I’m seeing the doctor again tomorrow for another adjustment to my pain medications. The current ones (Topiramate, Imigran) are NOT working, and I’m on a waiting list – apparently a very long one, for intracranial pressure monitoring. Pain levels (intractable headaches) are far too high. Ideally they should be negligible, but since we don’t live in a perfect world, I’ll settle for “I’m not screaming two hours before I’m allowed to take the next dose of Gravol”.

I can handle pain that is below a 6/10 on my scale. My 6 is probably a non Spoonie’s [normal person’s] 8.

I take Imigran whenever I damned well please, even though technically you’re only supposed to use it a few times a month. Sometimes it works, and sometimes it doesn’t.  They can kiss my tukhus. But luckily the doctors know I’m taking that much, because they refill it without a fuss.

Here’s the pain scale I use, written by Allie, over at Hyperbole and a Half (reprinted here): http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

“1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.”

 

How this applies to me: 

Below a 6 is basically nothing to me. I don’t take meds, and I just do my thing: knitting, posting online in Amazon, etc: “Hey, I’m not wearing any pants. I didn’t know that about giraffes. I’m sorry your cat died; can we talk about something else?”

So, my 6: “Ow. Okay, my pain is super legit now.”

Is your 8: “I am experiencing a disturbing amount of pain. I might actually be dying. Please help.”

When I get to a 9 or higher (“I am actively being mauled by a bear.”), I lose the ability to talk, and just make vague sounds.

15 January 2012: I’m not leaving the office tomorrow without something, and mark my words – it will not be paracetamol or another migraine medication, because those won’t do beans.

16 January 2012: Idiot put me on Tegretol and insists on treating these as migraines. Refuses to explain why.

18 January 2012: Had to discontinue the Tegretol because it caused severe RLS. It didn’t do anything for the pain.

UPDATE! January 28, 2012

A different doctor at the practice finally relented, and, after an hour-long appointment of wrangling and discussion this past Thursday morning, put me on sustained-release morphine, plus instant-release Tramadol for breakthrough pain. Gravol for the nausea, and Diazepam so I have a better chance of getting some sleep (which also means DH gets a better chance of sleep).

[As I walk into the office on Thursday morning]: “I’m going to throw up. Where do I do it – the garbage bin or the sink?”

Update: 10 June 2012

I’m seeing the doctor on Monday to make her take me off the morphine. It’s making the headaches worse and making me have suicidal ideations. May try to replace it with Dosulepine, with a short-acting narcotic for pain relief.