Vitamin d3 regimen

[kat_92]

Hey all!

im starting my second month of painful headaches. They are starting to feel more like clusters each time they occur. I don’t have the best insurance so I am stuck with my current doc at the moment. He is CONVINCED it is neuromuscular. Despite my telling him about the times it occurs during the day and my ocular pain. I am very interested in the vitamin d3 regimen. I read the entire study I saw that was posted by Batch. I just today purchased the correct vitamins for the regimen. My question is, is the regimen more of a preventative treatment, or will it abort the current cycle I am in? My birthday is coming up and I am very depressed about what’s going on. It’s most frustrated giving money to a doctor who does not know what I’m going through. Any and all help is appreciated. Anyone who has been on the regimen for a good amount of time? 

Thank you 

[Freud]

Please please find a new doctor there has to be a primary care doc you can go to educated about clusters if that’s what you have and get proper support. You must get the lab tests don’t if you’re going to do batch’s protocol. But first please tell us what you’re experiencing so we can better help you. Does your nose run or get stuffy when these attacks occur. They should probably feel more like an attack and less like a headache. Where is the pain located? Does your eye get puffy, tear, get red?  Any tooth jaw or facial pain associated with these attacks?  How long do the attacks last? How many a day? Do they wake you up out of sleep?  Do you get more active when they occur and do things like rock/shake, pace?  What does the eye pain feel like, is it only during an attack?  That will get us started.

You have several things you can do to help. The vitamin D program is a great place to start but as I said you will need some sort of supportive doctor to get labs done. I really hope you’re not in a one dr town and can change. Anything is better than a doc that won’t give you a correct diagnosis if you have CH. plus every CH patient needs their brain scanned to rule out other treatable causes (aneurysms...).  

Looking forward to your reply

[kat_92]

All MRI came back negative. I’ve had mild-moderate pain at all times of the day starting July 6. The pain worsens about 3 times a day. The pain is tolerable but painful. I put an ice pack directly on my eye ball to numb it. I sleep through the night. The pain starts at my temple and slowly moves toward the back of my eye. It’s a very dull piercing pain. I get a little bit of eye tearing. No stuffy nose or swelling. I don’t know what to do besides grab an ice pack. This happens maybe 3 times a day. It is never out of no where I can always feel the build up of an attack coming. Can I go to a general doctor to get these tests done or does it NEED to be a neurologist? I’m not exaggerating when I say that most of them that accept my insurance are terrible 

thank you 

kat 

[FunTimes]

Freud has you on the right track. I have stopped going to doctors because they have no idea what we as clusterheads need to control our condition. If you have a doctor who does not listen to you and/or says he can cure you from clusters it is time to move on. After you are 100% sure you do have clusters and not anything else going on in your head with a scan we have a tun of experience on this site to help you cope. 

starting the D3 regimen is a great start and can bring some to many pain free days, you can take it all year round to keep you clusters beat down. just remember your not cured, if you stop they will most likely come back.   

you will want to start looking into getting oxygen first then imatrex, 5hr energy drinks for aborting. 

Verapamil at high doses is given to help prevent attacks.

Then read up on the different busting options. 

read as much as you can on the site and ask as many questions as you can, we are all here to help each other. 

I would also start a log of some sort to keep track of your attacks, just write down the start and stop times, how painful they are and what you did to abort them. You can add a million different thing to figure out what the cause was but that can make you nuts. People sometimes track what they eat, the weather and any sleep or activity changes that may have triggered it. 

Edited August 13, 2019 by FunTimes

[Freud]

Hmm, so the pain is always there but worsens at 3-4 times a day? Is that correct?  There are other TACs trigeminal autonomic cephalgias that are CH look alikes HC is the one I hear talked about the most and you may want to look into if your headache is constant w peaks. Hemicrania continua (so May be off). I have to run but I’ll try and send another reply later today. 

 

Pain free wishes

 

Brian 

[kat_92]

Yeah it’s always there from the moment I wake up. I’m making an appointment with a general practitioner to see if I can get the blood work going so I can start the regimen. I’ll work on finding a neurologist I’m hoping that the new GP can recommend someone for me 

[kat_92]

I still don’t know much about the disease. Every time I bring it up to a neuro they brush it off. Is it genetic? 

[CHfather]

It really sounds like what Freud said, hemicrania continua: https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page  You'll see on this page that if it is HC, it is treatable with a medication, indomethacin (and cluster headache treatments, such as oxygen, are likely not to be effective).  It's relatively easy to test with indomethacin whether it's HC or not, though it is not beyond doctors to screw that up with not prescribing enough or not long enough.  Indomethacin is hard on the guts, so it needs to be taken with something to protect your stomach.

You can start the D3 regimen without a blood test.  It's 99% likely that your D level is low.  I don't know whether the D3 regimen helps with hemicranias or not.

CH is somewhat genetic, in that it can run in families, but most people who have it do not have a family history.

 

[Freud]

Ok kat, 

i did a little research to refresh my memory on HC and your brief description sounds like a dead ringer to me (I am also a PA although neuro is not my speciality...) look here (it’s a wiki but I think it’s fairly accurate to get started):Wiki for HC

the great news is the primary treatment for HC is an old NSAID called indomethacin. Your pcp should be more than comfortable using it. It is rather harsh on the stomach so it should be taken with food and you’re going to want them to write for Prescription strength Zantac or other H2 blocker or proton pump inhibitor of their choice. Please don’t over look that it’s imperative to keep the indomethacin from causing ulcers when taken for extended periods of time. If I was you I’d be happy. HC is much easier to control than CH. I don’t think the vitamin D protocol has been studied in HC patients, may be start by getting a level and loading from there. Batch’s protocol is good for a host of reasons and most people are vitamin D deficient.  Hope this helps. 

