My son, Miguel who is 20 was just diagnosed by his head specialist as having cluster headaches with hemicrania continua.  We live in Las Vegas, NV.  He just got it this March 23 2018.  As the days passed, the pain was getting worse and more frequent about 4 times a day that he wanted to kill himself!  I searched through the internet and found batch's regimen.  We started the regimen on April 17.  His headaches at night stopped on April 25 with prayers and the regimen.  Since then, he is still having small bearable headaches all throughout the day but does not take any medication except for this regimen.  He says he still feels all the symptoms with bearable pain.  He still does have a stuffy nose so should I give him benadryl for 10 days?  Our appointment for his D3 blood test is next week.  For now, I am just giving him 10,000 IU, calcium citrate 500mg, omega fish oil 2000mg, and centrum silver.  I don't give him magnesium since it is already in the calcium citrate and centrum silver.  I also give him a tablet called MigRelief which has riboflavin and 360mg of magnesium already.  Am I on the right path or do I need to add more to the regimen?   By the way, he is leaving for London on July for 2 weeks, does anyone have any suggestions or precautions?  He also suffers from anxiety so has anyone tried using CBD oil for anxiety with the D3 regimen at the same time?

Anna

Hi Anna, your son doesn't need to take the calcium citrate as there is enough in the centrum, but he needs to take an extra 400mg of magnesium citrate/day, which is called for in regiment.

Hoppy

   Most of us (unfortunately, not all us) are episodic with 6 to 8 week cycles being common so hopefully he is too....by July his cycle might be over. :) Let's hope so.

Hi Anna and welcome

Getting the diagnosis was a critical step so that he can now do the right things for his two headache types.

For the Hemicrania Continua, has he been given Indomethacin? This should work well for HC (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).


For CH, the latest info can be found here - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Getting the right amount of Calcium and Magnesium is just a case of looking at what is in the different supplements that he is taking and adding up the applicable amounts.

For his trip to the UK, I'd suggest that he makes sure he has plenty of the medication / supplements he is on with him, plus a bit more in case there are delays in getting back, which is much easier than trying to get additional supplies at the last minute in a different country. Since the D3 and fish oil are often counted as liquids, he should follow the instructions on what quantity he has in his hand baggage compared to in his bag that goes into the hold. Some people can get CH triggered by flying, so he should have CH abortive(s) to hand, like imitrex injections (I've flown hundreds of times with these and have had zero issues with airline security).

No experience of CBD oil, although if the anxiety is related to his headaches the effective treatment should reduce this anxiety and reduce the need for this.

I'm fairly sure that CBD oil may be illegal in the UK, so I'd caution about taking this there too. Best to check before taking this.

You didn't mention him having anything to stop his CH once they start, something like imitrex injections, imitrex nasal spray or oxygen. These can cut a CH down to around 5-10 minutes at the most.

Thanks for all your help and support!!!!!!!  I wouldn't know what to do without all these forums. 

Mike, when we visited the doctor, he wasn't getting CH attacks anymore.  He still had hemicrania continua but it was bearable.  The doctor prescribed imitrex nasals and injectibles plus verapamil but advised not to take it until his CH starts again.  He also prescribed Indomethacin for the hemicrania but since the pain is bearable, my son has decided to refrain from taking the meds.  For now, he's only been taking Batch's anti-inflammatory regimen and is doing great! The only thing he's been feeling is nauseousness and diarrhea.  Batch advised to hold off on taking magnesium for a few days because he only weighs 130 lbs and is 5'5''. We plan to continue with the regimen and hopefully he will be fine in the plane to London.

 

For flying, Batch did an excellent post, #2589, in START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

I'd also suggest that whilst his pain is bearable now, that he should have all his CH and HC medication with him in case things change whilst he is away. This is so much easier than trying to arrange stuff if things change.

Whilst the current pain may be bearable, he should keep an eye on it as continuous pain, even though it is bearable, can get to someone over time.

Hope he has a great time away and gets to do all he wants to and more. London is amazing to visit, with so many things to see and do.

Thanks for the link and great advice!  Such a big help! 

Hi Anna,
Sorry to read of your son Miguel suffering with CH's. In a pinch, he could try Red Bull energy drinks or any other energy drink of his choice that contains Taurine and Caffeine, this will help as an abortive for some people and worth a try. The concept is to chug it down as fast as possible at onset of attack.

I've reside in LV long before your son was born and have learned a few things on a local level that may assist him. You could go up to North Las Vegas to Air Gas on Losee Rd and rent or purchase an o2 tank. It is a welders supply version of o2 that is just as effective as hyperventilating medical o2. Just do not let Air Gas know you are using it for medical purposes or they will not rent or sell to you. You can obtain a NON-ReBreather mask from the CH Store - yellow tab left side of your computer screen on this website - and have optimask shipped to your home within a couple days or faster. He can get a high flow regulator for the welders o2 tank at any of the Harbor Freight Tools locations throughout the valley. O2 is the fastest, least expensive, safest abortive and welders o2 is just as safe as medical o2 or else these hotels would all be falling down.

