Hello everyone,
18 days into my cycle so I went to the neuro yesterday and was prescribed prednisone (the 80mg taper protocol), sumatriptan as an abortive, ativan for anxiety (this is the worst epsisode I've ever had and it's rattling my nerves) and indomethacin as a preventive, but stomach meds for toe indomethacin. This is the first time since 1999 that I've taken any meds for the attacks, and I just wanted to get feedback from y'all about this regimen. I have a great deal of trust in the collective knowledge of this board!  ;)

Pred. for quick relief to be used as a long term preventive is starting to work is standard practive. Use of Indo. has disappeared from common use although it continues to be listed in some medical journals but I can't recall anyone here using it. (It's hard on the stomach in large doses and/or long termuse.)

Verapamil is the most effective and common used preventive. Start at the same time as the Pred so that it can build up in your body as the Pred. is tapered off.

Print the PDF file, below, and use it as a tool to discuss your options.

I hope the Suma. is an injection form. Pill form is to slow for Cluster; nasal injection works but less satisfactory for many folks.

Following is not widely used but is highly effective, has the advantageof a pill, and low cost.
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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

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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.
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Bob, I trust your judgement. I'm only one day, or three pills into the indocine. I know that you don't want to play the part of doc here, but is it your advice that I call my neuro and ask him to switch me to the verap instead?  I saw on another thread that you posted the Goadsby protocol for verapamil. Is that the one you would suggest I request?

BTW, Bob, I'm using the injection form of sumatriptan. Used it last night for the first time. Wonderful response in about 5 mins!  In your opinion, how often can I use it before it loses it's effectiveness? Can it be used every night while in episode?

We ae always out ranked by the M.D. but that doesn't prevent asking a question: whly do you prefer x over y?

If he won't deal directly with you, I'd begin looking for another doctor. Arrogance doesn't make for a good working relatlionship. And the doc you settled with dealing with Cluster will be a LONG term relationship, given the nature of the beast--so it's good to feel comfortgable/trusting with the doc. (These comments don't imply any judgment about your present doc.)

No evidence that Suma. loses effectiveness with use. And, since we usuallyl don't use it continuously (assuming cycles) I'd not be concened.

Thank you, Bob!

Indomethacin is not normally used as a preventive for CH, but it is frequently used for Paroxysmal Hemicrania and Hemicrania Continua.

As to switching to verapamil, this is very much a question you need to direct to your neuro as this will be dependent on your personal medical history and the exact diagnosis you have. Verapamil can be an excellent CH preventive, but it does not work for everyone and there are circumstances when it is not appropriate, hence the relying on your neuro.

The injectable form of sumatriptan (brand names Imitrex or Imigran) is the most suitable form, with the nasal spray fairly good and the tablets performing poorly.

Most people can use it twice a day and it seems to keep being effective, but again, discuss this with your neuro.

Also look into using oxygen to abort. This can be used multiple times a day and can be effective in a similar time to the injection. Read more at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Speaking only for myself, I don't bother with indomethicin for CH. Certainly it has some small effect but not enough to make it worthwhile.

Indomethicin will not work for CH. I should know. :'(  However suma injections are fantastic and I use them regularly. You are allowed 2 per day and I have taken this dose for several weeks at a time with no ill effects. But remember we are all different and what was OK for me, may not be OK for you.

Ask your doc for 02, but it must be used correctly to be effective. You must have a flow rate of at least 15 litres per minute (more is better) and a non rebreather mask. If you get either of those wrong it won't work, but used correctly it will also abort a bad CH in about 10 minutes. I use the 02 at home as often as I need to (drug free so completely safe) and save the injections for when I'm out.

With a very high flow you may hyperventilate - you will experience prickly twitchy skin sensations, but this is not harmful and soon wears off.

When you post here it's like the cavalry comes out. Awesome!  My neuro (actually neuro pa) is about to call me to discuss switching to verapamil. I'm going to ask her to start me on 240 mg per day, three times a day, increasing the dosage throughout the day to 80 mg at night before bed for a total of 240 mg per day. This follows the protocol I have seen on here. This has been a whopper of a cycle, and I'm at day 19 or 20. I'm started using the pred at 80 mg today with a taper. Does 240 sound like a enough at this point in my cycle, or should I ask for a stronger initial dose?

BigHitter,

When you talk with your doc, ask for a lab test of your 25(OH)D, magnesium and vitamin B12.  The odds are very high you're vitamin D3 deficient.  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL...  We've collected sufficient data that indicate as CH'ers, we need to have our 25(OH)D up around 80 ng/mL to remain substantially CH pain free.  That requires a vitamin D3 intake of 10,000 IU/day once you've solved the deficiency.

Take care and please keep us posted.

V/R, Batch

BigHitter wrote on Mar 5^th, 2015 at 6:08pm:

Does 240 sound like a enough at this point in my cycle, or should I ask for a stronger initial dose?

Some people will respond at 240mg a day of verapamil, although many need 360-480mg a day and some go to around 1000mg a day! But it is not possible to predict what will work for you and it can even vary between cycles to complicate things.

Start at 240mg and see how it goes. Remember that it takes about 7-10 days for a dose level to become effective, so don't change it too quickly or you'll not know what is effective.

Also get an ECG every few months when on a high verapamil dose as it can impact the PR interval which the ECG will detect.

I'm also convinced that verapamil has concrete dust as an ingredient as it can result in constipation for a while but this normally soon passes (pun intended).

Verapamil worked pretty well for me, although vitamin D3 did even better helping me go CH pain free for over 3 years.

Hi,

Indomethicin never worked for me. Batch's D3 Programme certainly did and Verapamil seems to be the choice for a lot of people, though I never used it myself.

My Doc was going to try Verapamil, but I got him to read the details of the D3 programme and he came on board with that straight away. Now Verapamil is the fall back position if D3 didn't work.... But thankfully it did.

Best wishes,

Peter.

Mind you, we must always remember that indomethicin is a wonderful, wonderful medication used in the treatment of some devastating headache disorders that aren't CH.

I know one poor soul who's been known to sprinkle it on his corn flakes.

Indo never worked for me although I always contend it's good to try since CH and CPH present so nearly the same and it's 100% effective with CPH.
Pred is a life saver for me.  Instant relief.
Imitrex also good results.
I'd save the ativan for recreational use after the ch quits but that's just my druggie nature.

I've been on the D3 regimen since Sunday Feb. 28th. Not sure what the impact has been. Over the last 8 years most of my cycles have had moments of real pain, but also moments of pain that were totally manageable, and I even had two cycles that were so benign that they were like a walk in the park. But holy hand grenade, this cycle has been a true monster - 5 a night, one a day.  I've never had such an active, painful cycle.  In fact in the 23 years I've been episodic, I can count the number of times I've missed work on one hand - and that was with no meds. In this cycle I've already missed a full week of work, plus a few days more. Thus the need for pred, verapamil, the D3 and yes, ativan. I'm not making light of the ordeal soldiers went through in Iraq, but I feel like I have PTSD this cycle, so the ativan is being used to just control the nerves.  Thank you again to all of you who lend an ear, suggestions, and encouragement. You people are true heroes to me. 

The dilemma created when you use a combination of the D3 routine and the standard medical route: one of them will work but you won't know which one!

So, you then have to use everyting, all the time, or start cutting back on one approach, step wise, or the other.

Choose one approach or the other now and give it a fair trial. If you drop the meds Rx by your doc, tell him what you are doing so that he won't be misguided.