Pain Worsening

1

Hi everyone,

I have a question. When I was first dx'd wtih TN my neuro. prescribed Tegretol and Tramadol for the pain. Tegretol worked great for the pain, but the side effects were scary and I was unable to work while taking it. I called my neuro. who then prescribed Neurontin. It isn't working at all (on 600mg/qd), and actually the pain seems to be getting worse. Today for instance, pain free most of the morning, but returning from an outing the AC set off the pain, and the pain was persistant from approx 130 till 1130 or so. None of my meds helped. I guess my question is, has anyone experienced this? I'm wondering if my nerves are more sensitive now after stopping the Tegretol which worked to calm them, Or if this a natural progression of the disorder. I'm wondering if I have atypical TN. All I know is that this Is an awful disorder. I'm afraid of the pain,and I'm not a wuss, but I have a young daughter and a job that requires me to be outside, and with the public and this disorder is prevailing over my life and it sucks. If anyone can help I would greatly appreciate it, Kristin

2

Hi Kristin-
You are very right, TN sucks and what it does to our life sucks. I have been on all those meds and more. I basically have no other meds to try without long term damage to my liver. Its annoying, I am 20. Obviously, I am not a dr. but I can tell you my opinion. I think that it is possible that your body is realizing that it doesn’t have those meds in you and your body needs something to stop the pain. Call your neuro and see if you can go higher on the neurontin. My max a day was 3600 mg…it helped and then stopped helping. Also, it could just be a “bad” day. Maybe the pain is worse from a trigger yesterday and so it is more sensitive? Sadly, it also could be a progression of TN. But TN can come and go…so we all could wake up one day and be pain free! Wouldn’t that be awesome? I am trying to get through college right now. My sr year of HS I was put on Lyrica and I love it!It helps control the pain some and I dont really have any side affects. There are lots of meds to try…talk to your neuro. Would you consider trying a nerve block to see if you could be on less meds?

and P.S we are all scared. Pain is really scary, especially when we dont know when it will come, how long it will be, or how intense it will be!

I hope this helps!

3

Ally,
Thanks for responding. I’m sorry you are so young, and dealing with this, I’m almost 35 and it’s disrupting my life. Hang in there a get through school, it’s a huge sense of accomplishment. Today, so far, is a “good” day, just a slight ache, twinge, and I noticed a slight tingling on my left side (uh oh), I can deal with that. I haven’t noticed any side effects to the neurontin as I did with Tegretol, other than it isn’t really working. I plan on calling my neuro on Monday. You are though, the second person to recommend Lyrica to me…definately considering it. I just don’t want to rush through medications without giving them a chance to work. Tegretol was awful, my neuro wanted to try an even lower starting dose of Tregtol, but I nixed that, I have to work full time (without an option) and I really didn’t feel like I could do my best while on that. I really happy I found this site. It’s awsome to know that other people are dealing with this and I don’t have to explain and discribe the disorder and pain to anyone. Thanks again, Kristin

Ally Castellano said:

Hi Kristin-
You are very right, TN sucks and what it does to our life sucks. I have been on all those meds and more. I basically have no other meds to try without long term damage to my liver. Its annoying, I am 20. Obviously, I am not a dr. but I can tell you my opinion. I think that it is possible that your body is realizing that it doesn’t have those meds in you and your body needs something to stop the pain. Call your neuro and see if you can go higher on the neurontin. My max a day was 3600 mg…it helped and then stopped helping. Also, it could just be a “bad” day. Maybe the pain is worse from a trigger yesterday and so it is more sensitive? Sadly, it also could be a progression of TN. But TN can come and go…so we all could wake up one day and be pain free! Wouldn’t that be awesome? I am trying to get through college right now. My sr year of HS I was put on Lyrica and I love it!It helps control the pain some and I dont really have any side affects. There are lots of meds to try…talk to your neuro. Would you consider trying a nerve block to see if you could be on less meds?

and P.S we are all scared. Pain is really scary, especially when we dont know when it will come, how long it will be, or how intense it will be!

I hope this helps!

4

I am glad you don’t want to rush through meds. It is hard to be patient and let it build up in your body, but we have to. I hope you are able to find relief from something, and soon! wishing you the best!

