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123 Days PF And I Think I know Why (Read 164047 times)
Batch
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Re: 123 Days PF And I Think I know Why
Reply #1050 - Nov 19th, 2012 at 11:49am
 
Hey Battig,

Thanks for the feedback.† It sounds like you're taking what's needed for the basic anti-inflammatory regimen...† The other two things to add are vitamin A and vitamin K... I get mine from Centrum Silver.†

Without a lab test for your serum concentration of 25(OH)D, it's difficult to say how long it's going to take to get the beast completely under control...†

That said, it appears you're close...† The 50,000 IU loading dose once a week and 20,000 IU/day should wrangle the beast to parade rest.†

Talk with your doctor/PCP if you want to use the accelerated vitamin D3 dosing schedule of 50,000 IU/day for two weeks followed by a† taper down to 20,000 IU/day for another two weeks then go in for a 25(OH)D lab test.

Thanks again for the feedback.

Take care and please keep us posted.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1051 - Nov 22nd, 2012 at 12:32am
 
Recent studies have shown taking vitamin D3 with the largest meal of the day increases absorption and bioavailability with resulting serum concentrations of 25(OH)D as much as 50% higher than taking vitamin D3 on an empty stomach.

Other studies indicate taking vitamin D3 with Omega 3 Fish Oil also increases absorption.

Accordingly, it appears taking the entire anti-inflammatory regimen with the largest meal of the day will result in optimum results.

See the following link for details:

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I've updated the Anti-Inflammatory Regimen Survey and treatment protocol post with this information.

Take care and have a wonderful Thanksgiving...†

A big meal like that will give you an opportunity to try this dosing information for yourself.

V/R, Batch

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« Last Edit: Nov 22nd, 2012 at 12:44am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1052 - Nov 24th, 2012 at 11:17am
 
Hello everyone,

† †† My name is Paul.† I am 37 years old and new to this forum.† I remember when I was 15 years old, and I got my first Cluster Headache in Sophomore History Class...a vivid and not so fun memory!† Since then, I have suffered from episodic cluster headaches off and on throughout the years.† I was finally diagnosed when I was 28 years old with Cluster Headaches.† I'm on the forum now because "the beast" is back...or was back.† I've had great success with D3 and Fish Oil after two days thanks to you Batch!† Grin

† †† Like all of you, I'm always trying to figure out what cause my episodes to start.† I've narrowed it down to a combination of the following:

1.† Disruption of Sleep Pattern
2.† Stress
3.† Time change/jetlag
4.† Throw in some beer/wine
5.† †Disruption of normal eating pattern

† †† My headaches have ranged from KIP 1, all the way to KIP 9.† Fortunately, I haven't had to go to the hospital!† For me, the pain starts behind my right eye and radiates out and up...I fell it in my teeth (especially my upper right wisdom tooth) and throughout my skull on the right side. My nostril on my right side will start running horribly when I have a bad one and so will my right eye.† Also, my stomach will feel like it is empty when I'm having my attack...anyone else get this?

† † For the most part, I have just used Imitrex to treat the headaches when they are way up on the KIP scale.† I had one very bad episode when I was 28 where I was put on verapamil (only because I educated my doctor, as a GP, he was clueless about CHs) and it worked really well for me.† After 7 days on it, I was CH free!

† † About a week ago, I got hit again....pretty sure it had to do with all of the factors I listed above.† I had been CH free for about 3 years and 3 months up to that point!† Damn beast came back.† My welcome back to the fun of CHs was a KIP 8, it was horrible.† Since then they haven't been that bad, but have been more frequent.† Also, up to this point, I never had CHs during the night, they were always in the morning...these nighttime ones suck!† I started getting 3-4 CHs at night that would wake me up and make it very difficult to get back to sleep. Also, once I'm up, I've been having a KIP 5-6

† † So I did some reading here and came across Batchís concoction....THANK YOU BATCH!† Yesterday was my first full day on the treatment, and I went from 3-4 KIP 5-6 CHs during the night to 2 KIP 1s last night.† Just woke to a little pressure, and was able to easily fall back to sleep.† This morning, I woke and started to get about a KIP 2-3, BUT after taking the fish oil and Vitamin D, gone, all gone!

† † I'm taking 8000 IU of Vitamin D3 (4,000 in the am and 4,000 in the pm) and 4,800 mg of Fish Oil every am.† So far so good.† Thanks again Batch! Grin
† †† Hopefully this pattern will continue!† Thanks to everyone† here on the board for posting your experiences, they really have been helpful for me to understand/combat my cluster headaches!
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« Last Edit: Nov 24th, 2012 at 11:18am by Paul75 »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1053 - Nov 24th, 2012 at 5:12pm
 
Hey Paul,

Thank you for the awesome feedback...† It appears you can and another entry to your list of cluster headache contributors...

