That Really Describes It!

1

I've always told people I feel like I have a clamp on my cheek - that article really nailed it (no pun intended). Great article, thanks for posting. I have atypical, bilateral post-herpetic TN and am now on my third doctor. Sucks having a rare disease. Found a pharmacy that will compound Gabapentin (I can't take much in the way of pills due to ulcers) so hopefully will get that in cream form. May have to end up paying for it myself. I'd give up food to get rid of this excruciating eye pain. My doctor is having me see a rheumatolgist to rule out Lupus as she says I must have something else going on to have such bad pain - but I think its just TN. At least I got the pain out of my scalp!!! Can't read, watch TV, go on the light, or be on the computer much. I want my life back!!! Love to all - Susan

2

Oh, Susan, and you deserve your life back!

I had a hard time, at first, articulating what was happening to me as well. No one understood. They told me I had TMJ between the years of '03 and '09. For 7 yrs., I went on, suffering every day, trying my best to work and care for my children.

I take Gabapentin too, but I am also on Oxycodone. I have always wondered what Gabapentin would do on it's own to help. They never brought up Lupus in the course of my treatment. They ruled out TMJ and M.S. with MRIs'. I saw your post here, and I may not respond to everything, but felt compelled to respond to you.

You have found a good support group online. I hope you have a good support group at home, as well. I do. I can't always make them understand everything. They are always wondering why it seems I am being jerked around by the healthcare system, but they have been explained my condition fully. Having them understand makes all of the difference.

I've tried many things during the course of my disorder. Opiates are the only thing which bring me much relief. I would love to find something else which worked. I used to think I was a candidate for surgery, but us Atypicals rarely benefit from it. We do have one of our member's, Tomey, who I am going to check in with later to ask to his progress.

At any rate, I would like to talk to everyone here, every time they say anything, as I see you guys all as brothers and sisters, because of what you have been through. Atypical Trigeminal Neuralgia is life changing, to say the very least. There is only one piece of literature out there for TN sufferers. It touches on ATN. It's called "Striking Back", the Trigeminal Neuralgia Handbook. It is the only piece of literature out there that I know of aimed directly at us. This is a rare animal you are suffering with.

We are glad to hear from you, because, like I always preach . . . .through exchange of ideas and shared experiences, it could be that we find a better understanding, and possibly more solutions. Feel free to contact me anytime. I will be sending you a friends request, if I haven't already.

Hugs,

Stef

3

Thanks for your support - did you ever (or anyone reading this) take Prednisone? It's so weird how my lymph nodes and eyes got so much better on it for three weeks. I think that's why my neurologist wants me to see a rheumatologist - lymph node pain and prednisone use. I don't care what its called, as long as it goes away!!! I think the lymph node pain is just from the eye/cheek inflammation, as I had lymph node pain when my GI tract was all inflammed. I had a 2 month pain free period between the GI pain and the TN pain - oh joy! Stress has brought on my neuralgia (as it has for the past 10 years) but I still have a hard time convincing my neurologist that this is really what I have and is causing so much pain. One of these days I will be better!!!

Susan

Susan



Stef said:

Oh, Susan, and you deserve your life back!

I had a hard time, at first, articulating what was happening to me as well. No one understood. They told me I had TMJ between the years of '03 and '09. For 7 yrs., I went on, suffering every day, trying my best to work and care for my children.

I take Gabapentin too, but I am also on Oxycodone. I have always wondered what Gabapentin would do on it's own to help. They never brought up Lupus in the course of my treatment. They ruled out TMJ and M.S. with MRIs'. I saw your post here, and I may not respond to everything, but felt compelled to respond to you.

You have found a good support group online. I hope you have a good support group at home, as well. I do. I can't always make them understand everything. They are always wondering why it seems I am being jerked around by the healthcare system, but they have been explained my condition fully. Having them understand makes all of the difference.

I've tried many things during the course of my disorder. Opiates are the only thing which bring me much relief. I would love to find something else which worked. I used to think I was a candidate for surgery, but us Atypicals rarely benefit from it. We do have one of our member's, Tomey, who I am going to check in with later to ask to his progress.

