Hello everyone, First I want to say THANK YOU to everyone on here and whoever started the site. I only just joined but have visited during past episodes. I have learned so much.

A little about me: Officially diagnosed in 2004 but was suffering for several years before that. My mom is also a CH sufferer. I am episodic and can go for years without a cycle. I also am also diagnosed with common migraines and stress headaches.....My neuro doc is great and each type of head pain is very distinctive.  In 2004 I had a very bad episode and wound up in the ER for treatment. Was prescribed a 5 day 50mg dose of prednisone and that seemed to work. Also was the first time I saw a neuro doc. In 2006 another cycle started and I again wound up in the ER after a terrible #10. ER doc prescribed another 5 day dose of prednisone which halted the beast for 5 days, on day 6 they returned with shocking ferocity and persisted at twice a day pain level 8-9 lasting about 1hr. Saw my neuro doc and he prescribed another round of prednisone this time 5days at 50mgs and a 5day taper. This kicked the cycle. Now in a new cycle that started on New Years day 2009. Was in the ER again and they scripted me a 10day dose of prednisone that worked for 2days and then the beast returned once again. Now on 240mg of Verapamil but still having strong shadows several times a week. Not sure what to do next. The shadows are tolerable but last nearly all day. So far in the new year I've had only 4 PF days. The thing that worries me most is the changes in the CH for each of the last three cycles. Any suggestions or ideas/comments gladly welcomed.

Hi Melane

Thanks should go to DJ the founder of this site and to all that have contributed to it since.

For your shadows, you might try O2 or some caffeen in the form of coffee or any soda that has it.  Many here swear by the energy drinks like Red Bull.  (the energy drinks gag me)  

Glad you found this site but sorry you needed to come looking.  Read-read and read more here.  There is a host of info available and don't hesitate to ask questions!

-P.

edit: missed the pred taper part.  Long paragraphs are hard to read.

I was surprised by, 1. much Pred before Verap. was mentioned; 2. the low dose of Verap.

This article is an approach used by many headache specialists. Might want to print it out and discuss with your doc.
---------

Headache. 2004 Nov;44(10):1013-8.  

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

   Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Welcom Melane.

You may want to ask your neuro to up the Vrap dosage.  I was taking 240mg a day with minimal results.  Got it upped to 360mg which worked a little better.

Get hooked up with some oxygen.  There is great info all over this site, especially in the medication section.

Keep reading, there are alot of other things to help you get through this, energy drinks, 4way nasal spray to name a couple.

                                                    PFD,s
                                                     JPC

Hi Melane,

Welcome to your new home!!!  I'm so sorry you needed to find us.

I'm with Bob on his observations.  The article he posted turned out to be my magic bullet.

You really need to get some type of abortive going.  Something that will stop the pain in a reasonable amount of time.

I use Oxygen (O2) therapy as my first option.  100% Oxygen @ 25lpm through a non-rebreather mask.  Breathing O2 can abort a CH in 10-20 minutes.

If the Oxygen fails me or if the attack returns I drink an energy drink or coffee and follow that with more O2.  If it fails a 2nd time I turn to Imitrex injections.  These have never let me down and are my last line of defense.

Fortunately now that I have the Verapamil dialed in I only have one or two rough days a week.  I'm sure I could do better than this but want to keep the amount of Verapamil I take as low as possible.

There are other options out there too.  You should read these:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There are also non-traditional solutions.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Educate yourself on these options and then discuss them with your Dr.  Nothing kicks CH to the curb faster than an educated clusterhead.

-Dennis-

Welcome to your new family.  Sorry you had to jon the party.   ;)

also check out clusterbusters.com.

That's all for now...I've got a nauseous migraine, too!  :D
-Paige

hey melane.

as far as the drugs...*shrugs* yeah CH is different for every on it seems. pred doesnt kick my cycle it merely drives me koo-koo. ive been on 10 day tapers every 2 months for the last 6 months. and im not goin back on it. finally in a place where i can handle the pain tho. verapamil should definitely go up i think ...my meds r as follows
verap @480mg...lithium @600mg....topamax @100mg..
i was finally able to get rid of my O2 tank.

I'm not sure where in philly you are but see if this helps, these guy have what you need and are familiar with CH.
Ascher health care center 1141 bustleton pike feasterville pa 19053
215 355 2710.....the regulator costs 70$ (i think) 35$ to fill the tank and 8$ a month rental on the tank....
hope that helps and good luck

KILL THE BEAST mkd

ditto with the energy drinks and o2.  You obviously found out prednisone is not THE answer.  It can help but it always comes back

Melanie,

I started with 18 days of prednisone, 50mg for 3 days, 40 for 3 etc. while waiting for 240mg of verapamil to kick in.  Imitrix injections were prescribed and not needed.  Maxalt MLT 10mg for when I am caught unawares since I am out and about a lot due to nature of my work.  This year, there were breakthroughs that were probably catalyzed by a cold!  Back on the prednisone for 18 days, increase the verapamil to 360mgs, insurance override on the Imitrix (I now get what I need as needed) and Maxalt for another option.  My neuro just prescribed O2 so I will try that if this cycle continues (ever the optimist) and I also just started with the melatonin (9mgs) at night.  It seems that finding the right cocktail takes time.  Imitrix is my wonder drug since it is effective and fast and so I save it for those full flung nighttime horrors because by the time I wake up I am already far gone, K8-9.  For daytime shadows, I just started with the energy drinks and I think they help.  I drink a lot of coffee anyway so adding the taurine may be the extra oompf that my system needs.  My neuro did mention depakote as an option but that is a med I am pretty sure I want to avoid...  until the next hit!

I have learned a lot from this site and it has helped enormously in understanding the medications.  Someone had suggested exercise and I tried that but it did not work for me.  I'm very active anyway and all it did was get my body tired but not enough to sleep through a K8.  

Good luck and have faith!  You will find something that works for you.