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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › 123 Days PF And I Think I know Why
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123 Days PF And I Think I know Why (Read 447952 times)
godsjoy777
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Re: 123 Days PF And I Think I know Why
Reply #300 - Aug 10th, 2011 at 8:37am  
Thanks again y'all for your tips and support.  The flight I need to be on will only be about 1 1/2 hours....not a biggie and daytime is "usually" ok for me right now anyway.  I have friends bringing the O2 tanks and I am still waiting on the Sansert to come in the mail....Again....I could kick myself for not trying to order it sooner.  I am saving my precious Trex for the weekend that we are out of town and then maybe the Dr will give a few more samples...

During one of my hits last night I was thinking about a medical shake mix we have at the office called InflameX....Supposed to help with inflamation....gonna try it as I'm on the ramped up Vit D and Fish Oil already....I DO know I have inflamation due to a Bioimpedence test that shows a lot of Extracellular water (inflamation) in my system.  Along with trying to stay on high alkaliene (sp) foods....and PRAYER....

Batch....I have access to my medical file at work and I will look at the last Vitamin D lab result....Pretty sure it was ok....but I have ramped up the amount anyway.

Blessings!
Karen
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Re: 123 Days PF And I Think I know Why
Reply #301 - Aug 10th, 2011 at 4:36pm  
Well, it may be premature to present my info, but here it is.

I'm a 38 year old male and a few  weeks ago I caught a sinus infection accompanied by 4 days with a fever.

After fighting it off and being symptom free for about 3 days, I woke up 9 days ago at 3:30 AM with a headache that I would discover had all of the hallmarks of a cluster attack.  I knew nothing about it at the time, but I'd be driven to visit my doctor after 6 straight days (this past Sunday) of H/A at midday always focused on the same side and behind my eye.

Still unaware of CH, I was relieved when the doctor prescribed me an antibiotic, tylenol with codeine and a muscle relaxer as he was under the impression that the H/A was a complication due to the sinus infection.

Well, Tuesday and 2.5 days into my antibiotic with the painkiller and I'm having the worst episodes yet.  Monday I suffered two debilitating hits in quick succession that took me near 6 hours to recover from.  And yesterday, Tuesday, I tried to go to work and was hit there earlier than usual, 9AM instead of around noon.

In light of this lack of success (worsening, in fact) with the prescriptions, I looked Monday online to see if my symptoms were more indicative with migraines.  While I've not been formally diagnosed, with some dismay I discovered that the symptoms coincide with CH.  And, of course, that's what led me to this forum.

Well, desperate to try anything that I could on short notice as the earliest neuro appt I could get was for next Friday, I looked into this thread and others on abortives.  So starting yesterday, I added a D3 supplement.  I only had about 1500IU I could take last night and this morning, but have picked up the 5000IU tabs today.  I took one with calcium at lunch and will start a regular 10,000IU with calcium for short term efforts.

I've felt the typical tugging at my eye (shadows as I've learned) as a relative constant today.  And on a couple of occasions that it's threatened to spike I have managed to fend off the attack by downing black coffee (probably 5 cups today) but I'm encouraged by the ability to actually have a pain free day (knocks wood) thus far as I'm more than 24 hours removed from my last full-blown attack.  My first in 9 days  Smiley

Thanks for the info here and I'll probably find myself lurking these forums more often.
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rosie89
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Re: 123 Days PF And I Think I know Why
Reply #302 - Aug 11th, 2011 at 3:11am  
Hi,

My name is Rosie and me and "THE BEAST" are brand new friends. My fiance just started getting the CH's this month- he's 29. We were scared poopless for a couple weeks because we didn't know what they were, then on his first KIP-9/KIP-10 I took him to the ER. They referred him to the neurologist a week later (with only 15 percocet to hold him over until he was seen- it was TERRIBLE) and then he was diagnosed.
He's now on the prednisone taper and taking indomethacin 3 times a day starting today as preventatives, and percocet as needed. Doc didn't want to prescribe us O2 because it's "inconvenient", but after lurking this site for a couple days, the neuro may be getting a bossy fiance call from me soon to get that script in.  Angry ADDITIONALLY, he got the imitrex injection kit ($190!!!!!! for TWO injections!!! Sorry, I'm new to this and feel the need to whine to people who know what I'm talking about. Whining over with now, promise.) and had his first shot today at a KIP 8. It helped for a little bit.

SO, onto the topic.

I will be starting him on Batch's regimen promptly in the morning. He's actually ASLEEP right now and has been for a couple hours (knock on wood). I'm gonna start him with 10,000 IU VD3, 3600mg fish oil and the Calcium citrate with some lemonade. I will update in a couple days and see how it goes.

