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Am I cured!!? (Read 13460 times)
Peter510
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Re: Am I cured!!?
Reply #25 - Mar 24th, 2016 at 5:43am
 
Pennine,

Great to hear you're pain free.

Can I suggest you take Vitamin K2 MK7 with the Calcium and D3, to reduce the risk if Calciifacion in the blood vessels.

If in doubt refer to Batch's recommendations.

Best,

Peter.
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Blue Meanie
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Re: Am I cured!!?
Reply #26 - Mar 24th, 2016 at 6:07am
 
The replies are so eloquent. I could barely hold myself but managed. Nice to hear you're cured OP. Now where did I leave those aspirin.
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AussieBrian
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Re: Am I cured!!?
Reply #27 - Mar 24th, 2016 at 6:39am
 
It's beaut to know you've got your headaches under control, Pennine, just be sure to protect your tummy because aspirin can be a bit rough if you're not careful.



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« Last Edit: Mar 24th, 2016 at 6:47am by AussieBrian »  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Hoppy
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Re: Am I cured!!?
Reply #28 - Mar 24th, 2016 at 7:36am
 
Pennine wrote, The only things I take regularly are a 70mg Asprin pill, a 600mg Calcium and Vit D3 tablet and a codliver oil one.

It's always wise to take Magnesium when taking Calcium Supplements! It helps the body absorb the Calcium.

Hoppy
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« Last Edit: Mar 24th, 2016 at 7:50am by Hoppy »  
 
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Batch
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Re: Am I cured!!?
Reply #29 - Mar 24th, 2016 at 3:23pm
 
I’m not a fan of aspirin or any of the other NSAIDs for that matter primarily due to the risk of GI tract bleeds.  There are other, far safer and effective ways of alleviating pain and lowering the risk of thrombosis that you can take for the rest of your life.

Some of my reasoning is based on the following links:

Even Low Dose of Aspirin Can Cause Intestinal Bleeding
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Don’t TOUCH that next dose of aspirin until you’ve had this important test
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Blood Clot Prevention
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

If you read through the above links, you’ll see that the anti-inflammatory regimen provides a safe alternative to aspirin in alleviating pain and preventing thrombosis…  Add some Curcumin, CoQ10, and some Vitamin C and it gets even better for the cardiovascular system.

Take care,

V/R, Batch

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vee
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Re: Am I cured!!?
Reply #30 - Apr 8th, 2016 at 3:58pm
 
Hi all... I am new to the new CH.com.  Been a sufferer for 30 yrs. Tried everything under the sun. Since more 2 years ago started taking D3, K2, Magnesium+calcium with potassium and Boron. I am not sure which of the above worked but been not only CH free, other headaches and flu free too! Now i can really live a life i wanted and am glad i did not succumb to suicide many times before (it was that bad). I hope this is it.. I hope i have finally found the answer to holding the devil at bay. Good luck and God bless everyone. Kiss
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Batch
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Re: Am I cured!!?
Reply #31 - Apr 8th, 2016 at 5:37pm
 
Hey Vee,

Thanks for the wonderfully detailed update.  The short answer to your question is "All of the above."

The active ingredient responsible for the prevention of your CH is vitamin D3.  That said, vitamin D3 requires co-factors in order to support the genetic expression that prevents CH. 

Without the cofactors: magnesium, zinc, boron, vitamin A (retinol), vitamin D3 would not be as effective in preventing your CH and other health benefits.  Omega-3 fish oil acts as an anti-inflammatory and vitamin K2 helps prevent calcium buildup in soft tissues and arteries.  It also helps build bone mineral density.

For example, magnesium and zinc support the enzymatic reactions that hydroxylate (metabolize) vitamin D3 to 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D.  They also support another enzyme that hydroxylates 25(OH)D to 1,25(OH)2D3, the active hormonal form of vitamin D3.  Boron acts as a catalyst in the above reactions.

When all this takes place within neurons in your trigeminal ganglia, 1,25(OH)2D3 combines with retinoic acid (Vitamin A (retinol) to form a 2 molecule dimer that attaches one end to a genetic strand at a vitamin D receptor (VDR) that just happens to be occupied by a zinc molecule, and the other end to a retinoid receptor (RXR).  This combination of VDR and RXR is called a vitamin D response element (VDRE).

