Hi,

As most of the users here, my mom is a CH-sufferer. She has suffered from CH for what I would guess is at least 6 years, but have had issues with migraines prior to that. She has been diagnosed with low D3 about 6 weeks ago, and started taking D3 supplements then, at rather "low" doses from what I could recall.

In search for "cures", I stumbled upon the very popular D3 regimen by Batch. This gave me hope that it might be possible to at least prevent the pain from CH for my mom, and I drove over to her and showed it to her. She actually listened to what I had to say and show her (she's a veterinarian, so she's normally the one to talk knowledgably about medicine), and I could see that she thought this might help her.

Yesterday, I asked her if she's got a hold of all the supplements listed in the D3 regimen, and she said she had, and that her CH hasn't been this bad in a long time, and that I shouldn't have given her false expectations... This was absolutely devastating to hear.

I'm wondering if anyone experienced getting worse after getting on the D3 regimen? Are the recommended dosages true for women, too? I'm certain she did not do the "load"-dosages of 600k IU over two/four weeks; she is probably doing about 2-3k IU/day of D3. I don't know about the other dosages, although they're probably the same as what is listed by Batch.

I hate seeing her suffer like this, and she really is the kindest person I have ever met - she shouldn't have to be in pain every single day like she is. Do you have any tips that might help her? Appreciate any input.

Thank you in advance.

If she is not following the regimen per Batchs'instructions,then it's not going to help.
The loading part of the schedule is important.
Did you say she had her vit. D levels checked?

Hello Helpmymom,

You are very welcome here. Everybody on this site understands how important our supporters are to us, so a BIG thank you to you for supporting your Mom.

Can you fill us in on any medications she is currently using, is she working with a headache specialist and any other relevant information that will help us to help both of you.

Batch's D3 Regimen works for over 80% of us, but it has to be followed to the letter and the loading doses are essential at the start to get her blood D serum up high enough to control her cluster headaches.

The loading dose options are in the second section of the attached link:

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You might print it and discuss with your Mom before giving it a second try.

Best of luck and keep us posted.

Peter.

She is a trained professonal--in medicie, of all things!

Have you asked yourself why she is not actively involved in her own care, doing her own homework, maybe even seeing a good headache specialist?

If I learened anying from being a mental health therapist for 40-yrs it's: you can't save someone from their passivity--or fear, until they are ready to lean how  to take charge of their own lives.

YOU have to accept that you can't save her. Your efforts to do for her only sets up a struggle of, "who is going to win the struggle for control?"

Bob Johnson wrote on Jul 5^th, 2016 at 3:57pm:

Have you asked yourself why she is not actively involved in her own care, doing her own homework, maybe even seeing a good headache specialist?"

Who says she isn't?

Esheel31 wrote on Jul 5^th, 2016 at 12:51pm:

If she is not following the regimen per Batchs'instructions,then it's not going to help. The loading part of the schedule is important. Did you say she had her vit. D levels checked?

Typically dosages are based on gender and weight, does that apply for the loading of D3 too? Yes, she had her D3-levels checked, and they were really low. That was coincidentally before I told her about the D3 regimen that is helping a lot of the CH-sufferers.


Quote:

Hello Helpmymom, You are very welcome here. Everybody on this site understands how important our supporters are to us, so a BIG thank you to you for supporting your Mom. Can you fill us in on any medications she is currently using, is she working with a headache specialist and any other relevant information that will help us to help both of you. Batch's D3 Regimen works for over 80% of us, but it has to be followed to the letter and the loading doses are essential at the start to get her blood D serum up high enough to control her cluster headaches. The loading dose options are in the second section of the attached link: <snip> You might print it and discuss with your Mom before giving it a second try. Best of luck and keep us posted.

Supporting my mom is the very least I can do.

Unfortunately I don't know any of the specifics. I will try to extract some detailed information from her for you guys. I'll read up on the link you provided.


Quote:

She is a trained professonal--in medicie, of all things! Have you asked yourself why she is not actively involved in her own care, doing her own homework, maybe even seeing a good headache specialist? If I learened anying from being a mental health therapist for 40-yrs it's: you can't save someone from their passivity--or fear, until they are ready to lean how  to take charge of their own lives. YOU have to accept that you can't save her. Your efforts to do for her only sets up a struggle of, "who is going to win the struggle for control?"

She is actively involved, but mostly to the extent of talking to neurologists and whatnot, and they have put her on so many different medications throughout the years. They actually flat-out told her to give up trying; supplementing with O2 when it gets bad is all they could recommend, with some migraine medications etc.

I get where you're coming from, but you're wrong. I can save her. Reading this site's users' experiences, reading stickied posts, see what works for most and what doesn't will go a long way in understanding and beating this thing.

Helpmymom,

I'm the CHer who developed the anti-inflammatory regimen in October of 2010.  I've been CH pain free ever since... I have also actively tracked its use and efficacy as a CH preventative since December of 2010.  Accordingly, I've collected a lot of data about how CHers respond to it from over 600 CHers, many of whom are members here at CH.com.  I've also collected data from an online survey of 187 CHers taking this regimen to prevent their CH.  The cardinal rule is get tested for serum 25(OH)D.

Data from the online survey of 187 CHers taking this regimen indicate nearly all CHers with active bouts of CH are vitamin D3 deficient prior to starting this regimen. 