This is all very scary because since this is his first experience with CH's we have no idea when they're due to "let up", if he's chronic/episodic, what to expect at all. I'd rather try to scare the beast away with a bunch of vitamins than have to find out the hard way all the excruciating details. I feel so helpless watching him in this much pain.

Sorry for the novel. Needed to vent.

PS- please let me know if I am inadvertantly poisoning him due to some obscure drug reaction. It'd be nice to know, as I'd like him to live.  Wink
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #303 - Aug 11th, 2011 at 6:35pm  
Karen, Copy.

Cyph, Thanks for the feedback...  Hang in there and please keep us posted.

Rosie, Great post!  Physicians who refuse to prescribe oxygen then give a lame a$$ excuse that it's too "inconvenient" or not effective need some remedial CME...  Continuing Medical Education.

If you buy your own high flow rate regulator, I use a 0 to 60 liter/minute unit from Flotec, and have your own non-rebreathing mask like the O2PTIMASK™ kit with 3-liter reservoir bag for $37.50 here at the CH.com Store at the left, the cost/abort with a $30 M-size oxygen cylinder is $1.00 tp $1.50 before insurance.  That beats the heck out of $90/injection before insurance or splitting the dose in thirds.

Hang in there and check your PM...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #304 - Aug 13th, 2011 at 1:31pm  
Update here, I am about 1 week into the D3 vitamin therapy. My D levels did not test low according to my doctor, I am at 63 (even though Batch's research says 100 is optimal). I am taking the vitamins therapy anyway.

While the attacks have not stopped completely I can go about 48 hours without anything, not even a shadow. The CH that I do get are never more than a kip 2-3 and are babies compared to where I would normally be at during this point in my cycle.

I am at just about 3 weeks in, my cycles have typically lasted 3-4 weeks. I am hoping they are almost gone as I seem to be in the "tapering down" part of the cycle.

This cycle (knock on wood) has been the easiest to deal with in 20 years. I definitely believed without Batch's help I would have had an awful last week.
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Re: 123 Days PF And I Think I know Why
Reply #305 - Aug 13th, 2011 at 3:44pm  
Fantastic news Jenny. I'd keep with Batch's routine even if the beast is done with you this go round. It would be interesting to see if you can skip a cycle with it. Hoping he leaves you in peace for a while.

JOe
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LasVegas
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Re: 123 Days PF And I Think I know Why
Reply #306 - Aug 14th, 2011 at 8:00pm  
Many thanks to Batch for being the guinea pig and creator of this natural regimen that appears to be very helpful to many who've tried it. 

I've just finished reading all 13 pages of this thread and am eager to try it beginning next Friday AKA Payday. Wink

My only concern is that a cycle may begin before a month or so where my blood levels would become therapeutic, resulting in me having to start a Pred taper with Verapamil.

One other concern is weight loss I believe I read somewhere in this 13 pages.  I've just lost 60 lbs just in the last 5 years and am too thin due to pain pills for spine injury.  Certainly do not need to lose more weight!  What exactly from this regimen caused weight loss?  I might want to avoid that?!

Thanks again Batch!

PS  We should sticky this thread.
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« Last Edit: Aug 14th, 2011 at 9:00pm by LasVegas »  
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #307 - Aug 15th, 2011 at 12:35am  
LV,

Thanks for the kind words...  and don't worry about the weight loss unless the extra energy from the vitamin D3 results in your running a half marathon a day or training for Iron-Man competition. 

Moreover, why wait until payday?  Smith's Market at the corner of West Tropicana and S. Jones has some small bottles of 5000 I.U. vitamin D3, Omega 3 Fish Oil, and Citracal Plus that will work just fine…  If you venture further West to Costco at 801 South Pavilion Dr, you can pick up a two-month's supply of all three ingredients for less than $20.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #308 - Aug 15th, 2011 at 1:51am  
Batch you are so cool  Cool

When you next visit family look me up and we'll definitely enjoy great conversation and laughs over a few cold brews.

I didn't realize all 3 were so inexpensive.  Off to Costco tomorrow, I live right around the corner.
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Re: 123 Days PF And I Think I know Why
Reply #309 - Aug 15th, 2011 at 3:31pm  
Hi Batch

Ian here, I was on here about two months ago.  Just reporting in that I am having my first completely pain free summer for 15 years.  Still taking the regimen, if I forget or try backing off I get some really small almost unnoticeable but tell tale shadows.  Being able to function and enjoy a summer, we are even thinking about going on holiday next year.  Have been trying to see a neuro to pass on the info but they are to busy unfortunately, so have emailed them.

Thanks again mate, you have changed my life.

