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Tegratol for TN
Firstly, thank you all for being here. You can't know (or maybe you do) how great it is knowing I can come and ask for your advice or even just to hear that you know what I'm dealing with. So, for that I thank you. ((((Hugs)))))
I'm still hanging in limbo. My neuro assigned me to the MS clinic then left me hanging without any real dx or any sx management help. Or anything really. They're still talking about needing 9 lesions for a dx. Whatev...
In the meantime, it's been confirmed that I HAD optic neuritis and now they're finally admitting to me that the pain I've had in my face since August is in fact Trigeminal Neuralgia. Thankfully at least the diplopia hasn't come back. My neuro still doesn't want to prescribe anything though until we know why I had ON and why I have TN. He's killing me.
Anyway, I went to talk to my GP about it and he wants me to see yet another neuro and says he can prescribe Tegratol. Is this something any of you with TN experience have tried? Is it effective? Did you like it? Any advice?
Are there any home remedies that actually help with TN?
Once again, thanks for being here. I appreciate it.
Hugs,
Laura
I'm still hanging in limbo. My neuro assigned me to the MS clinic then left me hanging without any real dx or any sx management help. Or anything really. They're still talking about needing 9 lesions for a dx. Whatev...
In the meantime, it's been confirmed that I HAD optic neuritis and now they're finally admitting to me that the pain I've had in my face since August is in fact Trigeminal Neuralgia. Thankfully at least the diplopia hasn't come back. My neuro still doesn't want to prescribe anything though until we know why I had ON and why I have TN. He's killing me.
Anyway, I went to talk to my GP about it and he wants me to see yet another neuro and says he can prescribe Tegratol. Is this something any of you with TN experience have tried? Is it effective? Did you like it? Any advice?
Are there any home remedies that actually help with TN?
Once again, thanks for being here. I appreciate it.
Hugs,
Laura
"If your Doc had ever experienced TN he would not postpone a prescription to treat it, guaranteed!"
Mike, I've said this same thing to my husband so many times over the past few months I think he secretly rolls his eyes when I'm not looking. lol I strongly agree with you on this!
I thank you for your detailed info about Gabapentin. It really helps to know what the norm is when talking to the doctors. I've done some more reading about how TN is handled here and it seems that in the Italian MS forums, most people with MS and secondary TN are treated with Gabapentin. Tegratol, it would seem, is used more for primary TN (probably due to vascular reasons, dental, etc). Although I assume they both work (or not) depending on the specific patient's reaction to each drug, I am wondering if the neurologist when I see him will prescribe gabapentin rather than tegratol.
Whatever the outcome, thanks for the extra info. Very helpful.
Laura
Mike, I've said this same thing to my husband so many times over the past few months I think he secretly rolls his eyes when I'm not looking. lol I strongly agree with you on this!
I thank you for your detailed info about Gabapentin. It really helps to know what the norm is when talking to the doctors. I've done some more reading about how TN is handled here and it seems that in the Italian MS forums, most people with MS and secondary TN are treated with Gabapentin. Tegratol, it would seem, is used more for primary TN (probably due to vascular reasons, dental, etc). Although I assume they both work (or not) depending on the specific patient's reaction to each drug, I am wondering if the neurologist when I see him will prescribe gabapentin rather than tegratol.
Whatever the outcome, thanks for the extra info. Very helpful.
Laura
It took me about 2 weeks to build up to a dose that seemed to keep the TN knocked down.
I can't say that I like any of my drugs, but I take them if they seem to help.
I am currently at 1200mg Gab daily, a relatively low dose. When I get breakthrough TN pain I take an extra 300mg at bed time, which seems to help and allows me to fall asleep.
I have tried to reduce the dosage by 300mg per day a couple times, but the TN pain hits within a day. A few weeks ago at 11 am I was having some TN pain, and discovered I had not taken my 8 am meds, which includes 300mg Gabapentin. I am convinced Gabapentin works for me, and I am at the correct dosage...for now.
If your Doc had ever experienced TN he would not postpone a prescription to treat it, guaranteed!
Mike
I can't say that I like any of my drugs, but I take them if they seem to help.
I am currently at 1200mg Gab daily, a relatively low dose. When I get breakthrough TN pain I take an extra 300mg at bed time, which seems to help and allows me to fall asleep.
I have tried to reduce the dosage by 300mg per day a couple times, but the TN pain hits within a day. A few weeks ago at 11 am I was having some TN pain, and discovered I had not taken my 8 am meds, which includes 300mg Gabapentin. I am convinced Gabapentin works for me, and I am at the correct dosage...for now.
If your Doc had ever experienced TN he would not postpone a prescription to treat it, guaranteed!
Mike
Thanks Michelle! I'm sorry that you're an expert on TN. :( It is an awful symptom that no one should have to suffer. I'm glad your TN is under control at the moment (knocking on wood with you).
I might ask for Trileptal if that's available here. It sounds like it's a newer, more often used option than Tegretol from what I'm hearing. In the end, I'm just hoping my GP will follow through with something in the case that I can't see a neuro for 6 months (or in case, they still won't prescribe me anything).
Thanks for sharing your experience. It helps knowing others have made it through this.
Laura
I might ask for Trileptal if that's available here. It sounds like it's a newer, more often used option than Tegretol from what I'm hearing. In the end, I'm just hoping my GP will follow through with something in the case that I can't see a neuro for 6 months (or in case, they still won't prescribe me anything).
Thanks for sharing your experience. It helps knowing others have made it through this.
