Aa
New meds!
I wanted to tell everyone about my new meds. Some of you know the story but to other who do not I have bilateral trigeminal neuralgia. It has been really, really bad for some time now. Ok so here's the story;
I returned to the 1st neuro. The very first one I ever went to. Amazing I know. He was very nice! To my surprise ( he was always a goob before), anyway, he enters the room and says "So you couldn't just be happy with pain on one side? You had to go and get it on the other side too?" A joke right off the bat. I was thinking "This could be good." So we talk about everything and he said "I know you have tried a lot of medicine in the past but before we do anything really invasive I want to try a couple more things."
He prescribed Lamictal. He stated that narcotics alone would not be sufficient for my pain and if this did not work there were a couple more things he would like to try. Out of all the anti-epileptic medication there is only 3 that I have not taken according to the neuro. He also wanted another MRI. So then he says " Do you have any questions for me?" I at this point am in total shock and awe.
I said I do have one thing I would like to asked. "Why did all the neurosurgeons say I have MS? You have never mentioned it before. He said that was why he ordered the MRI. Because being my age and having this since 2003 and being bilateral now sends a red flag up for him. He wants to check for leisions since I have not had any remission time since november 2007.
He said if I do have MS he will still have to treat my symptoms because the medicine for MS is only to slow the proggression of the disease and all symptoms have to be treated as they present. Makes sense to me now.! Finally what I needed to hear an explaination. Well I was totally satisfied with this visit!
The next week was my appointment with the Pain Management Doc. Nice guy he was. (only he made me get undressed and put on a gown lol) He said right up front he had no expirience with TN but he wanted to help me. He went out of the room for me to get dressed and it was forever before he came back. But when he did he sat down and said " Okay, I am not sure what to give you so here are the options"
1. MS Contin-- suggested that this may not work at all. Told him I had taken it before at the time of diagnosis and it made me unable to urinate, but was willing to do whatever he thought.
2. OxyContin-- Same class Opiate. Stronger than MS Contin but unsure of benefit.
3. Pain Patch-- did not elaborate on that
4 Opana ER-- Opiate just as MS Contin and OxyContin supposed to be twice as strong as OxyC. Really recommended this one with Opana quick release for break through.
So prescribed Opana ER 10 MG and Opana 5 mg for break through. Too early to tell if it will suffice but so far pain intensity is lower most of the time. TNA sent email of study OC and Preglabin with good results and this treatment is along the very same line. Anti epileptic and Opiate. He also checked on a topical cream which is Neuro-cream to see if it could be applied to the face and called the next day to say he called into the pharmacy and I could pick it up. This cream has Lidocaine in it but takes up to 6 weeks to get the desired result.
I hope and pray this will work. But for the MRI, I cannot get it done because I have no insurance and it is too expensive. The Opana costs me 230.00 every 2 weeks and the Lamictal would have been 500 but got dr to give samples.
Sorry have not posted in a long time so I know this is lengthy.
I returned to the 1st neuro. The very first one I ever went to. Amazing I know. He was very nice! To my surprise ( he was always a goob before), anyway, he enters the room and says "So you couldn't just be happy with pain on one side? You had to go and get it on the other side too?" A joke right off the bat. I was thinking "This could be good." So we talk about everything and he said "I know you have tried a lot of medicine in the past but before we do anything really invasive I want to try a couple more things."
He prescribed Lamictal. He stated that narcotics alone would not be sufficient for my pain and if this did not work there were a couple more things he would like to try. Out of all the anti-epileptic medication there is only 3 that I have not taken according to the neuro. He also wanted another MRI. So then he says " Do you have any questions for me?" I at this point am in total shock and awe.
I said I do have one thing I would like to asked. "Why did all the neurosurgeons say I have MS? You have never mentioned it before. He said that was why he ordered the MRI. Because being my age and having this since 2003 and being bilateral now sends a red flag up for him. He wants to check for leisions since I have not had any remission time since november 2007.
He said if I do have MS he will still have to treat my symptoms because the medicine for MS is only to slow the proggression of the disease and all symptoms have to be treated as they present. Makes sense to me now.! Finally what I needed to hear an explaination. Well I was totally satisfied with this visit!