Kristin D. said:

Ally,
Thanks for responding. I’m sorry you are so young, and dealing with this, I’m almost 35 and it’s disrupting my life. Hang in there a get through school, it’s a huge sense of accomplishment. Today, so far, is a “good” day, just a slight ache, twinge, and I noticed a slight tingling on my left side (uh oh), I can deal with that. I haven’t noticed any side effects to the neurontin as I did with Tegretol, other than it isn’t really working. I plan on calling my neuro on Monday. You are though, the second person to recommend Lyrica to me…definately considering it. I just don’t want to rush through medications without giving them a chance to work. Tegretol was awful, my neuro wanted to try an even lower starting dose of Tregtol, but I nixed that, I have to work full time (without an option) and I really didn’t feel like I could do my best while on that. I really happy I found this site. It’s awsome to know that other people are dealing with this and I don’t have to explain and discribe the disorder and pain to anyone. Thanks again, Kristin



Ally Castellano said:
Hi Kristin-
You are very right, TN sucks and what it does to our life sucks. I have been on all those meds and more. I basically have no other meds to try without long term damage to my liver. Its annoying, I am 20. Obviously, I am not a dr. but I can tell you my opinion. I think that it is possible that your body is realizing that it doesn’t have those meds in you and your body needs something to stop the pain. Call your neuro and see if you can go higher on the neurontin. My max a day was 3600 mg…it helped and then stopped helping. Also, it could just be a “bad” day. Maybe the pain is worse from a trigger yesterday and so it is more sensitive? Sadly, it also could be a progression of TN. But TN can come and go…so we all could wake up one day and be pain free! Wouldn’t that be awesome? I am trying to get through college right now. My sr year of HS I was put on Lyrica and I love it!It helps control the pain some and I dont really have any side affects. There are lots of meds to try…talk to your neuro. Would you consider trying a nerve block to see if you could be on less meds?

and P.S we are all scared. Pain is really scary, especially when we dont know when it will come, how long it will be, or how intense it will be!

I hope this helps!

5

Hi Kristin,
I’m sorry you are in pain. The TN could be worsening or it may just be a temporary increase. I think most of us have had TN get bad one day or several days and then have a good day and then bad days. I haven’t ever had mine to fully stop without medication but it was almost non-existent for a long time. A higher does of neurontin or another medicine may also help.
Liz

6

I hope you can find some relief…it is so hard not become consumed by this condition…whatever it is! I have never been ‘formally’ diagnosed, but am working on that. I am currently on 2400 mg of Neurontin, valium, and hydrocodone and occasionally I take baclofen and/or Lyrica. I do notice both of those do help on the really bad days. I am pregnant so have to be careful when and how much medication I am taking, but I plan to jump into the deep end of the pool after this pregnancy and find out exactly what it will take to feel better. I have never been on Tegretol, but was on Topamax and Lyrica at the same time and could totally control my pain, however I had such a terrible memory and side effects of the mixture that I quit the topamax and will never go back on that again. I do not seem to have any side effects of the Lyrica and Neurotin. Good Luck and I think that when the pain is too much, you will find that it is not even a question whether to increase your medication!

7

here’s the deal with Neurontin; the more you take, the less you get. sounds confusing right? it is! in pharmacology, bioavailability is used to describe the fraction of an administered dose of unchanged drug that reaches the systemic circulation, one of the principal pharmacokinetic properties of drugs. when a medication is administered orally, its bioavailability decreases due to incomplete absorption and your metabolism. 100% bioavailability means for every pill you ingest the entire content of the unchanged drug will be available to your system. you’re getting all the goods.

let’s look at some of the statistics of Neurontin’s absolute bioavalability:

900 mg dosage = 59% bioavailability
1200 mg dosage = 47% bioavailability
2400mg dosage = 34% bioavailability

you get the idea. not so great.

when selecting a medication for your pain, ask your doctor what the drug’s bioavailability is. try to pick a drug which gives you the most bang for your buck; high bioavailability, long half life. a drug’s half-life is the amount of time a drug takes for half the dosage to be excreted from your system. for example, Lyrica’s half life is 6 hours. Topamax’s is 21 hours. We’ve looked at Neurontin’s bioavailability. Keppra’s bioavailability is 100%. i am not recommending any of these drugs; this is simply to show contrast.

fun facts: taking Neurontin with hydrocodone (vicodin) decreases said hydroodone by 22%, BUT will increase Neurontin by 14%. if you are having a really bad pain day, and you have access to morphine, you can piggy back it with Neurontin and it will increase the Neurontin dosage by 44%. (you should wait two hours before taking Neurontin.) morphine is unaffected. something pain doctors either don’t know or won’t tell you. if they’re smart they will.

if you take naproxen (Aleve) it will increase Neurontin by 12-14%. conversely, naproxen is not affected.

