Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 
Send Topic Print
The D3 regimen is not working... again (Read 12122 times)
Visperas
CH.com Junior
**
Offline


I Love CH.com!


Posts: 64
Re: The D3 regimen is not working... again
Reply #25 - Oct 7th, 2018 at 4:19pm
 
Sorry, forgot to mention that I've been taking some extra D3. About 4 loading doses of 35.000 IU aprox. Is that enough? Should I take a hefty loading dose in the coming days?

And the last thing, I think, I'm planning on getting a blood test this week to gather more info. Beside the three classic paramenters (PTH, Calcium and D25-OH), should I ask for something else that might help me find a way out of this?

Thanks!!
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: The D3 regimen is not working... again
Reply #26 - Oct 8th, 2018 at 1:01pm
 
Visperas,

As long as my serum calcium and PTH are within their normal reference ranges, that tells me I can take a higher vitamin D3 dose for a few days to a week to see if that gets my CH back under control.

Switching to the Bio-Tech D3-50 water soluble vitamin D3 is still an option.  I've been taking it for over four months at one capsule every 5 to 7 days and have been CH PF the entire time.

If your CH continue, you might want to ask your PCP about lab tests for allergies or a consult with an allergist or immunologist.

Staying hydrated with 2.5 liters of water a day is one of the best stand-by measures if an allergy is suspected.

Take care and please keep us posted.

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Visperas
CH.com Junior
**
Offline


I Love CH.com!


Posts: 64
Re: The D3 regimen is not working... again
Reply #27 - Oct 9th, 2018 at 9:53pm
 
OK. I'm gonna do the Benadryl dosage you mention and I already ordered the D3 from Amazon.  So, nothing extra to look for in the blood test? I think I'm gonna hold on with the allergy test 'cause I think those are expensive but I'll consider it if this keeps at it. Hopefully it will be over soon.
Back to top
  
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: The D3 regimen is not working... again
Reply #28 - Oct 10th, 2018 at 3:27am
 
Visperas,

Be careful when taking Benadryl if you need to drive. It can mKe you a bot drowsy.

Taking it last thing at night is safest and it also aids sleep.

Best,

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: The D3 regimen is not working... again
Reply #29 - Oct 10th, 2018 at 3:34am
 
Visperas,

Be careful when taking Benadryl if you need to drive. It can mKe you a bot drowsy.

Taking it last thing at night is safest and it also aids sleep.

Best,

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Visperas
CH.com Junior
**
Offline


I Love CH.com!


Posts: 64
Re: The D3 regimen is not working... again
Reply #30 - Oct 10th, 2018 at 5:18pm
 
Thanks! I'll keep that in mind.
Back to top
  
 
IP Logged
 
Visperas
CH.com Junior
**
Offline


I Love CH.com!


Posts: 64
Re: The D3 regimen is not working... again
Reply #31 - Nov 16th, 2018 at 9:08pm
 
Hi everybody,

Well, I think I'm finally out of the hole for now. I never did that blood test because I started feeling a bit better. My plan now is to wait a couple weeks to make sure that I'm again in the PF zone and then take one to use as a comparison when this happens again.

My big doubt about this whole thing is "Did the benadryl, probiotic, extra VitC etc... worked or the Beast go away by itself after several weeks?". I think it's very common to have this doubts with our disease and very hard to find a good answer. Last year, when this also happened, after a couple months of pain I started the Benadryl and Co plan and I got better after 40 days aprox. This time, I started taking it as soon as the Beast started showing its face too often and I've been on the plan for 60 before I got better.

I don't know, this doubts and not being sure of what works and what doesn't is one of the most frustrating things about this disease. In any case, I'm gonna keep taking the D3 regimen for sure and if this happens again (and I'm afraid it will), I'll start again the Benadryl and Co plan because I got nothing else.

Anyway, thank you all for your help and specially you, Batch, you da man!
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: The D3 regimen is not working... again
Reply #32 - Dec 1st, 2018 at 4:39pm
 
Hey Visperas,

You've been up against a very common problem for episodic CHers...  Is it efficacy or just end of cycle?  In order to address this problem, you need to address the efficacy first.  If you experience a cessation of CH attacks or a significant reduction in CH frequency within a week to 10 days of starting or restarting this regimen, then it is likely an effective preventative.  If on the other hand, the CH attacks string out to 7 or 8 weeks then subside... the preventative is not effective, you've likely reached end of cycle.