You did not mention who your son's headache specialist is? But as far as i've learned, Las Vegas only has one doc very familiar with treating CH's and that is Dr. Morton Hyson, located near UMC. Might be worth a 2nd opinion.

As for CBD oil, I was curious about this also and last month posted a Poll on this website. Unfortunately not many of us CH'ers have tried this, but the Poll is ongoing for others to contribute.

As for London, there is a OUCH website that provides assistance to those in UK.

Pain Free Wishes to your son.  ;)

-Gregg

Hi Gregg,

I’m so happy to hear that there’s someone familiar to Vegas or someone who at least used to live in Vegas with a CH like my son! You are a very big help thank you so so much!!!!! You guys don’t know how everyone is appreciated.  For his headache specialist, he sees Dr. mehdi Ansarinia who others say is the best but I don’t think so. He’s not too friendly and helpful either. I don’t think he has enough knowledge on CH. he didn’t know about the D3 regimen as well. When we went to the appointment, the CH attacks stopped but he still had slight headaches all throughout the day everyday so he was diagnosed as having CH and hemicrania continua. The doctor prescribed indomethacin and told him to take the verapamil only when it starts again. So far it hasn’t started but I will definitely check out Dr. Morton Hyson. I just hope he takes my insurance. Miguel is CH free for now. Wishing and praying it’ll never lead to chronic which is pretty scary. Anyway  about the O2 tank, what do you suggest I tell the welders about why I need it?  :-/

Anna,

When you order welder's O2 do not tell them how you intend to use it.  They rarely ask anyway.  If they do ask, tell them you're getting into metal sculpting and art work.  If they ask if you need acetylene, tell them no, you already have a partial cylinder and the regulators.

There are only a few neurologists familiar with the vitamin D3 regimen as a CH prevent so it's not uncommon to get the blank, clueless look when you tell a neurologist what your son has been taking to prevent his CH.  Have him stick with this regimen and tweak the dosage  up and down on the magnesium, Omega-3 fish oil and vitamin D3 until your son finds a happy combination that prevents his CH and not be loose as a goose.

When your son has been on this regimen at a steady maintenance dose for at least three weeks, call your son's PCP/GP and ask for lab tests of his serum 25(OH)D, calcium and PTH (Parathyroid Hormone).  As long as your son is CH pain free, his serum calcium and PTH are within their normal reference ranges, the actual 25(OH)D doesn't really matter. 

This time of year the pollen is still flying so I'm taking 25,000 to 30,000 IU/day vitamin D3 plus the Benadryl and my last set of labs had my 25(OH)D at 180 ng/mL, but my serum calcium and PTH were still within their normal reference range so my PCP was OK with the results.

Take care and please keep us posted.

V/R, Batch

As always, thanks for your great advice Batch! For now, we’re still taking it slow on the regimen because the effect on him is not too good. He’s 20 and weighs 130 pounds and is only 5’5”. He gets dizzy, too fatigued, has diarrhea and upset stomach,  and loses appetite. I don’t know which vitamin is doing this to him but hopefully we find out before the beast comes back.

Anna

For the "diarrhea and upset stomach", I'd check what sort of magnesium he is getting. This is the most likely cause.

But if you've concerns get him to work with a doctor. Whilst it could be something in the D3 regime, it could also be something else too.

Fatigue could come from the CHs, even when they aren't at maximum levels, especially if they are impacting sleep. Plus if his digestive system isn't working well, as per your description, he may not be getting the nutritional value he needs from his food.

What could also help is to follow a good, healthy diet whilst minimizing processed food.

You guys don’t know how everyone is appreciated. 

Believe me - we do.  We all came here as newbies  and benefitted from the knowledge of others.   I have always said this site probaly saved my life - it certainly saved my sanity, and I thank god every day for it.

Come back and let us know how your son gets on.  I am about 70 miles from London, and he can phone me if he needs help.  Send me a PM if you need my number.

Maz.

I have a question for Batch and Greg:

Batch- just wondering if my son and I can take CoQ10 instead of regular fish oil? I’ve noticed I don’t get as much migraines when I use CoQ10 instead.

Greg- I just had my son try a 1/4 dropper of CBD oil Lazarus Naturals Tincture 750mg but he said it made him feel tired, anxious, and some pressure in his head so that didn’t work.

Hi Anna,
Personally I have no info nor experience on CBD oil as it relates to any condition. But i've been recommended by surgeons for spine issues I have and thought I would post a Poll here on this website as to any insight from those who may have tried it for CH's. Sorry no help, but wanted to at least acknowledge your inquiry. Good luck and if it works, please do add to Poll I created, and share feedback. Pain Free Wishes to your son.

-Gregg


Anna L wrote on Jul 8^th, 2018 at 11:28pm:

I have a question for Batch and Greg: Batch- just wondering if my son and I can take CoQ10 instead of regular fish oil? I’ve noticed I don’t get as much migraines when I use CoQ10 instead. Greg- I just had my son try a 1/4 dropper of CBD oil Lazarus Naturals Tincture 750mg but he said it made him feel tired, anxious, and some pressure in his head so that didn’t work.