RED FLAG: the makers of Neurontin (Pfizer) were involved in a large and very public lawsuit because they were sued for falsely marketing the drug for neuropathic pain and neuralgia and falsifying data from clinical trials. the drug didnt work in the studies and corporate pressured the scientists to publish the data anyway. in short, they lied. something to think about.

i will probably post this as its own thread for others.

remember, i’m not a doctor. talk to your own for more information.

educate, question, challenge. be informed.

the researcher

8

I am on neurotrin 300mg 2xaday and 600mgat night. I also take 1500mg of tegretol a day. I have been feeling worse since I have been taking the neurotrin during the day.? I have had double vision everyday and more burning in my face. Having a bad day with teeth pain.Hoping to have surgery soon. Is Gabapentin better than Neurotrin? I didn’t have any luck with that one.? I have been bruising alot lately. I am talking with my neuro. today.

the researcher said:

here’s the deal with Neurontin; the more you take, the less you get. sounds confusing right? it is! in pharmacology, bioavailability is used to describe the fraction of an administered dose of unchanged drug that reaches the systemic circulation, one of the principal pharmacokinetic properties of drugs. when a medication is administered orally, its bioavailability decreases due to incomplete absorption and your metabolism. 100% bioavailability means for every pill you ingest the entire content of the unchanged drug will be available to your system. you’re getting all the goods.

let’s look at some of the statistics of Neurontin’s absolute bioavalability:

900 mg dosage = 59% bioavailability
1200 mg dosage = 47% bioavailability
2400mg dosage = 34% bioavailability

you get the idea. not so great.

when selecting a medication for your pain, ask your doctor what the drug’s bioavailability is. try to pick a drug which gives you the most bang for your buck; high bioavailability, long half life. a drug’s half-life is the amount of time a drug takes for half the dosage to be excreted from your system. for example, Lyrica’s half life is 6 hours. Topamax’s is 21 hours. We’ve looked at Neurontin’s bioavailability. Keppra’s bioavailability is 100%. i am not recommending any of these drugs; this is simply to show contrast.

fun facts: taking Neurontin with hydrocodone (vicodin) decreases said hydroodone by 22%, BUT will increase Neurontin by 14%. if you are having a really bad pain day, and you have access to morphine, you can piggy back it with Neurontin and it will increase the Neurontin dosage by 44%. (you should wait two hours before taking Neurontin.) morphine is unaffected. something pain doctors either don’t know or won’t tell you. if they’re smart they will.

if you take naproxen (Aleve) it will increase Neurontin by 12-14%. conversely, naproxen is not affected.

RED FLAG: the makers of Neurontin (Pfizer) were involved in a large and very public lawsuit because they were sued for falsely marketing the drug for neuropathic pain and neuralgia and falsifying data from clinical trials. the drug didnt work in the studies and corporate pressured the scientists to publish the data anyway. in short, they lied. something to think about.

i will probably post this as its own thread for others.

remember, i’m not a doctor. talk to your own for more information.

educate, question, challenge. be informed.

the researcher

9

gabapentin is the generic form of neurontin. double vision can be a side effect with high doses of anti convulsant medication, but it may be an indication you should stop the drug. speak to your neurologist about your symptoms.

if you haven’t had a thin slice MRI yet, get one from your neurologist to check for a vascular compression.

the researcher

Kristin Forrester said:

I am on neurotrin 300mg 2xaday and 600mgat night. I also take 1500mg of tegretol a day. I have been feeling worse since I have been taking the neurotrin during the day.? I have had double vision everyday and more burning in my face. Having a bad day with teeth pain.Hoping to have surgery soon. Is Gabapentin better than Neurotrin? I didn’t have any luck with that one.? I have been bruising alot lately. I am talking with my neuro. today.