At any rate, I would like to talk to everyone here, every time they say anything, as I see you guys all as brothers and sisters, because of what you have been through. Atypical Trigeminal Neuralgia is life changing, to say the very least. There is only one piece of literature out there for TN sufferers. It touches on ATN. It's called "Striking Back", the Trigeminal Neuralgia Handbook. It is the only piece of literature out there that I know of aimed directly at us. This is a rare animal you are suffering with.

We are glad to hear from you, because, like I always preach . . . .through exchange of ideas and shared experiences, it could be that we find a better understanding, and possibly more solutions. Feel free to contact me anytime. I will be sending you a friends request, if I haven't already.

Hugs,

Stef

4

Sue,

Red, do you have any thoughts on this question? (Red is a wellspring of information, seriously) No, I never took Prednisone, but then again, perhaps your doc knows something I don't regarding Rheumatology vs. Lymph Node Pain. Hmmm. . . .anyone knows that stress can make worsen almost any disorder.

From talking to people, and from personal experience, Neurolgists can be hard nuts to crack. They do not like to be told that they may be off-track. But, then again, you know your body better than they possibly could. I wonder how long you have been seeing this Neurologist and how much time he/she spends speaking with you. Mine dismissed me as inoperable, for now, and referred me to a Head and Face pain specialist, upon my 2nd visit, armed with only a clean MRI of my brain. So, I am trying to get a referral to schedule a second opinion. I do believe most ATN patients cannot be helped by surgery, but managed effectively by medication (this seems to be what I get from what I read and general feedback) Now, I am hearing talk that MRIs' of your TN nerve can actually be performed? (something I've been meaning to research, but haven't had the time w/ so much going on raising 2 girls, at the moment).

Does anyone know anything about a Lupus/ATN link?

I am glad that the pain is out of your scalp, but as you know the upper branch of the TN nerve extends to the scalp. I suffer from light sensitivity too, at times. A long time in front of the computer also seems to aggravate my ATN, for some reason.

I like your attitude! I WILL be better! That is the attitude which gets most of us through our days and nights. Seriously! I am also wondering if you have had shingles. That would be post-herpetic Neuralgia, right? I'm simply looking to learn with this reply, both from you and hopefully the person who answers your question. DOES ANYONE KNOW ABOUT THIS?

(cogs in Stef's head turn at almost 4 a.m. . . .I need to Google this, or look it up in "Striking Back", perhaps, the TN handbook and only book published that I am aware of on the subject. It is easily found on Amazon.com. I always tell everyone it is a must-read)

Talk to you soon, I hope, Susan!



Sue Richey said:

Thanks for your support - did you ever (or anyone reading this) take Prednisone? It's so weird how my lymph nodes and eyes got so much better on it for three weeks. I think that's why my neurologist wants me to see a rheumatologist - lymph node pain and prednisone use. I don't care what its called, as long as it goes away!!! I think the lymph node pain is just from the eye/cheek inflammation, as I had lymph node pain when my GI tract was all inflammed. I had a 2 month pain free period between the GI pain and the TN pain - oh joy! Stress has brought on my neuralgia (as it has for the past 10 years) but I still have a hard time convincing my neurologist that this is really what I have and is causing so much pain. One of these days I will be better!!!

Susan

Susan



Stef said:

Oh, Susan, and you deserve your life back!

I had a hard time, at first, articulating what was happening to me as well. No one understood. They told me I had TMJ between the years of '03 and '09. For 7 yrs., I went on, suffering every day, trying my best to work and care for my children.

I take Gabapentin too, but I am also on Oxycodone. I have always wondered what Gabapentin would do on it's own to help. They never brought up Lupus in the course of my treatment. They ruled out TMJ and M.S. with MRIs'. I saw your post here, and I may not respond to everything, but felt compelled to respond to you.

You have found a good support group online. I hope you have a good support group at home, as well. I do. I can't always make them understand everything. They are always wondering why it seems I am being jerked around by the healthcare system, but they have been explained my condition fully. Having them understand makes all of the difference.

I've tried many things during the course of my disorder. Opiates are the only thing which bring me much relief. I would love to find something else which worked. I used to think I was a candidate for surgery, but us Atypicals rarely benefit from it. We do have one of our member's, Tomey, who I am going to check in with later to ask to his progress.

