Hi Sarah you could try swapping your Percocet for Tapentadol as they are similar painkillers and Tapentadol can be taken with Tegretol as I was prescribed both last year for a short time. It might help with your pain and allow you to build up your tegretol to a therapeutic level. It is infuriating that you can't just start at a therapeutic dose of these medications and have wait to build up the dose that will work.
Hopefully you will get a plan that works for you to give you relief. Takecare
Thank you SO MUCH. I will ask my doctor. How slowly did you build up to your dose on tegretol? My doctor is starting me at 100 mg 2x a day. He said I can add 100 mg a day until I get to the dose that works which he is hoping is somewhere between 400 and 800 mg. I am worried that is too quick. I feel like I should be increasing the dose each week not each day!
Hi Sarah, I've been where you are. When my pain started back in 2000 I had no idea what was going on. I was the mother of 5 and 33 years old. I was diagnosed with Atypical TN. I had the sharp shooting pain but also the constant burning. I was allergic to all the tegretol and anti seizure drugs. Believe me I tried them all. I am also allergic to morphine. Percocet for the pain, topamax for the headache, cymbalta for the nerve pain and then I was still in pain. My Dr. decided an MVD was necessary due to my age and degree of pain. It was successful and I was pain free for 6 years. My pain returned in 2006 but with severe headaches. I had balloon decompression done unsuccessfully which left me with a more severe even rarer condition called anesthesia dolorosa. I then had gamma knife and several other procedures to no avail.
Sarah, I'm not telling you all of this to scare you. Pain, your pain is real but unfortuneately what we have is rare and how each of us feels is a little different. No two of us seem to get TN exactly alike. That's why we each have to be our own advocate. Find the Dr., drug, device, support system, therapy, whatever works for you, on an individual basis. Something that I have found that helps when the lightning sharp pain hits is relaxtion. My first response is to tense up my body but that really only makes it worse. Now the first thing I do is close my eyes, slow down my breathing [like in childbirth], start at my toes and relax them and then slowly relax each part of my body until I get to the top of my head. If the pain is not gone by then I repeat until it is. At a time when I feel as though I have no control over my body this gives me some sense of control and seems to lessen the pain make it go away faster.
Sarah, you are not in this alone. Ask for help, it is not a sign of weakness to ask for help. Family, friends, church or community let them help you. You would do the same for one of them right? There are good Doctors out there who know what they're doing, who can help and who do care. Rest!!!! Let the house go, the kids will remember the time you spent with them not if the house was a little messy. You can do this and it will get easier. We are all here for you. I wish I could give you a big hug and let you know it's going to be ok, but it will be. There is help out there and people who care.
Christine.
Hi Sarah it was so long ago that I increased my tegretol at the beginning, but I think I was on about 800mg once I reached a therapeutic dose but through the years it has increased. When I restarted my tegretol after my one and only remission a couple of years ago from 400mg I increased myself 200mg every 3 days (as I was on holiday & had a major flare up) until I reached 1600mg/day, but my neurologist told me that was too quick for such a high jump in dosage. If you are not too happy increasing 100mg each day as your Dr suggests you could do it every 3/4 days and see how you go. The UK government health guidelines suggest increasing every 3 days but I think I went to such a high dosage from a low dosage in a short period of time. Discuss with your Dr and get a good neurologist. I'm hear if you need me. Thinking about we all know how you feel as we have been there.
Sarah,
My neuro has me up my tegretol by 100mg per week and 100 mg every 2 weeks if I am decreasing. I have been warned by her not to do it quicker. Also I am prescribed norco for pain with my TN2. I was up to 1000mg of Tegretol but had to reduce it down slowly because of the side effects of drowsiness (sorry but word searching will become a part of your life). I currently take 600 or 700 mg a day (the higher on the weekend). I am also taking dilantin but I am not sure that it is working (and the side effects are horrible). Give the tegretol a chance, it may help you but unfortunately you build a tolerance over time. I have read that people here have been having success with Lyrica. I am just too scared of what I will feel if I have to wean off the Tegretol for 12 weeks and then start another med without knowing if it would be worth it.
