I am wondering about who “is in charge”–other than me personally-- between my PCP and Neurologist. My Neurologist put me on a dose of Tegretol and about 3 weeks later my PCP dropped the dose down by 200 mg because he didn’t like the daily nausea I was having-- and the pain came roaring back and I felt like I was back at the beginning of this whole pain journey. I have decided that I will not allow this to happen again, the pain is slowly receding-- the Neurologist immediately ordered me back on the previous dose with the possibility of a higher dose if needed. During my first visit with my Neurologist he told me that I needed to stay on the original 900 mg dose for 6 months. Any advise?
I think you have stated the answer to this, you did seem to have found a good working dosage, I would fight to stay on that if I were you. Good on you for taking a stance, owning your own care with the help of an expert and trying to regain some quality of life. It really is not too much to ask!!
I have only ONE prescribing doctor. I've chosen my Neurologist. However, I see a facial pain specialist who sometimes wants to change things, up doses, add something, whatever. But he feels like he is in charge. So I take that info back to my Neurologist and then we discuss the changes and he (the Neuro) writes me new prescriptions, if necessary. My Neuro is open to taking advice from my pain specialist because he knows that the specialist knows more than him. If it's something odd, he'll question it. Also, my pain specialist always wants me to ramp up/down on meds super fast, while my Neuro will say no, do it over a few weeks.
I don't know, it's a tough question. I think having only one prescribing doctor is important, so which one is the question. Go with who is more knowledgeable, but easy to work with is important too.
That sounds like a pain in the arse to me. My doctors work as a team general doctor, neuro, and the pain managment doctor. My general doctor fights for my corner and so does my neuro in large ways. The local hospital messed up big time, givinge me a combination of drugs that were fatal. It was my neuro that first found out about and let my general doctor know. Both of them had words with the doctors involved with and the hospital, there huge notes in my charts on this, besides them telling me about. I am the one that is is in the driver seat in short with them giving my the options on what to do. It took work for me to get these relationship with me doctors.
In the event where there is a disagreement it is discussed between them and me. Doctors disagreeing with each other on your care and well being; along with messing with medications is huge no no to me. Any doctors that were unwilling to work with another doctor have been " fired" from my care. I don’t Have the time for that crap; besides aren’t two heads better than one? You should have trusted doctors on your case and not some power hungery know it all doctor, or someone who refuses to work with aFnother doctor because it is not the same practice as theirs.
Back to the main question my doctors work as a te and ultimately I the one who is in control of my health and care. I hope your doctor stop acting like asses soon.
My healthcare forces me to have multiple prescribing drs. -- neurologist, neurosurgeon, pain specialist, etc. The policy is that whoever prescribed something initially is responsible for it forever -- so if the neurosurgeon tried you on tegretol last year and you've seen two other specialists since that time, they are still responsible for your refills/dosing. They use one pharmacy and one computer system, and I'm guessing this arrangement is for financial/professional courtesy reasons.
For the patient, it's brutal, because it creates confusion, requires a lot of extra phone calls, and casts suspicion on you re: non-compliance, etc. even when you have very carefully followed the rules. My PCP grilled me once because the neurosurgeon's PA called in my prescription and she thought it was an additional doctor I hadn't disclosed. The crankier I got about this arrangement, the more adversarial things got, so now I just try to get along. I'm afraid if I changed my insurance it would be "out of the frying pan and into the fire." But it is a terrifying arrangement for the patient, for sure, and it has led to less flexibility in terms of changing meds/dosages. Needless to say, I have paid out the nose for this healthcare.
I say the neurologist has authority because they (should) know more about your issue.
YOU are in charge. Go with the one with whom you are most comfortable. No reason to be in unnecessary pain. I noticed that the postings are old. How are you doing now?
Since that was over a year ago, I left the Neurologist because he told me that I only had the choice of two drugs, that I would “have to learn to live with the side effects” (in my case they were pretty bad). The final straw was when I asked him about the future with TN, I.e. What could I expect, would it get better or worse, etc. ( I knew the answer because by then I had done a lot of reading about TN) and he looked at me, laughed, and said, “Why do you think they call it the SUICIDE DISEASE? It just keeps getting worse and worse.” That was the last time I went to him. I found another intelligent, knowledgable Neurologist who I have been seeing for over a year now. I have also learned that I can’t really trust anyone totally about the meds I’m taking, there have been too many mistakes-- wrong strengths, directions for tapering up or down omitted or inaccurate, etc. I have found 2 mistakes that the pharmacy has made so basically I double check everything to do with my meds… This doesn’t even take into account my brain fog which means that I have to routinely double check my meds anyway. With meds I have the Drs prescribe the meds for their own specialty that I see them for. The PCP knows about all of them and is the " ring master" but defers to the Neuro dudes, Rheumotologist, etc. I have decided that I have to be in charge and that after some of the nasty experiences I have had with TN and meds my husband and oldest daughter have to be aware and wel versed on the meds I take and they now carry a meds list just as I do. So I guess that’s the way I have figured out my dilemma.
If I had an experience like yours, I would seriously consider reporting that neurologist to a higher authority. No one should be treated the way you were.There are many different drugs that are used to treat TN. Sometimes It takes awhile to find the right combo. As we say around here,"different meds for different heads." It's so helpful to have an understanding family. Good Luck.