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123 Days PF And I Think I know Why (Read 164054 times)
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Re: 123 Days PF And I Think I know Why
Reply #1000 - Sep 9th, 2012 at 8:57am
 
Where on earth did you get the idea that prednisone doesn't help CH'ers? It's one of the most commonly used transitional drugs in our arsenal. It's big drawback is that you can only use it for short periods of time lest you end up with some really nasty side effects.
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Re: 123 Days PF And I Think I know Why
Reply #1001 - Sep 9th, 2012 at 11:10am
 
I second that. I don't even want to think what certain periods of my life would have been like without pred. That being said, it definitely doesn't work for everybody, especially chronic sufferers.
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Re: 123 Days PF And I Think I know Why
Reply #1002 - Sep 10th, 2012 at 8:27am
 
Hi Brew.

I did not say Pred doesn't help at all = It does help others (each one of us is "wired" differently.

That being said, I know Pred doesn't help many, from lots of forums I read on the net, CHers people I personally know and...also for me.

Joseph.
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Re: 123 Days PF And I Think I know Why
Reply #1003 - Sep 10th, 2012 at 2:01pm
 
If I were pressed for an answer, I'd estimate that probably 80-85% of CH'ers respond positively to prednisone. If that doesn't constitute "many," so be it, I guess.
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Re: 123 Days PF And I Think I know Why
Reply #1004 - Sep 10th, 2012 at 2:15pm
 
Joseph BIG wrote on Sep 10th, 2012 at 8:27am:
Hi Brew.

I did not say Pred doesn't help at all = It does help others (each one of us is "wired" differently.

That being said, I know Pred doesn't help many, from lots of forums I read on the net, CHers people I personally know and...also for me.

Joseph.


Joseph,
You wrote "I know Pred doesn't help many"..are you really seriously challenging us professionals about Pred and CH's?

For those that Pred does not help, I question:
A) do not have CH's
B) taking too low of a dosage
and/or C) incorrect length of treatment. 

Joesph, FYI...most CH'ers do respond favorably to Pred. Smiley
However, Pred side effects is another issue. Sad

This vitamin regimen has also proven very effective for many CH'ers..see previous postings.

Good luck with whatever you choose as treatment.

-Gregg in Las Vegas
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« Last Edit: Sep 10th, 2012 at 2:17pm by LasVegas »  

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Re: 123 Days PF And I Think I know Why
Reply #1005 - Sep 10th, 2012 at 6:48pm
 
Dear all.

First and foremost, please, peace out. Smiley

I am not trying to question nor disagree prednisone doesn't help at all...to all.

It helps some and it does not help others.

I can say this sentence after reading lots of CH forums online, having discussions with close CH friends and... from my own experience with prednisone, it only lighted my CH pain during the time I took it, but, when I finished taking it (according to the decline amount/time my neurology prescribed it), the pain simply came back = BIG TIME!

Joseph.
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Re: 123 Days PF And I Think I know Why
Reply #1006 - Sep 10th, 2012 at 10:44pm
 
Quote:
...when I finished taking it (according to the decline amount/time my neurology prescribed it), the pain simply came back = BIG TIME!

Which is why it is called a transitional drug. It is intended to bridge the time from starting medical treatment until a long-term preventative (such as verapamil or lithium) can build to therapeutic levels in the bloodstream, usually 10-14 days.

It works just fine for the vast majority who use it and for that which it is intended.
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Re: 123 Days PF And I Think I know Why
Reply #1007 - Sep 14th, 2012 at 5:39pm
 
It was a good run.   Cry

PF for over a year.  Last cycle was back in August 2011.  Based on this thread, I was religiously taking 2000 IU of D3 per day (the Spring Valley stuff from Walmart).  Once that cycle ended, I waited.  Based on history, I was expecting the next cycle to hit around Dec/Jan, then Mar/Apr.

It never came.

I was thrilled.  The wine flowed freely.  Then I think I made a mistake.  Last month, I bought some D3 soft-gels from Target instead of the normal pills from Walmart.  Two days ago the beast reappeared.  I was hoping - PRAYING - I was wrong, but I'm now on my third day with KIP-5s or higher every midnight and again at 6:00 AM.  The one bright point - at least I'm waking up for work in time.