At any rate, I would like to talk to everyone here, every time they say anything, as I see you guys all as brothers and sisters, because of what you have been through. Atypical Trigeminal Neuralgia is life changing, to say the very least. There is only one piece of literature out there for TN sufferers. It touches on ATN. It's called "Striking Back", the Trigeminal Neuralgia Handbook. It is the only piece of literature out there that I know of aimed directly at us. This is a rare animal you are suffering with.

We are glad to hear from you, because, like I always preach . . . .through exchange of ideas and shared experiences, it could be that we find a better understanding, and possibly more solutions. Feel free to contact me anytime. I will be sending you a friends request, if I haven't already.

Hugs,

Stef

5

Hey Stef, I had chicken pox when I was 39 and had it REALLY BAD - I turned yellow!!! And the virus just stayed in my system, stress brings it up. I never had shingles on my skin. Wish I would of had that instead of this excruciating eye pain. My neurologist said Gabapentin was not available in a compounded form, if I could find it somewhere she would give me a perscription - so I called around locally and found a pharmacy that would do it, no problem. This is the problem with having a rare disease - doctors, even neurologists, are not that familiar with it. I am hoping to be able to get the cream soon and get up to 600 mg so the eye pain will go away. I had my first appointment with a new general md for both my husband and myself, he is fabulous!!! One doctor office, we were with him about 1-1/2 hours. He said he will do anything he can help me with for my eye pain. You do have to pay an extra fee for extended access to him, but for me, it is worth it. Words to the wise - you don’t have to be stuck with one doctor forever!!!

Stef said:

Sue,

Red, do you have any thoughts on this question? (Red is a wellspring of information, seriously) No, I never took Prednisone, but then again, perhaps your doc knows something I don't regarding Rheumatology vs. Lymph Node Pain. Hmmm. . . .anyone knows that stress can make worsen almost any disorder.

From talking to people, and from personal experience, Neurolgists can be hard nuts to crack. They do not like to be told that they may be off-track. But, then again, you know your body better than they possibly could. I wonder how long you have been seeing this Neurologist and how much time he/she spends speaking with you. Mine dismissed me as inoperable, for now, and referred me to a Head and Face pain specialist, upon my 2nd visit, armed with only a clean MRI of my brain. So, I am trying to get a referral to schedule a second opinion. I do believe most ATN patients cannot be helped by surgery, but managed effectively by medication (this seems to be what I get from what I read and general feedback) Now, I am hearing talk that MRIs' of your TN nerve can actually be performed? (something I've been meaning to research, but haven't had the time w/ so much going on raising 2 girls, at the moment).

Does anyone know anything about a Lupus/ATN link?

I am glad that the pain is out of your scalp, but as you know the upper branch of the TN nerve extends to the scalp. I suffer from light sensitivity too, at times. A long time in front of the computer also seems to aggravate my ATN, for some reason.

I like your attitude! I WILL be better! That is the attitude which gets most of us through our days and nights. Seriously! I am also wondering if you have had shingles. That would be post-herpetic Neuralgia, right? I'm simply looking to learn with this reply, both from you and hopefully the person who answers your question. DOES ANYONE KNOW ABOUT THIS?

(cogs in Stef's head turn at almost 4 a.m. . . .I need to Google this, or look it up in "Striking Back", perhaps, the TN handbook and only book published that I am aware of on the subject. It is easily found on Amazon.com. I always tell everyone it is a must-read)

Talk to you soon, I hope, Susan!



Sue Richey said:

Thanks for your support - did you ever (or anyone reading this) take Prednisone? It's so weird how my lymph nodes and eyes got so much better on it for three weeks. I think that's why my neurologist wants me to see a rheumatologist - lymph node pain and prednisone use. I don't care what its called, as long as it goes away!!! I think the lymph node pain is just from the eye/cheek inflammation, as I had lymph node pain when my GI tract was all inflammed. I had a 2 month pain free period between the GI pain and the TN pain - oh joy! Stress has brought on my neuralgia (as it has for the past 10 years) but I still have a hard time convincing my neurologist that this is really what I have and is causing so much pain. One of these days I will be better!!!

Susan

Susan



Stef said:

Oh, Susan, and you deserve your life back!

