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Discouraged D3 regimen not working as well as I thought


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Checking back in. This weekend I kept weaning off prednisone hoping the D3 Regimen and Benadryl were decreasing the intensity of the attacks. Last week I had shadows every afternoon between 630 and 8. But Ice and quiet worked. It short time on 02 and they didn't return. So I moved down to 30 on the prednisone and I got hit hard Saturday and Sunday morning. A bunch of shadows and a 7. I used 02 and no more for the day. No headache all day Monday. Then today I just got rocked. 7 to 8 while I was at work. I fought it off with ice for a while but in the end I had to use 3mg injectable.  As a teacher I can't just house 02 while I have a class. I feel back to square 1 in a way. I feel like the prednisone was keeping it at bay and now that I'm weaning they are coming back strong.  And they are only gonna get worse. Ive been consistent with my benadryl too. Where do I go from here? I'm thinking about bumping back up to 60mg of prednisone for a couple days. Then weaning again when I have a few days off next week. I can cope better with the O2 at home. Now I have to detox from the sumatriptan again. I felt like crap all day about it. I was hoping to try to bust on Sunday but this detox is hell. I didn't try the energy drink abortive yet.  What energy drink should I try next time?  Is there anything else I can do to get off this pred and not have such intense attacks? 

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Coming off of Pred means hits for most people. It is a great temporary drug to help with the pain, but continued use is not a good idea.Does your doctor have you on Verapamil? Pred is most commonly used as a 'bridging' medicine to take until the Verap kicks in. And you are right, the Pred was just keeping it at bay. Bumping back up to 60mg will help, but only until you drop it down again. For some the CH returns at 40mg and some at 20mg. All variable. And you do need to wean off of it to bust.

Any Energy Drink or Shot is fine. Some use strong coffee. I have often used V-8 Fusion Energy. Just grab one at the first twinge of a hit and drink it down fast. If you can, grabbing a cold glass of water with lots of ice can help. Use a straw and aim the straw at the palate on your CH side. They work very well when taken early enough. Many of us can drink them at night and still sleep.

How long have you been on the D3? It can take a couple of weeks for most people. .

Detox is hard. For most everyone.

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I totally understand your predicament.  You need to be head-zup teaching class and the CH beast makes that difficult to impossible depending how ugly it jumps.  It's your call on what to take to get through classes.  Do what you need to do... 

Having the CH return at progressively higher severity attacks as you taper off the prednisone tells us you're still fighting a significant inflammation.  Adding a 1000 mg tablet of vitamin C along with the Benadryl (Diphenhydramine HCL) every 4 hours has worked nicely for CHers in similar situations...  A 1000 mg/day of Turmeric (Curcumin) can also be helpful in keeping the CH beast in check as it's a natural anti-inflammatory agent as well.

I would also bump the vitamin D3 dose to 40,000 IU/day for 5 days then drop back to 20,000 IU/day as a maintenance dose to see what happens.  Doing this will likely elevate serum 25(OH)D by another 20 ng/mL.  Again, that's no biggie...   I've maintained my serum 25(OH)D at 140 ±50 ng/mL to stay CH pain free for the last few years and that includes jumping on the Benadryl (Diphenhydramine HC) for a week to 10 days during allergic reactions at least twice a year since spring of 2015. 

Make sure you're drinking 2.5 liters of water a day...  In all the hassle and confusion of a CH flurry, with the CH beast tapping out a tarantella on your eye several times a day...  the need to drink enough water falls in a crack...  I keep my water in an empty 2.63 liter NON-GMO Simply Orange plastic bottle and drain it completely every 24 hours.

If you do all this and the CH beast continues to jump ugly, we need to take a look at diet.  No sugars of any kind and no artificial sweeteners including Stevia.  No gluten, peanuts, corn, soy, pasta or any food from a can or jar unless it says "NON-GMO" and "No Sugar Added."  I try to cook and eat whole foods from the "Organic" produce section along with free range/organic beef, lamb, chicken and eggs.  I've a freezer full of wild caught, fresh frozen vacuum sealed salmon, cod and halibut fillets from my Alaska fishing trips.

