Hoo boy, what a couple weeks it's been! Cycle started just after Christmas, mild hits every 3 days, easy to dispatch with some caffeine. It's been nearly 3 years since last cycle, so I was in a bit of denial that it was really happening again. So, after a couple weeks, I decide it's time to make a doc appt. 2 days before the appt I start getting hit HARD a couple times per day, again treating with coffee and energy drinks. For the first time, I overdid the caffeine and wound up in the ER with palpitations, hyperventilation, stomach bloating/nausea, etc. That was all I needed to have happen, so I stopped the caffeine.

Next day, I go to my regular doc appt. My GP seems to have done his homework since I saw him last about clusters, because immediately, verapamil and O2 were mentioned. I mentioned a prednisone taper just to kill the pain initially until I could get the O2 delivered and to give the verap time to kick in. Doc agreed, and I was on my merry way with prescriptions in hand. Mind you, I hadn't been hit since my visit to the ER the day before.

OK, so I get my scripts filled and start on the pred and verap that night (this being last Thursday). So far so good. Friday evening I'm at work, take my meds with my dinner break around 8:00 pm. At 8:30, I start tensing up all over, my balance gets thrown off to the point I'm nearly falling out of my chair, I'm shaking all over, having a tough time breathing, can't concentrate, just a general rough time of it. I work in tech support over the phone, and my employer is very strict about not logging off of the phone outside of scheduled breaks, and so I stick it out as long as I can, though I'm not really doing much good to customers. I eep putting my calls on hold while I catch my breath and figure out what I'm going to say next. Finally around midnight (I work 5:00-1:30), I tell my sup that I'm logging off and going home. I had to have Dave pick me up, and I was off to the ER again.

So at the ER, they take me right away since I thought it was a reaction to the medication. As soon as they saw it wasn't an allergic reaction, the care ground to nearly a halt. They came in about 20 minutes later and gave me an ativan, then another 30 mins later told me to go home and call my doctor. Now, I understand people go to ERs in drug-seeking behavior, but that isn't me. Heck, if I wanted any kind of sedative, I have a big bottle of Xanax here at home, I don't need to hit the ER.

Anyway, I call my doc the next day, who recommends I just stop the meds altogether. I had only been on both the pred and the verap for 2 days, so stopping was no big deal. I'm still struggling with some anxiety attacks, but dealing ok, and all my body wants to do is sleep. I finally got my O2 delivered yesterday... wow, they delivered TEN e-tanks! Then I check the rest of the supplies: The regulator is for an M tank, there is no valve wrench for the e-tank, and the masks are standard masks, NOT nonrebreather and no reservoir!

So today I'm off, waiting for the O2 company to bring me the correct regulator and wrench, hoping they have non-rebreather masks. I'm also getting FMLA forms filled out for missing a few work shifts and to get my company to understand there may be times I can't avoid being late or leaving early to hit my O2. And to top everything else off, I've been going thru all of this and I have only been hit ONCE very mildly since my first ER trip a week ago! I have to wonder if the short pred dose somehow broke my cycle, or if it's just waiting to ramp back up again.

This beast guy is an odd one.

Anyhoo, it's good to vent!  PFDAN to all!

Joe

From one Joe to another....that sucks! :'(

Hopefully you're done with the cycle. If not....and I hope there is no if not.....you might want to talk to the doc about lithium as your prevent. Been working wonders for me as a prevent. Good luck with the 02 work, still my front line and most effective abort!

Joe

Dude, what a story.  I hope you're cycle is done as well.

BTW, your GP knows more about clusters than some neurologists.  Hats off to he/she :)

Why don't you have o2 in reserve?

        Potter

Because it expired?

PittsburghJoe wrote on Feb 3^rd, 2010 at 11:46am:

So today I'm off, waiting for the O2 company to bring me the correct regulator and wrench, hoping they have non-rebreather masks.......

If I were you, I'd be starting to look elsewhere already for the non rebreather since from what I've seen the O2 companies don't usually have them. Plus you'll probably want a high LPM regulator, right? O2 company ain't likely gonna cough one of those up either unfortunately.

Marc wrote on Feb 3^rd, 2010 at 1:14pm:

Because it expired?

You forgot your wink ;)

Hi Joe.  Good to have you stopping in again. 

It would seem likely that a company with guys that deliver oxgyen all day might know the type of tank fitting each regulator.  Best never to assume, I guess.

But what I wanted to ask was, how much verap did you begin taking?  Starting low to gradual increases is safer, don't know if that might have been a factor.

Also you might get a note from your doctor explaining your condition to your employer.  Helps to have this stuff on record.

Quote:

Why don't you have o2 in reserve?

I had some in the basement until I lost my job last year, and my insurance along with it. Sent it all back, since I hadn't been hit in over a year and a half by then. New job, new insurance, finally got my O2 back. And they showed up yesterday with TEN e-tanks! That's still pretty amazing to me.


Quote:

If I were you, I'd be starting to look elsewhere already for the non rebreather since from what I've seen the O2 companies don't usually have them. Plus you'll probably want a high LPM regulator, right? O2 company ain't likely gonna cough one of those up either unfortunately.

15 LPM usually does it for me, and that's what they gave me today. They are supposed to be shipping a good non-rebreather, but I ordered a handy dandy new mask through the CH.com store today!


Quote:

But what I wanted to ask was, how much verap did you begin taking?  Starting low to gradual increases is safer, don't know if that might have been a factor.

My GP always gives me the SR verap, started me off at 240 mg once a day. I know the regular form is supposed to work better, but I took what he gave me. Dunno if it was the verap or the pred that did me in, but something really messed with my body!

One good thing that seems to have happened here is I've pretty much quit smoking. Gone from a pack a day to about half a cigarette a day, a puff here and a puff there, just to take the edge off when I'm really wanting it. Ive had three drags today, tomorrow there will be none.

I have to call the doc back tomorrow because he wants me to follow up, and I still have some concerns with the anxiety thing. I just get times throughout the day where it's tough to breathe and my whole body tenses up. Hoping that will end soon. And my partner is on me to talk with the doc about sleep apnea. Even I notice it sometimes. I'll be drifting off to sleep and jolt awake because I've stopped breathing. I need to get that checked out. All this on top of likely moving in a month or so and starting a new job, finding a new place to live, etc.

To paraphrase the Chinese proverb, I am living in interesting times.

Man with all that going on you are living in some REALLY interesting times!  :o

Glad to hear though that you got the 15 LPM type regulator that has worked for you before, and that you have some good nonrebreather action on the way!  [smiley=thumbsup.gif] :)

Lets hope this episode of yours is just BUSTED. If it turns out not to be, the clusterbusters.com approach of RC seeds or stronger substances strikes me as something you could look at (if you haven't already), especially since you're not on any drugs that would interfere with it.

i bet it was the prednisone that made u go all wacky at work. how many mg were u taking for those 2 days? i use prednisone sometimes at the beginning of attacks, but i felt so crappy the last time i used it i think i am gonna just ride it out next time and use the oxygen.

I would bet on the verap causing the side effects. A steroid regiman is usually all good at the start of a cycle.

koctail, I think it was the pred too. I was prescribed a 9-day taper: 60mg for 3 days, 40 mg for 3 days, 20 mg for 3 days then done. The big freakout happened on day 2, about an hour after my dose. I havent taken another dose since then. I know the steroid can mimic adrenaline, I think it was more than my body was prepared to handle. Still feeling some of the same effects after 5 days, but it's getting slowly better.

Whattup Joe.

Sorry your getting slammed again.

Hope you are well otherwise.

Ex2