I had a hard time, at first, articulating what was happening to me as well. No one understood. They told me I had TMJ between the years of '03 and '09. For 7 yrs., I went on, suffering every day, trying my best to work and care for my children.

I take Gabapentin too, but I am also on Oxycodone. I have always wondered what Gabapentin would do on it's own to help. They never brought up Lupus in the course of my treatment. They ruled out TMJ and M.S. with MRIs'. I saw your post here, and I may not respond to everything, but felt compelled to respond to you.

You have found a good support group online. I hope you have a good support group at home, as well. I do. I can't always make them understand everything. They are always wondering why it seems I am being jerked around by the healthcare system, but they have been explained my condition fully. Having them understand makes all of the difference.

I've tried many things during the course of my disorder. Opiates are the only thing which bring me much relief. I would love to find something else which worked. I used to think I was a candidate for surgery, but us Atypicals rarely benefit from it. We do have one of our member's, Tomey, who I am going to check in with later to ask to his progress.

At any rate, I would like to talk to everyone here, every time they say anything, as I see you guys all as brothers and sisters, because of what you have been through. Atypical Trigeminal Neuralgia is life changing, to say the very least. There is only one piece of literature out there for TN sufferers. It touches on ATN. It's called "Striking Back", the Trigeminal Neuralgia Handbook. It is the only piece of literature out there that I know of aimed directly at us. This is a rare animal you are suffering with.

We are glad to hear from you, because, like I always preach . . . .through exchange of ideas and shared experiences, it could be that we find a better understanding, and possibly more solutions. Feel free to contact me anytime. I will be sending you a friends request, if I haven't already.

Hugs,

Stef

6

Hi, Sue,

Whew! For the first time last night, I was up all night long with pain. I didn't sleep until 3 p.m. today. finally three hours. Gotta try to get back on track tonight. When 5 a.m. hit, I just decided to make coffee and get the kids ready for school.

I hear that chicken pox as an adult is a real misery, then to have this as a result, that is adding injury to insult, so to speak. I know. You don't have to be stuck, and I am looking for another good General Practitioner in my area, as well as trying to get a referral to Gloria's Neurologist in Illinois, by my pain clinic. This guy gets gets a four and five star patient review. My father wants a 2nd opinion, that I am inoperable, before I seek out long term maintenance meds.

As for myself, I've been down the road with too many meds to list and am opting to seek Methadone therapy, as opiate treatment seems to be the only thing that my pain responds too, and Methadone is the only one I have found that is long lasting enough to put me back in the workplace. I was a mortgage processor for many years and will have to seek training in another field anyway, as that one is dead for now. Methadone is the only one I find that doesn't zap my energy.

Neurontin takes the edge off, and I can tell when I am out, so it must be doing something. But, yes, I am with you on that one. You don't have to stay with the same doc. I am glad that you had a good experience with one!

Whenever one tells you that they will do anything that they can, I have found it is a good sign! Is till mean to cross reference both lupus and TN and fibromyalgia and TN later.

I hope you, and all of the rest of the people in our ATN group reading this are having the most pain free night possible!

Hugs,

Stef



Sue Richey said:

Hey Stef, I had chicken pox when I was 39 and had it REALLY BAD - I turned yellow!!! And the virus just stayed in my system, stress brings it up. I never had shingles on my skin. Wish I would of had that instead of this excruciating eye pain. My neurologist said Gabapentin was not available in a compounded form, if I could find it somewhere she would give me a perscription - so I called around locally and found a pharmacy that would do it, no problem. This is the problem with having a rare disease - doctors, even neurologists, are not that familiar with it. I am hoping to be able to get the cream soon and get up to 600 mg so the eye pain will go away. I had my first appointment with a new general md for both my husband and myself, he is fabulous!!!! One doctor office, we were with him about 1-1/2 hours. He said he will do anything he can help me with for my eye pain. You do have to pay an extra fee for extended access to him, but for me, it is worth it. Words to the wise - you don't have to be stuck with one doctor forever!!!

Stef said:

Sue,

Red, do you have any thoughts on this question? (Red is a wellspring of information, seriously) No, I never took Prednisone, but then again, perhaps your doc knows something I don't regarding Rheumatology vs. Lymph Node Pain. Hmmm. . . .anyone knows that stress can make worsen almost any disorder.