I have type 2 also and the pain was awful for 6-8 months while I went to 7 dentists with varying specialties. Finally got a referral to our state dental school to the head person who diagnosed it.He put me on gaberpentin, which has helped so much. Still have break thru pain and have to be careful to take med's on time. Dosage has increased twice and have an appt. to increase it again but at least I can bare it. Others don't understand it. Quit my job since talking all day made it worse and I got headaches. Sounds like the disability route is impossible to get through for most. Where do you live? So few physicians and dentists know much about it at all. This site has been my first good help seeing what others are taking and what's working. Tryhot compresses and I also got Voltaren that is a cream I can use on my face where it hurts.
Good luck and hang in there!!
Hey Sarah. I'm new here too and like you came looking for support and encouragement. My answer to your question is YES! I have pain all the time so I understand. It varies in intensity but is always there. My doctor told me to be careful with medicines like Percocet because although they are for pain can sometimes make nerve pain worse. I take 800 mg of ibuprofen. I know it sounds strange that a simple over the counter medication could help more than some of the prescriptions but it does for me. It often does not help for long but it can reduce swelling which relaxes the breakthrough pain. My doctors are still working to come up with something that helps the everyday pain. I have tried so many but nothing is helping yet. I hope they find something that works for you!
Thank you all so much for replying. I decided to try the amytriptaline again since it had worked so well years ago. I just pray it will work again since the last time I tried it, it did nothing… I have also asked my doctor to refer me to OHSU here in Oregon where they have a facial pain specialist. I guess it’s just one miserable day at a time. I feel like a zombie and depression is so hard to control because of this. You all bring me hope so thank you so much.
Annie said:
Sarah , I have tn and was dx about 4 months ago ! I take tegretol and gabapentin and amdatripdline and vicadin and cymbalta ! These are my daily meds , you need a good neurologist to help you !
I have been working with my neurologist, pain management doctor and family doctor to find some relief. I feel like I've tried it all at this point with no relief. I have some better days and some worse. That seems to be normal from what I hear on this site. I never knew anything about TN and this site is helping me so much! I understand that a lot of my symptoms are "normal" with this but still don't know what to do next. I wake up with the burning pain that usually hurts my eye, cheek, ear and neck. Sometimes, I can't sleep because I feel like I'm choking. Does anyone else have this? My doctor said it's from the swelling but I don't know how to stop it. I hope we all find relief some day.
I just saw you are requesting a referral to OHSU. I highly recommend Dr Brett Stacey in pain management, and Dr Ahmed Raslan in neurosurgery.
Sarah said:
Thank you all so much for replying. I decided to try the amytriptaline again since it had worked so well years ago. I just pray it will work again since the last time I tried it, it did nothing.... I have also asked my doctor to refer me to OHSU here in Oregon where they have a facial pain specialist. I guess it's just one miserable day at a time. I feel like a zombie and depression is so hard to control because of this. You all bring me hope so thank you so much.
Annie said:Sarah , I have tn and was dx about 4 months ago ! I take tegretol and gabapentin and amdatripdline and vicadin and cymbalta ! These are my daily meds , you need a good neurologist to help you !
Hey Sarah. I'm glad you found this site. It has helped me a lot even when I just needed to know I wasn't alone or crazy! lol
I have pain almost all the time and have the breakthrough stabbing pains too. The pain all the time is a burning type of pressure that often feels like someone is inside my face gripping it. That is bad enough but the stabs are even worse. It is important to take the tegretol as long as you can to see if it works. I'm taking tegretol, neurotin, amitriptyline, and clonazepam and I still have pain most of the time but the stabbing pain has decreased. I have leaned from others the key is to get a neurologist that listens and understands TN and ATN.
They are still working on helping me and I have no choice but to remain hopeful. Also, prayer and meditating thru the pain helps. I have learned to used deep breathing, calming techniques during the stabbing pain periods. Good luck and I hope everyone has a painfree day.