I just joined and have only read through a handful of stuff on this site, but it seems that no one has found that “magical” pill that has helped them. It seems that all these medications help at the beginning, but then stop helping and make the patient go up in dosage until they can’t anymore. Or that they find a medication that helps, but they still have bad days, or the medication just helps the facial pains so they are manageable. I’m starting to get a little discouraged… is there anyone out there who doesn’t experience the facial pains at all anymore due to a medication or anything?
Korie,
Most of the time, I am pain free now. However, I am on opoids, an anti-convulsant and a benzodiazipine. I have a tolerance to them, so they don't seem to be affecting my memory, or making me a zombie.
Their usage is controversial. Many doctors refuse to prescribe them for TN or ATN patients stating that they don't work. Me and many others beg to differ. I would have probably lost my home and children if it had not been for them. You could say, pain killers and nerve pills SAVED my life. I am dependent, yet not addicted. I don't crave the pills. In fact, sometimes, I forget to take them. But, when I do, my face reminds me.
My dearest friend who has Atypical TN, well, I'm worried about her right now, because opiates are the only relief she's ever found from torturous pain, and the pain clinic she sees refused to prescribe any to her. She sees no hope. I'm angry. She is paying them to control her pain. That is what this medicine is made for. They are drugs to the addict. They are medicine to the dependent. I'm sorry to rant on your blog, but I am so scared for my friend and her mental state. She has been so wronged. This is what works for her. It is what works for me. Without Morphine for long lasting relief, Oxycodone for breakthrough pain, Diazepam to relax the muscles of mastication and Neurtontin (well I am not sure what that does, but it does something, I WOULD BE A MESS, and I think probably, either destitute, or institutionalized because the pain would have driven me insane. That's the honest, blunt, cruel truth. But, it is my truth.
Well, I would rather have been a bit psychologically diminished than be in the levels of pain I was experiencing with my Atypical Trigeminal Neuralgia. Luckily, for me, that has not happened. My Psychiatrist confirms that fact.
This combo of these medications has left me with only one time of day that I typically experience some pain, which, for me, is late afternoon.
I am not suggesting that this is right for you, or anyone who is not opoid tolerant. On the low end of that scale would be Hydrocodone. I needed something longer lasting. Hydrocodone used to work for me just fine. But, then my PM clinic made a bad decision that increased my tolerance (another story).
Best of luck on finding what is right for you,
Stef
Thank you for your reply Stef! I was diagnosed with TN at the end of February due to a brain tumor they found when I was 12... I am now 20!!!!! I am very upset that I haven't been treated for TN sooner, but that's another story... So so far I've just tried one anti seizure medication- Tegretol. I've had to increase my dosage to 1,000 mg and am very disappointed that it has made me into a zombie and noticeably helped at beginning, but I don't know if I can say the same for now.
I am so SO sorry to hear about your friend! I know that people have less and more severe cases of TN than I and I just can't imagine dealing with the bad days more often than I do now. The more I have to deal with the world of doctors and medicine, the more bitter I get towards them. They tell us we don't have a problem when we KNOW we have a problem, and then when they finally admit we have a problem they refuse to help! It's a ridiculous viscous cycle. I guess you have the find the right doctor who fits your needs and actually LISTENS.
You don't know how happy I am to have found and talk to other people who have TN! I've been experiencing this pain since I was 9 and I've always thought I was the only one. I have so many questions and want to share so much!
I really do appreciate your reply! It has given me a lot to think about :)
- Korie
Stef said:
Korie,
Most of the time, I am pain free now. However, I am on opoids, an anti-convulsant and a benzodiazipine. I have a tolerance to them, so they don't seem to be affecting my memory, or making me a zombie.
Their usage is controversial. Many doctors refuse to prescribe them for TN or ATN patients stating that they don't work. Me and many others beg to differ. I would have probably lost my home and children if it had not been for them. You could say, pain killers and nerve pills SAVED my life. I am dependent, yet not addicted. I don't crave the pills. In fact, sometimes, I forget to take them. But, when I do, my face reminds me.
My dearest friend who has Atypical TN, well, I'm worried about her right now, because opiates are the only relief she's ever found from torturous pain, and the pain clinic she sees refused to prescribe any to her. She sees no hope. I'm angry. She is paying them to control her pain. That is what this medicine is made for. They are drugs to the addict. They are medicine to the dependent. I'm sorry to rant on your blog, but I am so scared for my friend and her mental state. She has been so wronged. This is what works for her. It is what works for me. Without Morphine for long lasting relief, Oxycodone for breakthrough pain, Diazepam to relax the muscles of mastication and Neurtontin (well I am not sure what that does, but it does something, I WOULD BE A MESS, and I think probably, either destitute, or institutionalized because the pain would have driven me insane. That's the honest, blunt, cruel truth. But, it is my truth.
