Hi Melissa

You're like me in getting the combination of CH and migraines. There are several others here with that combination, so people know what sort of thing you're going through.

It's pretty common to get all sorts of reactions from people you work with, some people have great support at work and others get anything but. You'd have thought that people in the medical profession would understand better, but sadly not.

You've a good mix of medications. Which of them are aimed at migraines and which at CH (or both)? It gets complicated as many CH medication is developed first for migraine and then is found to be useful also for CH, like imitrex.

For CH prevention it looks like you're using verapamil at 360mg a day, which is at the lower end of the 360-480mg a day dose that most people find effective. Some go as high as 1000mg, so there is potentially room for this to be increased, but only do so working with your doctor, especially with all the other medication and the requirement to monitor the PR interval on your ECG.

Melatonin is something quite a few people take here to block overnight CHs with that dose being typical.

For aborting CH, high flow rate oxygen (15lpm or higher) via a non-rebreather mask is great at killing off CHs. I can totally imagine how it's not easy to do this in a hospital situation unofficially.

Have you tried imitrex injections? They too can abort CHs quickly, much better than the pills as they take a lot longer to take effect. They can also be used for migraine.

Maxalt Melts are also effective against migraine, although be very careful not to mix triptans as they can be dangerous.

For CH, the one diet item that can cause CHs to be triggered is alcohol, which applies to most people in bringing on a CH rapidly. Although others, like me, are not affected by it.

For your neuro appointment, I suggest you make a written list of everything you'd like to talk through. Appointments can seem to be over quick, making it easy to miss stuff, but at least with a list you'll know what you need to go over.

Also read up other posts in these forums. There is a huge amount of really useful info that can make a massive difference to how you deal with CH.

And ask questions, people will answer them.

Print and take the PDF file to the doc appt. Use the article as a discussion tool re. your options.

Verap dose is quite low for Cluster. Following is a widely used protocol.
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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.
----But be aware:

J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.
SourceDépartement d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002 Nice Cedex, France. lanteri-minet.m@chu-nice.fr

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877±227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003±295 mg/day) were taking higher doses than those without EKG changes (800±143 mg/day), but doses were similar in patients with SAE (990±316 mg/day) and those with NSAE (1,011±309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

© The Author(s) 2011. This article is published with open access at Springerlink.com

PMID:21258839[PubMed]
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But this is a caution, not a warning against using high doses. Good # of us are routinelly in the 400+ range.

Nothing like Pred to give you a break from beasty, get caught up on your rest. Try and get the oxygen prescribed before you run out of prednisone. I've found when I go on Pred, and come off of it without any other prevent in my system, beasty comes back with a vengeance trying to make up for lost time. You'll want to have something ready when the pred runs out.

Joe

Good news, I'm so happy to be here, reading all this great info!

Bad news, this afternoon wasn't so great.  I was busy doing things that needed to get done and I forgot to eat.  One of my migraine triggers is, if I don't eat every few hours, I'm in for a doozy.  Well, I felt it creep up my neck tried to hurry up and eat something, but it was useless.  The left side congestion and tearing started, and then the pacing started.  Figures. 

Just another day in paradise ... 

Melissa, your appointment is coming up, and I hope you have a good plan of attack. I can only second what has been said and urge you to have a full description of the O2 requirements that will allow you to abort hits effectively. I might also add, given your negative reaction to sumatriptans, that Migranal might be an avenue for you. It takes longer than a trex injection, but for me, lasts longer, too. And it could address your migraines as well. Maybe a win-win? For once  we seem not to have mentioned the use of energy drinks, unless I missed it. Energy drinks that contain at least 1000mg of taurine (Like Red Bull, Monster, Rock Star etc) when slammed at the first sign of a hit, can help a lot especially when coupled with high flow O2.

Anyway, let us know how you make out, and what sort of tweaks to your med list are advised. God bless. lance

Crossing our collective fingers for some positive results!

Joe

Cluster/migraines , your one of the lucky ones...he.he
Get rid of any meds that make you drousy...pain killers/trazadone. They trigger ch. Pain killers may help migraine however the ch is worse. Just a suggestion for you to consider. Stress is a big trigger........it is also in some regard self induced. Never relax....ever.
all the best
the bb

Hi Melissa,

It is truely heartbreaking to hear other peoples stories.  Yours is one that makes my heart heavy.  Yours and other stories here kind of put me in my place though and I realize I could be a lot worse off.  Anyway right off the bat when coming here I started all kinds of stuff.  Drinking lots more water, taking handfulls of vitamins and the O2.  I can't say what is helping the most, but I feel so much better then I did 2 days ago.  It is amazing how a couple of mild days can pick you up out of that depression and make the world look OK again.

Cleveland is a special place to me, I went to school in Kent and have bunches of friends up there still.  I have many fond (pre-cluster day) memories of Cleveland.

Take care and wish you all the best with the O2...I'll pray it works for you.

Mark