was so mentally sure I was going to get better, and this would go away.
Well, that dream is over and I realized that its the meds that are working. I hated the drugged feeling I had with it. I started just taking a larger dose at night, since my doc only gave me 100 mlg pills of gapapintin. My Nuro said I could take three four times a day. I could never stand that much. I take two at night, and now one in the morning, noon, and before supper and I have gotten used to it. It took a month, of working with it, to find out what works for me. Whatever they give you, if it bothers you, hang in there, and it will get better.
I absolutely have remissions. They can be weeks or days…I even went nine months once. They happen and are LOVELY!
Kerry, what pain patch are you using? I am surprised your neuro prescribes narcotics for you. I have to use my pain doc for that. Thanks, Sharon
kerry said:
That is so horrible about the PA. I Am lucky to have found a skilled psychiatrist who has also dealt with chronic pain, and puts the behavior of these medical "professionals" in perspective for me. So I don't in fact- go crazy! He calls it the "mother hen" phenomenon at the doctors office. Whomever answers the phone and has to deal with us requesting more narcotics for our pain is to give us a hard time, be rude, ignorant, and protect the doctor from having to deal with us. Welcome to our bureaucratic society where the government dictates our treatment and doesn't leave it up to the doctor because there have been to many "Dr, Feel Goods" abuse the system. I'm trying not to be jaded but I'm so sick of being harassed by my doctor's nurse about why it is I need pain medicine! I'm not the drug addict, this is not enjoyable, it's painful and I just want to get through my day with as much normalcy as possible, and not deal with you on too of this debilitating disease! Since one of my doctors nurses took it upon herself to play doctor I just ask for him to return my call or his other more compassionate nurse so it's less of a headache getting a refill of the Percocet or pain patch.
Thanks, that's my rant!
My internist actually prescribed. He was already prescribing me narcotics before I got to my pain mgmt doc so with it being so regulated, they did not want it to switch doctors on prescribing it. I was on Percocet but is wake up feelin like I got slammed in the face if I would accidentally lay on my right side so he tried fentanyl patch 12 mcg. It gave me my life back!
Granny said:
Kerry, what pain patch are you using? I am surprised your neuro prescribes narcotics for you. I have to use my pain doc for that. Thanks, Sharon
kerry said:That is so horrible about the PA. I Am lucky to have found a skilled psychiatrist who has also dealt with chronic pain, and puts the behavior of these medical "professionals" in perspective for me. So I don't in fact- go crazy! He calls it the "mother hen" phenomenon at the doctors office. Whomever answers the phone and has to deal with us requesting more narcotics for our pain is to give us a hard time, be rude, ignorant, and protect the doctor from having to deal with us. Welcome to our bureaucratic society where the government dictates our treatment and doesn't leave it up to the doctor because there have been to many "Dr, Feel Goods" abuse the system. I'm trying not to be jaded but I'm so sick of being harassed by my doctor's nurse about why it is I need pain medicine! I'm not the drug addict, this is not enjoyable, it's painful and I just want to get through my day with as much normalcy as possible, and not deal with you on too of this debilitating disease! Since one of my doctors nurses took it upon herself to play doctor I just ask for him to return my call or his other more compassionate nurse so it's less of a headache getting a refill of the Percocet or pain patch.
Thanks, that's my rant!
I can't tolerate that one...I had an adverse reaction in '09, not good...thanks for letting me know. Sharon
kerry said:
My internist actually prescribed. He was already prescribing me narcotics before I got to my pain mgmt doc so with it being so regulated, they did not want it to switch doctors on prescribing it. I was on Percocet but is wake up feelin like I got slammed in the face if I would accidentally lay on my right side so he tried fentanyl patch 12 mcg. It gave me my life back!
Granny said:Kerry, what pain patch are you using? I am surprised your neuro prescribes narcotics for you. I have to use my pain doc for that. Thanks, Sharon
kerry said:That is so horrible about the PA. I Am lucky to have found a skilled psychiatrist who has also dealt with chronic pain, and puts the behavior of these medical "professionals" in perspective for me. So I don't in fact- go crazy! He calls it the "mother hen" phenomenon at the doctors office. Whomever answers the phone and has to deal with us requesting more narcotics for our pain is to give us a hard time, be rude, ignorant, and protect the doctor from having to deal with us. Welcome to our bureaucratic society where the government dictates our treatment and doesn't leave it up to the doctor because there have been to many "Dr, Feel Goods" abuse the system. I'm trying not to be jaded but I'm so sick of being harassed by my doctor's nurse about why it is I need pain medicine! I'm not the drug addict, this is not enjoyable, it's painful and I just want to get through my day with as much normalcy as possible, and not deal with you on too of this debilitating disease! Since one of my doctors nurses took it upon herself to play doctor I just ask for him to return my call or his other more compassionate nurse so it's less of a headache getting a refill of the Percocet or pain patch.
Thanks, that's my rant!
