I spoke with Dr Garza yesterday evening. He is absolutely certain that the extreme scalp, face and neck pain is not related to the Neurontin. He said that it must be a coincidence. What I heard him say is that he has not seen it in his practice and that it is not one of the side effects that were either found or reported by the drug company.
I understand and even appreciate his knowledge and experience. I am certainly not an expert on these drugs, medicine or even migraines. But I feel like after more than 5 years of living with this chronic pain I'm as close as anyone can be to being an expert on MY pain. I am 99.9% sure that this new pain is directly related to the Neurontin.
This past fall my local neuro doc had prescribed a cream that I can apply to the tender nerve points around my head. It was something she had developed along with a compound pharmacist that combined Neurontin and a numbing cream. After a few days of using it I noticed that I was having a lot more pain on those nerves that I was applying the cream to. Suddenly these nerves were screamingly painful and I had to assume it was either the numbing cream or the Neurontin but to make sure I decided to stop using it and when I did so the really bad pain returned to it's normal lower level of pain.
The pain I am feeling now is exactly like what I was experiencing last fall with the cream - exactly. And it started when I started taking oral Neurontin. I can't believe that this is a coincidence. How is it possible that the two times I've taken this drug I've had this reaction - however impossible my doc is convinced it is? I know my pain, and even when my migraines were at their very worst, literally every day for months, the nerve points on my head were never this painful, never.
I am disappointed that Dr Garza isn't willing to even consider that I might be right about this. I do believe him that he has never seen this in his years of prescribing this med and I get that the research hasn't reported this to be a side effect (though I don' t quite believe it is because it wasn't found - just can't trust the drug companies). But even if it wasn't found to be a side effect during their testing that doesn't necessarily mean I can't have that reaction.
I know I'm right.
He instead wants me to keep taking it at the pace that was prescribed. But I already can't drive because of other expected side effects and I just can't bear to keep taking two pills a day. I told him that I would keep taking it for a few more days and decide. What I didn't tell him is that I will only be taking 1 pill a day. I needed some time to gather myself and make a plan as I wasn't expecting him to insist it wasn't the medication. My body won't allow me to swallow that second pill, I tried. Maybe it was all in my head but I couldn't do it. I'll give it a couple days here and then propose that I come off it and see if that resolves the pain and if it does, we try something else. If it doesn't (which won't happen) then I'll go back on it and start again. That sounds reasonable right?
Have you ever had this kind of an experience where you knew you were right even though conventional wisdom and the medical community was sure you were wrong?