Genetic expression is very interesting.  Once the vitamin D:Vitamin A molecule is attached to a gene within a neuron, it unlocks the neuron's genetic library of instructions and the neuron starts executing them.  These actions include replication, differentiation, an increase or decrease in genetic products, proteins and peptides, and programmed cell death (apoptosis)... what we would want to happen with cancer cells...

All of the above chemical reactions are consumptive...  In other words, vitamin D3 and the co-factors are consumed in this chemical reaction, used once, and then eliminated by the nerve cell.  Accordingly, they all need to be replaced on a daily basis, hence the daily anti-inflammatory regimen.

Genetic expression isn't limited to neurons within the brain and trigeminal ganglia.  A 2010 research study identified 2776 genomic positions occupied by the VDR and 229 genes with significant changes in expression in response to vitamin D3.  Accordingly, genetic expression takes place throughout the body and in particular, our immune system. 

In short, vitamin D3 and the co-factors turbocharge the cells that make up our immune system making them better equipped to handle the constant flood of antigens, (bacteria, virus and fungus). 

The net result of taking the anti-inflammatory regimen is fewer colds and the few that do happen are short lived with symptoms clearing in 24 to 36 hours instead of lingering for a week or more.  Flu becomes very rare.  We also sleep better with quality restful sleep, anxiety attacks go away and we just feel better.

What is also very interesting is the anti-inflammatory regimen also stops shingles from spreading.  Moreover, starting loading doses of 50,000 IU/day for 4 to 5 days at the first symptom of shingles stops the pain and prevents the outbreak of the painful rash.  What's not to like about that?

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 8th, 2016 at 8:26pm by Batch »  

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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thierry
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Re: Am I cured!!?
Reply #32 - Apr 9th, 2016 at 8:19am
 
Hi Vee, thanks for your post.
it is great to hear that you too are pain free thanks to the D3 regimen, more importantly that you did not succumb to suicide.
The regimen is a life saver in many ways Smiley
All th best
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MGP59DB
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Re: Am I cured!!?
Reply #33 - Apr 10th, 2016 at 6:56am
 
Am I ?

I just have to make a note to all who are thinking about trying the D3 regimen , DO IT !
It can't hurt to try and it may help .
I have/had been having classic chronic Cluster symptoms for near 5 years and have been to many Drs and spent a lot of money on tests and 'ruling out' other things.
Yet nothing seemed to help . The episodes were still invading my life every day .
I had seen this D3 Protocol over a year ago but failed to think it a viable treatment for me.
I finally decided to try anyway as nothing else helped much and it couldn't hurt .I spent maybe $30 at Wal-Mart to get the supplies needed to get it started .
I didn't go full on 50,000 IU D3 loading doses , but only added Fishoil and D3 @7K a day plus a good One A Day Vit.

It has been just over 2 weeks now and I have been 10 days without any episodes !!
The nasty switch has turned off ! I am convinced that I was suffering from a D3 deficiency , probably due to the working indoors all the time and a northern living zone with short days and long nights . I didn't get much Sun and actually can recall that summertime seemed to be better with reguard to the episodes .
I know it is a bit early to say I am cured . But my life has changed dramatically in two short weeks .
The more I read from 'Batch'  the more I see the solid 'Science' of what he is promoting here .
I cannot believe that any of the Drs I have visited ever thought to suggest this . They only thought to prescribe damaging drugs and expensive tests and repeated visit to my Insurance cards.
I have since increased my D3 intake and will be getting the rest of the regimen . While I back off of Verapamil .
Thank You , Batch !! I will be forever in your debt .

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Peter510
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Re: Am I cured!!?
Reply #34 - Apr 10th, 2016 at 9:09am
 
MGP...,

Great to hear good news like yours.

Get your bloods done to establish where your D3 levels are. that will enable you to monitor it into the future.

Best,

Peter.
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Pennine
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Re: Am I cured!!?
Reply #35 - Apr 16th, 2016 at 4:53pm
 
On Batch's recommendation I have switched from Cod Liver Oil to 1000mg capsules of Omega 3 Fish Oil, which I see on the bottle contains 300mg Active EPA/DHA - whatever that is! 

Basically what I have been doing over the last few years appears to work for me and I’m afraid all the technical stuff goes over my head.  I guess if I were struggling I would try to concentrate and understand it.  As it is, I want an easy life so I think I will probably leave well alone now and hope for the best.  (I still think that for me the Aspirin was the main contributor to my freedom since under normal circumstance I would not need it or anything else and only started taking it on a whim).