Sara, I read all your posts. You have some other things going on that need to be discussed with your neuro. I am so sorry you are a young mother dealing with chronic pain. I was a young mother too, even went through a pregnancy with tmj, facial pain, neck pain, nothing for pain then or for years was offered to me, that was a long time ago for me. My kids are grown with kids now. I know how challenging it is to have young children and a baby. My heart goes out to you. Sharon
Sara, I can feel your fear. Not knowing and knowing there is something going on that is not normal, the coming and going must make you feel is it really all happening. I am so much older, 57, but have dealt with multiple chronic pain problems and symptoms that were so very weird it spooks you. I am very concerned for these leg symptoms you are having, doesn't ring a bell for me since most of my leg pain was from herniated disks but now with a spinal cord injury since 2000 from a pain pump I do understand the weird feelings in the legs. I have neuropathic pain now. It all doesn't seem to make sense, why the face and then the legs. Will have to do some googling for you. And oh yes, I can relate to having so many issues so young and having to pull it all together and still go to work with 2 young children. I am so afraid yours could be the beginning of some neuro problems...don't let the doctor tell you it is from the stress of a new baby and needing to work. Even now I get that because they really don't have much to offer me.
You are very young, just remember one thing, these doctors are not Gods, they are practicing medicine, they don't have all the answers. I used to think they were Gods, they just have big egos sometimes. I hope your neuro is caring and listening. I will keep you in my prayers. Just when I think my day is going to be hard to get through, I think I will try a little harder thinking of your day. Reminds me of my daughter who by the way is very healthy other than mild tmj and a coming and going of a disease of her digestional system, she has a 3 year old and a 1 year old, but fortunately can stay home but I never underestimate her daily struggles being a young mother. I will not say this or that is going on with you, I hope your neuro can get some answers to you. Sharon
Sara said:
Thank you so much for your kind words. They brought tears to my eyes <3 it really is a struggle. Thankfully I seem to be having a much needed break from the face pain. I don't know why but I am not questioning it! I do think you are right, there is something else going on. Or maybe this is just me? But I don't think so. I'm sitting here nursing my baby before work, and dreading having to go stand on my heavy, achy, buzzing, prickly, tingly legs for 8 hours. However, it's much better than the face pain. But I'm 33 years old! I shouldn't be saying "oh I'm glad I'm having this pain and not that pain" ya know? Countdown to the neuro appt! 9 days!
I love what Sharon wrote! Agree whole-heartedly!
((((<3))))
Sara Your achy heavy legs ring a bell with me. When I have a really bad flare up with the HC I also get heavy really achy legs, like its a real effort just to move them. I used to run a lot but struggled because of the legs problem and have since found out exercise is really bad for HC. I also get pain down my spine that radiates out across the bottom of my back. I have been told its not connected with the HC but this only happens when I'm getting a flare up with the HC, its all very strange. Just keep positive Sara, you havn't got long to wait to see your Neuro. Have you kept a pain diary? This can really help the Neuro. Make sure he looks at it and really takes on board what you are telling him. Unfortunately, the first Neuro I saw didn't even bother looking at my pain diary and completely misdiagnosed A Typical facial pain so its really important that he listens and helps. If you are not happy with what you are being told don't be frightened to get a second, third or fourth opinion. Nobody knows you better than you and you know what you're body is doing better than anyone. I hope all goes well for you and you get the treatment you need. Keep us posted here so we know how you're getting on and we are all here for you if you need a chat or rant Take care
Stephyb, what is HC? Sharon
stephyb said:
Sara Your achy heavy legs ring a bell with me. When I have a really bad flare up with the HC I also get heavy really achy legs, like its a real effort just to move them. I used to run a lot but struggled because of the legs problem and have since found out exercise is really bad for HC. I also get pain down my spine that radiates out across the bottom of my back. I have been told its not connected with the HC but this only happens when I'm getting a flare up with the HC, its all very strange. Just keep positive Sara, you havn't got long to wait to see your Neuro. Have you kept a pain diary? This can really help the Neuro. Make sure he looks at it and really takes on board what you are telling him. Unfortunately, the first Neuro I saw didn't even bother looking at my pain diary and completely misdiagnosed A Typical facial pain so its really important that he listens and helps. If you are not happy with what you are being told don't be frightened to get a second, third or fourth opinion. Nobody knows you better than you and you know what you're body is doing better than anyone. I hope all goes well for you and you get the treatment you need. Keep us posted here so we know how you're getting on and we are all here for you if you need a chat or rant Take care
Sara, what is HC? Sharon
Sara said:
((( <3 )))) -----that's a hug!
