Most of us know that the front line medications which are useful in treating Classic cases of TN are Oxycarbamazipine, Baclofen and Neurontin. I am wondering if any of the other ATN sufferers have found relief with these, or any other non-narcotic medications.
As always, wishing you all a pain free day, and the most excellent of coping strength.
Hang in there and let me know about your experiences with medications.
Stef I was on all these medications and for me NOTHING helped. If anything they may have made me sleepy so I slept better.
Hi Stef, I was on Tegretol for about a year I was on 1200mgs a day, and it was helping to a point, I still had alot of pain everyday, and the doc would just keep increasing the Tegretol each time the pain intensified. But I was very ill from the side effects - pretty zombied alot of the time. This past May I started on Topamax and have had huge benefits from it. It took me about 3months to come off the Tegretol (since about Sept - not a nice time) and I use topical ointments often for pain relief that I rub into my face - e.g. Deep Relief Ibuprofen, Ketoprofen, sometimes Capsaicin cream for extra pain relief (i have these on me all the time now) and I’m in a much better place than I was last year. I used to always fret about how much I couldn’t control/understand this disorder but I think all I can do is manage a healthy lifestyle as much as possible and take each day as it comes. Good on you for starting this group up. Thanks, Susan.
Thank you, Susan. ATN is a bit of a different and fierce animal, I suppose. I had to start a new account due to a bug in my old one. Yes, the side effects from Tegretol knocked me out too. Gabapentin/Neurontin seems to be the only group in the non-narcotic category which helps me a bit. They told me to take Cymbalta, that it helps push the Gabapentin. Topamax, huh? Never tried that one. I have a script for Baclofen given to me by my Neuro. I don’t know whether to have it filled or not. I’m tired of trying stuff that is like a placebo, and just makes me sleep. I have also tried the creams and trying to live a healthier lifestyle. I am a Christian and put things in God’s hands, generally. However, I wonder when the medical community is going to wake up to the special needs of ATN patients?
Susan said:
Hi Stef, I was on Tegretol for about a year I was on 1200mgs a day, and it was helping to a point, I still had alot of pain everyday, and the doc would just keep increasing the Tegretol each time the pain intensified. But I was very ill from the side effects - pretty zombied alot of the time. This past May I started on Topamax and have had huge benefits from it. It took me about 3months to come off the Tegretol (since about Sept - not a nice time) and I use topical ointments often for pain relief that I rub into my face - e.g. Deep Relief Ibuprofen, Ketoprofen, sometimes Capsaicin cream for extra pain relief (i have these on me all the time now) and I'm in a much better place than I was last year. I used to always fret about how much I couldn't control/understand this disorder but I think all I can do is manage a healthy lifestyle as much as possible and take each day as it comes. Good on you for starting this group up. Thanks, Susan.
Hi Stef,
Yes Baclofen helped me but only reduced the pain for about an hour. Neurontin has helped me quite a bit, but not enough for live a normal life. I’m wondering if I could combine the two. The PM doc wants me to come back and discuss new meds, he said he would be open to opiates. I am afraid, what if I like them a little too much. What if they make me zombie-ish and check out of life. Would I be better off just living with the pain??
Non of the tricyclic meds helped the pain and all had bad side effects.
There has to be an answer out there!
Yes you can take muscle relaxant and ant-seizure meds together (if your Dr. agrees), and a large percentage of TN patients I’ve talked to here, do just that. We each need to try different combinations that help us, because we are all so different. I think your fear of opiates is heathy and quite common, but the studies show that when taken for severe pain in the right dosage, a person does not get high or addicted or abuse the drug. If a person id getting high, the dosage is too high. It just neutralizes the pain. You might feel groggy for the first 2 weeks until y our body adjusts to it, but after that, I became more alert and more able to concentrate and think quickly, than I am when I am feeling the pain.
Thanks, Sheila. What works for you?? I want to see my doc next week and be prepared to give him some options to consider that have helped for others with my same problem. I really appreciate your input.
I have had this for 15 years, and I am now on morphine. In the USA I was on hydrocodone, but they don't have that in Canada. I like morphine better because I can take a smaller dose when the pain is less, and I don't have any of the side affects that I used to get with hydrocodone. No light headedness, no constipation, no upset stomach and more. There are a lot of things that people do at home to lessen their pain. This discussion mentions a few, but the comments people left are just as helpful as the original suggestions I got from people. http://www.livingwithtn.org/forum/topics/share-your-little-helps-with I think I will buy some hand warmers to keep in my purse for when the pain hits when I am out. They are so soothing, and flat, you knead the package and it gets warm, and is great for pain while driving or at work or sitting in a restaurant without being too obvious. I also want to try an ultrasound machine because it has a money back guarantee if it doesn't work for me. It is a hand held model for home under $100 at www.ezultrasound.com .
Best wishes,
Sheila
Christina Gunderson said:
Thanks, Sheila. What works for you?? I want to see my doc next week and be prepared to give him some options to consider that have helped for others with my same problem. I really appreciate your input.
Stef - I have been on both Carbatrol and Lyrica and have had better success with Lyrica. I must say that the Lyrica also makes me sleep better, and being a recovering insomniac it’s pretty cool to sleep all night. I do call my Lyrica my “happy pill” because it does give me a buzz during the day, but nothing insurmountable. Hope this helps.
Godspeed,
Brian
Brian,
I was going to ask about Lyrica at my next Pain Management appointment.
I've gotten only rave reviews on this drug for Chronic Pain. I am glad it is helping you.
God bless,
Stef
Brian Rawson said:
Stef - I have been on both Carbatrol and Lyrica and have had better success with Lyrica. I must say that the Lyrica also makes me sleep better, and being a recovering insomniac it's pretty cool to sleep all night. I do call my Lyrica my "happy pill" because it does give me a buzz during the day, but nothing insurmountable. Hope this helps.
