Sunday, March 29, 2009


Here's the thing: I'm not a neurologist. Not even close. Can't even fake this one.

This headache business is such a quandry. Here I am, seven weeks into a new prevention/treatment regimen and:

  1. not seeing any reduction in headache frequency
  2. having lots and lots of nasty side effects from the "prevention" meds
  3. flummoxed a good bit over 1 and 2
  4. the revised headache treatment meds are more effective BUT---cause more disability---easily a full day of being knocked out.
So here I am, two months out and I still don't know if we've got a viable plan, Stan. I do know that most of the medical community calls my prevention drug "Topamax" either "dopamax" or "stupimax" and it ain't for nothing. I'm sure my IQ has dropped 20 points; I'm so foggy headed, constantly drowsy, often confused. Sometimes I feel like I would be unsafe driving, other times not.

I'm a bit of a tinkerer so I decided to see if there would be some middle ground. My first question was whether the headaches might be treated by a less aggressive treatment approach---so I decided that I'd go with the typical migraneur routine of 1 Frova tablet at onset and only move up to the mega-death cocktail if the headache hadn't remitted within an hour. Fair enough. What I've found is that in most cases, since taking the Topamax daily my headaches seem to be more likely to respond to standard tripans and loss of productivity is relatively low (assuming we can manage the side effects of dopamax). Unfortunately, I've also found that as quietly as the headaches slip away, they do seem to slip right back.

So then there's the matter of the Topamax for prevention. I'm not sure I've seen much prevention and there's some encouragement as to whether its moderating the severity. Frankly, I'm not sure the cost-benefit analysis is working out in its favor. Its a bitch of a drug; sorry for the PG-13 language but there's just no other way to say it. Its awful and I hate it. It has totally screwed up my sense of taste, killed my appetite (no complaints about that, really), and made me a veritable zombie...this really can't persist. I *AM* taking this into my own hands. Standard migraine prophy dose is 100mg and some patients go up to 200 mg. For some reason my neuro took me up to 200 before waiting to see if 100 would work. I'm taking it back down to 100 to see if my life is better there. If its not, Rob and I are going to have a chat about what to do next.

Happy Birthday, Kelley
Today Kelley Shannon celebrates her 19th birthday. Can't believe it! Happy birthday, Kells! I hope you do something wonderfully fun that makes you smile!


Anonymous said...

You know you best so hopefully you can do some self regulation and find the best med fit for you and those dibilitating headaches.

LYFE Milo's Nonna

Don said...

The only things worse than having any sort of medical issue, is not being able to find a cause or a fix.

I hope you figure it out. My family has a history of migranes so I understand how awful they are.

KHM said...

Ain't it the truth! The irony here is that I was at my wit's end when I started this course of therapy, the headaches causing about 60% disability and now I'd put the headache-related disability lower but the medication disability is just about ridiculous is that? I'm sure there are other options...guillotine anyone?

Special K said...

Poor you. Did the botox help at all? I would be interested to hear about that experience. Did you feel like Joan Rivers? Good luck with the 100mgs...

KSM said...

Sorry it's late, but thank you very much!