Hello :)

I didn't think I would ever be posting again after 3 years of pain free nights.  But after the past 10 days of cluster headaches every night here I am.

A little bit of update/info....Meds that I have been taking is 120 mg of Verapamil.  My original dosage, after being diagnosed more than 3 years ago, was 240 mg.  After 18 months of remission (for lack of a better word) I reduced the dosage to 120 mg and was pain free.  I had (past tense) a prescription for oxygen but never had to use it as the Verapamil kicked its butt.

Recent medical history.  Late May of this year I fell and fractured my hip, had surgery (plate and pins) and I'm recuperating nicely.  It was about a week after I came home from the hospital that the headaches returned.  Very mild in severity compared to the past and very sporadic, maybe once every 4 or 5 nights and lasting max 10 minutes.

It's just this past 10 days that they have returned with a vengeance with last night probably being the worst I have ever experienced.  Same old same old, not long after I fell asleep and lasted somewhere around 4 or 5 hours.

About 7 days ago I upped my dosage of Verapamil to 240 mg.  1 pill in the morning 1 pill in the evening.

I was wondering (until I can see my family physician) how safely, blood pressure-wise, can I increase the dosage up to 480.  Is it advisable to increase it right away up to 480? or in stages? to 360 then 480?  And should I take all 3 or 4 at the same time?

Hoping for answers and relief.  Thank you for your support.


Carole  :-[

Carole,

Yep, That's how it works.

Try the D3 method, it is helping me. Gotta play with the amounts of D3.. Everyones different. My best advise would be to act quickly, Don't wait around on this cause as you know it only gets worse.

Coach Bill

Excuse my inability to find it in the search in this forum, but what is the D3 method?

Thanks Bill

Verap. is the most widely used preventive with dosing go as high as 900mg. I would not increase, now, without your doc's O.K.

At high doses, there is the possibility of heart problems; rare but requires regular EKGs and the heart issues resolve quickly when you stop using it, i.e., not an issue which should scare you off Verap unless you already have a histsory of hear problems.
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Print and give to your doc.
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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.

PMID:21258839[PubMed]
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Also print the PDF file, below, and use to discuss options with the doc.

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Thank you so much!

CaroleA wrote on Aug 30^th, 2014 at 11:56am:

Excuse my inability to find it in the search in this forum, but what is the D3 method?

Hi Carole.
You can find helpful information here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.
You can also browse this long thread for more info and many personal stories about D3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
-Pat

Thank you!  Off to read

Of course being in Canada, I was unable to find a multi-vitamin supplement close to either the Kirkland or Citracal plus so I am going with the breakdown listed.  I do live close enough to the US border that I can get the Citracal plus so I will do that in the next week.

The only one I'm concerned about is the Calcium supplement.  "Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours.  Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule."

I'm currently taking the verapamil once in the morning and once in the evening, separated by 12 hours.  Is there any benefit or detriment to taking both the verapamil at one time?  That way I can allow the 12 hours to take the Calcium.

Thank you!


Carole

Hi Carole
Sorry to hear the beast is back in your life. I get all my D3 and it's co-factors from iherb.com in California. They do all the larger doses that we need and are very reasonably priced. Even with shipping here to the UK it's cheaper than buying it here. Shipping and delivery is fairly fast too.
Hope this helps.
Maz.

Thank you Maz, I will check that out :)

I'm on week 3 of the D3 regimen, and I have been pain free for 7 nights in a row!  I cannot thank everyone that is on this forum enough.  Without you I think I would lose my mind!  Or gouge an eye out at the very least  :)

Thank you thank you thank you!  Take that beast!


Carole

Hey Carol,

Thanks for the update and glad to hear the anti-inflammatory regimen is working for you.

Regarding your question on calcium...  The jury is still out on its effect on verapamil while taking the anti-inflammatory regimen.  Kirkland's Mature Multi contains 220 mg of calcium so taking it in the evening with the largest meal of the day should give your morning dose of verapamil plenty of time to do its thing.

In looking over your medical history, it's clear to me the trauma associated with broken hip you suffered and followup surgery were likely a trigger in this recent outbreak of CH. 

Trauma and surgery from the broken hip almost always result in inflammation, the body's normal defense against injuries like this.  This inflammation consumes available vitamin D3... what little you had... and that was likely all it took to restart your CH.

Now that you're on the anti-inflammatory regimen.. be sure to stay on it year round...  It will help in building bone mineral density (BMD) and that should help prevent broken bones in the future should you take another tumble. 

Be sure to take the vitamin K2 listed in this regimen.  It helps direct serum calcium away from soft tissues and arteries towards building BMD.

Take care and please keep us posted.

V/R, Batch