my neurologisit told me yesterday that he does not no what to do with me. i am on tegretol and was on lyrica which took the pain away but cuased me to have physc symptoms and be very out of it it. he told me i had to cut back on it. i have constant pain in the tooth now woke up very bad today cant stop crying mentally not feeling well. i have been pushed around back and forth from doc to doc for 12 months now i am at a lost on what to do anymore anyone have any suggestions? thanks michelle
Fight through it girlfriend! You are stronger than this pain. Its hard to remember that sometimes, but it really is true. I am pretty new to this, and have had some pretty bad weeks, and a few days that I just wanted to die, but I am learning that its best to try to empower yourself - even if you are faking it! I have only been to 3 doctors so far, but as each appointment comes and goes, I am learning that instead of having the attitue of "what can you do to help me, doc", I am getting better responses if I say "I read about this, what do you think?" or "here's what I would like to happen, how can we make this work", that the doctors respond better. I think some of these neurologists are so full of themselves - and dont get me wrong - they are very intellegent, highly educated people, but they do not SUFFER FROM THE PAIN. Go armed with literature and research. And if he doesnt want to help you - FIRE HIM and go to someone else. It really sucks that we have to do this, but we do.
I also found that beating the crap out of my mattress and screaming into a pillow really does help get some of the frustrations out!! Try not to be alone today, try to talk with a friend, ask someone to come over and sit with you - a good friend will understand you just need some company. Being alone makes it worse for me too.
Keep a blog on this site, and use it, check in every couple of hours and "talk" your way through it. There are so many people here who will support you!
Hang in there, and fight! I hope you find some relief today, and some peace.
There are other options that your neuro doesn't seem inclined to research or talk about. Among them might be reduction of your primary meds with augmentation by Baclofen, a muscle relaxant, a mild tranquilizer, or one of the tricyclic antidepressant meds that is cross-active against neuropathic pain. Opioid medications also have a role to play for some patients.
On balance I would echo Nutmeg's approach: do your homework, take references with you for an appointment to discuss other drug regimes, and fire this idiot with extreme prejudice if he isn't willing to try harder. If you want to vent physically, you might also so a web search on the term "batonka". It's an air-filled club that you can use on inanimate objects without breaking up the house permanently.
Regards and best,
Red
thanks richard for your input. waiting for my md to call to see if he would put me on different pain meds. i am on motrin and nucentya right now. thanks michelle
All the best in your pain management battle Michelle, it sounds hell, been there, it can get better and I hope it's soon!
Michelle, be careful of high doses of Motrin. It can cause gastritis.
Regards, Red
michelle,
I'm in a similar situation with going toe-to-toe with a neuro over pain management and "what to do with me." First, you need peace of mind! The more stress you are under the worse your TN will be. Frayed nerves will amplify the TN exponentially. Red hit the mark. I was, finally, given a muscle relaxer and a mild tranquilizer earlier this week and my days are already 10 times better.
Am not saying it is a cure by any means but it can help bring you calm and keep tension, stress and the rest of your body from fighting against you. If this doctor will not work with you to bring overall health to your situation, get another. You deserve quality of life.
Coqi xoxo
my md gave me a new pain med it is not helping. i see a specialist on tuesday that deals with the tn. i just need to get through the weekend.
I have found wonders with prescription lidocaine patches -- while changing meds or for breakthru pain-- BUT I had to tell the doctor I needed them - he never brought it up! I found it here!
I'm very sorry to hear about what you're going through michelle but TN is not exactly very common and each TN case responds differently to the different drugs so it's not the easiest to treat but the good news is it's ALWAYS controllable you just need to find a good neurologist.
Being in Africa I've been in your shoes many times. Dissappointed by doctors at times of worst need when the pain is at its worst and all we needed was support. My experience with my mother's TN is that you need to find a balance where you are relatively pain free and the side effects (drowsiness, moodiness, etc.) is not taking over ur life. There is a wide range of options when it comes to medication. For instance there's Trileptal which is known as Tegretol's cousin minus the side effects. Not that it doesnt have side effects, they're just not as severe. There's also neurontin which a lot of people respond really well to. Now your problem is that your neurologist does not seem to be experienced or supportive. I suggest that until you find a good neurologist you start reading about the different drugs yourself. I've personally been reading "Striking back: the trigeminal Neuralgia Handbook" and I've found it to be very helpful in finding out about the different drugs and how they should be administered.
I truly believe that TN patients understand their condition and are often able to adjust their doses accurately. If you feel that your pain has stopped and you're bothered by the side effects, I think it's safe to decrease the dose gradually after you discuss it with ur doctor to get his/her advice on how to do it gradually.
I hope that was helpful at all. Just remember that you are not alone. A lot of people have your condition, some in places with horrible medical care (like me!!) all you need to do is to read up so that you don't feel helpless. Once you start reading you'll find out that it's quite simple and most certainly controllable.
thank so much for you help, i a ppreciate it very much.
Hi Coqi,
Question for you:
..."finally, given a muscle relaxer and a mild tranquilizer earlier this week and my days are already 10 times better."
This sounds like what I need on top of my 1800mg of Gabapentin daily...May I ask which muscle-relaxer and mild tranquilizer you've been prescribed so I can mention that to my neurologist? Thx, Rick
Coqi said:
michelle,
I'm in a similar situation with going toe-to-toe with a neuro over pain management and "what to do with me." First, you need peace of mind! The more stress you are under the worse your TN will be. Frayed nerves will amplify the TN exponentially. Red hit the mark. I was, finally, given a muscle relaxer and a mild tranquilizer earlier this week and my days are already 10 times better.
Am not saying it is a cure by any means but it can help bring you calm and keep tension, stress and the rest of your body from fighting against you. If this doctor will not work with you to bring overall health to your situation, get another. You deserve quality of life.
Coqi xoxo