Going to go back to the Walmart stuff and look at maybe upping the dosage to 5000 IU.  And I really wanted a beer this weekend.   Sad
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Re: 123 Days PF And I Think I know Why
Reply #1008 - Sep 15th, 2012 at 9:12am
 
Hey Jeremy,

Now you know the meaning of paradise lost...  Only in this case, it's not really lost...  you're just back at square one with respect to a depletion of your 25(OH)D reserves after stopping the vitamin D3 therapy.

I'll assume you've already gone back on this regimen...  The sooner you get your 25(OH)D levels back up to where you were PF the better.

The discussion now is how to get back up to a therapeutic level of 25(OH)D as soon as possible. 

I attended the F-8 Crusader reunion and Tailhook convention the week before last in Reno and met up with a squadron mate I'd not seen in nearly 40 years.

I mentioned that I was a cluster headache sufferer and that I was controlling this disorder with a regimen of vitamin D3 with all the cofactors and he lit up like a magnesium flare with a big smile...

It seems he had a bout with prostate cancer a little over four years ago...  He'd gone through surgery, chemo and radiation...  only is PSA numbers started climbing after all the treatments.

Like me, he did his own research on studies of alternative/homeopathic treatments for prostate cancer and hit on vitamin D3 therapy as his best bet to prevent its recurrence.

He's currently on a maintenance dose of 5,000 IU/day vitamin D3 with a 50,000 loading dose once a week to maintain a 25(OH)D serum concentration of 90 ng/mL.  His PSA numbers have remained essentially nil for the last 4 years.

His therapeutic dose of vitamin D3 and the same cofactors we use for CH amounted to 50,000 IU/day for a month followed by 50,000 IU every other day for another month then he went in for the 25(OH)D lab test.

He's presently working with a close circle of friends on the same regimen who also suffered from prostate cancer.  Their results have been similar to his...  a low PSA and no recurrence...  None of them had any problems with his therapeutic dosing strategy...

Talk with your PCP about this dosing strategy when you go in for your 25(OH)D lab test...  and remember... even episodic CH'ers should stay on a continuous maintenance dose of vitamin D3 at ~7,000 to 10,000 IU/day along with the cofactors even when out of cycle...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1009 - Sep 15th, 2012 at 1:34pm
 
A follow-up from a nearly refractory user:

I've not posted publicly on this for some time although Pete and I have corresponded periodically.  I am ecstatic at the results I've seen for so many with this regimen and I commend Pete and Niyas for their efforts in making this known.

My case has been not quite as good.  I've experienced a lot of relief taking 25,000 IU a day, but have not had complete relief like so many of you have had.  I've tried a variety of dosages, but every time I drop below 25,000, or I miss a dose I know it within hours.  At present I am in a high cycle with as many as 5 to 6 hits a day.  With Vit D most of these hits are only in the K4-7 range with most of them a K4/5. 

Bottom line, I know this program works!  Unfortunately, as in all other modalities I have tried, nothing has worked completely or for long.  Pete, keep up the good work.  You have been a Godsend to so many of us.  Niyas/Niels, thank you for putting up with all of the rejection and vitriol when you first brought this to our attention.

Jerry
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Re: 123 Days PF And I Think I know Why
Reply #1010 - Sep 15th, 2012 at 3:09pm
 
Hi,
 
I have been on this regimen for just over 1(one) YEAR ,just about. My doctors tell me (again) that this amount of time rules out any possible placebo effect…

I suffer from the extreme sort of CH and was diagnosed as intractable CCH
(Chronic Cluster Headache). 

Without medication I averaged up to 8 (and more) episodes a day at an average high pain level of kip 8 and an overall average pain level of Kip 6. The CH last 45 to 50 min. without abortive treatment, and are accompanied with all the classic CH symptoms we all know so well.

I have undergone treatment with almost all the schoolbook standards of care preventative / abortive medications for CH, and was a guinea pig to some new and "innovative" treatments. 

My candid assessment of all the CH preventative medications follows:
None were really effective, (for me).  Some provided limited relief for a while others did not.  The few that were relatively effective with moderate to good effectiveness in preventing my CH all carried unacceptable side effects. 

When it was clear I was essentially intractable to the standard CH preventative medications, my neurologists suggested blockades…   Starting with GLOA (Ganglionic Local Opioid Analgesy) using: Bupivacaine and Buprenorphine, providing me with some relatively effective moderate to good effectiveness.
Later occipital nerve block with betamethasone provided a week to 10 days, relief but nearly destroyed my endocrine system and it triggered a rapid bone mineral density loss, I still undergo a comprehensive treatment to “repair” the
“damage” done (see for more info. My posts about the GLOA).

