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I'm back! Paging Batch... (Read 5839 times)
djphrenzy
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I'm back! Paging Batch...
Jan 20th, 2013 at 2:25pm
 
Hey Gang,

I haven't lurked around here in about 2 years, but starting on January 2nd, my friend has returned to visit, and so am I.

I managed to get Oxygen this time.  My neurologist told me if I had more than 10L/M I could go blind.   Huh  Needless to say, I went to my PCP and he prescribed exactly what I wrote down, word for word.

The regulators I got from my medical supplier only go to 15L/M.  I've found that I can abort an attack in under 5 minutes, but no matter how long I stay on the Oxygen after abort, I get re-attacks that are longer and more severe than if I had just rode it out in the first place.  Not to mention it dries me out something fierce (I need one of those humidifier doo-dads).  Last night I aborted 3 times and finally just rode out the 4th attack so I could get some sleep, it was a 40 minute K7 with waves into the 8s.  I've had K2-3 shadowing since.  Drinking some coffee now and it's helping a little.

My PCP prescribed Topamax, and my neuro prescribed Verapamil.  I haven't taken either.  I'm not confident in these drugs, and I have a gut feeling that while they may be short-term effective, in the long term may actually worsen the condition.  Am I way off base in this thinking?  I'd rather be episodic and ride out the 5 weeks than make myself chronic by throwing random drugs at it.

In any case, I came here to poke around and see what the current hip new thing is, and I see Batch posting all sorts of stuff about a D3 regimen.

I was hoping somebody could link me to the most-current dosing schedule.

Thanks!   Cool
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djphrenzy
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Re: I'm back! Paging Batch...
Reply #1 - Jan 20th, 2013 at 3:22pm
 
Also, I'm somewhat doubting my neuro, given that A. He says more than 10L/M of Oxygen will make me go blind and B. He prescribed me Verapamil with no mention of an EKG.

Can anyone suggest a good CH-experienced neuro in the Dayton/Cincinnati, Ohio area?

Thanks
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« Last Edit: Jan 20th, 2013 at 4:09pm by djphrenzy »  
 
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Brew
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Re: I'm back! Paging Batch...
Reply #2 - Jan 20th, 2013 at 3:55pm
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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djphrenzy
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Reply #3 - Jan 20th, 2013 at 4:08pm
 
I found that one but wasn't sure if it was the most up-to-date schedule.  Thanks Brew!   Smiley
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Reply #4 - Jan 20th, 2013 at 5:15pm
 
It's a pretty flexible regimen. This is a good place to start.
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Batch
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Re: I'm back! Paging Batch...
Reply #5 - Jan 20th, 2013 at 7:28pm
 
Hey DJP...

Lose the thought about finding a neuro who understands not only that oxygen needs to be prescribed at 15 to 25 liters/minute with a non-rebreathing mask or a demand valve to be very effective as a cluster headache abortive, or that vitamin D3 at doses starting at 10,000 IU/day along with the vitamin D3 cofactors, is far more effective as a cluster headache preventative and significantly safer with no major side effects than the top three standards of care prescribed medications combined...

To be fair... there haven't been any gold standard RTCs on either of these two methods of controlling cluster headaches...  so the medical evidence mafia rules supreme...

Now that you have an accepted Dx for cluster headaches from a neurologist... it's my humble opinion that you would be better served seeing your PCP, an Integrative/Naturopathic physician or an endocrinologist about a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D.  This is the metabolite of vitamin D3 used to measure its status.

The odds are you are vitamin D3 insufficient/deficient.  The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL...  30-20 ng/mL is vitamin D3 insufficient, and ≤20 ng/mL is deficient...

Nearly all CH'ers with active CH who have gone in for this test prior to starting the anti-inflammatory regimen have had their results for this lab test come back ≤30 ng/mL.

The really exciting news is that 79% of the 300 CH'ers who started this regimen experienced a significant reduction in the frequency, severity and duration of their cluster headaches...  70% of the 300 CH'ers experienced a pain free response...

