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  ;D

Anyways thank you all for the vast knowledge and info!

Hi Mike and welcome

It's amazing how hard it is to get an accurate diagnosis, which is why we always suggest that people work with a headache specialist. I've seen it suggested that going 10+ years to get a diagnosis for episodic CH isn't too unusual!

With the verapamil, 240mg is a fairly low dose as most people will need 360-480mg a day with some going to 1000mg a day. However work with your doctor on this as other factors influence what dose you can have. Plug get a regular ECG since verapamil can impact the PR interval (which it'll pick up). A higher dose may help cut down your CH frequency even further.

Imitrex can work well to abort CH, however since you mentioned 100mg this suggests you've been given the pill form. This does fine for migraines, however it takes too long for CH so most people use the injections or the nasal spray form.

You didn't mention oxygen. Read about it at (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). Using pure oxygen at a high flow rate and a non-rebreather mask can kill off a CH in a few minutes plus you can use it multiple times per day.

From your questions...

Space the calcium out from your verapamil, so midday is halfway.

D3 can be split or taken all at once. It's fat soluble so often the main meal of the day is best for that.

Hello Mike and welcome,

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

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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.

Mike thanks for the reply! I am currently taking 240 mg 2x a day. ECG came back normal today.

Re: O2. Neuro MD and I have discussed O2. He seems receptive to the idea. Now my question is, what should an O2 prescprition look like? My pharmacy doesnt carry it, and from my past experience a DME company has to deliver the O2 on a schedule (1x per mo or something like that)

Verapamil has reduced my attacks by 50 to 60 percent (occurs only 1x per day now instead of the 2 to 4x per day) ;)

Peter: Im going to try batch vitamin regimen to see if this nips it in the bud. I had my vitamin d lvls drawn today and i suspect like all sufferers that my serum lvl is low as well!

I feel a new sense of relief and hope since i have found this website. Now we dont have to suffer in silence and we can take control of our lives once again!

Thanks for all the help guys! Will post f/u info as the become available!

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

Mike(P10),

Here is a copy of my O2 script, which is a repeat for 9 months:

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Hope this helps,

Peter.

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

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

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.  ;D

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!

Peter510 wrote on Jun 3^rd, 2016 at 6:50pm:

Mike(P10), Here is a copy of my O2 script, which is a repeat for 9 months: Hope this helps, Peter.

Peter,


thanks for the script! Just want toverify that it say x9/12? So thats a standing order for the O2 company to deliver O2 for 9 months? Just wondering how does it work re: refills of O2 tanks?

Thanks
Mike

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.

Mike,

Sorry, I meant to say also that they take the empty tank and replace it with s full one.

Peter.

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

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.

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

It will depend if your provider will give you a choice of sizes, some will, some won't.

For home use, a good sized one means it holds plenty of lots of CH aborts. If you want it mobile then a smaller one is good. I used to have larger ones for at home and one I could put into a backpack for mobile use.

You'll need to figure out how much oxygen you get through so that you can re-order in time, remember to allow for times like xmas and Easter when the supplier isn't open. The last thing you want to happen is to run out when you need it.

I've a 15lpm and a 25lpm regulator, with the 25lpm being my favourite since it results in much faster CH aborts and it ends up using less O2, so O2 tanks last longer too. Ask your doctor for the highest he will give you.

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.

Mike NZ wrote on Jun 3^rd, 2016 at 9:08pm:

It will depend if your provider will give you a choice of sizes, some will, some won't. For home use, a good sized one means it holds plenty of lots of CH aborts. If you want it mobile then a smaller one is good. I used to have larger ones for at home and one I could put into a backpack for mobile use. You'll need to figure out how much oxygen you get through so that you can re-order in time, remember to allow for times like xmas and Easter when the supplier isn't open. The last thing you want to happen is to run out when you need it. I've a 15lpm and a 25lpm regulator, with the 25lpm being my favourite since it results in much faster CH aborts and it ends up using less O2, so O2 tanks last longer too. Ask your doctor for the highest he will give you.

Mike re: size in the 1st sentence, were you stating size of tank or size of regulator? and the word provider = provider of O2 correct? Also how can you get 2 different O2 tanks? do you need 2 different prescriptions?

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

Mike re: size in the 1st sentence, were you stating size of tank or size of regulator? and the word provider = provider of O2 correct? Also how can you get 2 different O2 tanks? do you need 2 different prescriptions?

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).

Mike,

The capacity of the regulator is determined by the prescription (see "15 litres" on mine) and you need to discuss with your Doctor what yours will stipulate.

As Mike says, the size of tank depends on your supplier. You will have to discuss options with them.

Best,

Peter.