The next week was my appointment with the Pain Management Doc. Nice guy he was. (only he made me get undressed and put on a gown lol) He said right up front he had no expirience with TN but he wanted to help me. He went out of the room for me to get dressed and it was forever before he came back. But when he did he sat down and said " Okay, I am not sure what to give you so here are the options"
1. MS Contin-- suggested that this may not work at all. Told him I had taken it before at the time of diagnosis and it made me unable to urinate, but was willing to do whatever he thought.
2. OxyContin-- Same class Opiate. Stronger than MS Contin but unsure of benefit.
3. Pain Patch-- did not elaborate on that
4 Opana ER-- Opiate just as MS Contin and OxyContin supposed to be twice as strong as OxyC. Really recommended this one with Opana quick release for break through.
So prescribed Opana ER 10 MG and Opana 5 mg for break through. Too early to tell if it will suffice but so far pain intensity is lower most of the time. TNA sent email of study OC and Preglabin with good results and this treatment is along the very same line. Anti epileptic and Opiate. He also checked on a topical cream which is Neuro-cream to see if it could be applied to the face and called the next day to say he called into the pharmacy and I could pick it up. This cream has Lidocaine in it but takes up to 6 weeks to get the desired result.
I hope and pray this will work. But for the MRI, I cannot get it done because I have no insurance and it is too expensive. The Opana costs me 230.00 every 2 weeks and the Lamictal would have been 500 but got dr to give samples.
Sorry have not posted in a long time so I know this is lengthy.
Thank you! I have been a bit under the weather so haven't been on to check posts. The 3T MRI machine is the only one I am aware of in this area. There may be one about 60 miles south of here in Birmingham. I will have to check to see.
I think that if the dr would be willing to work with me on payment it would be better for me to go there because he reads it himself immediately. I need to check out my options but it good to know about the Stark Rule I may need it. Good information, Thanks. I will check on all the stuff since I am over my stomach virus (i think).
I think that if the dr would be willing to work with me on payment it would be better for me to go there because he reads it himself immediately. I need to check out my options but it good to know about the Stark Rule I may need it. Good information, Thanks. I will check on all the stuff since I am over my stomach virus (i think).
Hi there!
It was very nice to read of your good experiences with two doctors, even if one is a past goob. I guess even goobs can change. I loved your positive tone, valuable information, and all.
However, I think there is a law against sending you only to a place that is owned by the prescriber, there's even a name for the law. The Stark Rule. It's to keep doctors, their families, or clinics from ordering tests to be done only where they will receive a profit from. It's a complicated set of regulations, but does give you the option of looking elsewhere for a reduced rate for your MRI.
Then again, you would want to get a MRI done on a 3T. Is there another one within reasonable traveling distance?
Best of luck,
Kathy
It was very nice to read of your good experiences with two doctors, even if one is a past goob. I guess even goobs can change. I loved your positive tone, valuable information, and all.
However, I think there is a law against sending you only to a place that is owned by the prescriber, there's even a name for the law. The Stark Rule. It's to keep doctors, their families, or clinics from ordering tests to be done only where they will receive a profit from. It's a complicated set of regulations, but does give you the option of looking elsewhere for a reduced rate for your MRI.
Then again, you would want to get a MRI done on a 3T. Is there another one within reasonable traveling distance?
Best of luck,
Kathy
just wanted to jump in and say i enjoyed your read. good info there. certainly hope
your new track proves helpful and gives you some decent relief! It is just a Godsend when you get a bit of relief when these episodes happen.
"I think this was totally God because I have "tried" to turn it all over to him hoping for better results." I find His time frame of patience and mine often are not the same. :-)
Prayerful thoughts to all of us.
your new track proves helpful and gives you some decent relief! It is just a Godsend when you get a bit of relief when these episodes happen.
"I think this was totally God because I have "tried" to turn it all over to him hoping for better results." I find His time frame of patience and mine often are not the same. :-)
Prayerful thoughts to all of us.
Oh yeah I forgot, I missed you guys!!!!! and sorry for the grammar, guess I am fogged or something. maybe you can understand it though.
