My husband's last cycle started last year at the end of September. We're working hard to try to ever keep him from getting another one, but I've noticed some signs recently. He's not sleeping well. His happiness level seems to be taking a dip. Frustration levels seem to be rising. Dark circles under his eyes. Shadows just starting to knock as of 2 days ago. I know what this means for him. I know what this means for me (i.e. BATTLE MODE), but I was wondering if the rest of the supporters notice changes in their sufferers before a cycle starts and what they are? Curiosity, I guess is mostly why I ask...

I'm trying to catch back up, took a couple months off- but I'm hitting the forums now trying to glean anything I missed.

Thanks!

I wish I could help ya Lauren, but my hubby has been chronic for almost as long as we've been together and before that I had no clue what was going on in the spring and fall.  Plus my hubby is pretty laid back.  I think when he gets frustrated it's because of me  ;D

Here's hoping that it's just a few passing shadows and that it doesn't end up being a full blown cycle.

Hi Lauren, I notice too when JOe's going to go on cycle. His eye droops, and other little subtle changes. Fortunately we keep O2 year round. I'll notice him making sure it's in the trunk when we go places, imitrex is in the glove box.

His last cycle was shorter than the previous one, and he had started Batch's routine mid cycle. Am hoping since he's been religious about the routine since then that maybe CH will skip us for the holidays this year.

"that maybe CH will skip us for the holidays this year."


Oh that would be nice!!! :)

I hope that the beast skips Joe for the holidays and forever and ever  :)

what is batchs routine ? sorry new here ,, thanks

Didgens look under Medications, Treatments, Therapies then scroll down to 123 Days PF and I think I Know Why.  Lots of great info there  :)

Well, just an update:

We've increased his D3 and gotten much more diligent and consistent on Batch's formula. As of today no more shadows and no full hits. Other signs seem to be disipating as well- his left eye isn't droopy anymore and his mood is better.

Won't say we dodged the bullet yet, and I won't be putting the oxygen tank in the garage just yet, but signs are hopeful. And to be able to say THAT after where we were last year- well that's amazing.

Thanks all!

Damn Lauren, I sure hope that continues. [smiley=thumb.gif] Gives me hope Batch's regimen just might get me thru the winter!

Joe

Hey Lauren,

Thanks for the update...  Your husband's initial response to the anti-inflammatory regimen sounds promising.  Please keep us updated.

Using the anti-inflammatory regimen before a CH cycle makes good sense...  I've been working with some of the experts experienced in vitamin D3 therapy and they suggest increasing the daily intake of magnesium from all sources including supplements to 500 mg. 

Accordingly, I've included their suggestions in the latest anti-inflammatory regimen shown below:

Suggested Instructions For Use, Basic Ingredients and Daily Dosing for the Anti-inflammatory Regimen

Instructions  See your doctor to discuss this regimen and to have your 25-Hydroxyvitamin D, a.k.a. 25(OH)D level tested.  This is the serum level metabolite of vitamin D3.  The normal reference range 25(OH)D levels used by most medical labs is 100-200 nmol/L (40-80 ng/mL).  However, from the data we've collected from users who have had this test done after going pain free, it appears the optimum reference range for cluster headache sufferers is 150-225 nmol/L (60-90 ng/ml).  Ask for the Chemistry Panel + Complete Blood Count (CBC) lab test as well to make sure there are no indications of other comorbid conditions.

10,000 I.U. vitamin D3 a day is a therapeutic dose.  Lower the daily intake of vitamin D3 to 5,000 I.U. after three months and have another set of lab tests done for 25(OH)D as well as Chemistry Panel + Complete Blood Count (CBC).

If you take more than 10,000 I.U. vitamin D3/day you need to have a series of two lab tests for 25(OH)D done a month apart to determine how fast you're building reserves.  This is important as the the Vitamin D3 Council has studies that show an otherwise healthy body process vitamin D3 at 3000 to 5,000 I.U. per day.  In addition, a few CH'ers who have had this test done after 3 months on this regimen had there 25(OH)D levels come back at 225 nmol/L (90 ng/mL) to 295 nmol/L (118 ng/mL).