Ian
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Re: 123 Days PF And I Think I know Why
Reply #310 - Aug 15th, 2011 at 9:41pm  
Just picked up my Vitamin D3, Omega 3 Fish Oil caps, and calcium citrate tablets tonight at the store. Will be starting the regimen in the morning. Wish me luck. I really don't want to start on the Verapamil and the Prednisone if I can stop these clusters a more natural way... Smiley
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Re: 123 Days PF And I Think I know Why
Reply #311 - Aug 16th, 2011 at 6:48pm  
Hi
Did some search & read adn came across this short Danish blog. "Cluster Headache Cure": Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. 

It seems to provide some scientific explanation on why D3 has this marvelous effect.  Apparently there is a correlation between high production of Nitric Oxide (NO) and cluster.  Among other things, vitamin D3 inhibits the NO production.

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Re: 123 Days PF And I Think I know Why
Reply #312 - Aug 16th, 2011 at 7:42pm  
Hi All!!

Update to the fiance's situation...

He has had shadows since he started the regimen, every day. They are definitely better though, only go up to a pain level of 2 or 3, VERY occasionally a 4 comes around. I have not seen the beast at all since he started the regimen, though he started it on the same day as the Prednisone taper. He still has about a week left of the Prednisone, so we'll see what happens once he is off of it. I'm trying not to get excited yet until we know if it's the vitamins or the Prednisone that is making the difference. I will definitely keep you updated though!
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godsjoy777
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Re: 123 Days PF And I Think I know Why
Reply #313 - Aug 17th, 2011 at 3:35pm  
Wow...That article on the role N.O. plays in clusters in very interesting...

I have been on D3, Fish Oil, Calcium Citrate and Magnesium for about 2 weeks now....I was drinking the Lemonade and stopped it last weekend when I traveled to Mississippi....I realized it and started back on the lemonade and trying to get more alkalized....Last night I had a small hit as I was going to bed and only one more in the middle of the night....Not bad for someone who often got 3-5 hits per night....I am even considering NOT taking the Sansert when it arrives as I want to keep a clean body as drug free as possible if I can....Thank you Batch et all for going for the prize....Pain free is the prize and control of our body.

Karen
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Re: 123 Days PF And I Think I know Why
Reply #314 - Aug 17th, 2011 at 8:36pm  
I spoke with my pharmacist today about this natural regimen and she completely agreed it would be helpful.  She even understood the importance of the lemonade.
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Re: 123 Days PF And I Think I know Why
Reply #315 - Aug 18th, 2011 at 11:27am  
I am having only shadows now. I had gone back on the Fish Oil I was taking for something else before I picked up the Vitamin D3 and calcium citrate with the added D3, magnesium, and zinc. It made my clusters a lot shorter in duration. Now that I have the D3 and the calcium citrate, I am experiencing only shadows. The past two nights I have not been awakened with the piercing pain of clusters. I had had at least three clusters a night (sometimes as many as nine) since July 8. I am so excited! Smiley

Could you remind me once more the importance of the lemonade drinks? I had forgotten about that part when I started this regimen two days ago.  Smiley

Batch, thank you so much for sharing your remedy on getting a handle on the clusters.  Smiley I cannot tell you how much it means to be able to anticipate sleeping now when I dreaded the nighttime hours before the regimen.
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Re: 123 Days PF And I Think I know Why
Reply #316 - Aug 18th, 2011 at 11:45am  
Quote:
Could you remind me once more the importance of the lemonade drinks? I had forgotten about that part when I started this regimen two days ago. 

Drinking something relatively high in acid content will naturally help to lower arterial pH levels.
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Re: 123 Days PF And I Think I know Why
Reply #317 - Aug 18th, 2011 at 12:09pm  
Thank you, Brew. Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #318 - Aug 19th, 2011 at 5:26pm  
Hey Ian,

Thanks for the update.  I think you'll find this regimen has other benefits that will keep you on it for life.

Karen,

Good on you for sticking with this regimen…  It looks like it's starting to work.  If your CH respond like mine and many others have, you should be completely pain free in a few more days.

Dixie Gal,

Thanks for the feedback.  That’s great news.  Stick with this regimen even after your CH subsides completely.  Unlike other CH Rx drugs, this regimen is very healthy for you and it has no adverse side effects.  And at less than 20 cents a day...  it's also very affordable.

Rosie,

I'll add your fiancé's results to the tally when he completes the prednisone taper…  no telling at this point which method is working or working best.

LasVegas,

Thanks for the feedback from your pharmacist.  It's always good to hear endorsements from a medical professional on matters like this.  The comment on lemonade in particular.

Zeitgeist,

I found the article on vitamin D3 and nitric oxide last December when I was looking through studies on possible mechanisms in play with the anti-inflammatory and buffering regimen. 