the researcher said:
here’s the deal with Neurontin; the more you take, the less you get. sounds confusing right? it is! in pharmacology, bioavailability is used to describe the fraction of an administered dose of unchanged drug that reaches the systemic circulation, one of the principal pharmacokinetic properties of drugs. when a medication is administered orally, its bioavailability decreases due to incomplete absorption and your metabolism. 100% bioavailability means for every pill you ingest the entire content of the unchanged drug will be available to your system. you’re getting all the goods.

let’s look at some of the statistics of Neurontin’s absolute bioavalability:

900 mg dosage = 59% bioavailability
1200 mg dosage = 47% bioavailability
2400mg dosage = 34% bioavailability

you get the idea. not so great.

when selecting a medication for your pain, ask your doctor what the drug’s bioavailability is. try to pick a drug which gives you the most bang for your buck; high bioavailability, long half life. a drug’s half-life is the amount of time a drug takes for half the dosage to be excreted from your system. for example, Lyrica’s half life is 6 hours. Topamax’s is 21 hours. We’ve looked at Neurontin’s bioavailability. Keppra’s bioavailability is 100%. i am not recommending any of these drugs; this is simply to show contrast.

fun facts: taking Neurontin with hydrocodone (vicodin) decreases said hydroodone by 22%, BUT will increase Neurontin by 14%. if you are having a really bad pain day, and you have access to morphine, you can piggy back it with Neurontin and it will increase the Neurontin dosage by 44%. (you should wait two hours before taking Neurontin.) morphine is unaffected. something pain doctors either don’t know or won’t tell you. if they’re smart they will.

if you take naproxen (Aleve) it will increase Neurontin by 12-14%. conversely, naproxen is not affected.

RED FLAG: the makers of Neurontin (Pfizer) were involved in a large and very public lawsuit because they were sued for falsely marketing the drug for neuropathic pain and neuralgia and falsifying data from clinical trials. the drug didnt work in the studies and corporate pressured the scientists to publish the data anyway. in short, they lied. something to think about.

i will probably post this as its own thread for others.

remember, i’m not a doctor. talk to your own for more information.

educate, question, challenge. be informed.

the researcher

10

I am going in for bloodwork to check my liver count. I am bruising real easy. Still having calf pain. Having a couple of bad days, lots of shocks of pain. Can’t eat alot.

the researcher said:

gabapentin is the generic form of neurontin. double vision can be a side effect with high doses of anti convulsant medication, but it may be an indication you should stop the drug. speak to your neurologist about your symptoms.

if you haven’t had a thin slice MRI yet, get one from your neurologist to check for a vascular compression.

the researcher

Kristin Forrester said:
I am on neurotrin 300mg 2xaday and 600mgat night. I also take 1500mg of tegretol a day. I have been feeling worse since I have been taking the neurotrin during the day.? I have had double vision everyday and more burning in my face. Having a bad day with teeth pain.Hoping to have surgery soon. Is Gabapentin better than Neurotrin? I didn’t have any luck with that one.? I have been bruising alot lately. I am talking with my neuro. today.

the researcher said:
here’s the deal with Neurontin; the more you take, the less you get. sounds confusing right? it is! in pharmacology, bioavailability is used to describe the fraction of an administered dose of unchanged drug that reaches the systemic circulation, one of the principal pharmacokinetic properties of drugs. when a medication is administered orally, its bioavailability decreases due to incomplete absorption and your metabolism. 100% bioavailability means for every pill you ingest the entire content of the unchanged drug will be available to your system. you’re getting all the goods.

let’s look at some of the statistics of Neurontin’s absolute bioavalability:

900 mg dosage = 59% bioavailability
1200 mg dosage = 47% bioavailability
2400mg dosage = 34% bioavailability

you get the idea. not so great.

when selecting a medication for your pain, ask your doctor what the drug’s bioavailability is. try to pick a drug which gives you the most bang for your buck; high bioavailability, long half life. a drug’s half-life is the amount of time a drug takes for half the dosage to be excreted from your system. for example, Lyrica’s half life is 6 hours. Topamax’s is 21 hours. We’ve looked at Neurontin’s bioavailability. Keppra’s bioavailability is 100%. i am not recommending any of these drugs; this is simply to show contrast.

