Brief overview of my husbands journey last two mths with these new ch's. Started end of May, had them for three weeks. Been on 50 mg topamax, 480 mg. verapamil - started meds about week after ch's started.  Took about two weeks for meds to kick in and they went away except for the constant "shadow" during the day.  Since wasn't having the two bad headaches at nite but constant one during day,  Dr. changed meds to see if would help -  topamax to 75 mg for one week, kept the 480 verapamil. Then last week went up to 100 mg. topamax, down to 240 mg. verapamil.  Last nite he had a CH!!!  Should I wait couple more days to see if he starts having more or go ahead and call the Dr?  He is getting sooooo stressed out, don't know what to do to help him!

Unfortunately the only way to know if the cycle is over is to begin to taper down off the meds.  If the CH attacks return, the cycle isn't over yet.  I know how dissapointing it is when you think you're past it but you aren't.

Keep working with your Dr on the med changes and keep listening to your gut.  Thanks for being there for my cluster brother.   [smiley=hug.gif]

-Dennis-

So, if he has another one tonight, we know he's not through with cycle & I should call Dr. so he can start back on med. dosage where he was before?

That would be my advice.  Although I probably would't wait to call the Doctor.  

Often times once you are working with a Dr med changes like this can be done over the phone.  I'd place the call today and ask for advice on what to do tomorrow in the event he gets hit tonight.

Good luck and let us know how you make out.

-Dennis-

Thank you so much for the reply.  I just called and left the Dr. a message.  Appreciate being able to talk to someone about this and read all the info. on this site.  It has really helped us cope!

Quote:

Appreciate being able to talk to someone about this and read all the info. on this site.  It has really helped us cope!

I stick around for the witty bantor...but of course your right.
Consider over the counter melatonin for the nighttime hits. 3 to 9 mg daily. It's a trigger for me, but it helps many with getting through the night.
all the best
thebb :)

I take 100mg of Topamax (I'm chronic) as a prevent (I take the whole dose at night before bed) and 12-15mg of melatonin and "usually" get thru the night without a hit. Shadows in the mornings I treat with strong coffee, Red Bull and O2.

O2 is my first line of defense (usually) against a hit. 25 liters with my new mask (be sure you have a NON-rebreather mask). Check the O2 info on the left.

Hugs BD

I am, AGAIN, in agreement with thebb and barbara, melatonin has really, REALLY worked well for me in my curent cycle. i have cycled EVERY spring for 23 years, only missed one spring, and that was last year, ahh,,, what a wonderful spring that was,,,,anyway, this was my first time trying melatonin, thanks to this wonderful, blessed site, and after my second day , i slept through the night and have ever since. but,,, as we all know, what works for one, doesnt always work for all. after nine hellish weeks, i finally hit the prednisone. As usual it has stopped my cycle in its tracks. i have 4 more days of prednisone left. But to be honest, i just dont "feel" like the cycle is over. its hard to explain, but i always seem to just, "know" when its over and right now it doesnt feel that way. oh well. time will tell, hope your husband finds some ease,, ! melatonin is easily available over the counter at most stores, ant its failrly cheap. Good luck and God bless,,,,tuck

Dr. called back and said to stay on the 100 mg top. and get back to the 480 mg verapamil, so he did last nite.  No ch last nite, but his head just hurts.  Seems like the better he sleeps at nite, the worse the "shadow" is during the day?  Should I call the Dr. to make sure its ok w/her to take the melatonin?

Letting his Dr know about the Melatonin is a good idea.  It is standard in CH treatment so I wouldn't expect any resistance.

I'm glad to hear he slept and I know how aggrivating shadows can be.  

Is he using Oxygen therapy?  If not, why not?  100% Oxygen at a flow rate of at least 12-15lpm is a great abortive (10-15 minutes) and can help with shadows too.

-Dennis-

What Dennis said. :-X

Yes, he uses o2 for the bad headaches he gets (only gets them after 6 pm), but he's never used it during the day for the "shadows".  Should he be?

02 knocks out the shadow as well. Never relax ever thats when it will hit.
thebb

Thanks for all the info!  I do have another question - when you talk about red bull, coffee, etc., do you not feel worse after you take that because you are coming down from the caffeine?  I know we had asked the neuro. about him taking ergotamine - we know someone w/ch's and thats what he takes, but she didn't want my husband to take that because of all the caffeine, said would be rebound headaches from it.
Also, the sinus pressure seems to be really bad sometimes.  How do you know if you need something for normal sinus pressure or its just the ch's?

I never felt worse after "coming down" and I never got rebounds from energy drinks or caffeine.

Oliver

We're all different and yes, caffeine can cause rebounds.  I've been tired after drinking energy drinks but never experienced rebound headaches myself.

You do need to be careful with energy drinks and verapamil.  Verapamil is a calcium channel blocker.  So is the Taurine in energy drinks.  It is ok to have one or two but don't overuse them.  Block too many calcium channels and you get heart rythm problem.

-Dennis-