Granny said:Sara, I can feel your fear. Not knowing and knowing there is something going on that is not normal, the coming and going must make you feel is it really all happening. I am so much older, 57, but have dealt with multiple chronic pain problems and symptoms that were so very weird it spooks you. I am very concerned for these leg symptoms you are having, doesn't ring a bell for me since most of my leg pain was from herniated disks but now with a spinal cord injury since 2000 from a pain pump I do understand the weird feelings in the legs. I have neuropathic pain now. It all doesn't seem to make sense, why the face and then the legs. Will have to do some googling for you. And oh yes, I can relate to having so many issues so young and having to pull it all together and still go to work with 2 young children. I am so afraid yours could be the beginning of some neuro problems...don't let the doctor tell you it is from the stress of a new baby and needing to work. Even now I get that because they really don't have much to offer me.
You are very young, just remember one thing, these doctors are not Gods, they are practicing medicine, they don't have all the answers. I used to think they were Gods, they just have big egos sometimes. I hope your neuro is caring and listening. I will keep you in my prayers. Just when I think my day is going to be hard to get through, I think I will try a little harder thinking of your day. Reminds me of my daughter who by the way is very healthy other than mild tmj and a coming and going of a disease of her digestional system, she has a 3 year old and a 1 year old, but fortunately can stay home but I never underestimate her daily struggles being a young mother. I will not say this or that is going on with you, I hope your neuro can get some answers to you. Sharon
Sara said:Thank you so much for your kind words. They brought tears to my eyes <3 it really is a struggle. Thankfully I seem to be having a much needed break from the face pain. I don't know why but I am not questioning it! I do think you are right, there is something else going on. Or maybe this is just me? But I don't think so. I'm sitting here nursing my baby before work, and dreading having to go stand on my heavy, achy, buzzing, prickly, tingly legs for 8 hours. However, it's much better than the face pain. But I'm 33 years old! I shouldn't be saying "oh I'm glad I'm having this pain and not that pain" ya know? Countdown to the neuro appt! 9 days!
I still do not know what the HC abbreviated means, but yes, you will find yourself if not your doctors ruling out before they will be able to pinpoint what your problem is with the legs. Sharon, I got that hug by the way, don't know why we click on those symbols and get something else! Sharon
Sara said:
HC is something Stehpyb has. I have researched it and I don't think it's what is going on.
Granny said:Sara, what is HC? Sharon
Sara said:((( <3 )))) -----that's a hug!
Granny said:Sara, I can feel your fear. Not knowing and knowing there is something going on that is not normal, the coming and going must make you feel is it really all happening. I am so much older, 57, but have dealt with multiple chronic pain problems and symptoms that were so very weird it spooks you. I am very concerned for these leg symptoms you are having, doesn't ring a bell for me since most of my leg pain was from herniated disks but now with a spinal cord injury since 2000 from a pain pump I do understand the weird feelings in the legs. I have neuropathic pain now. It all doesn't seem to make sense, why the face and then the legs. Will have to do some googling for you. And oh yes, I can relate to having so many issues so young and having to pull it all together and still go to work with 2 young children. I am so afraid yours could be the beginning of some neuro problems...don't let the doctor tell you it is from the stress of a new baby and needing to work. Even now I get that because they really don't have much to offer me.
You are very young, just remember one thing, these doctors are not Gods, they are practicing medicine, they don't have all the answers. I used to think they were Gods, they just have big egos sometimes. I hope your neuro is caring and listening. I will keep you in my prayers. Just when I think my day is going to be hard to get through, I think I will try a little harder thinking of your day. Reminds me of my daughter who by the way is very healthy other than mild tmj and a coming and going of a disease of her digestional system, she has a 3 year old and a 1 year old, but fortunately can stay home but I never underestimate her daily struggles being a young mother. I will not say this or that is going on with you, I hope your neuro can get some answers to you. Sharon
Sara said:Thank you so much for your kind words. They brought tears to my eyes <3 it really is a struggle. Thankfully I seem to be having a much needed break from the face pain. I don't know why but I am not questioning it! I do think you are right, there is something else going on. Or maybe this is just me? But I don't think so. I'm sitting here nursing my baby before work, and dreading having to go stand on my heavy, achy, buzzing, prickly, tingly legs for 8 hours. However, it's much better than the face pain. But I'm 33 years old! I shouldn't be saying "oh I'm glad I'm having this pain and not that pain" ya know? Countdown to the neuro appt! 9 days!
HC is Hemicrania Continua
Sara, you are right, you do not have HC. Thanks stephyb for informing me. Sounds horrible too. I just friended another young mother 23 who has entered she was dx'd by Dr. Google. Sharon
Sara,
MS is always something to rule out when you present with TN at an early age (under50, I think?) I too am concerned with your other neuropathic issues…but, I do think there can be many causes and try not to worry too much before Wednesday. I believe your neuro will order and MRI and that will help tremendously. I will pray for you, my advice would be to stay off Dr. google for a bit to keep yourself less stressed out. Whatever this turns out to be, medicine is advanced and getting a diagnosis will be helpful in treatment. I have TN and fibro…lots of similarities with what you describe. I pray for your peace and comfort during this time and that you have a knowledgable and compassionate neuro who will get you on the road to recovery.
Hugs,
Saber