fun facts: taking Neurontin with hydrocodone (vicodin) decreases said hydroodone by 22%, BUT will increase Neurontin by 14%. if you are having a really bad pain day, and you have access to morphine, you can piggy back it with Neurontin and it will increase the Neurontin dosage by 44%. (you should wait two hours before taking Neurontin.) morphine is unaffected. something pain doctors either don’t know or won’t tell you. if they’re smart they will.

if you take naproxen (Aleve) it will increase Neurontin by 12-14%. conversely, naproxen is not affected.

RED FLAG: the makers of Neurontin (Pfizer) were involved in a large and very public lawsuit because they were sued for falsely marketing the drug for neuropathic pain and neuralgia and falsifying data from clinical trials. the drug didnt work in the studies and corporate pressured the scientists to publish the data anyway. in short, they lied. something to think about.

i will probably post this as its own thread for others.

remember, i’m not a doctor. talk to your own for more information.

educate, question, challenge. be informed.

the researcher

11

I am going to have the Sliced MRI done and then talking about surgery. He is talking more towards the MVD surgery. Any comments on this? Just wondering how long the recovery is from this? Would love to be off some of my meds.




Kristin Forrester said:

I am going in for bloodwork to check my liver count. I am bruising real easy. Still having calf pain. Having a couple of bad days, lots of shocks of pain. Can’t eat alot.

the researcher said:
gabapentin is the generic form of neurontin. double vision can be a side effect with high doses of anti convulsant medication, but it may be an indication you should stop the drug. speak to your neurologist about your symptoms.

if you haven’t had a thin slice MRI yet, get one from your neurologist to check for a vascular compression.

the researcher

Kristin Forrester said:
I am on neurotrin 300mg 2xaday and 600mgat night. I also take 1500mg of tegretol a day. I have been feeling worse since I have been taking the neurotrin during the day.? I have had double vision everyday and more burning in my face. Having a bad day with teeth pain.Hoping to have surgery soon. Is Gabapentin better than Neurotrin? I didn’t have any luck with that one.? I have been bruising alot lately. I am talking with my neuro. today.

the researcher said:
here’s the deal with Neurontin; the more you take, the less you get. sounds confusing right? it is! in pharmacology, bioavailability is used to describe the fraction of an administered dose of unchanged drug that reaches the systemic circulation, one of the principal pharmacokinetic properties of drugs. when a medication is administered orally, its bioavailability decreases due to incomplete absorption and your metabolism. 100% bioavailability means for every pill you ingest the entire content of the unchanged drug will be available to your system. you’re getting all the goods.

let’s look at some of the statistics of Neurontin’s absolute bioavalability:

900 mg dosage = 59% bioavailability
1200 mg dosage = 47% bioavailability
2400mg dosage = 34% bioavailability

you get the idea. not so great.

when selecting a medication for your pain, ask your doctor what the drug’s bioavailability is. try to pick a drug which gives you the most bang for your buck; high bioavailability, long half life. a drug’s half-life is the amount of time a drug takes for half the dosage to be excreted from your system. for example, Lyrica’s half life is 6 hours. Topamax’s is 21 hours. We’ve looked at Neurontin’s bioavailability. Keppra’s bioavailability is 100%. i am not recommending any of these drugs; this is simply to show contrast.

fun facts: taking Neurontin with hydrocodone (vicodin) decreases said hydroodone by 22%, BUT will increase Neurontin by 14%. if you are having a really bad pain day, and you have access to morphine, you can piggy back it with Neurontin and it will increase the Neurontin dosage by 44%. (you should wait two hours before taking Neurontin.) morphine is unaffected. something pain doctors either don’t know or won’t tell you. if they’re smart they will.

if you take naproxen (Aleve) it will increase Neurontin by 12-14%. conversely, naproxen is not affected.