So I will carry on carrying on and maybe look again next year if nothing untoward happens before then.  Fingers crossed.   But I appreciate Batch’s profound input and hope others enjoy success and the help that this site offers to those afflicted. 

Now I prefer not to think about ‘them’ again - ignorance is bliss.
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Scorpion
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Re: Am I cured!!?
Reply #36 - May 8th, 2016 at 1:57am
 
I know that I still have clusters.

I live in permanent remission as long as I stay in ketosis.
I am in the longest remission ever, yet every time I start to dabble with my glucose, the shadows come on and I bust ass getting back into a ketogenic state and they go away. I will always call this my cure.

I absolutely think it's the greatest thing for my clusters.
The pain is at bay, I am healthy, happy, and if you want to tell me you have found your permanent remission, i.e. cure,  you are more than welcome to say that.

Don't ever let anyone tell you that that kind of positive, happy, soul lifting feeling is something you need to keep to yourself, hide, or be shameful of.
Some like O2, some like D3, some like shrooms,
I like Keto.

When we have found our cure we want to shout it from the top of a mountain... Nothing but love.
Sorry to hear the beast got ya.
FWIW A ketogenic diet has kept me PF straight through an entire cycle, and I believe it is my cure. Cool
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Batch
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Re: Am I cured!!?
Reply #37 - May 8th, 2016 at 8:45pm
 
Hey Scorpion,

You've made a very interesting and fascinating post.  A ketogenic diet and the anti-inflammatory regimen with 10,000 IU/day vitamin D3 are not mutually exclusive.  I suggest a similar diet avoiding sugars and carbohydrates along with the vitamin D3 regimen.

My preference is the Atkins diet witch is very similar to a ketogenic diet and I add medium-chain triglycerides (MCTs) like coconut oil which is also part of a ketogenic diet.

The word cure often raises eyebrows around here when used in reponse to any cluster headache intervention.  When taken at face value, with a complete cessation of CH symptoms...  it appears appropriate... None the less, there are distinctions between a cure and a remission and you've interchanged both in your post.

I tend to take the more conservative approach in the distinction between a cure and a remission with respect to the anti-inflammatory regimen... 

I'm 71, I've had CH for over 20 years, diagnosed as chronic in 2005, but I've been pain free of CH since I started the anti-inflammatory regimen in 2010 with a few exceptions...  Each year I stop taking this regimen as a burn-down test of my 25(OH)D reserves until CH symptoms return...

It usually takes from 7 to 10 days without vitamin D3 before CH symptoms recur... and that tends to happen when my serum 25(OH)D concentration that normally averages 80 ng/mL, drops to 55 ng/mL or below.  Accordingly I still have CH. 

It's interesting to note, I drove my 25(OH)D over 164.7 ng/mL with no adverse effects while under a physician's supervision with monthly labs including serum 25(OH)D, calcium and PTH...

My serum total calcium averaged 9.8 (Normal Reference Range 8.5 to 10.5 mg/dL) and PTH and my PTH remained low as expected at 22 (Normal Reference Range 17 to 70 pg/mL).

What was really interesting was after six weeks with no vitamin D3, I remained CH pain free...  My 25(OH)D serum concentration at that point was still 117 ng/mL so it had not dropped to the 55 ng/mL threshold where my CH symptoms usually return.

Accordingly, for me and many other chronic CHers, we can remain CH pain free and in remission... as long as we keep our 25(OH)D serum concentration above a threshold and in the "Green Zone" of 60 to 110 ng/mL by taking an average of 10,000 IU/day vitamin D3.

Wikipedia has a well thought out review of this topic with references...

"A cure is the end of a medical condition; the substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps end a person's sufferings. It may also refer to the state of being healed, or cured.

A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

The proportion of people with a disease that are cured by a given treatment, called the cure fraction or cure rate, is determined by comparing disease-free survival of treated people against a matched control group that never had the disease."

Ultimately physicians look for "Medical Evidence" provided by conclusive data from two or more appropriately powered RCTs (n ≥ 100 participants), before they start using/prescribing any intervention...  Even then, the distinction between cure and remission is either blurred or not addressed.

With all that in mind, I'm inclined to think the distinction between a cure and remission really doesn't matter to a CHer... as long as intervention that results in a lasting pain free response... is reliable and repeatable... for as long as we take it.

Take care and thanks again for the post.

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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