When you get the time, see your doctor for a lab test of your serum concentration of 25(OH)D.† That should give you a reference level of your 25(OH)D level to stay above and remain PF.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Nov 24th, 2012 at 5:12pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1054 - Nov 25th, 2012 at 11:53am
 
Got back into cycle about two weeks ago after 26 months of pain free living.  I tried to bust it twice but was unsuccessful.  Starting taking the regimen yesterday and hope to report some positive results soon.  I happened to locate a blood test report from May 2012 and lo and behold, my Vitamin D level was 26.1ng/ml.  Listed as low and the recommended levels are 32-100.  I will keep everyone posted.
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Re: 123 Days PF And I Think I know Why
Reply #1055 - Nov 25th, 2012 at 12:05pm
 
The vast majority of CH'ers don't report success until their serum levels are between 60-110 ng/mL.
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Re: 123 Days PF And I Think I know Why
Reply #1056 - Nov 25th, 2012 at 1:30pm
 
I just wanted to post the results per the blood test report.  Plan on following Batch's routine as I am beginning to trust CHers more then doctors.
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Re: 123 Days PF And I Think I know Why
Reply #1057 - Nov 25th, 2012 at 9:52pm
 
I am getting some real high hopes as I have only had shadows during the day and nothing more.  Actually feel asleep this afternoon which is a major trigger when in cycle.  Woke with only minor shadows.  I am hopeful for the first time in a while.  And I only started this yesterday!!!
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Re: 123 Days PF And I Think I know Why
Reply #1058 - Nov 26th, 2012 at 10:05am
 
It remained only shadows through the evening and managed to sleep through till 5:00am.  Woke with some heavier shadows but passed after standing up for a bit.  My worst time of day is usually mid morning (9:30-10:30).  Today I started to get shadows that escalated to maybe a kip6.  O2 and caffeine kept it their and just got past it.  Definite improvement from were I was.  Hopeful that things will continue to improve.
Tim
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Re: 123 Days PF And I Think I know Why
Reply #1059 - Nov 26th, 2012 at 1:50pm
 
Woo hoo! Smiley Smiley Smiley
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birdman
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Re: 123 Days PF And I Think I know Why
Reply #1060 - Nov 27th, 2012 at 8:15am
 
Got hit pretty hard last evening and had three hits through the night.  Hoping it is temporary, maybe due to weather??  O2 and red bull weren't helpful, just a man and his demons.  Do I go to trex or pred taper while waiting for vitamin d levels to increase?  Sorry if sounding desperate, the sleep deprivaton does wonders to my psyche.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1061 - Nov 27th, 2012 at 4:44pm
 
Hey Tim,

Thanks for the update...† I understand sleep deprivation... and I found oxygen therapy and imitrex if needed, preferable to a pred taper as bailout/escape abortives.†

Oxygen therapy and or imitrex are perfectly acceptable with the process of building 25(OH)D serum concentrations...† A pred taper could slow it down.

I suspect you just need a little more time to build 25(OH)D serum concentrations a bit higher for a lasting CH preventative effect.† 4 days is still short of the average response time as indicated in the graphic below:

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You might want to try a baking soda tonic prior to bed time.† A half teaspoon of good old Arm & Hammer baking soda in a half glass of water should help alkalize your system and that may help prevent the night hits.

I've sent you a PM with additional info on oxygen therapy and some other things to help build 25(OH)D reserves a little faster...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1062 - Nov 28th, 2012 at 8:55am
 
I hope I am not pirating this link...should I start my own or is it better to keep updates all together??
Either way...I increased the D3 to 15000 and also tried to bust using RC seeds(approx 65).  Got 6.5 hours straight sleep which was awesome.  Minor hit at 5:30 which aborted with 5 minutes of 02.  Just got slammed with a full on kip10 which responded to nothing, so I danced.  Hopefully its the post dose hit and nothing else.  If it comes on that strong again I am going to have to get some relief via triptans.  Lets' hope not.  Please keep the positive vibes and comments coming, they help immensely.
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Re: 123 Days PF And I Think I know Why
Reply #1063 - Nov 28th, 2012 at 10:21am
 
Tim,

Please keep posting your updates in this thread.

Have you talked with your PCP about using one of the accelerated vitamin D3 dosing schedules?†

Have you tried the baking soda tonic prior to bed time?

Although you've not had a significant CH preventative response... you've only been on this regimen for less than six days.† Some CH'ers have taken several weeks to a month before they started experiencing a significant improvement.

That said, your initial response to vitamin D3 appeared favorable so hang in there... and keep us posted.† I'm still confident you'll find this regimen to your liking.