One of the more "innovative" treatments included the implantation of a bi-lateral ONS (Occipital Nerve Stimulator). 

The ONS implant required months of "tuning" to load the most effective stimulation patterns, but even then I became a slave to the ONS as it required constant attention during the day to provide what I consider a moderately effective method of preventing painful attacks.  During the night while sleeping it was useless. By the time I woke up the pain was beyond control with ONS.  It has since been surgically removed as its overall day and night effectiveness was far less than I had expected.
 
None of the treatments provided a sustainable magic bullet, or gave me a full (even limited) success in preventing my CH…
 
The only treatment I have not tried is the CB alternative.  It's not that I don’t think it could provide me with some relief, it is just not compatible to my job requirements,

I do need my job… 
 
All treatments had one or more undesirable side effects, that made the risk-reward ratio unfavorable so the choice to continue or discontinue the treatment was made very easy.
 
The anti-inflammatory treatment (for me) is not a magic bullet.

BUT

I am under very close control and monitoring by doctors in the endocrinology department at KSSG (Kantonspital St. Gallen Switzerland). Even with this disciplined approach, I have the flexibility of adjusting doses of the “ingredients” and this has allowed me to achieve a steady (at the moment) 80-85% reduction in the frequency of my CH episodes.  It has also resulted in a significant (over 50%) reduction in the pain level of the remaining episodes… almost never going over Kip 5 anymore.

I achieve all of the above without any immediate apparent undesirable side effects. On the contrary, my bone density (monitored as well) is improving and my current overall sense of well-being is very good.

Next to working full time, and much more, I have picked up a new “kick” -
Paragliding with my older son (age 15), and it is so much fun….. nature from
Above in a slow motion….. the Swiss (Canton Appenzel) landscape is just a joule,  A bijou!!

I do have to compromise (in the last 2 month) and take a lower dose (D3) at the moment , due to some possible undiseiereble side effects in interaction with the
bone density Medication (Bon Viva (Ibandronic acid (INN) or ibandronate sodium (USAN)).

There is still the last bad habit – smoking - a habit I should give up and I might feel even more energetic…  and I do work hard on stopping, with the help of
The dedicated doctors in the Pain therapy department at KSSG (Kantonspital St. Gallen, Switzerland) and having good success, just I wish it would be sustainable.

To all who haven't tried the anti-inflammatory treatment and would like to give it a chance, it can take time (in some cases even longer time) to achieve significant results.  For me it took over 4 months and a lot of discipline. 


However, the flexibility of dosing the “ingredients” to achieve the current results, and knowing there is room for better results makes the continuous disciplined work of adjusting my anti-inflammatory treatment to the situation and the lab tests every three months well worth the effort.
 
The anti-inflammatory treatment is giving us (in conjunction with high Flow O2 abortive) a Substantial weapon to battle our common malady with substantial results (over 70%) and that is more than we achieve (statistically) with most of the standards of care treatments, without any (seemingly) adverse side effects, or any unwelcome legal issues.
 
The cost of this regimen is negligible in comparison to any of the current standard of care meds. It is affordable to (almost) any person, even without health insurance.  My cost is just under 50 cents (US $) a day (and I buy the supplements over the internet and they are flown from the USA to Switzerland via Fed Ex or DHL).  It is the cost (more or less) of one cigarette (in Switzerland), and way less than the cost of a beer in Switzerland !!!
 
When it's all said and done,
I know I still suffer from cluster headache !!!
However, I'm no longer intractable, and that by itself gives me a whole new outlook on life. 

The anti-inflammatory regimen gives me a confident level of control in preventing my CH and the few that do leak through are easily controlled with oxygen therapy at flow rates that support hyperventilation. 

Bottom line: I enjoy a quality of life that lets me function effectively at work, at home with my family, and while doing things I enjoy like skiing with my sons and flying a sail plane over the Alps or Paragliding with my older son.

If you haven't already tried it, I urge as many of you to give this alternative a try, and even if you have tried it for one or two weeks and given up…  try it again…  It can take time for it to be effective, for some of us, particularly the chronic types.  In some cases like mine, it can take several weeks, but the wait is worth it.   

It also takes a disciplined approach with lab tests and patience. There are no apparent risks and it is statistically a very cost effective preventative you can live with for as long as it takes…  or longer!


