I have been on Tegretol for a couple weeks-now on 400 had a little relief. But stopped. My doctor thinks I should try something else. Do I need a stronger dose or do I just give up on it? In the book Striking Back, I read that u increase until u get relief or hit your maximum dosage. I know I can go higher than 400 mg and did feel some relief. Just not too confident in this dr. He also thinks it's SO rare that people have bilateral TN. All I can say is that I met plenty of people on here with bilateral TN.
Any advice greatly appreciated. I am very confused and frustrated.
So Jackie u didn't see any benefit until 800 mg's is that correct? I went up to 600 on my own cause this guy doesn't know what he's doing, and I do feel better. Not sure why he wants me to stop at 400. I think I am going to tell him that I want to give it a longer try and increase. Does that make sense to do that and not start on something else at this point? I know that others say it's really bad for our systems. UGH!
Jackie said:
Marla, Tegretol did not help eliminate the shocks until I reached 800mg, but we all vary.
Hope you have the personal message I sent you Marla. Just remember, these are very powerful meds and I would always gain a medical opinion about increasing the dose. Hope you have some relief very soon.
My understanding is that as part of the general population, bilateral TN is rare. You find more of it here because the only people here have some form of TN, or are loved ones of those that do.
My experience, both personally and from reading these boards regularly for quite awhile, is that it is hit or miss in terms of having a doctor who knows anything about it. I was lucky in that my general practitioner knew enough about it to recognize the signs quickly, but also knew that she was not well-versed as to what to do from there.
She referred me to a pain specialist, who also admitted to not knowing very much about the condition. My first appointment involved her doing a general Google search in front of me -- I didn't feel hopeful or positive at that point. However, she was aggressive, both in her desire to understand the condition better, and to get aggressive in a search for a solution for me so I wouldn't have to live life struggling through the side effects of the medications.
More doctors got involved, and more knowledge was gained and shared by everyone.
All of that is to say this: In my humble opinion, very few doctors know very much about this condition. I speculate that much of it is due to the fact that not many people suffer from it, and much of it is due to the fact that causes, treatments, and potential solutions are as varied as the people who suffer from it.
The only advice/insight I can offer (which admittedly isn't very valuable), is that it is vital that you find a doctor you are comfortable with, who you feel confident in, and never rely solely on what they tell you. This condition virtually requires you to become an expert on your own behalf, so you can shape and steer your treatment path.
Steph