I’m looking to hear your experiences. My Primary Care doctor wants to handle my medication one way and my neuro another. Both have good reasons for their treatment options.
My neuro is good - She comes from a large teaching hospital here in NY - same as my doctor who is new to me.
Few primary care doctors have deep training in neurology. That's what you go to a neurologist for. However, if you'll summarize their different opinions, I'll go into medical literature and online sources and see what I can find for you that is authoritative in choosing between the advice you've received.
A best-case solution for this kind of thing is to call both doctors and ask them to do a phone consult on the advice they've given you, to arrive at a consensus and then talk with you jointly about that consensus. A lot of docs will tend to resist this sort of thing, but it represents best practice and you have a right as a patient to advocate that they resolve conflicts in the courses of treatment that they recommend.
Regards and best,
Red
That is the best advice. I would love to hear what their opposing opinions are.
Well this is an interesting topic you bring up. I just happen to have some input on this. I have been taking an anti depressant. Well I was advised to take amitriptyline by neuro and stop effexor that was prescribed by my GP. Well GP didn't think I could do that. So we went down to 37. 5 from 75 and things didn't go so well. Point is... they work in the same group. THEY actually talked between the two of them when I wasn't around the neuro and the GP, and when I saw my neuro the next time, he said talk to your GP about the Effexor. THEN ,when I saw my GP he said stay at the 75 mg level of Effexor. But I have the luxury of both doctors working in the same group and the SAME building. THEY have same computer system where they pull up my record, and can see what I say to both doctors. One reason why I stuck it out with this neurologist.
Thank you Collette and Min. Min - both doctors are part of the same hospital but have different practices. It’s very frustrating when one says one thing and the other doesn’t agree, so I understand what you went through.
Red - thank you so much. My neuro says I have Trigeminal Neuralgia. She says that if I would have walked into the E.R. instead of her office they would have immediately started me on Tegretol and would have given me the same dx. If I had shingles or herpes simplex is up in the air. It is her opinion that herpes causes TN. I understand the controversy around it. I have read every post here about it. I have questioned her, and TN is still her dx, not PHN.
Because of my history with shingles she treated me with Valtrex even though all I had was redness and clinical symptoms of muscle weakness and pain in my ear/neck. She started me on Gabapentin because she was trying to limit the meds I’am on but also wanted to treat my migraines. Her other reason was that Gabapentin is processed outside the liver and didn’t want to to flood me with medicines since I have never been on anything before. Her main goal is to control the pain with the least amount of medication.
She initially started me on 300mg of Gabapentin 1 x day. She increased it to 2 x day when the pain didn’t subside. She will increase it one more time and if that doesn’t work will start Tegretol and boosters if I need them. By booster she meant baclofen, and some of the older anti depressants.
My Primary dr is new to me. I’ve actually never had one, but at my neuros suggestion I got one. His dx is Post Herpatic Trigeminal Neuralgia. I saw him 2 months after my dx from my neuro. He had me decrease my Gabapentin to 100mg 4 x day. He felt that because I was still having ear pain and such that I was having to many peaks and valleys. He also wanted to start me on Cymbalta. My gut feeling said not to start Cymbalta until I saw my neuro. I had a previously scheduled appt with my neuro a week after I saw my Primary. She says no to the Cymbalta, and definetly no to the Gabapentin 100 mg 4 x day - that it’s not an extended release? I may have misunderstood that.
So I’m at a loss as to who to listen to. My neuro is sharp. Not the best bedside manner and it takes her forever to call me but her reasoning for my dx made the most sense to me. I wish I could articulate her explanation here. I like my Primary very much. He has patients with TN, and he wants to see me every 6 weeks - so I feel like he cares and wants to treat me. I just feel unsure?
I called my neuro and spoke with her admin and asked if she could either speak with my primary or myself so that I know what to do medication wise.
My apologies for the long winded response. I do appreciate all of your feedback.
Jennifer,
A couple of observations, if I may.
For one, a dose of Gabapentin at 400 mg per day is below the range usually considered effective as monotherapy for TN. That level might make sense if you're also on Tegretol or Amitriptyline, but not alone. Look up the med on rxlist.com and read several subsections of the data list, then talk with your doctors.
Second, My reading is that your neuro has voiced a quite reasonable rationale for putting you on a higher dose of Neurontin and keeping you off Cymbalta. The latter is a type of antidepressant that seems to have rather mixed effectiveness even against depression. My wife switched from Tegretol to Neurontin for much the same reasons.
One other note: one or the other of your docs should do a liver panel (blood test) and check for blood levels of your anti-seizure drugs, and Sodium balance at least every 90 days while you're acclimating to your meds.