Godspeed,
Brian
Christina,
Morphine Sulfate (MS Contin) has given me the most long-lasting relief I've received from any medication, with the least side effects, thus far. I don't feel like a zombie. But, everyone is different. I have heard people complain of feeling zombified by Opiates. I'm just not one of them. I take Roxicodone (Oxycodone with no Acetaminophen) for breakthrough pain. I am the most well-maintained I have been.
Of course, I have a heck of an Opiate tolerance. My daily routine would probably be too much for someone beginning. A beginning Opiate would be Hydrocodone, in the states, probably. But, they don't last as long as they really need to, I think.
Just my take on it.
Hope this helps,
Stef
Christina Gunderson said:
Hi Stef,
Yes Baclofen helped me but only reduced the pain for about an hour. Neurontin has helped me quite a bit, but not enough for live a normal life. I'm wondering if I could combine the two. The PM doc wants me to come back and discuss new meds, he said he would be open to opiates. I am afraid, what if I like them a little too much. What if they make me zombie-ish and check out of life. Would I be better off just living with the pain??
Non of the tricyclic meds helped the pain and all had bad side effects.
There has to be an answer out there!
Yes, Rita.
None of the meds which work for typical TN sufferers seem to work very well for ATN sufferers. None of the above worked for me either.
I have found some relief, but it has been with pain killers and benzodiazipines. Sometimes, people don't like the idea of becoming dependent upon something. But, it was favorable to my former "quality of life".
I hope you find what does help very soon.
Best wishes,
Stef
Rita Kennison Reese said:
Stef I was on all these medications and for me NOTHING helped. If anything they may have made me sleepy so I slept better.
I'm glad this discussion is here! Yeah for the Lyrica good reviews. If anyone hasn't tried Lamictal yet, I would recommend it. No side effects, for me, and has worked well for quite a while now. I do take other meds, too, but am on the best combo of meds ever. I don't think I would do very well without an anti-seizure med on board.
Topamax, Gabapentin & Trileptal did not work for long for me. Topamax was worthless and Gabapentin & Trileptal worked for a year each.
Stef, if you try Lyrica keep us all posted on whether or not it helps. It will probably be the next drug I try if Lamictal fails sometime soon.
Johanna
I'm on neurontin 2100mg. I find it helps. If I wasn't on it my ears would hurt all the time. And let me tell you, when my ears hurt as bad as they do, nothing else matters.
I will, Johanna. I am going to ask for it at my next Pain Management appointment. They keep on giving me Neurontin for some reason. I don't really understand why.
Johanna Smith said:
I'm glad this discussion is here! Yeah for the Lyrica good reviews. If anyone hasn't tried Lamictal yet, I would recommend it. No side effects, for me, and has worked well for quite a while now. I do take other meds, too, but am on the best combo of meds ever. I don't think I would do very well without an anti-seizure med on board.
Topamax, Gabapentin & Trileptal did not work for long for me. Topamax was worthless and Gabapentin & Trileptal worked for a year each.
Stef, if you try Lyrica keep us all posted on whether or not it helps. It will probably be the next drug I try if Lamictal fails sometime soon.
Johanna
They probably keep giving you Neurontin due to the fact that is one of the first-line, first choice meds for TN. The other one that I am really trying to avoid is Tegretol. I am keeping that one as a last med resort. Neurontin did work for me for a while and most likely the reason it stopped working was due to the fact that I couldn't handle the side effects and was unable to increase my dose any higher beyond 1800 mg. Like I said, I really like Lamictal. I hope that the increased pain I have been having is related to barometric pressure changes or stress.
Good luck and thanks for being willing to share your experience with Lyrica should you choose to take it. I will be anxiously awaiting your thoughts. Jo
Stef said:
I will, Johanna. I am going to ask for it at my next Pain Management appointment. They keep on giving me Neurontin for some reason. I don't really understand why.
Johanna Smith said:I'm glad this discussion is here! Yeah for the Lyrica good reviews. If anyone hasn't tried Lamictal yet, I would recommend it. No side effects, for me, and has worked well for quite a while now. I do take other meds, too, but am on the best combo of meds ever. I don't think I would do very well without an anti-seizure med on board.
Topamax, Gabapentin & Trileptal did not work for long for me. Topamax was worthless and Gabapentin & Trileptal worked for a year each.
Stef, if you try Lyrica keep us all posted on whether or not it helps. It will probably be the next drug I try if Lamictal fails sometime soon.
Johanna
To All.
For the last year and a half I have been taking Lamectil and Gabapentin and when the pain breaks through,Oxycodone.It's worked well for me. I still have low grade pain that increases when eating, talking too much etc.There are times when walking kicks up pain and I have to walk quietly on my tip toes for awhile. But I remember the pains before the meds Constant. It comes roaring back from time to time. I stayed home for four days last week. I didn't want to talk. In another post, I described this as The Storm.
SFBIlls
Hi SFBill, Welcome. It really feels good to hear a success story! Thanks so much for sharing your experience!
Best wishes, Sheila
I have been fortunate that most of the time I can manage on one tegretol a day. Sometimes I have break through pain but have been able to manage it. Last Sunday I was having more pain and upped my dosage to 2 but I tend to start having severe itching on my lower legs. I had a check up this week and have been doing well. Today, I have been having a lot of pain and had to take a half dose in addition to my single dose and to be honest, I am hurting a lot…and itching. Ok, I’m whining. This is the one place I can. I just wish there was something more that I can do to help ease the pain. Any suggestions?
Barbara, there are 8 to 10 anti-seizure meds. You are developing an allergy to tegretol. Please get changed to another, before the allergy gets worse and turns into anaphylactic reaction.
Sheila