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!
Wolfdreams.... 
If this Dr. has this kind of attitude I think I would look for a different one. It is hard enough being sick and in pain. You don’t need a Dr. with an attitude.
I thought your headaches were doing better since you stopped the florenif. I thought you stopped the shots before because they hurt so much and it was so miserable getting them. I don’t remember you thinking they helped you that much. I thought the pain got better because you had the breast reduction and getting all that weight removed. You have had so much done, it is hard to know what helped what. Wish your pcp wasn’t sick, do you know what is wrong? Hang in there.
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Let me put it in perspective for you…
A healthy person’s headache is usually about a 5 on the pain scale, which runs from 0 for no pain at all to 10 for excruciating, the worst pain you ever felt.
A migraine is usually a 10 – excruciating, plus you have sensitivity to light and sound in most cases, plus nausea in many cases.
Last fall, as best I can recall, when I went to see her the first time, I was having migraines 3 – 4 days a week that were a 10, with all of the above.
When I started lowering the methadone (which was helping keep my blood pressure down), the headache became a constant – there has been no time, other than when heavily hitting the oxycodone (another narcotic – short acting), when I have NOT had a headache of some level, plus the extra added pain of migraines on some days.
And every time I lowered the methadone further, the constant, non-stop headache has gotten worse, and the migraines became more frequent, until we got to the point in July where I had my “Ah Ha!” moment and figured out the florinef was contributing to the pain.
In the weeks leading up to the “Ah Ha!” moment, my headache – the constant pain – was getting worse on a daily basis, from a 5 to 6 to 7 to 8 to 9 to 10 to whatever is beyond a 10, which is supposed to be the top of the scale. And by late afternoon every single day it was reaching migraine level, with the added fun of every single tiniest noise being felt as increased pain, and the same with the slightest light.
And my BP was edging up, often going as high as 160/100.
When I was laying in bed, when I had the “Ah Ha!” moment, it felt like someone was driving nails into the back of my skull, literally, and like my head was going to explode, literally, and I was barely containing a scream, also literally. The only relief I could get was the once daily dose of short acting oxycodone – and when you’re at a jillion on the pain scale, that three hours of relief is no where near enough.
Within two days of stopping the florinef, the constant, non-stop headache was down to an 8, and the later in the day pain was still often at migraine level, but that was better.
Now I’ve been off the florinef for close to a month.
The constant, non-stop, wake up in the morning and it’s still there headache is about a 4 to 5, most of the time. But I’m still getting up to a 7, 8, or 9 some days. And still having migraines – which are now more a 9 plus the light/sound sensitivity, and instead of daily are more like 3 – 5 times a week.
It’s a huge improvement over what was possibly the worst pain I’ve ever felt (other than Rhiannon’s labor).
But it’s still a constant, nagging, headache!
The blood has been pounding in my head for months – I can hear it so loud sometimes I can barely hear anything else! In fact, it’s pounding right now – and my BP is not that high, I’m sure. It’s been running anywhere from 105/60 to 140/90 or so since I stopped the florinef and increased the BP meds.
The neuro is aiming for my BP to be below 120/80 all the time – and it was 138/? when she took it in her office. Given I was highly agitated at the time I’m surprised it wasn’t even higher than that!
BP is the key to most of this. And in possibly the only really intelligent thing my neuro said at the visit, “even 120/80 may be too high for me” personally.
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the absolutely worse thing for me in reading your blogs is that there is nothing I can do to help. I am so sorry you are going through all of this. it hurts my head to be thinking of the pain you’ve been in for so long. I can hardly imagine, since I’ve never had a migrane. Hang in there! those stupid docs will come around and eventually things will be (almost?) normal again. I have to think that!! It’s all I can do!!
btw, if you find anythink on headache clinics, let me know. Katie complains she has constant headaches, as well…
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Kelly, there is something you do to help all the time! You actually read my blog, and comment on it, and FB message me, and just that helps tremendously – just knowing you’re out there caring about me & loving me thru all this crap is a huge HUGE help –
I’ve been very isolated out here & dumping all my pain & aggravation on poor Rhiannon, with really only my mom & friend Moshe offering real, daily support &
encouragement until you found me & we re-connected. I have a few other real friends, and there’s Terra, but we have very little contact.
You have offered your friendship & love unconditionally – something very, very few people do, and you are helping me carry the burden of the illness that has destroyed my life, and I don’t think you know how much that means to me.
It means more than words can say. And brings tears to my eyes.
I will see what I can find about a headache clinic & am so sorry to hear Katie is also having headaches. Rhia gets a lot of them, too.
Love you, Kelly. Thank you.
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i guess we found each other at a good time to help each other! Love you too!
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