Tegretol worked really well at cancelling out 100% of my type-1 pain attacks and most of the type-2 background pain. But because I reacted to it I'm now on gabapentin. Going all good, cancelled out the type-1 and took edge off the type-2. Now the type-1 is back at about 80% strength, still enough to make you want to rip your face off.
I'm not sure whether to expect no pain at all, some type-2 and no type-1, or just the edge off both. How far do I up my meds? Until what sort of pain relief is achieved?
This is a great question! I’m on Gabapentin too. My neuro started me on this one first because of the fewer side effects vs Tegretol. She is giving me one more increase on the Gabapentin and if that doesn’t offer more relief she will switch meds.
What I find is this. The Gabapentin took the initial pain in my jaw right away. After an increase it took away most of my ear pain. I still get an occasional electrical shock down the side of my tongue, and ear or eye pain. What these meds are not great at doing for me, is taking away the burning pain that I get in spots. It’s not great at relieving those muscle tightening, spasms in my cheek. I call those pains reminders, because when I wake up forgetting all of this, or when I’m having a pain free day, I get a reminder that TN is still there. It would be sad if I let it.
My wife finds that Neurontin takes the tip off the iceberg, and allows her to function well with a background of 1-2 level pain many days. Additional meds such as Baclofen (an anti-spasmodic), Flexeril (a muscle relaxant) or Valium (a mild tranquilizer) are sometimes effective in further moderating pain while the primary med is Neurontin. If you need to be tapered up on any medication, please do so with the advice of your neurologist.
I've been off work for a year, still waiting for a neurologist. I saw one who said he could treat my carpal tunnel but said 'good luck with your head, madame, it is very bizarre, I cannot help you with that'. An internal medicine doctor diagnosed me with TN type 2, I saw him by special appointment, organized by a private placement agency in another city. I live in Canada. The neuro I was referred to in March 2011 has a waiting list of 2-3 years. My family dr prescribed tegretol for me on the advice of the internal medicine dr, and it helped in low doses, but my system doesn't do well with medication anyway. I'm 5 feet tall, and take children's doses of cold medicine. The higher the dose of tegretol, the less desirable the effect, so they weaned me off it, and the private agency found me another neurologist in another city, who said he thought I had silent migraines (which I argued against, as TN 2 connects the most dots of my symptoms), but I took the topomax anyway because I read on this site that some patients are taking it for both migraine and tn. Wow, it makes one dull! I have to write things down or I forget. My husband won't let me drive much anymore, and his son is visiting us and I was directing him around town, but forgot where one store was so we just came back home. My pain and dizzines have only increased on topomax, and I go back to my family doctor next week (It will be 5 weeks at 100 mg of topomax by then). I'm frankly afraid to be taking these high powered meds that should be supervised by a neurologist. I'm going to try to get back to see the internal medicine guy again. I've had a couple of MRI's, but they can't see any compression of the trigeminal nerve, so what do I do now?
Richard A. "Red" Lawhern said:
My wife finds that Neurontin takes the tip off the iceberg, and allows her to function well with a background of 1-2 level pain many days. Additional meds such as Baclofen (an anti-spasmodic), Flexeril (a muscle relaxant) or Valium (a mild tranquilizer) are sometimes effective in further moderating pain while the primary med is Neurontin. If you need to be tapered up on any medication, please do so with the advice of your neurologist.
Porcelina, I am so glad that you asked this question. I have to wait so long to see the neurologist that I am just really slowly upping the tegritol because of breakthrough pain but I wonder how much breakthrough is ok. I am finding by the evening, I only talk if I have to. I just tried to garden and a breeze keeps sneaking up and I had to come in due to warning pains. I can deal with these little pains but it really limits my activity and confidence and I wonder if it is ok for my nervous system. Of course when you get breakthrough pains there is always the fear of the demon of total pain returning.
I don't have a neurologist as such. I saw a useless one as an inpatient when I had the reaction to tegretol and the medical team promised to send a referral for a neurology outpatient appointment (it did say that on my discharge summary though they didn't write thyroid clinic so who knows if that was done like they promised!).