Although levels this high are above the optimum range for 25(OH)D and we don't know if or how much this increases the capacity of this regimen to prevent CH, they are well below the toxicity threshold level of  500-750 nmol/L, (200-250 ng/mL).  You would need to dose at 40,000 I.U. vitamin D3/day for two to three months to reach these levels of 25(OH)D.   See the following link at the Vitamin D Council web site:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Ingredients and Dosing.  I buy the following anti-inflammatory ingredients at Costco for $35...  This provides a ~6-month supply at 20 cents a day... 

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

Vitamin D3 - Try to obtain the 5,000 I.U. liquid softgel capsules - Take 10,000 I.U./day

Omega 3 Fish Oil - 2000-3000 mg. or enough to get at least 360 mg. EPA and 240 mg. DHA/day.  EPA and DHA are the two primary Omega 3 fatty acids.

Calcium Citrate - (500 mg. calcium) As shown above, two of these tablets are formulated with 800 I.U. vitamin D3, 60 mg. magnesium and 10 mg. zinc.  If you can't get a single tablet formulated with these ingredients you'll need the following:

  Calcium Citrate - take enough to get 500 mg. calcium/day

  Magnesium - 500 mg./day.  If you take the above tablets, take an
                                                     additional 400 mg magnesium/day*
  Zinc - 10 mg./day

* Note: most over the counter magnesium comes as the oxide.  Magnesium taurate, glycinate, citrate, and gluconate have demonstrated higher absorption and bioavailability.  Magnesium malate and glycinate are considered by many to be even more effective supplemental forms.

Some user's go for transdermal magnesium chloride or magnesium oil. Instead of oral administration, the magnesium chloride is applied to the skin where it is absorbed directly into the cells, bypassing the digestive tract. Due to this, magnesium chloride is said to be the most readily-absorbed form, though there have yet to be any studies performed.

For the first two weeks take everything in the morning except for the calcium citrate.  Take it an hour prior to bed time with a glass of lemonade or any fruit juice high in citric acid.  After that take everything in the morning.

Response times for this regimen can take as little as two days and as long as a month or more.  It all depends on the level of 25(OH)D.  Most cluster headache sufferers are pain free by the end of the second week on this regimen.

Be sure to see your doctor three months after starting this regimen to have another set of labs for 25(OH)D, Chem Panel + CBC.  Most cluster headache sufferers will need to drop the daily vitamin D3 to a maintenance dose of 5,000 I.U./day after three months on this regimen.

This is a healthy regimen with no adverse side effects or significant contraindications, so you may want to stay on it forever.  It should prevent further episodes of cluster headaches.  It's also good for the bones, heart, eyes, skin, and the list goes on...  Discuss it with your PCP or neurologist.

Take care,

V/R, Batch

What an absolute wealth of information- thank you so very much!

Hey Lauren, I DEFINATELY see a change in my husband before a cycle. Key observation is a raise in his level of aggitation. He is more reactive to minor disturbances, so much more irritable than normal, almost unreasonably irritable. Definatley dark shadows under eyes and a puffiness occurs in his eye on right side. Bob is currently in cycle, started early July which is off for him but knew it was coming due to his aggrevation level. We haven't been able tobreak this cycle yet. Started Batch's therapy in August, had a week or 2 of reduced levels but 2 weeks later he is full blown again. Neuro is still trying options. Hoping and praying for relief.
diane

Just another update- Lucas got his one and only shadow requiring oxygen when he reduced his D3 to 5000 IU a day for a couple of days there. He upped it back to 10,000 IU and not a shadow since. (that has been a couple of weeks ago now.)

We're creaping up on when his cyce ended last year, we'll ramp down Batch's formula to a maintenence dose here soon to give it another test.

One, just ONE usage of the O2 tank this cycle thus far. I'd say "Do yall know what a big deal that is?!" But you DO know! It's a big deal!

One last note,  he drank beer and red wine with impunity this go round- they didn't trigger anything- no headaches, no shadows, and he had to abstain during his cycle last year. Even a little red wine used in a spaghetti sauce triggered a headache last time.

Lauren

Damn Lauren that's great news! My cycle started Thanksgiving day last time around, holding my breath this go round to see if "Batch's Magic" will keep beasty at bay.

Hoping this is the end of cycle for him.

Joe