Hi JM

Try 5000-10000 IU vitamin D3, 500 mg Magnesium and very important 40-50 mg Zink per day. Zink should be taken as a solo-suplement.

It can take some time to work, but it works for almost everyone.

nhs

Just when you think you've tried it all, there are 10 more things to try, so don't give up.

I know the fear feeling all too well, but somehow, someway, you've got to try to get over the fear because it can only make things worse for you. Worrying about the next cluster will only drive you nuts, cause anxiety and/or possibly panic attacks, and may make clusters worse. Try to eliviate your stress and fear as best as you can.

GOOD LUCK!

Bob Johnson wrote on Feb 8^th, 2012 at 7:42am:


I agree. You should always consult your doctor. Also with high doses of different kind of vitamins. They are not all totally harmless if taken in high dosses. Combining real medicine or just upping the doses of 1 could have bad side effects.

TREATMENT PLAN!
Plan A: 02,caffeine
Here's the traditional first line stuff. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or You and your doctor can get the best treatment therapies down. After that you can fine tune treatment to your best results.
all the best.....I get scared too!...no biggee.
the bb
Listen to Bob.

Do you have the O2ptimask sold here. The 3 liter bag and working valve system really makes a difference. Then you get the most bang for the buck.
Also look into a larger regulator, 25lpm. Deep breathing technique along with high flow rates usually ups the effectiveness. Also the D3 regiment, lots of limeade, has helped some get better results in general.

The prednisone is amazing but as soon as I wean off they come back. One year they stopped a cluster but it was because I started them at the peak of my CH season. The verapamil worked one year and the next it did nothing but prolong the cluster cycle. That's why I'm at a loss and don't know what to do. I am writing this after being woken up by the beast for the third time tonight. Thanks for the o2 I get back to bed ten minutes later. I started breathing my o2 straight from the tube (no non rebreather mask) and I get relief. Thanks!!! Also, where can I buy a regulator over 15lpm? I didn't see any on eBay?

As you describe it, the Pred is doing its job--a rapid stop to the cycle--but it's not for long term us.

Verap: no evidence I've seen that it extends a cycle. Very possible that the dose you used effectively year 1 is no longer effective for year 2, and so you have or partial benefit,  i.e., adjustment of dose is a logical next step. The range of effective dose runs as high as 900mg/day.

This protocol is widely used:

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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

I've not seen any positive responses from accupuncture being reported.

I'd put much better trust in Batch's vitamin D regime and verapamil myself.

I have tried everything under the sun.  Holistic, non-invasive, drugs (everything noted on this website), you name it.  The ONLY drug that works for me without making me a total zombie is Lyrica.  I did cartwheels when it worked.  Here's the drag -- Blue Cross won't pay for it.  It has only been "clinically" approved for diabetes-related neuropathy and fibromyalgia.  I waged an appeal with Blue Cross and lost (even though my neurologists provided all medical documentation showing that I had tried and failed on all other drugs).  The other day I saw a magazine insert advertisement that Lyrica is now being marketed to migraine sufferers.  I definitely suffer from CH, not migraine, but it worked for me.  Here's my advice -- try it.  If it works, and you have Blue Cross, your doctor can give you a 15 or 30 day free supply (if they have testers on hand, if not, I think the company will authorize a free trial).  If it works, and your insurance company denies coverage and you have to appeal, an insurance company has to provide the drug during the appeal process.  Unfortunately, if you lose, like I did, you'll then have to pay for it going forward (incredibly expensive).  But as any CH sufferer will attest, they'd pay any amount if it stopped a spell.  I'm not sure if other people have had success with Lyrica (we're all different) but I can say for me it worked.  And DM*&^ these insurance companies.  Ironically, when Imitrex first came out, they denied that for me as well saying it hadn't been used for CH.  Once the patent expired, all of a sudden they were willing to pay for it (however, I HATE that drug and it's only effectiveness for me was to distract me from the headache for 2 minutes b/c I thought I was having a heart attack from the drug).  It would then lessen the severity of the 1st attack, but the 2nd attack two hours later would be a doubled up monster.

jon019 wrote on Feb 14^th, 2012 at 10:08pm:

Same. I was seeing an accupuncturist for other reasons, she swore she knew CH and could heal me as I entered a scheduled session with a Kip 3... After 3 sessions working on that: no effect whatsoever on the CH side.

and JM, there is another alternative to healing CH:
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