Sunday, October 12, 2014

Appointment Recap

Whew, just got back to College City after a whirlwind weekend at home. Last Thursday afternoon I went straight to the airport from class, got into Home City around 9pm and back to my parents' house around 11. On Friday, my mom and I went into Big City (about fifty miles from Home City) for my appointment with Dr. A. Quick review: I last saw him a year ago, which was my third or fourth appointment with him. We had tried a bunch of stuff for my neuropathy (hormones, steroids, physical therapy, wait-and-see...) and things had gotten marginally better but not enough for any significant quality-of-life improvement. So at the last appointment he prescribed capsaicin cream, which worked like a miracle almost immediately - I'd say within a week or two, I was noticing relief for the first time in two years. My pain was almost entirely gone for about six months, during which I ramped up my running to semi-excessive levels. Then my periods started getting wonky, and the pain started bothering me again. I put off making this appointment because I kept thinking that once I eased off the exercise, things would go back to normal. They started to, but not fast enough.

Anyway. I was SO NERVOUS for this appointment because I thought he would roll his eyes at me and basically say "you messed things up for yourself, deal with it." Or, maybe even worse, "the capsaicin was my last trick. This is as good as it gets."

But, he did not. He basically said, "I'm sorry you're still in pain. That is not okay. Let's fix it."

He ended up prescribing another medication that dulls the nerves (a topical version of a tricyclic antidepressant, if anyone is interested). I'll pick it up on Tuesday, and see what happens.

My other main questions for him were: 1) exercise, and 2) birth control. Like I said, the pain really spiked after a period of heavy running, and since then I've been really unsure of how much is okay for me to work out. Plus, my periods have been pretty erratic for the past six months or so, and my gynecologist keeps wanting to put me on the pill. Dr. A told me that birth control is actually the most common cause of this type of nerve pain, due to the huge suppression of testosterone in women with "inefficient" testosterone receptors. The cause for me was anorexia-induced amenorrhea, which essentially had the same hormonal effect as the pill. So whether it's overexercise or birth control, my body CANNOT handle hormonal fluctuations like that. Dr. A has been adamant about curbing the exercise before, but I guess I needed to hear it again.

Best part was, he predicted that if we keep the nerves turned off for long enough with medicine, then they will eventually turn off by themselves = no pain.

Other weird observation: Dr. A looked like he had lost about 30 pounds since the last time I saw him. Both my mom's and my jaws dropped when he came into the room. He wasn't overweight before, just kind of big and hulking, but now he's slim and trim. I swear, he looked like a different person. No, I was not triggered. But dying of curiosity about how and why he got so skinny.


  1. That is so great that he listened to you & is working with you to find a good pain management solution for you!
    I love hearing these stories about doctors, I am kind of cynical when it comes to doctors because in my lifetime I've had awful ones, especially dealing with eating disorders! I've finally found a team of amazing doctors that i've been seeing for years now. Such a great feeling that they listen to you and care about you!

    Also, I'm interested in this tricyclic anti depressant, I'm actually currently learning about these in school. If you're feeling comfortable I'd love to know the name of it and how it works for your pain! Keep me in the loop, I love learning new things : )

    Anyways, hope it works soon for you! Always great to see another post from you : )

    1. Hey Kay! I hear ya - I am sooooososososo cynical about doctors, because I've had some pretty terrible ones too. To be fair, I've had some really complex/rare medical conditions, but had sort of gotten used to feeling like I knew more about my health than anyone else, and couldn't really trust doctors to do their homework and look outside the box. And I have to admit that I have found a couple of gems of doctors in the last couple years, but it has taken a lot of searching and self-advocating and trial-and-error.

      Anyway, the TCAs (you may already know all this if you are in nursing school): they aren't really used for depression anymore because we have newer better drugs with fewer side effects (e.g. SSRIs), but for some reason they work to dull peripheral nerve endings. They get used a lot for diabetic neuropathy, phantom limb, stuff like that. I was on oral amitriptyline for a few months about 2 years ago, but never got to a high enough dose for any therapeutic effect due to all the side effects (dry eyes, tiredness, weight gain, foggy brain). The one Dr. A just prescribed is called doxepin, but in topical and not oral form. That way we can avoid all the systemic side effects and just get the nerve-dulling effects.

      Hope that makes sense! I haven't picked it up yet so can't say whether it does any good, but I will definitely keep you posted.

    2. I just was talking to someone who was singing the praises of doxepin! They were taking it for anxiety and obsessiveness, and they were taking it in oral form. Anyway, thought you might be interested in that!

    3. that is interesting! I've never heard of them used for obsessiveness! I have heard that they are more of a late-line agent for depression, if for whatever reason the newer drugs aren't effective or have side effects or whatever, and that if you can handle the dose of a tca they work pretty well. I think they are also used for insomnia - and I can tell you that the amitriptyline knocked me right out.

  2. I'm so happy to hear that Dr. A is still being awesome! Hope the new med works and you're back to being pain-free!