Laura
Hi Laura,
1st of all, I hope you are able to get in with a new neuro. Sounds like you are in need of one for sure. I dont understand why this neuro couldnt help you with your symptoms, even without knowing what is the root cause. Sorry about that. Couldnt have felt very good leaving that appt.
I am so sorry you are dealing with TN and all the awful pain it brings. TN is the most debilitating symptom this nasty disease has brought me. The first med I was given for TN was Trileptal. Neuro told me it is very similiar to Tegretol, with fewer side effects. So I think Tegretal is a good med for you to start with, and hopefully end with! Would be great if that helped!
As far as home remedies for TN, I really dont have any, and lord knows I have tried! I have been on a mutitude of meds and other treatments fir my TN. At the moment, I am doing fairly well. ( knock on wood;)). Probably best controlled now, than I have ever been.
So, you are not alone here. I feel for you...literally. It is an awful , horrible thing to deal with. Wishing you lots of luck with Tegretol and hoping it helps.
Michelle
1st of all, I hope you are able to get in with a new neuro. Sounds like you are in need of one for sure. I dont understand why this neuro couldnt help you with your symptoms, even without knowing what is the root cause. Sorry about that. Couldnt have felt very good leaving that appt.
I am so sorry you are dealing with TN and all the awful pain it brings. TN is the most debilitating symptom this nasty disease has brought me. The first med I was given for TN was Trileptal. Neuro told me it is very similiar to Tegretol, with fewer side effects. So I think Tegretal is a good med for you to start with, and hopefully end with! Would be great if that helped!
As far as home remedies for TN, I really dont have any, and lord knows I have tried! I have been on a mutitude of meds and other treatments fir my TN. At the moment, I am doing fairly well. ( knock on wood;)). Probably best controlled now, than I have ever been.
So, you are not alone here. I feel for you...literally. It is an awful , horrible thing to deal with. Wishing you lots of luck with Tegretol and hoping it helps.
Michelle
Thanks for your replies.
Mike, I've heard that gabapentin helps with nerve pain such as TN and was expecting that to be what my doctor suggested when he mentioned tegratol instead. Does gabapentin work right away or does it need time to work? Do you like it or find it a necessary evil? It was my GP who said he could write Tegratol for me but in light of my history of other neurological problems, wants me to see a neuro before starting anything. Fingers crossed that it won't be a long wait for THAT appointment. Anyway, it's heartening to hear about neuros who are willing to help manage symptoms while they figure out what's going on. It reminds me that they ARE out there and not to give up on finding one. :)
Lisa, just found your thread. I'm so sorry that there seem to be so many here dealing with TN right now. It is a real bummer and hopefully will be of short duration. :( I think I may be finding a new neuro soon. I've been with "second opinion" now for a year and really hate to start over, but... when it's time, it's time, I guess. BTW, cool that you're paleo too. Have you been paleo for long? Do you think it's helped?
Thanks to both of you for your replies and if you find any homemade remedies that help in the meanwhile, please send them my way! :)
Hugs,
Laura
Mike, I've heard that gabapentin helps with nerve pain such as TN and was expecting that to be what my doctor suggested when he mentioned tegratol instead. Does gabapentin work right away or does it need time to work? Do you like it or find it a necessary evil? It was my GP who said he could write Tegratol for me but in light of my history of other neurological problems, wants me to see a neuro before starting anything. Fingers crossed that it won't be a long wait for THAT appointment. Anyway, it's heartening to hear about neuros who are willing to help manage symptoms while they figure out what's going on. It reminds me that they ARE out there and not to give up on finding one. :)
Lisa, just found your thread. I'm so sorry that there seem to be so many here dealing with TN right now. It is a real bummer and hopefully will be of short duration. :( I think I may be finding a new neuro soon. I've been with "second opinion" now for a year and really hate to start over, but... when it's time, it's time, I guess. BTW, cool that you're paleo too. Have you been paleo for long? Do you think it's helped?
Thanks to both of you for your replies and if you find any homemade remedies that help in the meanwhile, please send them my way! :)
Hugs,
Laura
Tegretol, and its cousin, Trileptal, are the first line drugs to combat TN. I'm sure you saw my post, too. ;-)
I'm sorry you're going through this pain, too. Seems like a bunch of us in this forum are. Total bugger!
I don't know what your neuros are waiting for - buncha lesion counters! I think its time to find a new neuro!
Big hugs to you, Laura.
Lisa
I'm sorry you're going through this pain, too. Seems like a bunch of us in this forum are. Total bugger!
I don't know what your neuros are waiting for - buncha lesion counters! I think its time to find a new neuro!
Big hugs to you, Laura.
Lisa
Gabapentin is working for my TN, as well as for other aches, pains, zaps, tingles, etc...
I have MS, but my Neuro prescribed the Gabapentin, as well as other rx's before my MS diagnosis.
There's no reason to suffer with neurological pain without treatment, even if the reasons for the neuro pain are not known.
I've never tried Tegratol, but if it's meant to combat TN pain then by all means give it a go. Can't your GP prescribe it for you?
Good luck to you!
Mike
I have MS, but my Neuro prescribed the Gabapentin, as well as other rx's before my MS diagnosis.
There's no reason to suffer with neurological pain without treatment, even if the reasons for the neuro pain are not known.
I've never tried Tegratol, but if it's meant to combat TN pain then by all means give it a go. Can't your GP prescribe it for you?
Good luck to you!
Mike
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