Friday, April 22, 2011

I Know I'm Right

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?


  1. My best advice to you is GO WITH YOUR GUT! Only you know your body and it sounds like you've figured out that this drug isn't for you. I can absolutely relate to what you're going through. Last fall I was put on Gabapentin to control my nerve pain, but a day into taking it I could NOT stop crying and I felt so depressed that it scared me. I truly felt like a different person. When I reported this to my doctor, he said he'd never heard of this side effect (although reports are all over the internet) and his response made me feel disappointed, hurt, and frustrated. In the end, I knew that this medicine was a poison for my body. Do what you feel is right for you and trust yourself...I'm sorry you have to go through this and I hope you find something that helps VERY soon
    ~Maya @

  2. Hi Migrainista, That is an awful position to be in!
    In the end, you wear the consequences of decisions about your treatments, no matter who makes them. All you can do is weigh up all the factors and then make a decision for yourself.

    Perhaps tell your specialist that you want to check if you are having an idiosyncratic reaction to the medication, and could he give you some advice on how best to manage while you are doing that.

    Hope you find the best way through it that you can!

  3. Wow, Maya that's awful. I actually got an entire sheet of paper specifically warning about depression and thoughts of suicide as a side effect of this drug. I'm so sorry you had to go through that, and without a doc who believes you.
    Joy, that's a good idea.

  4. I had a similar experience with melantonin. I got the awfullest tendonitis with it. No information anywhere that it could cause tendonitis. Doctors said no it couldn't do that but I figured it could, so I withdrew the med and rechallenged with it after I knew it was out of my system. Symptoms returned. Now off my list. Doctors just don't know everything.

  5. Agree with your first commentor...GO WITH YOUR GUT! I have stopped tons of meds on my own because I KNEW my body & that they were making me feel worse. And as I mentioned before, that class of drugs was one of them!

  6. Hi. I found your blog via Winny's.

    I haven't blog commented anywhere in weeks (due to the fact that I've had a migraine for 3 weeks and 5 days now) but I saw your comment on Winny's infertility awareness post and when I clicked over and saw your post I felt compelled to comment.

    Unfortunately, many (if not most) doctors have this sort of mentality that if they haven't personally seen side effects linked to a medication, then it cannot exist and/or if they don't see it as a reported side effect by the pharmaceutical company, then it cannot exist. Big sigh.

    You know your body and I agree with the notion of going with your gut. I don't mean to suggest that people should randomly go on and off medications without their doctor's knowledge. I do believe that listening to one's body is important. So how does one handle a situation like you described... where you told your doctor your suspicions about the drug causing the side effects and the doctor dismisses it?

    In my case, I start looking for a new doctor when one insists I take a drug that I believe is causing side effects. Just because your doctor isn't familiar with this as a potential side effect does not necessarily mean that there is no such thing.

    I take a low dose of this medication myself. When I titrated up to a higher dose, I had serious side effects. Driving became out of the question. It was scary to me. Everyone is different and what works for one person does not work for another. For me, lowering the dose significantly has helped immensely.

    Switching doctors can be an arduous, difficult process. I do not mention doctor switches lightly.

    My concern is that when you have reached the point where you are taking an amount of medication that differs from what your doctor has prescribed because your reports of side effects are not believed/acted upon, the bond of trust has been broken with that doctor.

    When I reach the point where I feel I can't be 100% honest with a health care provider, I move on because I don't feel comfortable with the doctor-patient relationship once the trust has been broken like that.

    What you've described is not at all uncommon. Some of the best doctors I know (i.e. "best" in other ways) get so hung up on what they have or haven't seen with their own eyes in their practice and what the pharmaceutical companies have reported (which certainly has the potential not to be full disclosure!) and I can work with a doctor with these hangups only so long as they do not attempt to intimidate or guilt me into taking the drug as initially prescribed anyway.

    They can disagree with my suspicions about side effects (wholeheartedly!) all they want - so long as they don't insist that I keep taking it at the dose that is causing me side effects.

    Once a doctor tries to bully me into taking a med/dose that I am not comfortable with, I start looking elsewhere for healthcare. I need to be able to be totally honest with my doctor about what dose I'm taking and what it's doing.

    Otherwise, I can't have the sort of doctor-patient relationship that I believe I need to have: open and honest, with the doctor willing to listen to me and modify the treatment plan if I see the need. After all, it's my body.

    Good luck!