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        Cluster Headache Help and Support >> Cluster Headache Specific >> Going through a really tough time
        
(Message started by: BaseballCoach on Dec 18^th, 2007, 1:35pm)

Title: Going through a really tough time
Post by BaseballCoach on Dec 18^th, 2007, 1:35pm

Ok, like i've poste earlier...I just started "hard" on meds last week....it seems my headaches have gotten worse, but I know i just imagine that....Wow, They are so bad...I woke up last night...and it was like i was dreaming someone had ripped my right eyeball out of my head...and after i woke up, i still wasn't sure if someone had done that or not...I finally realized it was a CH.....It took 20 min for the Trex to work!

Come to school today....2nd class...one starts...I shoot up....20 min. go by...the pain is unbearable....i can't take it anymore....i have to get an aide to come into my class...i do the unthinkable and go out and take a 2nd trex shot....i know this probably did more harm than good but it finally went away....

I'm tired of this crap...I'm up to only 80 mg verap now...i'm ready for the 240 or whatever you guys say works...i'll take the lith, i don't care, i just want relief...

Title: Re: Going through a really tough time
Post by BC_Battler on Dec 18^th, 2007, 2:19pm

Hey Coach;

So sorry to hear you are going through a tough time. I'm also struggling this month, and have been for quite a while so I can relate. I sincerely wish you a break from the pain.

I am a professional speaker/trainer and spend my days in front of large groups of people, so I know how it feels to get smacked by the Beast while trying to string together coherent sentences (while all eyes are on you). No doubt, it sucks. But know you'll get through it. Just when I think I can't take it anymore something happens and offers me some kind of relief.

Stay strong, Coach. So sorry you're having a tough time. I'll send the positive vibes your way. Cheers -

Title: Re: Going through a really tough time
Post by brewcrew on Dec 18^th, 2007, 2:39pm

Almost sounds like your doc is being over cautious on the ramp up of the verapamil. Every time I've gone back on it my neuro had me just start taking the recommended dosage (240mg 2x per day = 480mg per day).

You might want to give your doc's office a call and prepare to be a little more insistent.

Title: Re: Going through a really tough time
Post by seasonalboomer on Dec 18^th, 2007, 2:41pm

Hey coach, hang in there buddy. The thing about cluster pain is that it's not like someone is going to minimize your experience by saying, "hey, it could be worse." It almost can't be worse.

We've all got those kinds of stories. I was a hockey referee for many years. If I was in cycle I had about a 1 in 3 chance that I would ramp up to a cluster before the game was over. Talk about wanting to not call anything! The whistle, which alone had its own piercing quality, was heightened by CH. Not too many players argued a call with the look I would give them....

Hang in there.

Scott

Title: Re: Going through a really tough time
Post by vietvet2tours on Dec 18^th, 2007, 3:26pm

What grade do you teach?

Potter

Title: Re: Going through a really tough time
Post by BaseballCoach on Dec 18^th, 2007, 3:41pm

jr. high...might be part of the problem eh? lol. I'm going back to doc friday...hopefully bp is up and he can up verap...i have to do something....

Title: Re: Going through a really tough time
Post by vietvet2tours on Dec 18^th, 2007, 3:49pm

How bout having your tank in the room?

Potter

Title: Re: Going through a really tough time
Post by nani on Dec 18^th, 2007, 3:56pm

Hi Coach. Having an O2 tank in your office or the classroom should be OK. Explain what happens during an attack to the kids, and tell them you are fully aware of what's going on around you, LOL. You can't let middle schoolers think they're not being watched. ;)

Keep some energy drinks (RedBull, Rockstar, etc) on hand, also. They work quite often for many of us.

You can get taurine supplements over the counter at herb and natural food stores. A few of us have had some benefit from it as a prevent. I take 1500 mgs a day.

Finally, if you haven't read about melatonin for night time hits, do so. It helps many.
Hang in there.

pf wishes, nani

Title: Re: Going through a really tough time
Post by BaseballCoach on Dec 18^th, 2007, 4:04pm

Thanks for advice....I did get a tank of O2 about a year ago....Tried it, but not sure if it worked...never really combined it with the trex, but didn't think I had too...Usually I can go take the shot, and I'm ok within 5-10 minutes....Today was an exception and i'm sure could happen again.....I use to drink energy drinks like crazy but never for CH's....I always thought maybe that's why i was getting the stupid things....When i first went to the neuro 5 years ago, he said stay away from the caffeine....GET OFF the caffeine....I will have to try that....I'm really tempted to revisit the O2 and see if I didn't give it a fair enough chance the first time.