Hey Anna,

The best available information says take both the Omega-3 Fish Oil and CoQ10 to prevent migraine headache.  This assumes your son is taking at least 10,000 IU/day vitamin D3 and the rest of the cofactors.

I switched to Bio-Tech's 50,000 IU water soluble vitamin D3 capsules and have found them to be very effective.  I take one of these capsules every 3 days/72 hours in order to stay CH pain free.  That works out to an average daily vitamin D3 dose of 16,667 IU/day.  Prior to that I needed between 25,000 and 35,000 IU of the vitamin D3 liquid softgel form.  One of these capsules every 5 days should be good for your son. 

This is also the least expensive form of vitamin D3 at less than 4 cents/day at an average dose of 10,000 IU/day.  The same amount of the liquid softgel form costs 12 cents/day.

You can order the Bio-Tech 50,000 IU water soluble capsules from amazon at the following link:

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At $36.45 18 cents/count so the 200 capsule option is the best way to go.

Take care and please keep us posted.

V/R, Batch

Batch - are you updating your D3 guide document to include using the water soluble D3 capsules as an option?

Hey Mike,

I sure am...  The next version of the anti-inflammatory regimen will have a new section on the Bio-Tech 50,000 IU water soluble vitamin D3 capsules.

In the last month, I've taken one of these Bio-Tech 50,000 IU water soluble vitamin D3 capsules every 3 days to remain CH pain free.  That works out to an average daily dose of 16,667 IU/day.  Prior to that I needed 25,000 to 35,000 IU/day vitamin D3 to remain CH pain free.

These water soluble vitamin D3 capsules are amazing.  They even work as an abortive for low level CH in less than 30 minutes.

Take care,

V/R, Batch

Batch...

Is Bio-Tech the only vendor for water soluble D3?

Bill,

There may be other water soluble vitamin D3 vendors, but to my knowledge, none that offer 50,000 IU.

Take care,

V/R, Batch

Hey Batch,

(And please excuse me Anna, for hijacking your thread).

I just ordered the 50K water soluble D3. One silly question...I take it you just continue on the same daily basis with the cofactors?

Peter.

Peter,

Any comment, question, reaction will always be very helpful to me and I’m sure to everyone as well. Keep it coming! Pf wishes!

Peter,

You're spot on.  Take all the cofactors daily.  You adjust the vitamin D3 dose with the 50,000 IU water soluble capsules with the interval between does.

For example, I take one of these 50,000 IU capsules every 3 to 4 days in order to remain CH pain free.  At three days the average daily dose is 16,667 IU/day and at 4 day interval the average dose is 12,500 IU/day. 

As the serum vitamin D3 content drops rapidly, I wouldn't use a dosing interval longer than 5 days for an average of 10,000 IU/day vitamin D3.

Hope this helps.

V/R, Batch

Thanks Batch,

For the last 4 weeks or so all of Northern Europe has had uncharacteristically warm weather with no rain at all. Consequently all plant life has been, in effect, in suspended animation.

That is about to change tonight and I expect a Pollen Bomb over the next few days, so I’m getting prepared to do battle with the Beast.

Benadryl and load dosing in prospect.

Thanks again,

Peter.

Hello. Can anyone explain how D3 is water soluble?
Isn't D3 fat soluble or lipophilic?
I ask as we've been taking the regimen with the largest meal of that day for that reason.  ::)

Also I remember reading "D3 dosing schedule matters" so we have a stream of D3 being converted regularly to metabolites we need in the gut and lungs.
Has the D3 dosing schedule been revised in the face of this water soluble version? I mean, do we go back to daily water soluble D3 dosing (10K IU), or do we really leave it up to 3 days between D3 doses (50K IU). That scares me for fear of CH breakthrough.

Batch, in an earlier post mentioned he had come across a 50k capsule of D3, it's in a powdered form and while I believe it's water soluble I can't confirm that. What I can confirm is that since I changed to it (on a 4 to 6 day schedule) I've been PF, something I was not able to accomplish with the 5 or 10k oil caps taken on a daily basis. Could be the bioavailability is better in my case. Due to the changeable nature of the beast, time will tell if it really is better or the beast is just cutting me some slack. I'm into my fifth month now and while I sometimes get shadows and 2 or 3 times have been woken up by a hit they were never bad enough to need oxygen to kill them and I have been able to fall back asleep. The only problem I have now is keeping track of my dosing schedule!
  Just as some people can have bad side effects and others have no side effects from the same drug, it could be this version of D3 is a better fit for me. If you're having good success with the type of D3 you're presently taking I see no reason to change.   
         
        Sean

      

Hey Sean,

Thanks for the feedback...  Near as I can figure... it's the bio availability of the Bio-Tech D3 water soluble vitamin D3 capsules.  Mark your calendar or better yet, get a pill caddy and load it accordingly...

Take care and continue to share the good news with fellow CHers...

V/R, Batch