The only good way of resolving this problem is with the lab test of your serum 25(OH)D.  Over the last eight years I've been providing outreach information on the anti-inflammatory regimen then listening to feedback from hundreds of CHers, it's clear to me half the CHers facing problems like yours have not taken enough vitamin D3 to elevate their serum 25(OH)D into the therapeutic range.  Unfortunately half of them don't see their PCP for the 25(OH)D lab test so they're basically shooting in the dark.

The following normal distribution curve (green line) for the 25(OH)D response to 10,000 IU/day comes from the survey of 257 CHers taking the anti-inflammatory regimen to prevent their CH

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

As you can see from the green line there's a wide range of 25(OH)D responses to 10,000 iU/day vitamin D3.  The sigmoid, S-shaped blue curve represents the cumulative probability where CHers respond to 10,000 IU/day.  This curve indicates some CHers don't respond until their serum 25(OH)D is much higher than 100 ng/mL (250 nmol/L).  Unless you've had the 25(OH)D lab test, you don't know and you won't know, where you fall on this curve.

If there's no change in CH patterns after 30 days and the 25(OH)D serum concentration is low, absorption is the likely problem so increase the dose and/or change brands/type of vitamin D3.  CHers who have switched to the Bio-Tech D3-50 water soluble 50,000 IU vitamin D3 capsules are reporting more success in taming the CH beast.

If the 25(OH)D lab test comes back in a range between 80 and 100 ng/mL (200 and 250 nmol/L) and you're still getting whacked, you're likely missing something...  The most likely problem in this case is an allergic reaction followed by some form of systemic infection or both.  Both cause inflammation.

I tend to look at things we can do to help ourselves rather than resort to pharmacological solutions that didn't work all that well in the first place or we wouldn't have started the anti-inflammatory regimen with vitamin D3.

After ruling out allergens with Benadryl (Diphenhydramine HCL) the next course of action is diet...  Zero sugars of any kind and zero wheat or wheat products.  That includes bread, pasta, cereals and pizza.  Lay off the high starch veggies like potatoes too...  What you're looking for is a very low carbohydrate diet, the Atkins Diet or better yet, a ketogenic diet.  Any of these diets should work just fine.

Contrary to what the FDA, AMA and AHA put out, we don't need sugars.  They cause inflammation in the circulatory system that leads to arterial plaque.  Lots of vitamin C can help control arterial plaque if you cut out sugars and refined starches. 

The ketogenic diet causes the body to shift from burning sugar to burning fats as a source of energy.  The human GI tract is very similar to that of the big carnivores, bears, wolves and the big cats... In short, we need to eat proteins and fats with green and yellow veggies and small portions of blueberry, blackberry and apple as they contain natural fruit sugars.  If you stick to a low carb or ketogenic diet, the process of burning fats results in the metabolic byproduct called ketones, hence the diet's name.

If you think you're doing a good job sticking with a ketogenic diet, stop by your local pharmacy and pick up some keto test strips.  A few drops of urine on one of these test strips daily will tell you how well you're doing.  They will also tell you if you've been cheating... 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You can spend a week or longer turning these keto test strips pink to purple indicating ketones in your urine...  However, eat one Big Mac, two slices of toast, or worse yet, hotcakes or a waffle with syrup and the ketone test patch stays beige in color...  You've just shifted your metabolism away from burning fat back to burning sugar...

Hope this helps.

Take care and please keep us posted.

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
pattik
CH.com Alumnus
***
Offline




Posts: 2631
Wisconsin, USA
Gender: female
Re: The D3 regimen is not working... again
Reply #33 - Dec 7th, 2018 at 10:31am
 
Greetings!

I want to chime in with my recent experience using Benedryl (diphenhydramine) to halt a probable CH cycle emerging. While traveling recently, even though I was at a good vitamin D blood level, I injured my knee, and began getting wake-up calls right after I got home. I mega-dosed right away, but it wasn't until I added an evening dose of Benedryl to my overnight dose that I got results. And the results were immediate. 4:00 a.m. headaches 5 days in a row were halted immediately after the extra anti-histamine. I really dislike this drug, but I can't argue with the result. I'm trying to taper back down on everything as my knee heals without stirring up the headaches. Just my 2 cents.