From talking to people, and from personal experience, Neurolgists can be hard nuts to crack. They do not like to be told that they may be off-track. But, then again, you know your body better than they possibly could. I wonder how long you have been seeing this Neurologist and how much time he/she spends speaking with you. Mine dismissed me as inoperable, for now, and referred me to a Head and Face pain specialist, upon my 2nd visit, armed with only a clean MRI of my brain. So, I am trying to get a referral to schedule a second opinion. I do believe most ATN patients cannot be helped by surgery, but managed effectively by medication (this seems to be what I get from what I read and general feedback) Now, I am hearing talk that MRIs' of your TN nerve can actually be performed? (something I've been meaning to research, but haven't had the time w/ so much going on raising 2 girls, at the moment).

Does anyone know anything about a Lupus/ATN link?

I am glad that the pain is out of your scalp, but as you know the upper branch of the TN nerve extends to the scalp. I suffer from light sensitivity too, at times. A long time in front of the computer also seems to aggravate my ATN, for some reason.

I like your attitude! I WILL be better! That is the attitude which gets most of us through our days and nights. Seriously! I am also wondering if you have had shingles. That would be post-herpetic Neuralgia, right? I'm simply looking to learn with this reply, both from you and hopefully the person who answers your question. DOES ANYONE KNOW ABOUT THIS?

(cogs in Stef's head turn at almost 4 a.m. . . .I need to Google this, or look it up in "Striking Back", perhaps, the TN handbook and only book published that I am aware of on the subject. It is easily found on Amazon.com. I always tell everyone it is a must-read)

Talk to you soon, I hope, Susan!



Sue Richey said:

Thanks for your support - did you ever (or anyone reading this) take Prednisone? It's so weird how my lymph nodes and eyes got so much better on it for three weeks. I think that's why my neurologist wants me to see a rheumatologist - lymph node pain and prednisone use. I don't care what its called, as long as it goes away!!! I think the lymph node pain is just from the eye/cheek inflammation, as I had lymph node pain when my GI tract was all inflammed. I had a 2 month pain free period between the GI pain and the TN pain - oh joy! Stress has brought on my neuralgia (as it has for the past 10 years) but I still have a hard time convincing my neurologist that this is really what I have and is causing so much pain. One of these days I will be better!!!

Susan

Susan



Stef said:

Oh, Susan, and you deserve your life back!

I had a hard time, at first, articulating what was happening to me as well. No one understood. They told me I had TMJ between the years of '03 and '09. For 7 yrs., I went on, suffering every day, trying my best to work and care for my children.

I take Gabapentin too, but I am also on Oxycodone. I have always wondered what Gabapentin would do on it's own to help. They never brought up Lupus in the course of my treatment. They ruled out TMJ and M.S. with MRIs'. I saw your post here, and I may not respond to everything, but felt compelled to respond to you.

You have found a good support group online. I hope you have a good support group at home, as well. I do. I can't always make them understand everything. They are always wondering why it seems I am being jerked around by the healthcare system, but they have been explained my condition fully. Having them understand makes all of the difference.

I've tried many things during the course of my disorder. Opiates are the only thing which bring me much relief. I would love to find something else which worked. I used to think I was a candidate for surgery, but us Atypicals rarely benefit from it. We do have one of our member's, Tomey, who I am going to check in with later to ask to his progress.

At any rate, I would like to talk to everyone here, every time they say anything, as I see you guys all as brothers and sisters, because of what you have been through. Atypical Trigeminal Neuralgia is life changing, to say the very least. There is only one piece of literature out there for TN sufferers. It touches on ATN. It's called "Striking Back", the Trigeminal Neuralgia Handbook. It is the only piece of literature out there that I know of aimed directly at us. This is a rare animal you are suffering with.

We are glad to hear from you, because, like I always preach . . . .through exchange of ideas and shared experiences, it could be that we find a better understanding, and possibly more solutions. Feel free to contact me anytime. I will be sending you a friends request, if I haven't already.

Hugs,

Stef

7

Stef do you have lupus like me? I have read stuff about lupus and TN. Auto immune diseases like lupus and MS have unusually high occurrences of TN. Google "Lupus and TN" and within some of those, you might find sub-topics of ATN.

Sheila