Beta-blockers and Vitamin D

It's motion, I guess. I didn't get to see the article, but Dr. Specialist found mention of a combo treatment with depakote (which I'm already on) and beta-blockers, so I'm adding propranolol to my bouquet of medications. Another blood test scheduled to be taken--something about possibility that my levels are too low, and that that could be tied in.

As for things that don't go into my blood P.O., he's still angling for ketamine or propofol, but he needs to convince the companies to pony up, and then UCLA needs to come round. Sounds like fun, huh? A backup plan involves borrowing Cedars Sinai resources, in case they're more accomodating than "home."

He's also presenting my noggin to the internal headache group. Dunno what's taken him so long.

I whined to him about the ER--the last two visits were nearly pointless...medication doled out in dribs and drabs, even though the last ER doctor managed to get in touch with the specialist while I was there. 8 hours, maybe 2 points reduction in pain.

I think it made him angry. They've gotten to the point where he's taking affront--when they say no one gets 6mg of dilaudid ever, and I say that's what I got last time, and they tell him they can't find my records...well, there's this nifty web interface he showed me. I can just about find my records. And that's before you get to the bit where one of his patients is in pain. Hmmph.

COBRA better not break my budget during the job gap. Things are going to be hard enough.

How Special is your K?

I see my GP every 4 weeks and he handles my MS Contin. I see the migraine specialist every 3-5 weeks, and he handles, well, all the other migraine drugs. With those frequent appointments it's easy to lose sight of a big plan, but I finally remembered to ask the specialist where exactly he was headed.

Ketamine. Special K to the crazy kids. Horse tranqs. In some scenarios it's used to induce comas, but I'm rooting for that not being me. He wants to use that to break the cycle of headaches, and then find the right prophylactics, since we're currently rooting around blind.

Problem is, it's not an established procedure, and I'm not even sure ketamine's in use at UCLA Westwood. So he's wrangling with some Boston folks on my behalf.

It feels very slow. The pain's building up on a weekly cycle. I need to tough it out so that's not Thursday/Friday, but Saturday/Sunday. To make work easier. I mean, I'm here. I just want it to be easier.

"You have chosen not to be admitted; therefore you should resume your outpatient medications. Good luck with your migraine and merry christmas."

I didn't have the energy to be angry. This was the third ER visit well within a week, and no one seemed willing to do what usually works for me--giving me 8-10mg of IV dilaudid in reasonably short order (less than an hour) and sending me home to sleep. They spaced the dilaudid out, or wouldn't give that much, or just something.

So a 9 headache would go down to a 7, I'd go home, go to sleep, and wake up with an 8.

I didn't want to spend all of Christmas eve in the ER, but I was trying to avoid going back to work on Boxing Day looking like the recently dead.

So much for that plan. They offered to admit me and give me 2mg every 8 hours. And then they treated it like a bargaining table. And brought DHE infusions up again, despite them never having worked. I don't get it.

I have no idea what to do next. I've sent an email to my GP (out of office until the 3rd) asking for a referral outside of UCLA, to Cedars-Sinai, and left a voice message with my migraine specialist asking him why all the ER stuff went down how it did--he was paged for two of the visits, after all.

If the meds I used to get will kill me, someone needs to tell me. If this level of pain is something I'm supposed to keep functioning with, someone needs to look me in the eyes and say that to me.

Why are you looking at me?

My GP is at his wits' ends, and my specialist isn't returning my calls.

So where does that leave me? Other than with a migraine that's weathered four trips to the ER, I mean.

Sansert: my specialist told me I'd have to get it in Canada because the company didn't find it profitable to distribute in the US. It's an ergot prophylactic. My GP says it's not for sale in the US because of side effects. Oops.

Propofol: this is an abortive, a really big gun. It's a general anesthetic. Looks sadly appealing to me right now. But it's not something I can swan into the ER and get.

Migranal: something my GP mentioned in passing. Don't know much about it.

Nasal lidocaine: injecting lidocaine up my nose. Sure. Why not?

Botox: maybe the second time will be the charm.

Craniosacral massage: I have two hookups for this. I should use at least one.

And a friend's father suggested that someone with cranial-facial anatomy knowledge - like a maxillo-facial surgeon would need to inject 1 - 2 cc's of PURE drinking ethyl alcohol into each (one on the left, one on the right) of your Gassarian ganglions. One access is through the posterior palatine foramen (in your mouth).

I can't believe I have to have ideas.

In which reprieve, however temporary, is well-received

Went to the ER last night. Yes, you're counting right--I just got out of the selfsame hospital on Sunday. But Tuesday and Wednesday mornings I had woken up with a wicked headache--woken up by the pain. That's extremely rare for me. All told, I think I had less than two hours awake over the 36 hours in which the pain was less than a 5 out of 10.

So much is variable. The dilaudid hit me like a ton of bricks this time, but they didn't put me on physiological monitoring.

My migraine specialist said I shouldn't let the headaches blossom as long as the last time, but he also proved to be unreachable all day, so in order to nip the pain...well, it was way past budding time...I went to the ER. His plan was to avoid the ER with more DHE, but I don't think it works.

What they see as progress is me lying down. That always helps. But I can't live in my bed. Just this Sunday after 36 hours of DHE flushing I went home--and had my next migraine maybe 5 hours later. Not success in my book--I can probably achieve that by staying in bed all weekend without the needles.

Get to us earlier!

Easy for you to say, Mr. Migraine Specialist Man. When I go to the ER after four days of the same migraine, I feel like I'm folding early. That's what I did this past Friday, but instead of decreasing in intensity (either much or little) it decreased and then spiked.

Which meant they transferred me from that ER to a hospital where the specialist has admitting privileges and I got the DHE flush again. Tiresome, boring, cold, hot, just...not a fun way to spend your weekend.

Does it work? Hard to say. Lying down for two days has its own minimising effect on my migraines. I was discharged at about noon, and got my next migraine by six. But it was small and mostly responded to Maxalt.

Mostly.

The upshot of the visit:
a) He wants me to ping him (how? he's so very unavailable) before the ER to see if we can do the DHE as outpatient before dilaudid, etc come into the picture
b) Namenda again
c) Increase Depakote to 1750mg/day

We shall see. My fingers are crossed Namenda-wise, and I'm back on the Mg and the riboflavin, just to see how things go.

Syncope is not uncommon with migraines

Oh, yay?

It means paying much more attention to how I get up. I can't even begin to think about how it will affect my desired physical activity. I just can't.

I don't know how much changed as a result of today's visit with the migraine specialist.

My Depakote is to increase, and he wants me to take Celebrex with my triptans, right away, and see if that makes a difference. He's considering a second admission, this time with more DHE, and aggressive Namenda right afterwards.

Oh, and more steroids.

The most palpable (for non-literal interpretations of the word) change is his insistence that ER doctors page him if they disagree with his protocol, certainly before trying to argue with me. Much appreciated, let me tell you. He knows I have to be given all the meds together, up front, instead of trying a bit and trying another bit and ending up giving me more in the end.

Let's just hope his communication skills are good.

Follow up in three months.