The NON-GMO food types are gaining in popularity.  It's only been in the last year or two that governments in Europe have contemplated a ban on foods containing Glyphosate... the organophosphate herbicide and dessicant made by Monsanto under the label "Roundup".  In October the EU banned Monsanto lobbyists from entering the European parliament during deliberations on a ban of all Glyphosate products.

What Monsanto has done is diddle (genetically modify) the genes of selected crops to make them resistant to Glyphosate, giving them the title "Roundup Ready."  This allows these crops to be sprayed with Roudup to kill the weeds and not the genetically modified crops.  In theory, this sounds like a good idea...  However, given the basic laws of diffusion, these plants take up the Glyphosate so it is present in all Monsanto GMO crops including: corn, wheat, oats, barley, beans, legumes, fruits some nuts and the list goes on... 

Monsanto has claimed these genetic modifications only affect plants and not mammalian genomes including the human genome. The Glyphosates in these crops pass through the body unchanged so do not affect mammalian physiological functions.  While this is true, it fails to account for the human microbiome... large colonies of friendly (symbiotic) bacteria and biota living in our GI tracts.  They are members of the plant kingdom...  Accordingly, the microbiome is affected by Glyphosate... and it kills off these friendly colonies of bacteria and biota...  As roughly 70% of the human immune system is centered around our GI tract and microbiome, Glyphosate can and will damage or destroy our immune system with continued exposure.

Lab tests conducted by Anresco were done on 29 foods commonly found on grocery store shelves. According to the report, glyphosate residues were found in:

  • General Mills' Cheerios at 1,125.3 parts per billion (ppb)
  • Kashi soft-baked oatmeal dark chocolate cookies at 275.57 ppb
  • Ritz Crackers at 270.24 ppb   (Uh Oh).

While parts per billion (ppb) might sound like a very minute quantity... researchers have found Roundup can cause liver and kidney damage in rats at only 0.05 ppb, and additional studies have found that levels as low as 10 ppb can have toxic effects on the livers of fish.

The other, more insidious property of organophosphates like Glyphosate is they do not break down and will lay around for years until taken up by another GMO plant. That means the GMO Roundup ready crops used as feed will result in Glyphosate being concentrated in the animals eating that feed... butter, eggs, cheese, farmed (shrimp, prawns, tilapia, catfish, cod, and salmon), chicken, beef, lamb, pork, bacon and sausage...  Oh No...   

Why all this discussion on Glyphosate... Simple, cluster headache has many triggers...  No sense in adding more when they can be avoided for the most part.

Sooo...  I stick with wild caught fish and shrimp, free range critters, and NON-GMO organic crops.  I even buy NON-GMO highfructos-free ketchup

Take care and please keep us posted.

V/R, Batch

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Your right about the water.  I only drink a few classes of water during the day. I forget when the headaches are bad. I will get myself a big bottle And refill it as a reminder.  And I will up the dosage in the d3 and add in the other elements. Unfortunately I tried the diet avenue for a good 6 months in my 20s and It did not make a difference. I do try not to over do chocolate or sugar during high cycle. Normally I only cycle in the spring and summer. It's hard to point to diet when for years it's only been a 2 month cycle. It's only been the last year they seem to last. I was on verapinal for the last 2 years. And sumatriptan. I want to try doing this without the use of those drugs as I feel they have contributed to prolonged cycles. 


Spiney, thank you for the reply. I'll try the ice water and brain freeze method. I need to set up a thermos or something for when I'm out and about. They come on so fast that within 15 minutes they can be full blown. I feel like I can cope well at home, but my classes in the a.m are rough. I teach at a Highschool so they are old enough to be respectful but getting ice packs and ice cold water would require me to leave the room or send someone out to get it. I have been on the D3 for about 3 weeks now and my levels are up. 

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I'm starting to take vitamin d regularly again after a few years of not taking it.  It's been about a week but I'm not feeling any differences in pain yet. I wasn't sure if it was what made the difference the first time but I feel it did help the intensity and frequency that I was getting hit. 

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It took a while to START working , and when I stopped taking the D3 it took awhile to STOP working so I think it's easy for people to get discouraged with the regimen. My advice is be consistent taking it even if you don't think it's working.  BATCH, it's good to see you posting still. 

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