Hi i just had a look at the ch survey and i was surprised at how many people are not releived by any form of treatment... is that still the case . I am wondering about my own failures to beat the beast ... in the last 30 days i have been cluster free 3 days and that having my imitrex injections, O2 ,verapamil, Vit D ... adding benadryl helped a couple of days then the beast came back ... my teeth hurt like hell , my head is like in a vise .. i am even wondering if i have ch ... Can't wait to see a neurologist  , i do get the pain in my eye  and temple and jaw, teary eys, bloked nose but what i call shadows linger and linger , i don't know  if having fibromyalgia can change the pattern of pain.... Hell i don't know what to do anymore... i can believe there are chronic suferers my god i pray for them. Help.... :'(

Shadia,

Sorry you're having such a rough time and a belated Happy Birthday to you.

Try to see your PCP for the lab test of your 25(OH)D serum concentration.  If it's not close to 80 ng/mL (200 nmol/L) you may need more vitamin D3...  10,000 IU/day may not be enough given your other health issues.

Now is also good time to see your PCP for a checkup with a CBC to make sure you don't have some kind of infection...  If your teeth hurt, when was the last time you were seen by a dentist? 

Infections trigger an immune system response that consumes available vitamin D3 and its metabolites at a high rate leaving too little to prevent CH...  Even a seemingly minor tooth infection can cause CHers a lot of trouble.

Over the last few years, I've been in contact with CH'ers who, while under a physician's supervision, took their 25(OH)D serum concentrations much higher than 100 ng/mL with higher daily doses of vitamin D3, some achieved 25(OH)D serum concentrations as high as 200 ng/mL (500 nmol/L) to achieve a CH pain free state.  Of course they had monthly labs for calcium and PTH.

In order to avoid hypercalcemia, they stopped taking all calcium supplements and avoided calcium rich food types (milk, cheese & other milk products.  They also hydrated with 2.5 liters of water a day.

Pushing vitamin C 1000 mg tablets 5 to 6 times a day and up to 400 mg/day curcumin can also help.  Both are very safe.

Take care and please keep us posted.

V/R, Batch

Hi Batch my last vit D check up was 114 here in Canada that was amonth ago. I am taking 10 000 ui everyday and took 50 000 for five days  last week and was feeling better , my teeth always hurt with my attacks, can you tell me if other people suffer trough over twelve hours with headhache like your head is being sqeezed but  do have pain on one side of face and eye and all the classic symptoms of ch a couple times a day but does not last? The worst for me right now is the pain that never goes away... i Don't eat any dairy. i have been doing the benadryl 50 mg per day , i just dont know what to do anymore today was the worst day ever. Thank you for your help and birthday wishes.

Hey Shadia,

Was that 118 ng/mL or nmol/L?

If 50,000 IU/day made a difference, get with your PCP and let him or her in on the plan with followup monthly labs for your serum calcium and PTH.  I've run my 25(OH)D up around 200 ng/mL under the watchful eye of my PCP...

As long as your serum calcium stays within its normal reference range you can stay at 50,000 IU/day vitamin D3.  If you do this, cut out the calcium supplements completely and lay off all dairy products.  Make sure you're taking at least 400 mg/day magnesium...  It's needed to support the enzymatic processes that hydroxylate vitamin D3 to 25(OH)D3 and on to 1,25(OH)2D3.

I forgot... Where in Canada?  There's a physician up on the Coimbra protocol in Vancouver.

Take care and please keep us posted.

V/R, Batch

Hey Shadia, been reading your posts above.
Sorry to hear that you're experiencing so much pain.
Your cloud on the horizon though ----> Batch is looking after you, you'll be fine

All the best

hi Batch and Thierry, iam close to Montreal far away from Vancouver ,  i think my results are in nml 117 ,i will call the doctor on monday to have it rechecked . I am going to ask a woman question here does a menstruating cycle trigger a or worsen the ch because i have been (sorry guys)bleeding for 20 days now, i am wondering can you have a migraine mixed in with ch?

Hey Shadia,

Most medical diagnostic labs in Canada use a unit of measure for 25(OH)D serum concentrations based on molarity instead of metric weight.  In other words the unit of measure for the 117 is in nmol/L (nanomoles per Liter) instead of nanograms per milliliter. 