Well, I would rather have been a bit psychologically diminished than be in the levels of pain I was experiencing with my Atypical Trigeminal Neuralgia. Luckily, for me, that has not happened. My Psychiatrist confirms that fact.
This combo of these medications has left me with only one time of day that I typically experience some pain, which, for me, is late afternoon.
I am not suggesting that this is right for you, or anyone who is not opoid tolerant. On the low end of that scale would be Hydrocodone. I needed something longer lasting. Hydrocodone used to work for me just fine. But, then my PM clinic made a bad decision that increased my tolerance (another story).
Best of luck on finding what is right for you,
Stef
Those are the characteristics of this disease. It can only be controlled like diabetes, but even diabetics have ups and downs while on their medications. I can say that I was well managed on morphine for 10 years, but this winter, all of my illnesses have been acting up. During those 10 years I did have RARE days of breakthrough pain, but really rare, like 3 times a year. Don't get discouraged. There are SOO many different medicines, and different combinations and dosages, and things you can do that are not prescriptions, that if you keep trying, you will find what works for your body.
Best wishes!
Sheila
Glad that we can be here for you, Korie.
I know, right! I am so bitter at doctor's right now, except for my Psychiatrist and Pain Management Nurse (and the doc who oversees her), that I could scream!!!!!
I have seen so many of my friends here treated in an undignified manner by physicians. It is a crying shame, in my opinion, that you can have something as harsh and cruel as Trigeminal Neuralgia, or Atypical Trigeminal Neuralgia, and have your pain dismissed. Isn't their JOB to keep trying until they find what works? We pay them, not the other way around!
I think we need a "good doctor's by area" list on this page. I am going to push for one.
We need stand firm and stick together. We have the largest group here on the web, I believe of sufferers together at once. I believe that there must be a way that we can stick together to find the best and most recommended physicians out there, so many of us don't have to weed through the uncaring, uninformed, ineffective, disrespectful, disbelieving, ignorant, and ineffective ones.
I'm brainstorming . . . . .
Hugs and prayers sent for you!
Your friend,
Stef
Korie Leach said:
Thank you for your reply Stef! I was diagnosed with TN at the end of February due to a brain tumor they found when I was 12... I am now 20!!!!! I am very upset that I haven't been treated for TN sooner, but that's another story... So so far I've just tried one anti seizure medication- Tegretol. I've had to increase my dosage to 1,000 mg and am very disappointed that it has made me into a zombie and noticeably helped at beginning, but I don't know if I can say the same for now.
I am so SO sorry to hear about your friend! I know that people have less and more severe cases of TN than I and I just can't imagine dealing with the bad days more often than I do now. The more I have to deal with the world of doctors and medicine, the more bitter I get towards them. They tell us we don't have a problem when we KNOW we have a problem, and then when they finally admit we have a problem they refuse to help! It's a ridiculous viscous cycle. I guess you have the find the right doctor who fits your needs and actually LISTENS.
You don't know how happy I am to have found and talk to other people who have TN! I've been experiencing this pain since I was 9 and I've always thought I was the only one. I have so many questions and want to share so much!
I really do appreciate your reply! It has given me a lot to think about :)
- Korie
Stef said:
Korie,
Most of the time, I am pain free now. However, I am on opoids, an anti-convulsant and a benzodiazipine. I have a tolerance to them, so they don't seem to be affecting my memory, or making me a zombie.
Their usage is controversial. Many doctors refuse to prescribe them for TN or ATN patients stating that they don't work. Me and many others beg to differ. I would have probably lost my home and children if it had not been for them. You could say, pain killers and nerve pills SAVED my life. I am dependent, yet not addicted. I don't crave the pills. In fact, sometimes, I forget to take them. But, when I do, my face reminds me.
My dearest friend who has Atypical TN, well, I'm worried about her right now, because opiates are the only relief she's ever found from torturous pain, and the pain clinic she sees refused to prescribe any to her. She sees no hope. I'm angry. She is paying them to control her pain. That is what this medicine is made for. They are drugs to the addict. They are medicine to the dependent. I'm sorry to rant on your blog, but I am so scared for my friend and her mental state. She has been so wronged. This is what works for her. It is what works for me. Without Morphine for long lasting relief, Oxycodone for breakthrough pain, Diazepam to relax the muscles of mastication and Neurtontin (well I am not sure what that does, but it does something, I WOULD BE A MESS, and I think probably, either destitute, or institutionalized because the pain would have driven me insane. That's the honest, blunt, cruel truth. But, it is my truth.
