Hi all!

My name is Mike im from NY and i have been a CH sufferer for approximately 10 years. I started getting these "headaches" when i was working at a hospital. Saw a few MD's and stated i have migraines and was prescribed FIORECET and Imitrex.

Fast forward about 8 years since my 1st episode, the headaches are stronger and more debilitating. I decided to see a neurologist and he stated i have CH and i have had it since the beginning  . So he prescribed verapamil 240 mg PO BID, and Imitrex 100mg PO as needed.

I notice a decrease of CH episodes to 1 a day since the start of my med regimen 2 weeks 6 days ago (i use to get it 2-4x day a rating of 7 on the pain scale)

I have done some reading here and i want to start on Batch anti infaatory medication regimen, however i have a few questions for the CH vets!

1) I will be seeing my PCP tomorrow to get my blood work. to get my basal 25(OH)D CA and PTH.

2) I am concenrned with a possible med interaction between CA supplements and verapamil; will CA supplement reduce the efficacy of Verapamil? If so, are there any recommendations to prevent an interaction? ( Batch says 8-12hrs apart between Verapamil and CA supplements, however i take Verapamil 2x day @ 8a/8p, so i dont know how i can get around this

3) Loading dose 50k IU D3 for 1st week ( 50k total or 50k IU + another 10k?) Loading dose 2nd week- 40 k total or 40K IU to + another 10K IU

4) Can the D3 be split throughout the day 20k +30K? or taken in 1 shot?

5) 1st day dose is 10k IU ?

6) Clarification on this: Accordingly, if the BMI is <18.5, subtract 100,000 IU from the total loading dose.  If the BMI is ≥ 25, add 100,000 to the total loading dose.

So my BMI is >25, so i should add another 100k IU in 2 weeks? ( so take another extra 20 pills in 2 weeks span?)
I dont want to OD on the D3 lol 

Anyways thank you all for the vast knowledge and info!

Hello Mike and welcome,

Full details of the D3 Regimen and loading doses can be found at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Go about half way through the post and you will find a comprehensive updated version, with recommended loading doses.

The loading doses are in addition to your 10,000 iu per day. Yes, 1st day dose is 10K.

Regarding BMI, I would suggest you start according to the link above and not worry too much about BMI at this stage. When you have your 25 (OH) D tested again you the result of the test will guide you in that regard.

Always work with your PCP. All going well he/she will be tapering you off Verapamil as the D3 Regimen starts to work.

If you stick to the recommended daily and loading doses you will not get anywhere near toxicity levels.

The D3 Regimen can take a few weeks to work, although some report positive results earlier, so stick with it and don't get disheartened if it seems like it's doing nothing.

In the meantime follow Mike's advice and ask your PCP about getting Home Oxygen. It is the most essential abortive we  Cluster Heads have.

Best of luck and keep us posted.

Peter.

Hi Mike,

This thread looks like a Mike Blog, sorry Peter.  I started the regimen with the 2 week loading dosage. I had so many people tell me I was going to kill myself, but it was better than what I was going through.

I started the regimen in early March and have been PF for about 8 weeks. Read up on what Peter suggests and keep with it.  There is nothing magical or smoke and mirrors. It works for me.

Michael

Michael63 wrote on Jun 3^rd, 2016 at 6:38pm:


Hi other Mike!

Thanks for the suggestion! Im going to Costco tomorrow to get my Vitamins. I told my PCP what i was planning to do and he just shrugged his shoulders, saying that there was no reasearch to back up the claims for the vitamin treatment....his words was it wont hurt  I told him you know what hurts? CH attacks hurt.... he chuckled uncomfortably. Anyways being a RN helps a bit cause they cant BS me. I make it known to all my MD's that i wont hurt myself and i can read as well as they can. LOL. 

Anyways im glad to make a bit of progress and am aiming to get my nuero to prescribe O2 ASAP. I have a conference call with him next week. Maybe i can push him then to prescribe O2 ( going to be on verapamil for almost a month-- June 13 is exact day)

Crossing my fingers guys! My clusters usually last 2-4months every 2 yrs. Looks like in 25%-50% over with this episode, but i want to be as proactive as I can so next time this "Beasy" comes back, i wonr have to stand by and be victimized!

Mike,

Yes, it's one tank per month, or a tank delivered 9 times, if required less frequently. A new script would then be required once you had used 9 tanks.

You would expect to get a regulator and non-rebreather mask delivered with the first tank. These are re-usable.

Peter.

Peter510 wrote on Jun 3^rd, 2016 at 7:36pm:


Peter,

Thanks for the clarification! Looking forward to talking with my MD to get this sorted out. Just wondering, how do they determine what size goes in your home?

I was reading that O2 guide and it seems they have various sizes, tank M looks about right for home use. Also how do they determine your regulator ( ex: 15LPM vs 25 LPM)- i suppose the base it off what the MD writes....

Thanks again
Mike

I am having success with the Vit D protocol. However, I need 15,000 iu a day to have a pain free night. What I am seeing is that the Vit D I take in the evening has immediate benefit, and if I miss, I get hit.

MikeP10 wrote on Jun 3^rd, 2016 at 11:40pm:


I normally had an large sized cylinder and a smaller cylinder. Which ones you'll get will depend on your provider and potentially also on your prescription (I'm in New Zealand).