The following normal distribution curves illustrate 25(OH)D serum concentrations before start of regimen and after a favorable response.  This data comes from the online survey of CHers taking the anti-inflammatory regimen to prevent their CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You can read about this regimen and its capacity to prevent CH at the following link:

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Regarding an up-tic in the frequency and severity of your mom's CH...  Roughly 3 to 5% of CHers experience an increase in the frequency and severity of their CH shortly after starting this regimen.  This phenomena can be devastating to the unsuspecting CHer who is expecting a cessation of CH symptoms.  Fortunately this phenomena is short lived if the CHer sticks with the following suggestion.

Stop taking the entire regimen for two days, then add back the vitamin D3 at 10,000 IU/day.  If there is no change in her CH patterns, vitamin D3 is not the reason for the increase in CH frequency and severity.

After two days of just 10,000 IU/day vitamin D3, add the magnesium at 400 mg/day and wait another two days to see what happens.  Continue adding the other vitamin D3 cofactors at two day intervals looking for an increase in CH patterns.

If your mom experiences an increase in the frequency and severity of her CH after adding one of the vitamin D3 cofactors, eliminate it from the regimen for a month or two.  Doing this helps eliminate possible reactions to the other vitamin D3 cofactors.

The 2-Week loading schedule also helps prevent this up-tick in CH frequency and severity phenomena...

Being a good CH supporter means you need to roll with the punches that invariably come when we CHers lash out in frustration over our inability to control this terrible disorder. Learn to read her mood and only make suggestions when she appears receptive...  Even then a short well planted suggestion is all that's needed to get the ball rolling... Overdoing it only spawns distrust and rejection...

Take care, hang in there and please keep us posted...

V/R, Batch

Hey helpmymom,
Welcome to CH.com and thank you for helping out one of us. Your mom is lucky to have you.
I am a beneficiary of Batch's D3 regimen.
I started the regimen 3 years and a couple of months ago and I am Pain Free -PF-.
I used to get hit always on the right side of my face and always around 1 hour after falling asleeep.
During the first 2 weeks on the regimen, the pattern of my cluster headaches changed, I was getting some hits on the left side and at random times. Batch re-assured me that this can happen and asked me to hang in there.
I am so glad that i did that as, after a couple of weeks, the pain faded and disappeared.
Your mom should really be reading this forum herself so that she can see for herself the survey results and familiarise herself with the D3 regimen and its succes stories.
In my opinion, the best thing your mom could do to help herself  is starting the D3 regimen and staying on it.
I know it's the best thing I and many others did.
I will never stop taking it and now have my life back. I can now enjoy all aspects of my life from my kids, my partner, spending time with friends, practicing sports, going out, working 12 hours/day at a job i love, travelling, helping others,  I am now starting to train for my first triathlon ever, etc.....
Your mom can have her life back too
All the best

So my mom has now come around and seems to want to give this another shot. Apparently she tapered down the verapamil (if I'm not mistaken) when starting this regime thinking it'd be ok, which may or may not have caused her to have even worse episodes. I read about someone who did taper down their verapamil and experienced harder hits the following days, so I'm suspecting that this may indeed have been the case.

Is it really so that during loading phase, she will need to ingest 40-50k IU/day of D3? Having 10 µg/400 IU tablets will then mean 100-125 tabs a day? I know there are some 800 IU tabs that she can take instead, so obviously that will be the more convenient way to go, but she will still have to take 50-60 tabs a day. If I'm right here, would you then space the intake throughout the day, in batches of, say, 10-12 tabs at a time? As vitamin D is fat-soluble, wouldn't it be beneficial for her to take it with preferably fat-loaded food? I also read someone stating, based on anecdote, that verapamil reduces uptake of D3, is this right? Would you then suggest that she tapers off verapamil temporarily or even permanently?

I'm sorry for asking so many questions, I just want to get this all right.

Here is a D3 softgel at 10000iu D3 each.

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Take 1/day when not loading.

take 5 for loading dose.

Your mam could take 5/day for 5 days.

It is also very very important that she takes all the other components of the regimen.

You are right about taking the regimen with the most fattening meal of the day.

All the best

Another place to get large doses is iherb.com, based in California.  Very reasonable prices even with the shipping costs, compared to here in England.

thierry wrote on Jul 28^th, 2016 at 10:07am:

Here is a D3 softgel at 10000iu D3 each. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Take 1/day when not loading. take 5 for loading dose. Your mam could take 5/day for 5 days. It is also very very important that she takes all the other components of the regimen. You are right about taking the regimen with the most fattening meal of the day.

Yes, Thierry has it right.

I supported my husband through starting and sticking with the regimen exactly. It took 3.5 weeks to work but it was so worth it! He was in remission for two years, and that was a godsend.

It would be nice if people always had the capacity to manage their own health care all by themselves. Unfortunately, there are many things that can prevent that.

Dealing with the pain was taking up all of my husband's resources. He got a medical diagnosis and the doctor prescribed him oxycodone, which didn't even work for him and made him feel really messed up. After that he gave up on managing his condition and just suffered.

I was his researcher and cheerleader and I know that meant a lot to him.

Hi Feisty,

You sound like an  [smiley=engel017.gif]


Your hubby is lucky to have you.  [smiley=bow.gif]


Oxycodone is an opioid, it doesn't work for CH and can actually create more headaches and pain.

May you both be well

:)

All the best

I just want to encourage Helpmymom to feel good about helping her mom  :) . Not everyone can go on a forum and research alternative health practices and implement them when they are in the middle of a health crisis ;) .