First, I love all of you, don't know what I would do without this place.

As I've stated in earlier posts, I am being hit (hard) after 4 yrs of remission.  I have started what worked before 360mg Verapamil X2, also doing the fishoil & D3..  (been doing this for a little over a week now)..  I am getting one after another!!!  I have NEVER got them during work, and ended up in ER at 10a today, then back to work.  AND I got ZERO sleep last nite : (

It's almost the thought of one (worrying) can even bring one on... starting one now.  I go to doc tomorro and will get O2.

Can anyone give me their take on:

Verapamil
Prednisone taper dosage (if I decide to do that)
Anything else helpful at this point. :'(    they are killing me...

ALSO, does anyone know if I can get a choice of 'fishoil' tabs...ewww (sardines, mackerel, anchovies, NOT fun to be burping that garbage in the a.m.) lol

Thank you for your support!

My goodness, Wendy, you are in a very dark place, aren't you?  You have a good plan as far as it goes. I know you've read about energy drinks, melatonin, and lithium as a prevent. Are they on your list? Migranal nasal spray? Imitrex injections? I am sorry if you have answered all of this before but the longer you can make your list the more you will feel as if you have some control. Bob J has spoken about olanzapine more than once and feels it is worth exploring. The most effective pred tapers for me started at 80mg/day for 4 days, then tapered down from there. Others will have different experiences but they only worked for me at the high levels. It is possible you may need a combo of lithium and verapamil as well. Get the O2 quickly and start taking control of the hits. The rest will seem a bit easier as a result. Good luck and God bless. lance

Not knowing what your reservations are about a Pred taper, I can't only strongly encourage trying one cycle to see if it benefits you. Approaches a 100% success rate...
=== Yes, I do encourage exploring with your doc:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
=====

When you are in a severe cycle, think it best to use those abortives which have a proven, rapid action profile.

Lance & Bob... thank you so much!

On the Olanzapine as an abortive... do you take it only when you feel a h/a coming on, or on a regular basis....?

Also, can someone tell me what the standard dose of Lithium is (if I am taking Verapamil with it).

Lithium dosages vary person to person. It depends on how your body absorbs. My husband ramps up to a pretty high dosage (slowly up to I think 1200mg a day) but he also has to do blood work a few times along the way to ensure it's not toxic for him. It's not a matter of weight either, it's how your body absorbs. (Someone else will probably be able to say this better).

He does not use verapamil.

Pred tapers only help me for 5-7 days or so and as I taper the ha come back.

Olanzapine: take when headache starting. It's not a preventive, ala Verapamil, which you take constantly.

OOOKKK!  So, went to doc today (of course we always know more then them, lol).. told him about the Zyprexa and gave him the article.. he gave me some samples..  I just had a h/a started, took a 2.5 Zyprexa and within 5 mins, the h/a was completely GONE!  I have only had whereas one has been ready to hit hard and something happened and it stopped within mins..  I'm pretty sure it was the Zyprexa...  crazy!! 

So can someone tell me why it works, and works so well?

Wendy1 wrote on Jul 27^th, 2011 at 6:44pm:

OOOKKK!  So, went to doc today (of course we always know more then them, lol).. told him about the Zyprexa and gave him the article.. he gave me some samples..  I just had a h/a started, took a 2.5 Zyprexa and within 5 mins, the h/a was completely GONE!  I have only had whereas one has been ready to hit hard and something happened and it stopped within mins..  I'm pretty sure it was the Zyprexa...  crazy!!  So can someone tell me why it works, and works so well?

Bob pushes that one a lot! ;) I don't know it's mechanism, but it works for both episodic and chronic. Definitely one we should probably pay more attention to. Awesome to hear it worked...and worked fast! [smiley=thumbsup.gif]

Joe

You know Joe, I agree it is one we all should be pushing a lil harder.  It's crazy.. in 30 yrs I've never had anything work, let alone work so fast...  I'm not completely convinced tho.. I'll have to see with a few more of the beasts..

But I've been back 1.5 wks and today is the first I heard of it... we should def be pushing it as something to try...  (a miracle of sorts for me?)

Meds get pushed here pretty consistently with their effectiveness across the spectrum. For example, verapamil works to one extent or another for a pretty good chunk of folks, thus you see it mentioned more often. Olanzapine works for fewer of us, thus it gets pushed less.

Try checking out clusterbusters.clusterheadaches.com sometime. There are only a handful of "meds" that get endorsed there, but they are strongly supported by almost everybody at that site.

What Brew said!

gardengal wrote on Jul 27^th, 2011 at 12:56pm:

Pred tapers only help me for 5-7 days or so and as I taper the ha come back.

Yep I believe that is pretty much the way it works for most of us. One of the controversial things about it is that some of us feel that the attacks can come back stronger after the taper.

I did the pred routine back in March.  6 tabs a day for 3 days, then 5 for 3 days, 4 for, etc etc.  It did nothing for me at all.  I swear it made the CH worse, and I would get bad ones quicker after I took it.  It also made me eat like a slob.  I mean you could have put a mail box in front of me and I would have eaten it. 

The only things that really helped were the Imitrex 100mg tabs twice a day, and home O2.....12/L per minute for 15 minutes.

After a 5 week remission, I think they are coming back a little bit.  I want to try the fish oil & D3 mix as a prevent.

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Keno, take a minute and read this link. You're using oxygen at a very low dose. 15 LPM is what we recommend as minimum, with many going to 25 LPM and above. Many have found the higher flow rate dramatically affects the speed of the abort and its effectiveness.

Joe

Stopped the 360 x2 Verapamil yesterday...  after a week I realized that about a 1/2 to 1 hr taking it I got a h/a...  it worked for me the last cycle, but is it possible that it is triggering a h/a..   I just took a lower dose, we'll see what happens.  AND after stopping it, had my first nocturnal h/a of the cycle... sigh, I'm WORN OUT and it's only been 2 weeks :(

I mentioned lithium to my doc and he winced... apparently not a fan?

Has any had that happen, I did read somewhere that the Verapamil was giving rebound h/a's?

After only one week, the verapamil hasn't even built up to therapeutic levels in your serum. That takes 10-14 days.

Ok, so Brew, I just took 240 Verapamil about a half hr ago, and here comes the beast right now... UGH... has anyone ever heard of this happening?

Sounds more like coincidence to me.

If you want to find out if it's going to work this time around, you need to stay on it for at least 2 weeks - preferably more, so you can find out if your dosage needs to be adjusted.

This is why you'll find many who use verapamil also use a transitional drug like prednisone while it's building to a useful level in the bloodstream.

For what it's worth, I used to get a constant tension-type headache the first few weeks I would start it up.