Hello,

I had CH on and off from the age of 21 - 28 and up until last week they have been gone for 7 years.  I've always had borderline blood pressure issues and I figured the trigger was caffeine raising my BP and causing the headaches.  I don't drink coffee but I averaged about 1 soda per day.  So I gave up caffeine 7 years ago and was CH free.

About a year ago I started on doTerra's Life Long Vitality supplements (half dose) and it lowered my BP to a normal range 115/70.  6 months ago I added caffeine back into my diet averaging 1 soda per day.  Then all hell broke loose 8 days ago.  It went like this:

Day 1:  CH hit right before bed around 9pm (2 hours)
Day 2:  Same exact thing (2 hours)  Stopped caffeine.
Day 3:  CH woke me up at 10:30pm (2.5 hours)
Day 4:  Same exact thing (3.5 hours)
Day 5:  CH during the day 2pm (30min) then again 10pm (1 hour)
Day 6:  Started Vitamin D3 (10,000iu)  CH woke me up at 10pm (5 min)
Day 7:  20,000iu D3, No CH
Day 8:  20,000iu D3, No CH
Day 9:  (Today)  20,000iu D3, Shadowing but no CH so far

Shadowing between headaches started on Day 4 and is still there as of today.  I think the sudden stop on caffeine made the CH worse for me on Day 4.

Back in October I was feeling tired for a bit so I went to my PCP and got a complete blood test.  On 10/24/2014 I had these results:

Vitamin D-25OH = 34 ng/ml

From what I read on here, that is rather low.  I went to the Dr. 3 days ago and she diagnosed my CH and gave me sumatriptan auto-injections, ordered an MRI, and ordered me O2.  I haven't taken delivery of the O2 because I'm not sure I'll need it.

My plan at this point is to continue the D3, stay far away from caffeine, take the full dose of my supplements, and pray for the best.  Since my headaches mostly attack me from a sound sleep I don't think the sumatriptan will help much. 

Is there anything that I'm missing to help prevent these things?  Anything I can try to get the shadows to stop?  I've had shadows for 4 days and they seem to be decreasing in pressure but I can still feel them...  One last question, my supplements have a lot of stuff but I checked and they don't have vitamin K2.  Should I also be taking K2?

Thanks!

Ryan (35 year old male, Albuquerque, NM)

Caffeine helps me a lot...

Hey Ryan,

Welcome to CH.com and the anti-inflammatory regimen with vitamin D3.

It appears you are off to a good start.  Given your starting serum concentration of 25(OH)D and that you've taken 70,000 IU vitamin D3 through today, you can increase your loading schedule to build your 25(OH)D up to 80 ng/mL a lot faster by increasing the loading dose to 50,000 IU/day vitamin D3 for the next 8 days. 

You'll also need to increase your magnesium intake to 800 mg/day while loading.  I suggest splitting the magnesium dose to 400 mg in the AM with food, and 400 mg in the PM with food. Doing this will lessen the chance of GI tract discomfort and osmotic diarrhea.

At the end of the 8 days at 50,000 IU/day vitamin D3, drop the dose to 10,000 IU/day.  That should be a good maintenance dose to keep your 25(OH)D around 80 ng/mL.

A month after starting this regimen, try to see your PCP for another lab test of your 25(OH)D.

Regarding the vitamin K2, I buy mine from either Amazon or iherb.com.  I order the Life Extension Foundation (LEF) Super K with advanced K2 complex.  It's formulated with vitamin K1, and the vitamin K2 complex MK-4 and MK-7.

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There are 90 capsules per bottle so I order 4 bottles at a time for a year's supply.

LEF has an excellent web page explaining the benefits of vitamin K2 at the following link:

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If you have any other questions, fire away.

Take care and please keep us posted.

V/R, Batch

Yes, there is one thing you are missing. Get the 02 - you will need it.

Sumatriptan injections are by far the best abortive there is, but you can only use 2 per day. Also they are expensive, and as you are in USA you may have insurance issues trying to get them. Some folks can only get 2 per month.

It sounds like your doctor is on the ball - lucky you. When you get the 02 there are 2 vital things you need to know for it to work properly. You must have a flow rate of at least 15 litres per minute and a non-rebreather mask.