Regards and best, Red
Thank you very much for taking the time to respond, Red. My neuro increased my Gabapentin this afternoon. If that doesn’t do the trick I will take the rx list and have a discussion about different combinations to try before switching to Tegretol.
My liver panel was just checked - I did not know that Sodium levels need to be checked as well. I will mention that at my next appt if I don’t see it on my labs.
Jennifer,
A couple of observations, if I may.
For one, a dose of Gabapentin at 400 mg per day is below the range usually considered effective as monotherapy for TN. That level might make sense if you're also on Tegretol or Amitriptyline, but not alone. Look up the med on rxlist.com and read several subsections of the data list, then talk with your doctors.
Second, My reading is that your neuro has voiced a quite reasonable rationale for putting you on a higher dose of Neurontin and keeping you off Cymbalta. The latter is a type of antidepressant that seems to have rather mixed effectiveness even against depression. My wife switched from Tegretol to Neurontin for much the same reasons.
One other note: one or the other of your docs should do a liver panel (blood test) and check for blood levels of your anti-seizure drugs, and Sodium balance at least every 90 days while you're acclimating to your meds.
Regards and best, Red
Jenn, I have a feeling tho this situation may come up in the future for me. All we can do I guess, is simply tell whichever doctor we are seeing at the time. "My neuro doesn't feel I could benefit from taking this medication". Or some such...I mean this is unfortunate. But in reality. I don't know how we can avoid it. I have a general practioner and a neurologist. Neurologist's don't treat depression or anxiety, so it's gonna happen. It was very awkward for me, but at the same time it's not our fault that it happens.They are professionals. I would think there should be a certain way it can be handled. Maybe a conference call.?? LOL
I have a similar diagnosis and every dr I see writes something different about the diagnosis in my files. Another theory about the relationship between the PHN and the TN is that maybe the TN was there first even if you got shingles, or maybe you just hit the jackpot and have both. There seems to be a lot of disagreement about this even among well-informed doctors. I think it's that they don't want to say that one causes the other unless there's proof from good published studies.
If it is really "just" PHN, as your gp thinks, you get into some much better odds that it will eventually go away, so that's really something for you to hope for. Even if that's the case, the lower dose of gabapentin doesn't seem as logical as the neurologist's plan. I think they both sound pretty good, so you're lucky and the neurologist has more specialized training about the meds. You will probably end up trying a lot of different things, and the gp should not be offended if you try the neurologist's plan for now.
My primary doctor wants me to take a drug holiday at the one year mark of my dx. He says that at that point we will know how much damage there has been done to the nerve - meaning by the amount of pain that comes back. He said that it’s usually at that point that we know if either all the pain is gone or if you do have pain, that’s what your left with. He says at that point a medication change may be in order as well because they become less effective.
I also have treated Graves disease which is a thyroid condition, I had the radio iodine therapy to kill my thyroid off. So now I take Synthroid. This was almost 4 years ago. It took that long to get me on the right amount of Synthroid.
I had my files sent to me from my original endocrinologist, and I have been complaining about ear/ eye pain for 4 years. In the notes she attributed all of my pain on the radio iodine therapy and the Graves disease. In my heart of hearts I hope that is the case. That this pain is something else.
Mac - what is your story and dx?
I have a similar diagnosis and every dr I see writes something different about the diagnosis in my files. Another theory about the relationship between the PHN and the TN is that maybe the TN was there first even if you got shingles, or maybe you just hit the jackpot and have both. There seems to be a lot of disagreement about this even among well-informed doctors. I think it's that they don't want to say that one causes the other unless there's proof from good published studies.
If it is really "just" PHN, as your gp thinks, you get into some much better odds that it will eventually go away, so that's really something for you to hope for. Even if that's the case, the lower dose of gabapentin doesn't seem as logical as the neurologist's plan. I think they both sound pretty good, so you're lucky and the neurologist has more specialized training about the meds. You will probably end up trying a lot of different things, and the gp should not be offended if you try the neurologist's plan for now.
Adding: The eye pain led me a Graves opthamologist (Graves disease can settle in your eyes - thankfully it did not for me). From there he sent me to the neurologist for a migraine dx.
Min - the conference call advice really made me lol!!!
Jenn, I have a feeling tho this situation may come up in the future for me. All we can do I guess, is simply tell whichever doctor we are seeing at the time. "My neuro doesn't feel I could benefit from taking this medication". Or some such...I mean this is unfortunate. But in reality. I don't know how we can avoid it. I have a general practioner and a neurologist. Neurologist's don't treat depression or anxiety, so it's gonna happen. It was very awkward for me, but at the same time it's not our fault that it happens.They are professionals. I would think there should be a certain way it can be handled. Maybe a conference call.?? LOL