I'm upping my meds myself, my GP is quite happy for me to slowly do it within safe dosage limits. Currently on 1600mg a day of gabapentin. Also 50mg of amitrip, can go to 75 if I need to. Maybe I should explore those other meds Red mentioned if they are available here next time I need to go to the GP for a prescription renewal (though perhaps not the valium).
For Porcelina, Collette and Lorraine: there is a section of our Face Pain Info article cluster (tab on the menu above) which summarizes the medications most often used in both types of TN. You might want to print out that article to take with you for discussion with your primary care physician. See http://www.livingwithtn.org/page/info-8. For whatever this is worth, I would also recommend that you consider filing a specific letter of request with the Canadian healthcare system, asking that you be referred to a neurologist who regularly treats a significant population of facial neuralgia and neuropathy patients. This disorder is no job for a generalist. You can be harmed by a doctor's ignorance just as easily as by arrogance -- both of which are in plentiful supply in all medical care systems, but perhaps especially in government-run systems.
If any of you need access to papers referenced in this article, you can send me a request through ■■■■■■■■■■■■■■■■■■■. I can't post copyrighted materials here.
Thanks very much, Red. This site helps me feel like I'm not the only one with these odd symptoms, and there are answers and a real diagnosis. Other than that, I feel very alone in this medical system. I've printed out some pages from this website to take to my doctor - many people here in Quebec don't even have a family doctor.
Richard A. "Red" Lawhern said:
For Porcelina, Collette and Lorraine: there is a section of our Face Pain Info article cluster (tab on the menu above) which summarizes the medications most often used in both types of TN. You might want to print out that article to take with you for discussion with your primary care physician. See http://www.livingwithtn.org/page/info-8. For whatever this is worth, I would also recommend that you consider filing a specific letter of request with the Canadian healthcare system, asking that you be referred to a neurologist who regularly treats a significant population of facial neuralgia and neuropathy patients. This disorder is no job for a generalist. You can be harmed by a doctor's ignorance just as easily as by arrogance -- both of which are in plentiful supply in all medical care systems, but perhaps especially in government-run systems.
If any of you need access to papers referenced in this article, you can send me a request through lawhern@hotmail.com. I can't post copyrighted materials here.
Funnily enough I got a letter today saying I have been enrolled with the neurology department ... who aim to see me within 6 months. Oh yippee (said sarcastically!)
Huh! I got a text on Monday Porcelina as a reminder that I had an appointment first thing the next day (This Tuesday just gone!) that I did not even know about! I received my appointment letter for the Neurology day clinic that same day at 3.30pm. The good old kiwi health department! Pfftt! Luckily I managed to get to it - but even at that time of the day they were running an hour late!
I also have done the same thing - my GP oversees me and I check in with him on a constant basis, but he allows me to judge what I need to do with the dosage. I have only had two appointments with a Neurologist in the ten months I started having pain - it took a long time to see the Neurologist initially, so the first appointment was to say that I had TN. The second was an appointment my dr referred me for as I am still having trouble with pain - 5 months after being diagnosed. So frustrating, especially when meds aren’t working properly and you have a million questions you want answered after coming to terms with what is wrong and regular GP cannot answer them all…
Porcelina said:
I don’t have a neurologist as such. I saw a useless one as an inpatient when I had the reaction to tegretol and the medical team promised to send a referral for a neurology outpatient appointment (it did say that on my discharge summary though they didn’t write thyroid clinic so who knows if that was done like they promised!).
I’m upping my meds myself, my GP is quite happy for me to slowly do it within safe dosage limits. Currently on 1600mg a day of gabapentin. Also 50mg of amitrip, can go to 75 if I need to. Maybe I should explore those other meds Red mentioned if they are available here next time I need to go to the GP for a prescription renewal (though perhaps not the valium).
I have had the exact same problem here in Canada -- it is really inhumane.