As the sumatriptan may not be available freely due to cost / insurance etc. use the 02 when you are at home and save the injections for when you are out. I never leave home without them, even when I'm not in cycle, just in case.

The constant shadows can be easily dealt with by using 02 for a few minutes, and often, if you are quick enough will prevent it from ramping up into a full blown CH. 02 is also far safer than any drug, and you can use it as often as you want to. I have only used 2 injections in the last 16 months, thanks to my 02.

Back to the sumatriptan, it often helps to stockpile a few when you don't need them. That way you will be prepared, and it helps to spread the cost.

Hope this helps
Maz.

Thank you so much for the information and help!

As Batch suggested, I loaded 50,000iu today and I started the magnesium yesterday.  To continue my timeline:

Day 9:  20,000iu D3 + 480mg magnesium, No CH
Day 10:  50,000iu D3 + 480mg Magnesiun, No CH so far today.

After 7 years I can't believe that I am dealing with these again.  It hit me when I was least expecting it. 

Maz, that's a great point about saving the sumatriptan and using the O2.  With insurance the suma cost me $10 but I hadn't considered how many I could get in a month...  Yeah my PCP is super helpful and is open to me suggesting how I want my treatment to go. 

I have been 3 days CH free and I truly feel blessed.  I had 7 CHs in 6 days and it brought me to my knees and I didn't know if they would ever stop. 

This is a fantastic site and a wealth of information for people dealing with this debilitating condition.  I explained to my wife that when I was younger I'd hit myself in the face to try and feel the difference in pain.  During a CH, no matter how hard I hit myself in the face or head, it had zero impact on the level of pain that I felt. 

Thanks to everyone again for the information, support, and this site.

Ryan

Hello,
I am new to this group.  I am in the midst of the third episode of my life.  First was during Fall of 2011 in Milwaukee.  The second was in Spring of 2013 in Japan.  And now, Spring of 2015.  Seems to fit the pattern of seasonal change.  I think my wife has no idea of the pain-thinks its just a headache. 

This time seems worse than the others.  I take Suma and it does work but the side effects are pretty bad--wipes me out.  Went to Korean neurologist today and he gave me a different triptan to try--I do not have high hopes.  I wonder if I should ask for injectibles??Using the pills now...  Should I try and get an oxygen tank?  Have my testosterone checked.  Acupuncture?  As a scientist I usually scoff at "oriental" medicine--but at this juncture, I will try ANYTHING.  One silver lining I guess is that I quit drinking for reasons I am sure you all know too well.
Does the water every hour thing really work?  Trying that now.....

Anyway, it is nice to know I have company and that there does seem to be a way to have a life with this terrible affliction.....

Hi and welcome,
Spring and Fall are common times for the beast to strike
amongst us clusterheads myself included. If you shoot
Batch a PM he'll guide you through the vitamin D3 regime
which has lots of us on here pain free, myself included.

Hoppy.

Snujohn,

Welcome, you're among friends now.

Get the O2. You can read up on it at the link on the top left of your screen "oxygen info". 

You will find a thread entitled "123 days...." Under the treatments and medications section which gives all the detail you need to study the D3 regimen. A lot of reading, but well worth the effort.

Keep posting, keep asking, keep well.

Peter.

Hi Snujohn and welcome

Sumatriptan (imitrex / imgran) tablets are worse than useless as they take too long to be absorbed. The injections are a lot, lot better, normally effective in about 5 minutes or so, so do ask for the injections.

Also look into using oxygen. Read up about it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Using 25lpm and a non-rebreather mask I can kill off a CH in about 5 minutes.

Testosterone can be an issue with some people, so if you think it might be an issue, get it checked.

Acupuncture is unlikely to help, I'd give this a miss.

Passing on alcohol is probably a really good idea as it's a common trigger for most people so best avoided whilst in cycle.

I'm not sure how effective the water trick is to be honest, it seems to help some people.

Mike NZ wrote, Sumatriptan (imitrex / imgran) tablets are worse than useless as they take too long to be absorbed.

Not altogether true! I found if you take them at the first
sign of a CH approaching with a strong hot cup of coffee
the beast is aborted within 5mins.

Hoppy.