Michael

201209
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Re: 123 Days PF And I Think I know Why
Reply #1011 - Sep 20th, 2012 at 12:42pm
 
Hey Batch:

I didn't stop the therapy.  I just changed my 'prescription' as it were.  I don't know if those soft-gels were lower in potency or just weren't absorbing at all.  I'm back on the normal pills, currently 3x 2000 IU/day to try and get things back up quickly, then I'll go back to the 2000 IU/day.  If I can ever get a PCP that my insurance doesn't drop a month later  Roll Eyes, I'll see about getting some blood tests done to see where my levels are at.

Let this be a lesson: don't cheap out on your D.  It causes forces sobriety and no one wants that.
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Re: 123 Days PF And I Think I know Why
Reply #1012 - Sep 22nd, 2012 at 4:34am
 
Hey Jeremy,

Thanks for the update.  If 6,000 IU/day vitamin D3 results in a cessation of your CH and 2,000 IU/day keeps you in that condition...  great!  However, doses of vitamin D3 this low appear below average per the following chart developed by Dr. Robert Heaney, MD, the Jedi Master of vitamin D3 therapy.  It's also a lower dose than reported by nearly all the CH'ers responding to this regimen.

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As you can see from this chart, 10,000 IU/day vitamin D3 is a safe therapeutic dose and 5,000 IU/day is a good maintenance dose.

If your CH are slow in responding to this regimen, you might want to try what a few other CH'ers have found effective... a glass of fresh lemonade with each meal. 

The citric acid in lemonade and the calcium citrate from the anti-inflammatory regimen combine in the stomach to form a buffer that elevates the stomach content's pH making it more alkaline (less acid). 

As the stomach contents pass into the small intestine, the increased alkalinity starts elevating arterial pH making the blood less acid.  For some reason, the increased alkalinity appears to inhibit the cluster headache triggering mechanism resulting in fewer less painful cluster headaches.

If lemonade is a problem, you can also substitute a half teaspoon of good old Arm & Hammer baking soda, (sodium bicarbonate) in a half glass of water.  It doesn't taste bad and I've found a glass of this ant-acid prior to bedtime makes for a very comfortable, uninterrupted night's sleep.

Talk to your doctor about this simple method of elevating arterial pH.

Take care,

V/R, Batch

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« Last Edit: Oct 1st, 2012 at 3:32am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1013 - Sep 29th, 2012 at 7:39pm
 
Careful with that "C" word Wink Get's everyone around here a bit up in arms! Grin Will be interested to see Batch's take on the relationship zinc plays in D's absorption.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1014 - Sep 29th, 2012 at 9:23pm
 
Quote:
It doesn't taste bad and I've found a glass of this ant-acid prior to bedtime makes for a very comfortable, uninterrupted night's sleep.

After the burp. Wink
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Re: 123 Days PF And I Think I know Why
Reply #1015 - Sep 29th, 2012 at 11:31pm
 
G'Day Folks

Time for another update and its still good news. PF day 70 has come and gone, I am now completely off the Lithium with Verapamil reduced to 240mg/day. Not so much as a shadow since I started this.
D3 is static on 5000mg/day with all the other ingredients as prescribed.
I went for the blood test and I'm at 78 ng/mL, great, I'm just going to carry on doing what I'm doing.

Thanks again, good luck and PF days to all.
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Re: 123 Days PF And I Think I know Why
Reply #1016 - Sep 30th, 2012 at 5:58pm
 
Guiseppi wrote on Sep 29th, 2012 at 7:39pm:
...on the relationship zinc plays zinc plays in D's absorption.


Niels' post "zinc, zinc, and zinc" (50mg/day) almost looked like he was posting with a "eureka" discovery, but the post disappeared without saying how else he might think it's connected with CHs.  Helping with D3 absorption seemed a second added feature.


???
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Re: 123 Days PF And I Think I know Why
Reply #1017 - Sep 30th, 2012 at 9:24pm
 
Hey Wayne,

Outstanding update...   Thanks for sharing it with us.

I've a few questions and one comment... 

1.  What does your neurologist say about the cessation of your cluster headaches after starting vitamin D3?

2.  When are you going to ask your neurologist about tapering off the verapamil? 

3.  Have you taken the anti-inflammatory survey?

The sooner we get at least 100 completed surveys the sooner we can put the anti-inflammatory regimen in front of member neurologists of the American and International Headache Societies.

Finally, as effective as this regimen is in preventing cluster headaches and keeping them in remission...  it's not a cure so you still have the disorder. 

