Hi Everyone,
Figured we should introduce ourselves seeing as we have been stalking the boards for a while and recently joined. My husband is a Clusterhead for 23+ years. As he has gotten older the cycles have gotten worse, with this year being the most outrageous (Left and Right side attacks simultaneously ). We had found a great neurologist who had been working with him wonderfully only to be notified at his last appt. that he is retiring >:( I am his wife of 8 years and their for his cluster-supporter for 8yrs. We have 2 boys (4 and 6mos) and they are struggling to understand what is happening to daddy every time he has an attack. I feel helpless in trying to help my husband and help our 4yr old understand. We are very pleased to find this site, finally a support group and ideas. My husband is going to start the D3 today and you all have given me a lot of great info to bring to our neurologist at out next appt.
Thank you all for this site!
The Conways :D

Welcome to the board glad you stuck your head in. Like your hubby, mine started to get really bad in my late 40's....pissed me off because there is one theory that says they're supposed to mellow out as you get older! 3 years ago I was getting creamed regularly and even my oxygen stopped working. At Batch's suggestion, I started what was then the PH altering regimen....which was a supplemental routine designed to alter your ph levels to make you less susceptible to hits. That eventually morphed into what is now the D-3 or "Batch" regimen. I am now over 3 years cycle/pain free. I stay on the regimen year round and never intend to go off. After 35 years of beasty chasing me it's so nice to imagine a life where he never visits again. Hope it works as well for your husband.

joe

Lady Conway, your husband is a lucky man to have your support. We love our supporters here.
Children sometimes blame themselves for the ills of the parents. They might feel as if they have done something wrong. In plain words you can explain to the little one he is not at fault. Tell him dad will be ok and back with him soon. Try to find something for him to do to help, like get a ice pack for dad, turn the TV down low, play quietly. If he has a 'job' he will feel better because helping is a good thing.

Wecome to CH.com...  You've come to the right place...  Your husband is very special... not that many double hitters around...

That said, we know what you, your husband, and your two boys are going through.  Kids that young can be very sensitive and observant of problems like this and frequently become very good supporters.  Once they understand the situation, they'll spot an approaching cluster headache before your husband is even aware one is coming and urge him to start on his oxygen or get out the imitrex.

The good news is your husband is starting one of the more effective treatments when he starts taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

Over 400 CH'ers from here at CH.com have gone on this regimen and to date, the raw efficacy is 80%

If possible, see if his PCP or neurologist can schedule him for the 25(OH)D lab test.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is a serum concentration of 30 to 100 ng/mL.  This test is important and it's ok to have it done even after starting on the anti-inflammatory regimen.

When the lab results come in, be sure to ask for the actual serum concentration of 25(OH)D as too many physicians will interpret 31 ng/mL as "Normal."

While a serum concentration this low is sufficient to prevent rickets, osteoporosis and osteomalacia, it's far too low to prevent cluster headache.  We need to have our 25(OH)D serum concentration up in a range of 60 to 110 ng/mL.

If the results come back close to 20 ng/mL, taking a loading dose of 50,000 vitamin D3 once a week on top of the 10,000 IU/day will help build serum 25(OH)D much faster.

While you're at it, you should ask for this lab test as well.  The odds are you're vitamin D3 deficient just like your husband.  If so, you need to start taking this regimen as well. The health benefits are numerous.

Check out the following link at vitaminDwiki... After reading through some of the studies and articles on this website, I'm confident you'll want to start your boys on vitamin D3.

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Please feel free to ask questions and do keep us posted

Take care,

V/R, Batch

Thank you all for your words of support, encouragement, and information. There is nothing like the feeling of knowing there ARE people out there who understand what we are going through.

Question for CH'ers - do any of you get shoulder pain during an attack? My husbands shoulder (on the side of the hit) gets very sore and pain radiates down the cord/muscle along the spine. His Neuro told him this has nothing to do with CH and referred him to a specialist. We have not followed up yet, seeing he is still in the throngs of the beast and the pain only occurs with hits - wanting to know if anyone else feels this or is the doctor right?

Make the Madness stop
Conway