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1064 - Nov 28th, 2012 at 10:33am
 
Thanks Batch, I have not gone to my PCP yet, afraid to go anywhere but work and home right now.  O2 at my side in those two spots.  Will try and get to neuro first to get new triptan scripts, hopefully I can review with them and get bloodwork.  In addition to CH I have Crohns and had to go to gastro doc last night and of course got hit while there.  Anxiety at new high.  Will grab some baking soda for tonight.
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Re: 123 Days PF And I Think I know Why
Reply #1065 - Nov 28th, 2012 at 1:20pm
 
Still getting slammed and had a quick thought.  Is it possible that too much caffeine is causing rebound headaches?
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Re: 123 Days PF And I Think I know Why
Reply #1066 - Nov 28th, 2012 at 2:54pm
 
Tim,

Anything is possible when it comes to cluster headache drivers and triggers...† However, the probability that the increase in the frequency and severity of your cluster headaches is due to coffee intake is low as the caffeine in coffee acts as a vasoconstrictor...† How many cups a day are you drinking?

Even if your headaches are due to an excess amount of coffee, I would think they would be more global and not just one sided.† You would also likely be experiencing coffee jitters and shakes...

A drop in systemic pH, (too much acid), due to dietary influences or some other medical condition is a more likely scenario.† Sensors in the brain and major arteries interpret a lower than normal arterial pH as being caused by too much dissolved CO2 (carbonic acid).† This condition triggers a homeostatic response that includes an increase in respiration rate, an elevated heart beat and dilation of small arteries and arterioles throughout the body and brain.† All this happens to increase blood flow to the lungs in order to cast off the perceived excess CO2.

The simple way to find out if a low pH is the culprit responsible for the increase in the frequency, severity and duration of your cluster headaches is to skip coffee for a few days.† In place of the coffee, drink lemonade or another fruit juice high in citric acid.† Drinks like this have an alkalizing effect so elevate arterial pH.

Have you tried the baking soda tonic?

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1067 - Nov 28th, 2012 at 3:09pm
 
Hey Batch, thanks for quick reply.  Not a coffee man but energy drinks and soda.  Been pounding them as I was thinking that if I got sleepy it might be a trigger.  Going to drug store right now for some baking soda and hope for some relief.  Getting beaten down as everyone here knows can happen.
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Re: 123 Days PF And I Think I know Why
Reply #1068 - Nov 29th, 2012 at 7:00am
 
Tried the baking soda....my sensitive stomach didn't like it and it came right back up 30 minutes later.  Haven't been able to eat since.  Couldn't get the vitiamins in last night either.  Got walloped all night....it was a bad night with bad thoughts.  Anxiety/depression have hit new highs.  Soory for crappy update/rant.  Trying to cope and sharing sometimes helps.   Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1069 - Nov 29th, 2012 at 9:25am
 
Tim,

Yikes!  What a bummer...  Sorry you're having such a rough time.  Cluster headaches are bad enough...  Adding an upset tummy and dehydration only makes them worse.

A half teaspoon of baking soda in 4 ounces of water is roughly equivalent to the same concentration of sodium bicarbonate you get from S.Pellegrino, Evian, or Perrier mineral water... so you do have a sensitive stomach.

Pushing fluids is important to avoid dehydration...  If you can't hold down clear fluids, Jello or the nuclear option... chicken broth...  it's a good idea to see your PCP...  You may have something else cooking.

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1070 - Nov 29th, 2012 at 7:04pm
 
Well, the stomach and nerves calmed down...thank you ativan.  Was able to have very lite breakfast, sandwich for lunch and full dinner(WITH D3 regimen).  I kept the caffeine intake to a low today and someone help explain the following:
At 8:30 started getting hit and used a zomig nasal spray.  Between that and the ativan I dozed on an office couch for while.  Haven't been hit since!!!!  I'm talking almost 11 hours agp.  I can't figure this thing out but the relief was much needed.  Last night and early this morning where NOT very good times for me, very bad thoughts.  Emotionally getting it together as this pain free streak hopefully continues into some restful sleep.  My family and supporters here are what keeps me going.
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Re: 123 Days PF And I Think I know Why
Reply #1071 - Nov 30th, 2012 at 7:09am
 
Well, the streak ended at 11:00, 12:00, 1:30, 3:00.  Zomig at 3:00 and slept till alarm at 7:00. What next?
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Re: 123 Days PF And I Think I know Why
Reply #1072 - Nov 30th, 2012 at 1:06pm
 
44 days pain free Pete!!! No side affects and seeing my Doc today to getmy 25 ohd test my last one 4 weeks ago was a 68 ng/ml and i have since tapered down to 10,000iu D3 daily and a weekly loading dose of 50,000iu. I feel AWESOME!! I don't know if it's just being pain free or the D3 regimen but i have so much energy and feel so good!!!! Thanks Pete I can't say enough about this regimen and am sooooo thankful for you and everyone that has helped me here.....Johnny Smiley Smiley
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Re: 123 Days PF And I Think I know Why
Reply #1073 - Nov 30th, 2012 at 2:12pm
 
Hey Johnny,

Outstanding update...† I'll make a SWAG your 25(OH)D serum concentration is around 85 to 90 ng/mL.

Please let us know the lab results when they come in.

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: 123 Days PF And I Think I know Why
Reply #1074 - Nov 30th, 2012 at 6:31pm
 
Confident that I will get there eventually. Congrats to clusterman, enjoy the time.
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