So I saw my neurologist yesterday. It was interesting. I’ve never liked her. I like her even less now.
I was scheduled to just get an Occipital Nerve Block (ONB), which is injections into the back of the head and side of the neck with a local anesthetic and a type of cortisone called betamethasone. They do one side at a time – ie. I had to pick which side was the most painful for her to inject into it. The idea is that the cortisone will decrease inflammation and irritation around the nerves because the nerves there – even though they’re on the back of the head – can cause headaches all the way to the front of the head – mine are usually centered on my eyebrows.
My first priority was to talk to her about the florinef, my discovery of it as a primary factor in the migraines, how I came to figure it out, my BP readings from 3 weeks, and the changes I made to my meds without anyone telling me to – stopping the florinef, and taking both the BP medicine she prescribed but also another BP medicine that I used to be on, in my attempt at getting the headaches under control.
She followed along as I described the events, and was fine with me stopping the florinef and I guess happy I figured it out – she said it made sense. But she wasn’t happy that I was taking more BP medicine than was prescribed. However, she did say my BP was still running higher than it should be and is likely contributing to the damned headache – I’ve had one constantly, non-stop, since January!
I told her I wanted to increase the BP medicine she had prescribed, and she was fine with that and wrote the RX.
She wasn’t happy when I told her I knew florinef can cause things like an enlarged heart, which I think it has (she said to see my PCP, who is out sick & I told her that – but she didn’t bother to take a listen or anything), and that I was worried about the increased intercranial pressure having caused an aneurysm. I mentioned I’d been researching my meds online and had seen this listed, and she replied “Well! That’s why we don’t go online, now isn’t it?!” Then insisted it could not cause an aneurysm.
She also insisted she’d never heard of Lyrica or neurontin causing incontinence – she wanted to know why I take small doses of each (they are nearly the same thing) instead of a larger dose of one. It’s listed as a side effect – but no one told me that and that’s another thing I had to figure out on my own.
Power. It’s all about power. She’s the type of doctor who wants to be in control of her patient, and she did not like it at all that I was one who actually has a brain and knows how to use it.
My other doctors are not like this – they see me as a partner in figuring out how to get me healthy and welcome my suggestions and discoveries.
After she did the nerve block (intensely painful), she came back in and asked me again why I’d decided to up the BP medicine without talking to a doctor. I explained that I had just seen her, the nurse-practitioner at my rhuematologist’s office, and my PCP, and yet no one had figured out that the getting-worse-daily, non-stop, life-altering, my-head-is-gonna-explode, intense migraines were in fact being made much, much worse by the florinef, which has side effects listed as severe headaches, the increased intercranial pressure, etc. And that I was feeling a little “miffed” at my doctors.
She just couldn’t get it.
I felt like someone was driving nails into my skull for months and yet none of my docs figured it out. I had to figure it out myself. And she couldn’t understand why I’d be a little “miffed.” It baffled her.
Still having the headache, BTW, but it’s definitely much better since I stopped the florinef. I’ve even been able to turn the TV on and watch a little – hadn’t even turned it on for like nine months because it always triggered a migraine.
So, that’s how we left it – the first ONB is a test of sorts. It takes 3 – 5 days for the cortisone to have any effect. In the meantime, I hurt big time – my neck feels horrible and have had a headache/migraine all day. If I feel like it’s helped, then I go in to do the other side. And likely go in a week later and have the first side done again, up to four times a side. But she doesn’t think it will help.
I did have the ONB’s before, and I’m pretty sure they helped. But apparently, the longer you’ve been having headaches, the less likely they are to help. And I’ve been in a nearly continuous state of headache at some level for over a year, with frequent (ie. 3 – 4 times a week) migraines that increased to near daily migraines that don’t respond to much of anything.
We’ll see how it goes, I guess.
Maybe I’ll start looking for a headache clinic – apparently those exist in some places.
How did I learn that?
Online – that place she doesn’t want me to go!