Hi everyone, I'm a long time lurker on these threads and have seen great success with D3 in the past.  My past two cycles were greatly shortened by doing the 14 day loading dose recommended by Batch and continuing with the 10,000 IU per day maintenance dose. However, I'm currently in cycle again (second time this year- i'm usually in cycle once every two years) and i have completed the two week loading schedule and my pain is still very severe with headaches mostly in the evening, through the night and the morning.  I added Children's benadryl twice a day beginning on the 14th of September and I have seen no change (for reference today is the 19th). I take all the other cofactors too with the exception of K2, which my health store didn't have. Any idea why the D3 might not be working? I will add that i had a baby in April which triggered my first cycle this year. My baby is not a sleeper so I got really run down caring for her and being up at all hours, which i think allowed my current CH cycle to break through. My husband and my mom are doing their best to help me get some rest right now but we are all struggling. I have resorted to my Zomig nasal sprays for the bad ones at night so i can get some sleep. Oxygen hasn't really been effective for my night hits in the past. It just pushes the headache back a couple of hours at best and i have to be chained to the tank basically.  Any tips, tricks or tweaks you can recommend to my D3 regimen to curtail this cycle are greatly appreciated!! Thanks in advance.

I can't really answer your question because I only started a couple weeks ago myself... but I got my K2 at Walmart. It's only 100 mcg of the MK-7 so I take 2. There were only 60 in the bottle so it'll last me a month.  I just got my multi-vitamin in the mail so I am hoping that once I am on it I will be pain free but I am getting less severe attacks less frequently already. 

Are you working off the current version of the D3 regime? This can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

This has a load of suggestions to try if things aren't working yet.

Similarly for using oxygen are you getting onto it as soon as possible, using a high flow rate (15lpm+) and a non-rebreather mask? Lots of info at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Alicia,

Make sure you get the K2 MK7. It's very important.

Have you had your blood work done ? You should get your
25 (OH) D level checked.

Let us know the results.

Peter.

Thank you everyone for your replies.  To confirm, I am working off of the most current D3 regimen, hence the addition of the Benadryl.   I'm in Canada so some of the cofactors (and indeed the D3 itself) are not readily available. I will track down the K though.  I have used oxygen with the special CH mask purchased from this website with at least 15 lpm flow rate and up to 25. Unfortunately i just don't find it that effective for me but i have a tank coming today nonetheless. i'll give it another try and will review the recommended technique.  I'm getting my D levels checked tomorrow. Should have the results early next week. At this time last year my level was at 208.  Thanks again.

Hey Alicia,

Thanks for the feedback.  Benadryl (Diphenhydramine HCL) can work wonders if you've an allergic reaction cooking away somewhere while taking the anti-inflammatory regimen...  I've found it's best to start out with a hefty dose of Diphenhydramine HCL if your CH are not fully responding to this regimen.  By hefty, I take 25 mg every four hours the first day then drop back to 25 mg every six hours for the next seven to ten days.  Just be careful and not drive at this dose as Diphenhydramine is a CNS depressant and it will make your drowsy.

Regarding oxygen therapy... The best method I've developed involves hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds, (roughly 10 complete exhale - inhale cycles) then inhale a lungful of 100% oxygen and hold it for 30 seconds...  What "Forced Vital Capacity" means is exhale rapidly until it feels like there's nothing left to exhale... There is... At this point you do an abdominal crunch like doing sit-ups.  this will squeze and additional half to full liter of exhaled breath from you lungs that's highest in CO2 concentration.  Keep repeating this sequence until you're pain free.  If you're doing this procedure properly, you'll feel the symptoms of paresthesia - a slight tingling or prickling of your face, lips. hands and lower legs.  That also means 4 to 6 complete cycles will have the CH beast on the run in most cases... so the CH pain will drain away...

Paresthesia indicates you've pushed your system into respiratory alkalosis from the movie "The Andromeda Strain." This means you've jacked your systemic pH up to the alkaline side of neutral and this triggers the vasoconstriction we need to abort CH.

Hope this helps.  Please keep us posted.

V/R, Batch

Batch was quick off the line to suggest that hyperventilating with the O2 may make it a lot more effective.

Using the CH.com mast, 25lpm and hyperventilating I could get my CH aborts to well under 5 minutes, with many around 3 or less.

I hope this works for you.

Hi again, I had my Vitamin D levels checked and they are sky high at 396 nmol/L. I know it is probably still ok but i'm expecting a call from my doctor tomorrow advising me to stop taking D for awhile and I guess I might as well since it doesn't seem to be working for my clusters anymore. The online test results had a caution marker and a note saying that results higher than 250 nmol/L are associated with vitamin D toxicity. i'm depressed to say the least. I really thought I had found an easy way to manage this condition. I'm losing out on precious time with my baby while i struggle through this bout and i'm really sad. I'm still getting hit hard every afternoon and evening. The oxygen doesn't give me prolonged relief but it is helping some and the recommended technique seems to work a bit better than breathing alone. I wasn't able to get a regulator that goes up to 25 lpm. Does anyone know of a good place to order one from? Thanks for all your replies.

Hey Alicia,

Thanks for the update and sorry the CH beast is still jumping ugly.  A 25(OH)D serum concentration of 396 nmol/L is not... repeat NOT TOXIC... unless your serum calcium is above its normal reference range.

I maintain my 25(OH)D between 350 and 400 nmol/L and have pushed it as high as 500 nmol/L with no adverse effects as my serum calcium stayed within its normal reference range and my PTH was in the lower third of its normal reference range.

If I were still getting hit with CH and my 25(OH)D was above 250 nmol/L, I would start a course of Benadryl (Diphenhydramine HCL).  I take 25 mg every 4 hours and 50 mg prior to bed.  I stay on the Diphenhydramine for a week to 10 days then taper off by taking 25 mg every 8 hours to see what happens.  If there are no indications of CH, I stop the Benadry completely.

Just be careful and not drive while taking Bendryl (Diphenhydramine HCL) as it will make you drowsy.

I also drink lots of water like 2.5 liters/day. 

Take care and please keep us posted.

V/R, Batch

Alicia M. wrote on Sep 25^th, 2017 at 8:47pm:

I wasn't able to get a regulator that goes up to 25 lpm. Does anyone know of a good place to order one from? Thanks for all your replies.

Since you're in Canada, hopefully someone reading this in Canada may be able to provide a good place.

Otherwise Google has a few suggestions - https://www.google.co.nz/search?q=canada+oxygen+regulator+25+lpm.

Make sure you get the right regulator for the oxygen cylinders you have, with more detail on this at - http://www.clusterheadaches.com/O2/index.html.

Some potential sites are:

• START 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 PRINTPAGE
  
• START 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 PRINTPAGE
  

Most seem to be around CD$140 or so, but the first one looks cheap at CD$35.

Hope you can get something that works well for you.