Hope everyones doing alright... quick question. If you read my "getting to know ya" you know I was recently diagnosed. I was getting like 8-9 on the kip scale pain. Since I have been on treatment the cluster has not fully ended. Instead, now I am getting attacks that are 3-5 on the kip scale but a HORRIBLE pain in my neck on the same side that I would classify as approx a 9. The neck pain is horrible and it comes and goes with the attacks so I am assuming its not something unrelated.

I get similiar types of pain. Most of the time my HA's aren't above a 6, but the associated neck pain can be much worse. Sometimes icing the neck will help.

Hey Brooke,

Neck pain associated with cluster headache is entirely possible...

I suspect you are vitamin D3 deficient and that deficiency is contributing to the frequency and severity of your cluster headache attacks.

You need to see your PCP and ask for the lab test for 25(OH)D, the serum level metabolite of vitamin D3.  The normal reference range for 25(OH)D is 30-100 ng/mL, but we've had CH'ers with active CH test as high as 42 ng/mL.

The really exciting news is the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is better than 70% effective in preventing cluster headaches...  CH'ers who have gone pain free on this regimen and then had the lab test for 25(OH)D have all had results come back between 60 and 110 ng/mL.

The following chart illustrates the results of data collected from CH'ers here at CH.com:

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The basic anti-inflammatory regimen is simple...  I buy the supplements shown below at Costco for $35 or 20 cents a day for a 5-month supply.

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Most CH'ers go pain free on this regimen in less than 10 days to two weeks.  Some go pain free in as little as 12 to 24 hours...

The other upside of this regimen is it's healthy for you with no adverse side effects...

If you want to see what other CH'ers are saying about their experience with this regimen click on the following link:

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This link has been viewed 42,427 times since 10 Dec 2010...  That works out to nearly 85 times a day...

Take care and please keep us posted.

V/R, Batch

I'm D dificient (sp?) and take 5000IU . 

Terra Ann,

What was the result of your last lab test for 25(OH)D?

If you're still having CH and migraines...  Up your vitamin D3 dose to 10,000 IU/day along with calcium and the cofactors, magnesium, zinc, vitamin K2 and boron...

If the headaches persist..  Up the vitamin D3 dose to 15,000 to 20,000 IU/day.  My wife Joyce was a chronic migraineur for over 20 years...  She's been taking 15,000 IU/day vitamin D3 for the last 16 months and has been pain free the entire time... 

Take care and please keep us posted...

V/R, Batch

That pain in the neck is where the trigeminal nerve exits the skull and goes up behind and around the ear and to the face where it branches into 3 and then into hundreds over the entire side of the face and skull.
Cdog's suggestion to ice it may help.

Neck pain/stiffness is also very common for me during cycle.  I also found most relief using cold therapy.  My preference is a bag of frozen peas. 

Maybe you respond better to heat such as applying a hot washcloth, shower pressure, etc?  Try each and post results.

Firm massage usually feels good and provides some relief.

and neck exercises have also helped me resulting in less stiffness, less pain. 

i.e. gently move neck side to side,
gently forward-backward,
gently rotate clockwise/counterclockwise.

Hope this advice helps. ;)

-Gregg in Las Vegas

If cold is what you dig (like me), try a re-freezable ColdPac:

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The black polyurethane ones last forever, and won't squish mushy, lukewarm pea goo out of little holes that develop in pea bags over time.

They stay colder much longer than frozen vegetables. We keep 4 of them in our freezer at all times.