I can remember the start of this cycle. February 21 2008. The typical start time for me. I was officially diagnosed one month later. I had knee surgery that same month just before I was diagnosed. The day after the surgery my hits were all over the place. There was no rhyme or reason to them. They even started skipping days only to be followed by a day of 6-8 k8-10's.

Now it is 5 months removed from my usual cycle end time and they are still here and nearly as sporadic. I have just had my Verap upped to 480mg/day we'll wait to see if this helps in the next few days. 2-3 hits at work is getting hard to deal with as I have to be able to drive around campus. The night hits I can deal with using the O2, but the day slams have begun to take their toll.

My only break this cycle was with the Topamax. But that didn't go so well with the side effects. I still had all the symptoms of the hits, just no real pain. But like I said the side effects were way to much to handle.

I am a telecommunications tech at Texas Tech University. I am required to drive to jobs around campus. I had to park in a hidden place and do my dance for an hour before going back to work just yesterday. Luckily the boss was still on vacation. I have been told that I am not allowed to have O2 in my work van because it is a state vehicle. *shrug* I could keep it in my car, but that defeats the purpose of getting to it quickly, not to mention that if the hit is big enough I ain't driving anywhere.

I said all of that crap to ask this question I guess. Does anyone else deal with really sporadic hits, and how do you deal with them at work?

Hello Perediablo,
    Does your boss know what you are going through?  There is a great letter over on the OUCH website just for that purpose.  I made copies of it along with the intro page from this site and gave them to my boss and some co-workers.
    My hits have pretty much settled into all night time episodes.  When I used to get them during the day, I would just disapear for an hour or so.  Luckily, everyone understood and just let me be.
    Good Luck to Ya.  Hope ya get lots of pain free time coming.
                              JPC

Yes. I printed them out and handed them to my 2 bosses. One actually read it, the other didn't seem to care too much. He said he "skimmed it".

As far as disappearing, I can do that most times, but not as often as I need to. Mostly I just grit my teeth and work on as long as the kip isn't too high.

One of my coworkers actually read it and knew what clusters were before hand so that's a bonus I guess.

You said the topamax worked but the side effect were troublesome. Have you tried taking the topamax at night before bedtime. That's what I've done for a number of years (about 10) and I don't experience the side effects (guess I sleep them off or something). Others have done this with good success. Topamax has been my lifesaver.

don't know what to tell you about the O2 unless you can get "special dispensation" for an ADA condition (don't know if we've been put on that list but migraines are on it!). Might try carrying some Red Bull with you and chug it at the first sign of a headache - it might help. But if it were me I'd be trying for the O2 in the company truck under special provisions for medical handicapped or something.

Hugs BD

I get sporadic hits at work but have access to O2.

I'm with Barb on the ADA front.  It might be the only way to get the state to back off on the regulation.  I'd also check the paperwork out myself to see if he's just blowing smoke on that one.

You want to be careful mixing energy drinks and the Tauriene they contain with Verapamil.  Both are calcium channel blockers.  If you block too many calcium channels you can end up with heart rythm problems.  Not a good place to be.

Good luck...

-Dennis-

G'day Pere, and you've perfectly described what I call wild-cats. No rhyme or reason, no pre-planning, no guessing when or if the next one is going to happen or how bad it's going to be.

The only up-side I've found is that they rarely rate as severe but they're just so wearing!

I just wish I could offer you more.

B.

Yeah I took the topamax at bedtime. Still had the horrible side effects. Extreme weight loss, violent and unpredictable mood swings, suicidal crap, and my eyes still hurt. The internal pressure of my eyes is waaaay to high so says my optometrist. I'm going back in a couple weeks to see if it has gone down. Pick the nasty side effects of topamax, and I had em.

Yeah I'm trying to stay away from too many energy drinks while on the verap. I've heard of that.

Wild cats eh? Sounds very appropriate, very fitting. And yes they are very tiring. They are rarely ever anything above a k6, but they are so random and sudden they really wear on you. My night hits are the powerful ones. I can count on those being around the same time not like the day hits.