I have the more constant pain with if I'm lucky a few days with no pain and then a flare with sever constant pain that lasts for days. I'm taking Tegretol and I'm up to 400mg twice a day and on top of that Hydrocodone and Oxycodone for when I have severe pain. Today my Dr. he'll refer me to the pain clinic because upping the dose isn't going to help. Has anyone experienced Type 2 before and what should I expect at the pain clinic? I've been dealing with this for roughly 4 months and at times it feels like I'm losing my sanity and the Tegretol side affects or not pleasant, tired and can't concentrate at work....any help or just others experience would be helpful.
Have you tried trileptal (oxcarbaApine)? I have found that using that with baclofen and norco as needed control my pain (most of the time) with fewer side effects. I did not tolerate tegratol at all. I take 450mgs of oxcarb., 20 mgs of baclofen 2xs a day and norco (325/7.5) up to 4xs a day. It does manage things fairly well. Sometimes I add a tylenol to it to augment or replace the norco.
I can certainly relate to you regarding severe constant pain - this happens to me quite alot. Days of no pain does not happen. What does happen is my facial pain will lower itself to a tolerable level and at any time my pain level will become severe. I have tried many different pain meds along with anti-seizure ones. The anti-seizure ai cannot take. Finally I am taking a pain med that will help me. I had appointments with two pain clinics. Because of these appointments, I went for several nerve blocks which made the pain worse and also Botox injections that were unsuccessful. In 2009 I had MVD surgery with no results. I have tried everything with no success. Cannot work so most of my days are at home resting. Type 2 is not familiar with me - I never heard this term before. I am hoping that I did offer you some insight. I am so sorry for the pain you are experiencing and wishing you all the best when you have your appointment at a pain clinic.
To add a PS - the pain is never truly abscent - however it goes to a managable level that I can function with.
Jeej - read your earlier post and the meds you are taking I am not familiar with. I do, experience a level from about 4 to 10 on a daily basis. The pain has never went away. Dealing with pain now for many years. As you mentioned, I do have days of manageable levels.
I have TN2, i am the same as you i can go a few days without pain and then back with severe pain. The pain i have is left side and inside of nostril, and jaw and area where they took my molar out at and then did a bone graft. The worst of the pain is usally inside my nose. I am being referred to a pain clinis as well and i have no idea what to expect. New to this group.
I'm in the US - I don't know if meds have the same names in the UK. The oxcarbazapine is an anti-seizure medicine and baclofen is a muscle relaxer-how ever you have to take them for a couple of days to get them in your system before there is a result. And then there's a period of adjustment as to howmuch and how often
Thank you Jeej for your post. I live in Canada and I know that some medications offered in the US are not in Canada. I have been on 5 different ani-seizure meds and had bad side effects from them - actally a couple were of no help to the level of pain I am experiencing It's very interesting you mentioned a muscle relaxer. I have been to many doctors, specialists and surgeons and not one has ever mentioned this med. Wishing you many no pain or low-level pain days in your everday life. Please feel free to chat at any time.
Hi Jeej - I live in Canada so I'm quite sure, as you stated, some drugs will be different. You mention that oxcarbazapine is an anti-seizure medication. I have tried five different anti-seizure meds but had bad side effects. I am now on a pain med daily which is giving me some good days. Wishing you the very best.
Hi Marlene - I had bad side effects with Tegratal/carbazapine. Then I was on gabapentin (neurontin) and now oxcarbazapine (related I guess to the carbazine) and they are tolerable. I don't know if you've tried them but if not, they may be easier on you.
Good luck and be well - Write anytime. I hope you feel better
Hi Jeep - it sounds like all the meds you have mentioned are anti-seizure meds. I had taken 5 different anti-seizure meds and the side effects were not good. Gabapentin - I tried on three different occasions - was one of the worst. It did not help with my pain issues and as well, would have just horrible nightmares. Because of side effects, I can no longer take these meds. I do, however, take one pain med - 8 pills total a day -and this gives me some good days which in turn can help with my quality of life. Wishing you the very best and I would certainly like to keep in contact with you. Hoping to hear from you soon.
Marlene im the same as you i am not having luck with the anti-seizure meds i am about to go off the gabbapentin and just stick to the pain medication, that does give me a good few days.
Hi Valerie - pain meds are the only meds I can take. I am a highly sensitive person towards so many medications. Today is a good day for me. My pain level from a score from 1 - 10 is about a 4. This I can deal with. Have a great day and as always wishing you the very best. Be sure to keep in contact with me.
Hi Marlene, i am having low pain day too. And i wish you a great day and the best as well. I am not going anywhere this is the best support i know of right now and i am greatful to have you to talk to. So thanks so much for being there.
I was diagnosed in 2003 after going to doctor after doctor for three years. I don't take gabapentin or tegretol, or any of the anti-seizure meds. What I did find , by accident, was that the antianxiety pill Xanax helped me quite a bit. I was on Tramadol four times a day for 15 years until you had to get your scripts from a pain clinic. I tried a few clinics but they all made me feel like an addict, counting pills and urine tests, Since Xanax helps anxiety it also seems to calm the nerves of my face. I might take a Tylenol 3 once in a while, and a few more during flares. But it might be something to talk to your doctor about.
Hi Marlene - Youre right - they are. I do take norco too which helps. It was becoming less effective at the dose I've been on and reduced it about 6 weeks ago - Which makes for frequent pain. I'm hoping by doung so I'll go back to where I was and have it be effective again. I did'nt want to be on anything harsher or at a higher dose than what I was on. I'm interested to know - What pain meds do you take?
Hi Kay - I'm interested that xanex helps. I've never taken it and tramodol makes me queasy. I'll ask about at my next appt. thanks for the tip
Jeej
Hi Valerie - thanks for your message and I'm so happy to know that you also are having a low pain day as well - isn't it great! If you don't mind me asking but where do you live? I live in a small province in Canada called Nova Scotia. Just wondering because treatment practices could be different from country to country. I wll always be here for you. Keep in contact.
Hi Jeej - first of all where do you live? I live in Canada. The reason I am asking this is that I am not familiar with the med norco you are taking. I have never heard of it. I have a very high sensitivity to pain meds. I have tried many and there is only one that can help me and give me some quality of life. The name of the pain med is furinol. I'm sure that you have not heard of this pain med. I am also on an anti-anxiety med called Xanax. I take this med when my facial pain reaches a high level and this med does help very much to settle me down. Hope you are having a great day and please ask me any questions. I can only answer based on my experiences and believe me I have been through it all.
Ji Jeej - I just answered your first post and notice in another post that you are asking about Xanax. Yes, please ask your family physician for a script. It greatly helps me. A very good med to take.