RED FLAG: the makers of Neurontin (Pfizer) were involved in a large and very public lawsuit because they were sued for falsely marketing the drug for neuropathic pain and neuralgia and falsifying data from clinical trials. the drug didnt work in the studies and corporate pressured the scientists to publish the data anyway. in short, they lied. something to think about.

i will probably post this as its own thread for others.

remember, i’m not a doctor. talk to your own for more information.

educate, question, challenge. be informed.

the researcher

12

Kristin,
I’m sure not taking the tegretol has caused the pain to be worse. Ask your doctor for another medicine instead of tegretol. Is Tramadol an anti-seizure drug? I thought it was for pain. If it isn’t, I think you need an anti-seizure drug. There are others that may not cause you side effects that you can’t tolerate.
Liz

13

I am also on Neurotrin. Tegretol is an antiseziure drug. I have just built up a tolerance to the dose that I am on. My Neuro. said I am at a pretty high dose of 1500mg. Which can cause the double vision. Do you have a problem when biting down on foods? That is when I have more pain. I can only eat soft foods.



Liz K. said:

Kristin,
I’m sure not taking the tegretol has caused the pain to be worse. Ask your doctor for another medicine instead of tegretol. Is Tramadol an anti-seizure drug? I thought it was for pain. If it isn’t, I think you need an anti-seizure drug. There are others that may not cause you side effects that you can’t tolerate.
Liz

14

I am right there with you. I was on 1800 mg of gabepentin for the first few months and it worked great! Then I weaned off the meds thinking I was in remission (after asking the dr). I was pain free for two weeks but it came back with a vengence. I am now on 2400 mg of gabepentin and the pain seems to be getting worse. I am fine when I awake in the mornings but by about lunch time I am having spells that are bad and by mid afternoon I usually have to take a pain pill and go to sleep for awhile. Thankfully at my job I can usually do that. I don’t think my staff truly understands but I have no other choice. Then at night time I have horrible pain and take as much medicine as I can. Sometimes I get very nauseated and I don’t know if it’s the meds or the pain. Have you considered surgery? Praying for you.

15

If I may add to the discussion?



First about bio-availability and Pfizer… The drug company seems to have stepped into a mess by falsifying its trials data. But a confounding factor here is that Neurontin (Gabapentin) works well for thousands of people, particularly though not exclusively in treating Post-Herpetic Neuralgia. Thus – even if the trials data were fudged – the medication seems to have a positive role to play for some patients some of the time, in treating facial neuropathic pain. The trick is going to be sorting out the conflicting indicators and developing a sound and safe practice standard for uses of the drug.



Likewise, just as drugs interact with each other in the bloodstream, there also appears to be natural variation in bio-availability BETWEEN INDIVIDUALS. Some people are hyper-sensitive to anti-convulsant drugs, and others seem to be relatively unaffected or to quickly develop tolerance to them. I’ve never seen anything in literature that accounts for these variations or provides for measuring them in advance of prescribing drugs.



My spouse seems to be one of the lucky ones. She asked her neurologist to switch from Tegretol to Neurontin, because of her concern that Tegretol is associated with progressive liver and bone marrow toxicity in some people. She’s been on a program of 3x800 + 1x300 mg doses (2700 mg per day total) for the past eight years, and so far we haven’t seen any signs of developing tolerance.



Neurontin doesn’t take all of her pain, but it cuts the top off the iceberg and makes the residual pain manageable. She also has minimal side effects – no dizziness or “drug zombie brain” at all, and a small amount of word-finding difficulty in long-term memory. She has a mixture of typical and atypical TN symptoms on both sides.



So I think the best we can say at this point is that (yes) there are variations in bio-availability, and some patients do build up tolerance rather quickly. We don’t know why. Each patient is an individual chemistry lab run by a virtual mad scientist, I guess (And please understand that I don’t mean to trivialize the pain: I have witnessed its effects in somebody that I love, for the past 15 years).



So the indicated useful response to these realities is that patients may need frequent monitoring and blood testing by a professional as they titrate up on medication doses or transition between medications or add medications. I personally believe that a lot of neurologists fail to conduct appropriate blood serum level testing on NEARLY a frequent enough basis.



Note: like Vespers, I am not a medical doctor. But like her, I’ve been studying the literature and talking with pain patients for a lot of years as an advocate and supporter.



Go in Peace and Power,

Red Lawhern, Ph.D.

Master Information Miner