I also found two more studies that point to the capacity of vitamin D3 to suppress or down regulate calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache.

Doctors Peter Goadsby, MD and Lars Edvinsson, MD conducted a study that measured blood levels of CGRP and VIP in the external jugular vein and found both were elevated during a cluster headache attack.

Attacks were treated with either oxygen inhalation, sumatriptan or an opiate. Thirteen patients were studied of whom 10 were male and three female. All had well-established typical attacks of cluster headache when blood was sampled.

The results they reported in 1994 from this study should be of interest to all CH'ers and the physicians treating them.

" Treatment with both oxygen and subcutaneous sumatriptan reduced the CGRP level to normal, while opiate administration did not alter the peptide levels.

These data demonstrate for the first time in vivo human evidence for activation of the trigeminovascular system and the cranial parasympathetic nervous system in an acute attack of cluster headache. Furthermore, it is shown that both oxygen and sumatriptan abort the attacks and terminate activity in the trigeminovascular system."

I'm sure there are other mechanisms in play with this regimen but the neurochemistry gets real hairy so I've decided to leave that aspect of this regimen to the real experts and concentrate on documenting it's efficacy.

To date based on the available data, the raw efficacy of this regimen is 75% with the margin of  uncertainty at ± 15% due to the 11 CH'ers who reported starting the regimen and staying on it, but who have not reported a favorable response.  It also appears to work equally well for both episodic and chronic CH'ers.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #319 - Aug 19th, 2011 at 6:15pm  
Batch

  Wanted to report on this thread what I just posted on a thread by newbie Glenna.

  Have had no attacks last two days or nights.  Small shadow this morning knocked out with 02 in a couple of minutes.

  I jacked up the regimen three days ago.  Now taking 10K D3 morning & evening . . . 1200 mg fish oil (morning) . . . and Citracal Plus morning & evening.  Have been out in the heat/humidity both days without attacks (which has been impossible last several weeks).

  My plan is to continue on the higher dosages and if continued success possibly taper down . . . but right now ecstatic over some PF time.

  THANK YOU!

    Be Safe,   PFDANs

      Richard
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Re: 123 Days PF And I Think I know Why
Reply #320 - Aug 19th, 2011 at 11:05pm  
Batch et all,
Just a note....I have had no hits in the last 48 hours....2 pain free nights! meaning no hits Wed night ....shadowed all day thursday but no more hits Thursday night and all day today (Friday) feeling great!
I am 6 weeks into a "usual" 12 to 16 week cycle and it appears to be broken....2 days and counting....Drinking my lemonaide right now ..... Wink   
Blessings y'all!
karen
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Re: 123 Days PF And I Think I know Why
Reply #321 - Aug 20th, 2011 at 12:01am  
Hey Richard,

Great news!  It's a wonderful feeling isn't it?  Stick with it and you'll find there are other benefits from taking this regimen.

Take care,

V/R, Batch
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« Last Edit: Aug 20th, 2011 at 12:01am by Batch »  
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Re: 123 Days PF And I Think I know Why
Reply #322 - Aug 21st, 2011 at 6:51pm  
Well....2 nights without attacks and then 2 nights after with 2....Still better than 5 per night....Will continue the regamine and see what happens.

Blessings,
Karen
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Re: 123 Days PF And I Think I know Why
Reply #323 - Aug 22nd, 2011 at 12:32am  
This seems to be working for me. A couple of days ago I had my first CH in 153 days (only a K6), after previously having CHs every few days (verapamil preventive) for 11 months. I am still taking the verapamil, but also vitamin D3, magnesium, calcium and omega 3.

Whilst it is impossible for me to tell if it was a cycle finishing, I've had shadows fairly often (typically from daily to every 2-3 days), so I suspect that it could be the combination of medication and supplements that is working.

To me, the cumulative evidence being reported is indicative of a successful approach.
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Re: 123 Days PF And I Think I know Why
Reply #324 - Aug 22nd, 2011 at 4:46am  
Batch - thanks for the insights into the science.  It's important for me to be able to explain why the regimen works.  Still not quite able, but  Smiley

In real numbers, how many people have tried the regimen?


I'm still fine after 48 days.  After the regimen took effect after 2-3 days, I've only had one night hit (KIP 6-7), and that was when going to sleep after being awake 35hr.  I have had some shadows and KIP 1-2. I have been 100% with regard to the regimen. I do believe some of the shadows/minor attacks are due to empty stomach.  So not 100% PF, but very close.

I've added 45 mcg vit. K2 to the "recipe" - as it is believed to help direct all the calcium to the skeleton instead of calcifying veins etc. I also ponder adding Boron as it  keep showing up as vit D3 co-factor.
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