Thank you guys for the advise. I will check around and make some phone calls. I guess I was so bummed out about it I wasn't thinking. That's what you guys are for right?
Slowe: I do have to orders but it for for a specific place in which I think this dr. owns and it has the only 3 tesla here. You are right he did flip a switch from the first time I saw him. LOL! I think this was totally God because I have "tried" to turn it all over to him hoping for better results. Thank you for your prayers and thoughts.
Quix: I am not 100% sure if we had the discussion of the bilateral TN but I know you did direct me to the end the pain website former TNA now think they call it Neurological Facial pain organization or sumtin like that. I can't remember. lol! Thank you so much for everything and I will do the investigative work to find someone that can help me out with the MRI.
Meg: Thanks for your advise I will get on that right away.
You all are the best thank you for all the encouragements and pick me uppers that you have up your sleeve when needed.
Love and hugs to you all!
Slowe: I do have to orders but it for for a specific place in which I think this dr. owns and it has the only 3 tesla here. You are right he did flip a switch from the first time I saw him. LOL! I think this was totally God because I have "tried" to turn it all over to him hoping for better results. Thank you for your prayers and thoughts.
Quix: I am not 100% sure if we had the discussion of the bilateral TN but I know you did direct me to the end the pain website former TNA now think they call it Neurological Facial pain organization or sumtin like that. I can't remember. lol! Thank you so much for everything and I will do the investigative work to find someone that can help me out with the MRI.
Meg: Thanks for your advise I will get on that right away.
You all are the best thank you for all the encouragements and pick me uppers that you have up your sleeve when needed.
Love and hugs to you all!
Do check around, i know here in my county MRI's are double what they are an hr away...have no idea why.
meg
meg
Hey, it is gtood to see you back! You were one of the very early members of the forum and I felt so helpless for you that your doctors were not paying any attention to you and accusing you of just being stressed. Yeah, right... I also remember how shabbily your employer treated you.
Did I ever tell you that bilateral Trigeminal Neuralgia is almost exclusively seen in MS? Your neurosurgeons were telling you correctly.
I am thrilled that your neuro is being human and taking your seriously but, I would have rathered that he had not been a goob before. One should not have to justify decent behavior from a neurologist by having a clear diagnosis.
I also encourage you to call around to see if any of the hospitals in the area will have lower cost imaging and testing for those without health insurance. Often the Catholic hospitals will have such an arrangement.
I'm sad that you failed all of the regular medications for TN. I hope the pain management doc can give you some relief.
I hope you stay with us this time!
Quix
Did I ever tell you that bilateral Trigeminal Neuralgia is almost exclusively seen in MS? Your neurosurgeons were telling you correctly.
I am thrilled that your neuro is being human and taking your seriously but, I would have rathered that he had not been a goob before. One should not have to justify decent behavior from a neurologist by having a clear diagnosis.
I also encourage you to call around to see if any of the hospitals in the area will have lower cost imaging and testing for those without health insurance. Often the Catholic hospitals will have such an arrangement.
I'm sad that you failed all of the regular medications for TN. I hope the pain management doc can give you some relief.
I hope you stay with us this time!
Quix
Hi Girl!
I was thinking about you soooo very much.
WOW, this guy really flipped the switch! And, your pain management Dr. sound good too.
Well, I know Doni found her local hospital would to the MRI for a fraction of what it costs those w/insurance. Did he write out the script? Could you make a few phone calls to find one in your area? Typically, you can make payments.
You are on your way I feel, finally. I know you have been in pain for such a long time w/the TN. I pray this new combo gives you some relief.
So nice to see you here - you've been missed.
-Shell
I was thinking about you soooo very much.
WOW, this guy really flipped the switch! And, your pain management Dr. sound good too.
Well, I know Doni found her local hospital would to the MRI for a fraction of what it costs those w/insurance. Did he write out the script? Could you make a few phone calls to find one in your area? Typically, you can make payments.
You are on your way I feel, finally. I know you have been in pain for such a long time w/the TN. I pray this new combo gives you some relief.
So nice to see you here - you've been missed.
-Shell
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