That means you'll need to stay on this regimen for a long time to come.

I've tested my 25(OH)D reserves three times over the last two years by stopping this regimen...  The longest it took for my CH to return was 8 days without vitamin D3.

That said, taking inexpensive vitamin and mineral supplements that actually provide other health benefits while controlling cluster headaches is a very small price to pay...  What's not to like about that?

Take care and thanks again for the update.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1018 - Oct 1st, 2012 at 8:37am
 
Joe,

The vitamin D Council has the best synopsis on the role of oral zinc at the following link:

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Hope this helps.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1019 - Oct 1st, 2012 at 9:12am
 
Thanks Batch I was followimng a post Niels had put up but has since pulled.......

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1020 - Oct 1st, 2012 at 9:16am
 
Thgis was about the only thing remotely negative, with emphasis on the possible problems for those on prednisone...

Zinc Toxicity
Risk of zinc toxicity is very low. Side effects such as nausea and vomiting have occurred, though these effects are fleeting and are dose dependent. 1

Chronic administration of high doses of zinc runs risk of abnormally low blood serum copper levels, called hypocupremia. 1


Contraindications

Zinc should not be used with the following medications without first consulting with one’s health care provider:

•Amiloride (Midamor)
•Prednisone
•Cyclosporine
•other mmunosuppressant medications

Zinc may decrease absorption of two kinds of antibiotics, quinolones and tetracyclines.


Everything else is way positive, including what Niels was saying about its importance in the D absorption.

JOe
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Re: 123 Days PF And I Think I know Why
Reply #1021 - Oct 1st, 2012 at 11:40am
 
Hi,

Sorry for deleting my post about zink. I will post some important findings about zink in a couple of days.

But one important property is that zink inhibits GSK-3. Lithium was the first “natural” GSK-3 inhibitor discovered, but  Interestingly zinc are more potent inhibitors of GSK-3 than lithium (IC50 in the micromolar concentration range as compared to the IC50 of lithium which is within the millimolar concentration range). Of particular interest is that the trace element zinc, that unlike lithium, and other metal ions is naturally found in the body tissues. Zinc inhibits GSK-3 in the low micromolar range (IC50=15μM) and elevates cellular β-catenin levels. It is noteworthy that low zinc levels are linked with major depression, cancer, diabetes, migraine, cardiovascular disease and mental functions etc..

Vitamin d increase zinc absorption, but absorption will decreaced by 50% if you take it together with a calcium supplement. I take 50 mg zincpicolinate per day (for 6 months), and have lowered the vitamin-D3 to 100 µg. And I feel great.  Smiley

More to come.....

Regards Niels
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Re: 123 Days PF And I Think I know Why
Reply #1022 - Oct 1st, 2012 at 5:17pm
 
Batch wrote on Sep 30th, 2012 at 9:24pm:

1.  What does your neurologist say about the cessation of your cluster headaches after starting vitamin D3?

2.  When are you going to ask your neurologist about tapering off the verapamil? 

3.  Have you taken the anti-inflammatory survey?



Hey Batch

Answers to the above
1. I took her the paper you put together, along with my own diary and she had a very positive approach. She certainly has a healthy repect for the power of D3 but is also cautiously sceptical.
2. I am tapering off the Verapamil at 80mg every 2 weeks and I see the Doc once a month for a quick once over. So far I have reduced from 480mg/day to 240 and the blood pressure and everything else are holding up well.
3. I haven't but I will

Cheers,

Wayne
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Re: 123 Days PF And I Think I know Why
Reply #1023 - Oct 3rd, 2012 at 6:49pm
 
Wayne,

Thanks for the answers...  Making believers out of the physicians who treat us, albeit one-by-one, that this regimen really works to prevent cluster headaches, is still progress...

The sooner the safety and efficacy of this regimen goes viral among neurologists and headache pain specialists, the better it's going to be for the rest of CH'ers who haven't given this regimen a try.

Thanks again,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1024 - Oct 5th, 2012 at 9:06am
 
Batch, Thank you for all of the great info you have posted here. I have been on the regiment for 3 weeks now and have had 0 hits since starting the regiment. I have not had to use oxygen at all. What are the chances of having a coctail or two on a saturday night? D3 at 15000iu, omega 3 at 3000iu and potassium and magnesium asperate at 500iu. 50,000iu d3 every friday. I also take verap at 120 per day but will taper off of that in a few weeks as my cycle winds down. Again thank you...Kirt
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