Mel S said:
I also have done the same thing - my GP oversees me and I check in with him on a constant basis, but he allows me to judge what I need to do with the dosage. I have only had two appointments with a Neurologist in the ten months I started having pain - it took a long time to see the Neurologist initially, so the first appointment was to say that I had TN. The second was an appointment my dr referred me for as I am still having trouble with pain - 5 months after being diagnosed. So frustrating, especially when meds aren't working properly and you have a million questions you want answered after coming to terms with what is wrong and regular GP cannot answer them all....
Porcelina said:
I don't have a neurologist as such. I saw a useless one as an inpatient when I had the reaction to tegretol and the medical team promised to send a referral for a neurology outpatient appointment (it did say that on my discharge summary though they didn't write thyroid clinic so who knows if that was done like they promised!).
I'm upping my meds myself, my GP is quite happy for me to slowly do it within safe dosage limits. Currently on 1600mg a day of gabapentin. Also 50mg of amitrip, can go to 75 if I need to. Maybe I should explore those other meds Red mentioned if they are available here next time I need to go to the GP for a prescription renewal (though perhaps not the valium).
Mostly just take the edge off. Sometimes I'm pain free…when I'm sleeping on the opposite side of the harsh pain. I've come to accept that I must "do" life with this unwelcomed guest, TN. There have been times where pain was gone when taking teg or tripleptal, but I was a zombie from those meds. Practicing relaxing and physical therapy along with my elliptical and total gym as a priority has been very helpful. Take care, my Friend!
What about seeing an osteopath? A friend of my recommends it, but she had a pinched nerve, not TN type 2. However, I have had relief from a chiropractor in the past, so I'm wondering if an osteopath would be helpful. Anyone tried it?
Richard A. "Red" Lawhern said:
My wife finds that Neurontin takes the tip off the iceberg, and allows her to function well with a background of 1-2 level pain many days. Additional meds such as Baclofen (an anti-spasmodic), Flexeril (a muscle relaxant) or Valium (a mild tranquilizer) are sometimes effective in further moderating pain while the primary med is Neurontin. If you need to be tapered up on any medication, please do so with the advice of your neurologist.
I've tried osteopaths before but not for TN yet. Osteopathy really helped me with my sciatica and after my first was born she wouldn't feed lying on one side (so she would only take one breast for a feed not the other) and I took her to the same osteopath who did cranial osteopathy on her (after saying was she stuck during birth with her head, which she was for a little bit around her forehead) and afterwards immediately she would feed on both sides. Maybe a bit TMI but it proves it does work for some conditions :)
Osteopathy and Upper Cervical Chiropractic have been reported by some patients to provide relief from TN pain. The observational and trials science beneath both of these techniques of medical practice is shaky to non-existent. But as long as your neck is not violently or sharply "adjusted", neither should hurt you, Porcelina. Please do report any results you observe...
For me Gabapentin worked most of the time but Oxcarbazepine was a Godsend last May and for months I was pain free til I had some dental work 2 months ago and I must assume it triggered something, been off and on in horrendous pain since. Back to neuro Wednesday and hope he can do something.
My meds have been very effective but I'm almost never without some pain. I'm ATN and take Gabapentin (Neurontin) 600mg 3x a day and Lamotrigine (Lamictal) 100mg 2x a day. Oxycodone 5mg, when needed, is very good in taking more than the edge off. What works for one may not work for another and finding the right med is agonizing (and expensive).. What drives many of us insane is the reluctance of many physicians in prescribing effective pain meds. In many states, physicians are required to submit copies of meds such as oxycodone to a state oversight group and Oxycodone is a popular street drug. In my opinion, many of the pain meds prescribed on our site are inadequate for pain management. I've been fortunate. I've had no trouble working out sufficient pain control my Doctor. Keep us posted.
Thanks for your feedback re osteopathy, I've got an appointment this Thursday to give it a try! I'll ask my family doctor about the gabapentin as well, since I couldn't handle tegretol either. Thanks very much for this helpful discussion. I wish you lasting pain relief with none of the awful side effects. Take care, all. Lorraine