The normal reference range for the 25(OH)D lab test is a serum concentration of 75 nmol/L (30 ng/mL) to 250 nmol/L (100 ng/mL).  As the majority of CHers need an average 25(OH)D serum concentration of 80 ng/mL (200 nmol/L) to have a favorable or pain free response to the anti-inflammatory regimen, your 25(OH)D serum concentration of 117 nmol (46.8 ng/mL) is too low to achieve a favorable response to dose of vitamin D3.

Now that you're on the vitamin D3 loading schedule of 50,000 IU/day vitamin D3, your serum 25(OH)D concentration is increasing rapidly towards the target of 200 nmol/L (80 ng/mL).

The following normal distribution curves (bell shaped curves) illustrate the range of 25(OH)D serum concentrations reported by CHers with active bouts of CH before starting the anti-inflammatory regimen and 25(OH)D serum concentrations reported after treatment with a favorable response or a complete cessation of CH symptoms.

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

As you can see, your 25(OH)D serum concentration of 117 nmol/L (46.8 ng/mL) is at the high end of the distribution curve for CHers before start of regimen with active CH and at the low end of the distribution curve for CHers experiencing a favorable response to this regimen.

Soooo... after all that... if you stick with the vitamin D3 loading schedule of 50,000 IU/day vitamin D3 for a total of 8 to 10 days then drop back to a maintenance dose of 10,000 IU/day, I'm confident you're going to be CH pain free and loving life very shortly.

Be sure to see your PCP for lab tests of your serum 25(OH)D, calcium and PTH a month from now.

Regarding a link between menstruation and CH...  There's a clear link between menstruation and migraine headache.  I've checked a number of sources for similar linkage to cluster headache.  In contrast with migraine, little is known about the relation between cluster headache and menstrual cycle, oral contraceptives, pregnancy, and menopause.

That said, we've seen clear changes in CH patterns in women during and after pregnancy so it's reasonable to expect the hormonal changes during menstruation could also cause changes in CH patterns.

My theory of cluster headache and the efficacy of vitamin D3 in preventing CH centers on the role of inflammation and an immune system response.  As inflammation and an immune system response both consume vitamin D3 and its metabolites, it is clearly possible that the inflammation associated with menstruation is consuming sufficient vitamin D3 and its metabolites at a high rate. 

If your serum concentrations of vitamin D3 and 25(OH)D were at the tipping point of keeping you CH pain free at a constant dose of vitamin D3, then menstruation could easily tip the balance leaving too little vitamin D3 to prevent CH.

Again, in any event, you've taken the appropriate action starting the vitamin D3 loading schedule.

Take care and please keep us posted.

V/R, Batch

Wow Batch thanks you really know your stuff !!! ok so i will reload with 50 000 ui for the next ten days and ask for lab work on monday. I am sending you a big big hug from Québec and so much appriciation for your time .

Shadia,

Thank you for the hug...  73 year old Geezers like me need all the hugs they can get... 

What I would really like to see is a post from you starting out with "Woo Hoo !!! I've been CH pain free for a week... and I'm loving life again."

I'm confident I'll see something like that.

Take care and hugs,

V/R, Batch

shadia wrote on Jul 1^st, 2016 at 10:00am:

i am wondering can you have a migraine mixed in with ch?

Yes, there are people with multiple headache types, including the CH / migraine combination.

ok thank you Mike i think thats what is happenning to me, because the pain last to long to be only ch (when i say only i am not minimizing the pain we get during those periods) I can't stand this pain very much longer ...and what is weird is when i finally fall asleep at night, no pain wakes me up (i do take a few medications to help though). Thought of going to the e.r. yesterday, i really thought  i was having a aneurysm or something :o. I am hanging on but getting depressed  :'(

Hi shadia, I do know that many women get migraine with thier periods.
I don't know how it relates to CH because I am not a migraine sufferer.

However, after a bad CH I always have a splitting headache of the "ordinary" kind, which will stay all day if not treated.  It responds to a hefty dose of normal over the counter headache pills.

CH aside, if you have been bleeding for 20 days, you should see your doctor ASAP. I don't think CH would cause that to happen.

Hi Maz thanks for your reply , yes i do fine these last couple of days that the head ache that lingers can be managed with tylenol  2x650 mg ...yesterday was a better day ... i slept trough it  ;D i am getting exhausted. I will be calling my doctor on monday fro my female troubles and lab work . Have a great day !!