Well, I would rather have been a bit psychologically diminished than be in the levels of pain I was experiencing with my Atypical Trigeminal Neuralgia. Luckily, for me, that has not happened. My Psychiatrist confirms that fact.
This combo of these medications has left me with only one time of day that I typically experience some pain, which, for me, is late afternoon.
I am not suggesting that this is right for you, or anyone who is not opoid tolerant. On the low end of that scale would be Hydrocodone. I needed something longer lasting. Hydrocodone used to work for me just fine. But, then my PM clinic made a bad decision that increased my tolerance (another story).
Best of luck on finding what is right for you,
Stef
Sheila,
See, that is where I am right now, well managed with Morphine. I wonder why it stopped working for you, at what level of dosage?
Thanks for all you do for the online community, lady! You are quite an asset to us.
Love and hugs to you, as well.
Stef
Sheila said:
Those are the characteristics of this disease. It can only be controlled like diabetes, but even diabetics have ups and downs while on their medications. I can say that I was well managed on morphine for 10 years, but this winter, all of my illnesses have been acting up. During those 10 years I did have RARE days of breakthrough pain, but really rare, like 3 times a year. Don't get discouraged. There are SOO many different medicines, and different combinations and dosages, and things you can do that are not prescriptions, that if you keep trying, you will find what works for your body.
Best wishes!
Sheila
Carbamazepine (tegretol) and Tripelptal have been the best medications I have taken (6 years taken them). The side effects diminish as you get used to the medicine. As I progressively got to the maximum dosage of each of the I had to change and I am in trougbles right now. But I bet my doctor and I will find a good combination.
I have been taking Carbitrol for 3 years. I am maxed out and it isn't working as well as it used to. I had to change meds once before because TN is always progressing and getting stronger. Our meds have to change to adapt.
I am having MVD on the 19th. I also have a tumor. I had Gamma Knife done last year and it seemed to ease my pain. But the tumor grew again. The MVD will remove the tumor and hopefully take care of the issue.
Side effects...oh girl...everyone on this site can tell you about side effects. The drugs we take block our brain from receiving messages. So while writing this, I have had to ask for help with spelling or remembering words. I have to type slowly so my hands can type correctly. I have had to re-read to keep my train of thought. My significant other agree the other day when I said I can't speak like I have an education. Side effects are just as bad as the TN.
I hope this helps.
Carolina,
Carbamazepine is what I'm taking now. I just upped my dosage to 2 and 1/2 tabs in the morning and at night and I still have facial pains- minimal, but they're still there. How much are you taking? My neurologist is very difficult to get ahold of so I'm waiting to hear if I should go up again or what. Thank you for your reply. I do hope that your doctor helps you once again!
Carolina Thatcher said:
Carbamazepine (tegretol) and Tripelptal have been the best medications I have taken (6 years taken them). The side effects diminish as you get used to the medicine. As I progressively got to the maximum dosage of each of the I had to change and I am in trougbles right now. But I bet my doctor and I will find a good combination.
Bobbie,
Your reply does help! Is your tumor cancerous? Is it what is causing your TN? As odd as it may sound it's refreshing to hear that another person has this condition due to a brain tumor just like me. What were your side effects of the gamma knife? Did it remove the entire thing before it grew again? Sorry for all the questions... I'm so sorry to hear that your tumor grew again. That's my worst nightmare... The side effects of these medications sound horrible. As I said, it's a little discouraging to read. I hope that the MVD takes away your misery. You'll have to keep me updated on how it goes and how you're feeling!
Bobbie said:
I have been taking Carbitrol for 3 years. I am maxed out and it isn't working as well as it used to. I had to change meds once before because TN is always progressing and getting stronger. Our meds have to change to adapt.
I am having MVD on the 19th. I also have a tumor. I had Gamma Knife done last year and it seemed to ease my pain. But the tumor grew again. The MVD will remove the tumor and hopefully take care of the issue.
Side effects...oh girl...everyone on this site can tell you about side effects. The drugs we take block our brain from receiving messages. So while writing this, I have had to ask for help with spelling or remembering words. I have to type slowly so my hands can type correctly. I have had to re-read to keep my train of thought. My significant other agree the other day when I said I can't speak like I have an education. Side effects are just as bad as the TN.
I hope this helps.
No, Korie.
I have not found any medications particularly "magical", in my so-called textbook diagnosis of TN, (aged 50) which palls in comparison to a 20 year old stating: "So that's where I am now in my brain tumor/TN adventure".
Nice to see you so involved, I'm glad you are with us! :) bob