Title: Re: Going through a really tough time
Post by Samiam on Dec 18^th, 2007, 4:09pm

Get the O2. It's taken me years before I would do this because of being embarrased. Well screw being embarrased I will use the O2 anywhere. Also ask about steroids. Sometimes that will help you long enough so that you can get the meds up high enough to work.

Know we are there for you and all have felt that pain. Here's wishing you pain free days and nights.

Sami

Title: Re: Going through a really tough time
Post by BaseballCoach on Dec 18^th, 2007, 4:17pm

Just tapered off prednisone....started 3, then 2, then 1....seems like i'm on alot of this stuff...LOL....and actually headaches weren't bad while on steroids, maybe just meds aren't strong enough?? How long can I stay on streroids?

Title: Re: Going through a really tough time
Post by vietvet2tours on Dec 18^th, 2007, 4:32pm

on 12/18/07 at 16:17:20, BaseballCoach wrote:

I would think as a coach you would know the answer. Get a tank.

Potter

Title: Re: Going through a really tough time
Post by Guiseppi on Dec 18^th, 2007, 5:15pm

They don't like you on the steroids much more then 2 weeks as they wreak havoc with the body if you take them long term.

For the oxygen to work, HOW you use it is critical. You have to make sure your little lungys are getting only 100% 02, no outside air, no rebreathed air.

A high flow regulator, a Non ReBreather or Cluster mask, and you MUST START at the first twinge. I can abort in as little as 6 minutes that way.

If ramping up the verapamil isnn't an option consider lithium. I'm a peace officer so very limited as to what i can take and still work. Lithium at 1200 mg a day blocks about 80-90% of my hits and i can still work with no noticeable effects on me. Certainly worth considering.

(Sheesh jr. high schoolers.........makes my job look like a cake walk!!!!! ;;D)

Guiseppi

Title: Re: Going through a really tough time
Post by BaseballCoach on Dec 18^th, 2007, 11:21pm

Guess they didn't teach us in Kineseology class about how long a chronic CH sufferer might take prednisone....or if they did, i was out with a CH that day, lol...??? You must be speaking about anabolic steroids, in which I also have never dealt with, not a big problem at our school.

I think I will try to get the doc to vamp up the verap, and prescrib the O2 again. Maybe I didn't do something right last time. I'm about to be off for 2 weeks so maybe my body will have time to adjust to the verap and I can learn to use the O2. From what I've learned on here, it seems to be the best treatment? Do most use it along with the imitrex?

Title: Re: Going through a really tough time
Post by sandie99 on Dec 19^th, 2007, 5:21am

I'm so sorry that you're having a rough time now... [smiley=hug.gif]

I believe that it's ok to ask your doc to up your verap - I'm short and even I took 300mg twice day back when I was taking it. :)

The last time I took pred taper I was little manic... ;;D They were "happy pills" for me. ;;D Sure, I slept just 5 hours and the rest of the time I was over joyful and bit hyper. ;;D

So, aguess it's only natural that I use just energy drinks and caffeine tabs now when I get hit. ;)

Lots of PF days your way,
Sanna

Title: Re: Going through a really tough time
Post by BarbaraD on Dec 19^th, 2007, 8:10am

Coach,

Be sure the O2 has a regulator that goes to 15 liters per minute (anything under that is useless) and a non-rebreather mask. Hit the O2 at the FIRST sign of a HA.

I'd down a can of Red Bull right before I hit the O2 if I were you. Together the two might abort the HA and you could skip the trex. (It's something to try).

Don't think anyone answered your question about taking trex with O2 -- Yes it's alright, but give the O2 a chance FIRST - you might not need the trex.

I can't believe your doc told you to get off coffee... it's a vaso-constrictor. Most of us hit the coffee pot at the first sign of a shadow (or the Red Bull - whichever is handy).

And get some Melatonin and start taking that at night (12-15mg) Takes a while to get in your system, but for a lot of us it stops the night hits and gives you a chance to 'rest', so you can handle the day hits.

Joe gave you some good advice on the lithium and verap. Talk to your doc about that for a prevent. One thing we've all found here is that you have to take "control" of your treatment cause most docs don't know as much as we do about CH (they just don't have the time to do the research, so print some off and take to them).

Hugs BD

Title: Re: Going through a really tough time
Post by outofcommission on Jan 15^th, 2008, 7:53pm

hey coach
can't give you much advice on meds. are you episodic or chronic. it seems that on my last cycle i was drinking a gallon of coffee a day and all kinds of ibuprofen and asprin. at that time my attacks were frequent, long lasting, extremely painful.
man you would think the the brain would just shut off the pain but it doesn't.
anyway i stopped every thing cold turkey and turned to ice water. a week later my cycle stopped. from reading other posts i don't recommend quiting your meds cold turkey but maybe you could ask your doctor about it. maybe your cycle is coming to an end. just wishful thinking.