When these CH'ers get tested for 25(OH)D...  their results all come back in a range of 60 to 110 ng/mL.  We call that the "green zone" for CH'ers and that makes the target 25(OH)D serum concentration 85 ng/mL...

And don't worry about vitamin D3 intoxication...  As long as you get your 25(OH)D and total calcium serum concentrations tested monthly until you reach a cluster headache pain free response with a stable 25(OH)D serum concentration... the odds of vitamin D3 toxicity are very low.

The vitamin D3 doses CH'ers use in this regimen are well below that required to elevate 25(OH)D above the lower threshold associated with vitamin D3 intoxication at 200 ng/mL.  That would take a sustained dose greater than 40,000 IU/day for several months...

In fact, we've had three CH'ers, under the supervision of their physicians, who have had their tests for 25(OH)D come back greater than 200 ng/mL...  None of them had any indications of vitamin D3 toxicity or total calcium serum concentrations above the normal reference range... 

All three were pain free at the time... and their 25(OH)D serum concentrations dropped rapidly when they reduced their daily intake of vitamin D3.

I try to keep the following link updated with the latest available information on the list of supplements used in this regimen, dosing, vitamin D3 dosing strategies, drug interactions and contraindications:

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

If you still have questions, please shoot me a PM.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 21st, 2013 at 9:50am by Batch »  

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djphrenzy
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Re: I'm back! Paging Batch...
Reply #6 - Jan 20th, 2013 at 8:29pm
 
Thanks for the very informative response, Batch.  I find the D3 deficiency to be quite probable, as I've suffered moderate to severe Seasonal Affective Disorder for about as long as I've had CH.  Additionally, my active periods are always during the time of year with the lowest amount of sunlight.

Coincidence, perhaps (I know we're all prone to seeing causality where there is none), but worth investigating nonetheless.

I took my first dose of 10,000 IU D3 this evening with dinner.  Will see if I can schedule as 25(OH)D screening with my PCP tomorrow.  I'm going to hold off on cofactors until I speak with my PCP, as I am also taking an anxiolytic/anti-depressant (Remeron).
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Guiseppi
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Re: I'm back! Paging Batch...
Reply #7 - Jan 20th, 2013 at 9:05pm
 
A list of sufferer recommended docs in Ohio:

Ohio

Cincinnati:
Dr. Joseph Nicolas
University of Cincinnati Physicians

Cleveland:
Dr. Mark Stillman
Cleveland Clinic - Neurological Center for Pain

Dr. Stewart J. Tepper
Cleveland Neurological Center

Columbus:
Dr. Francis J. O'Donnell
OrthoNeuro

Grove City:
Dr. John Horn (PCP)
Grove City Family Health

Hilliard:
Dr. Donata Rechnitzer (PCP)
ExpressMed

Lewis Center:
Dr. Perry D. Mostov, D.O.

OSU Family Medicine at CarePoint Lewis Center Primary Care

Westlake:
Dr. Carl Ansevin

Hope one of these is close.

Joe
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djphrenzy
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Reply #8 - Jan 20th, 2013 at 10:05pm
 
Thank you, Guiseppi!
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djphrenzy
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Reply #9 - Jan 20th, 2013 at 10:41pm
 
You guys are always so helpful.  Just knowing there are others out there helps.

I should really make it a point to visit when I'm out of cycle.    Cool
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morgan_freeman
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Reply #10 - Jan 26th, 2013 at 3:57pm
 
djphrenzy wrote on Jan 20th, 2013 at 3:22pm:
Can anyone suggest a good CH-experienced neuro in the Dayton/Cincinnati, Ohio area?