 

Brian

 

ps print out some info info on HC to bring to your doc. Most GPs don’t know anything about it. Unless you see a headache specialist I imagine most neurons won’t be familiar with most of the TACs..

[Freud]

Sorry my post was late to upload. What CHf says....!

[kat_92]

Thank you guys for the information! I appreciate it so much. 

[xxx]

Hey Kat,

I'll echo CHfather's comment to start the anti-inflammatory regimen now.  You'll need a round of labs for your serum 25(OH)D, calcium and PTH after 30 days on this regimen anyway.  We can reverse engineer your 25(OH)D3 results to come up with an estimate of your starting concentration.

I'm in the process of updating the posted version of this treatment protocol on my webpage at VitaminDWiki at the following link with a change in the suggested type/brand of vitamin D3 from the oil-based liquid softgel 5,000 IU vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules. 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I and many other CHers have found the Bio-Tech D3-50 to be faster acting with a higher bioequivalence than the liquid softgel formulations at the same dose.  What this means is more CHers respond faster to this treatment protocol.  The following photo illustrates the supplements I take.

You can order these supplements from amazon.com and iherb.com whichever has the best price.  I'd like to point out that at 22 cents per capsule taken once a week, the cost of this form of vitamin D3 is ~ 3 cents/day.  Two of the 5,000 IU liquid softgels cost 12 cents a day.

Dosing with the Bio-Tech D3-50 is different when it comes to the maintenance dose.  I've been taking one (1) of the Bio-Tech D3-50 capsules a week.  I think this is a good starting maintenance dose after the 12-Day accelerated vitamin D3 loading schedule illustrated in the following notional graphic.

As you can see, the 12-Day vitamin D3 loading schedule at 50,000 IU/day for 12 days elevates serum 25(OH)D far more rapidly than just taking a maintenance dose of 10,000 IU/day which can take a month or more to elevate your 25(OH)D to a therapeutic level capable of preventing your CH.  Taking the 12-Day accelerated loading schedule means you elevate your serum 25(OH)D to a therapeutic level faster for the expected reduction in CH frequency or complete cessation of CH symptoms. 

You may need to lower the vitamin D3 maintenance dose following the 30 day labs by adding an additional day or more between doses from one 50,000 IU capsule a week to one capsule every 8, 9 or 10 days.  The key is frequent lab tests until you reach a stable dose and 25(OH)D response as you'll see in the following charts of my labs for 25(OH)D, calcium and PTH over the last 3 years.

My PCP has no problems with my 25(OH)D3 concentrations this high as long as my serum calcium remains within its normal reference range.  As you can see, it has.  It's normal for PTH to be at the low end of its normal reference range when serum 25(OH)D is above 100 ng/mL.  What you need to avoid is taking the PTH to zero by pushing your 25(OH)D too high like > 190 ng/mL.  Like anything else, if the parathyroid glands sense there's no need to produce the PTH, they will eventually stop expressing this hormone and that would not be good.

Regarding the efficacy of this regimen in preventing the other TACs, I don't have any concrete data.  That said, as these TACs share much of the same pathogenesis with Calcitonin Gene-Related Peptide (CGRP) and Substance P (SP) playing major roles in neurogenic inflammation and nociception (pain) common to All TACs including CH, it's not unreasonable to expect vitamin D3 and its cofactors will help lower the frequency, severity and duration of the other TACs like it does for CH by down-regulating the expression of these two neuroactive peptides.  There's really no harm in trying.

Regarding the anti-inflammatory regimen acting as a CH abortive, it's really a matter of response times.  We expect abortives like subcutaneous sumatriptan succinate to abort a CH in a matter of 5 to 10 minutes and nasal spray of same in 10 to 20 minutes.  A single oral dose of 50,000 IU of vitamin D3 can produce a marked reduction in CH frequency in as little as 12 hours so it's more a preventative than abortive.  That said, several of us are working on an inhaled formulation of micellized (water soluble) vitamin D3 nano mist or nasal spray as a potential abortive.  It's too soon to tell, but I suspect this method of administration will be faster acting in terms of reducing CH frequency and possibly aborting CH.

I hope this covers your questions.  Please keep us posted as you start this regimen.

Take care,

V/R, Batch

[kat_92]

Okay thank you! I just received the rest of the supplements in the mail. I unfortunately already have the oil based d3 so I will be using that. Can I take the loading dose of d3 with simply the multi vitamin as an appropriate amount of calcium? Or should I be taking pure calcium during the loading dose? 

 

Kat 

[xxx]

Hey Kat,

The liquid softgel vitamin D3 will work just fine.  There's no need for additional calcium as long as you're taking the Kirkland brand Adult 50+ Mature Multi.  It is formulated with 230 mg of calcium and coupled with normal dietary calcium, you should be OK.

Remember to double the magnesium dose to 800 mg/day during the 12-Day accelerated vitamin D3 loading schedule.  Split the dose to 400 mg magnesium in the morning with breakfast and the other 400 mg with the evening meal.  Doing this should reduce the probability of osmotic diarrhea.

Take care and please keep us posted.

V/R, Batch