Take care,
Patti
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: The D3 regimen is not working... again
Reply #34 - Dec 8th, 2018 at 3:21pm
 
Patti,

Excellent post!

Take care,

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
pattik
CH.com Alumnus
***
Offline




Posts: 2631
Wisconsin, USA
Gender: female
Re: The D3 regimen is not working... again
Reply #35 - Dec 11th, 2018 at 11:14am
 
Thanks Batch. I just want to briefly add that I just received my D3 home test result which I collected the day before the 4:00 a.m. attacks started up, and it was 115 ng/ml. This goes to show that outside factors can affect CH even when your blood levels are in the "sweet" spot. Everyone is different.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: The D3 regimen is not working... again
Reply #36 - Dec 13th, 2018 at 12:15pm
 
Patti,

Another excellent post and observation.  Good on you for using the 25(OH)D home test kit.  I keep one of these home test kits at the ready at all times.

I got nailed by a pesky CH outbreak last June while fishing in Pelican Alaska.  My 25(OH)D was somewhere North of 160 ng/mL at the time.  The culprit was mold spores.  I've stayed in this house for a month each summer for the last 7 years and never had a CH outbreak. 

In late June we had an electrician replace the circuit breaker box.  He had to remove the plaster board around the old circuit breaker box.  There was mold from 60 years growing inside the wall.  I got hit 3 times that night and an average of 5 hits/night for the next 4 days.  50,000 IU/day vitamin D3 loading doses and 50 mg Benadryl every 4 hours didn't have any effect. 

Had it not been for welder's oxygen and a couple of my redneck oxygen reservoir bags made from clean trash bags and plastic Coke bottles, I would have been in a world of hurt.  The CH attacks stopped abruptly as they started the day I flew home. The only probable explanation for this 5-day outbreak was the mold spores.

I dug up the papers I'd collected on the use of first-generation antihistamines like Benadryl (Diphenhydramine) in halting the body's response to histamine released during allergic reactions and its use in preventing/aborting cluster and migraine headaches. 

One paper discussed pharmacological provocation studies in migraine and CH patients where histamine infusions induced attacks in migraine patients in 5 hours and CH patients in 45 minutes. In a related RCT, CH patients were pretreated with mepyramine, a first-generation antihistamine or a placebo before histamine infusion.  Nearly all of the placebo treated CHers developed CH 45 minutes after the histamine infusion. None of the CHers pretreated with the first-generation antihistamine developed CH-like attacks after histamine infusion.

The take-away from this discussion is first-generation antihistamines are more effective in preventing CH attacks if taken prior to exposure to allergens.  That's not to say a first-generation antihistamine like Benadryl (Diphenhydramine) will be ineffective during a CH attack or between attacks.  We've several CHers reporting Benadryl at 25 mg every four hours resulted in a dramatic reduction or cessation of CH attacks while taking the anti-inflammatory regimen.  Moreover, a Diphenhydramine (Benadryl) IV is frequently used by neurologists to abort problematic CH and migraines in patients in the ER/ED and being treated at headache centers.

This shouldn't come as a surprise.  If histamine H1 receptors are vacant when a first-generation antihistamine is taken, it blocks these histamine H1 receptors to prevent the CGRP response.  However, if histamine from an allergic reaction is already occupying these receptors, it becomes a numbers game when a first-generation antihistamine is taken. 

If the serum concentration of histamine is higher than serum antihistamine, the odds are in favor of histamine filling H1 receptors so the CH continue.  If the serum concentration of antihistamine is higher than histamine, the H1 receptor gets blocked and this helps prevent further CH attacks.

The take-away here is simple, try to avoid the allergen causing the allergic reaction and release of histamine as this will make the first-generation antihistamine more effective.  If you're house bound and getting whacked 3 or more times a night or during the day, get out of the house for 24 to 36 hours.  Stay with family or friends if possible and take the Benadryl  If you can't get out of the house, use a saline nasal spray to rinse the nasal passages during the day and prior to bed.  This reduces allergens in the nasal passages.

Food allergies can also be a problem. Migraineurs have known for years to avoid all wheat products.  I'll add to that all sugars.  An Atkins or ketogenic diet is best.  Stay on this diet for at least 30 days.

Hope this wasn't too confusing.  Take care,

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Pages: 1 2 
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!