Thanks

Fellow Cincinnati CH sufferer here. I've been to 6 specialists in the last 2 years. I've gone lately to the first and only Neruo i've been to. Michael Schmerler from River Hills Neuroscience. They have several headache specializing practitioners in that practice. My mother just happened to go to him for a nerve issue and he has wonderful bedside manner  Grin. He started me out taking Depakote at two difference doses, and another practicioner Dr. Rorek perscribed me Propanolol while Schmerler was on vacation once (that one wasn't too fun for a 20 year old at a high dose). Last week he ASKED ME if I wanted to see a headache specialist at a center, or try Verapamil and Nortryptalin first. I'm giving it a whirl on top of the Batch-Regimen.
Best wishes, Link to River Hills will be in your inbox..because of my lurkyness  Embarrassed.
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Mike NZ
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Re: I'm back! Paging Batch...
Reply #11 - Jan 26th, 2013 at 4:43pm
 
Hi Chimpezman and welcome

I'd be very tempted to ask to see a headache specialist as soon as you can. CH is something that a lot of neurologists have very limited experience in, so making use of a specialist who will have more experience will make a difference.

If it'll be a while before you can get to see the headache specialist do continue to work with the existing doctors, especially with the suggestion around verapamil which is an effective preventive.

Have you got anything to abort CHs? Something like oxygen (see link on the left) or imitrex injections?

And Batch's vitamin D3 method is getting great results too, hope it works for you.
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djphrenzy
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Reply #12 - Feb 4th, 2013 at 4:47pm
 
Just an update...

I'm scheduled for my 25(OH)D screening tomorrow.

I've been taking 10,000 IU D3, 1200mg Fish Oil, 1000mg Calcium, 400mg Magnesium and 25mg Zinc daily since Jan 20th.

I have noticed a disruption in my CH, not so much in the severity but in the periodicity.  I seem to be having baby cycles.  They start with low kip levels once a night, escalate to a couple a night, culminate in a night with like 4 severe attacks and one killer around 10 in the morning, Kip 10.  Then 48 hour remission and repeat.  This process takes about a week.  Very strange, and unusual compared to my previous 2 cycles.

This cycle is in its fifth week, where as my previous two cycles were 4 weeks long. (I have only had two cycles previous to this one)
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Batch
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Re: I'm back! Paging Batch...
Reply #13 - Feb 5th, 2013 at 2:38pm
 
Hey DJP,

Thanks for the update...  Off hand given your description of the mini-cycles, I'd say your 25(OH)D serum concentration is building but is still below that required for a pain free response.  The lab test tomorrow will likely confirm this.

You should be shooting for a target 25(OH)D serum concentration of 85 ng/mL. 

The data I've collected from CH'ers who have responded to this regimen and then had this lab test indicates 90% will respond by the time they reach a 25(OH)D serum concentration of 85 ng/mL.  The other 10% required between 85 and 110 ng/mL to achieve and sustain a favorable response.

Take care, hang in there, 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, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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djphrenzy
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Reply #14 - Feb 5th, 2013 at 3:20pm
 
Batch,

I should note, I went over all your information today with my PCP and he was extremely excited about it.  He was wondering if there was any anecdotal evidence for it's effectiveness regarding migraine, and he said he was going to try it with some of his migraineurs.  He jokingly said if it proved effective, he wasn't going to share any of the credit with me.   Grin

He also noted that as little as ten years ago, they almost never tested for 25(OH)D, but that recently, deficiency has been implicated in more and more conditions.  I was very happy about his response.

In any case, he was all for it, and said we could do loading dosing if necessary to get me to the target range.  He also said he will be doing some additional research on the subject and provide me with the information he comes up with.

Edit: One more thing he noted, is that when he is treating for vitamin D deficiency related to osteoporosis and other conditions, he normally struggles to get people to a level of 40ng/mL.  I explained that there were CH patients being monitored by doctors/endocrinologists that were near 200 ng/mL taking 20,000 IU daily with loading doses without any signs of toxicity, but that a target of 85 ng/mL was therapeutic for most.
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« Last Edit: Feb 5th, 2013 at 4:02pm by djphrenzy »  
 
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djphrenzy
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Re: I'm back! Paging Batch...
Reply #15 - Feb 11th, 2013 at 2:48pm
 
25(OH)D result: 27ng/mL

The panel was done after 18 days of 10,000 IU/day and one loading dose of 50,000 IU.
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