"The man behind the Danish studie Peter Schwartz is Investigator for the pharmaceutical companies Amgen, Eli Lilly, Merck Sharp & Dohme, and shareholder of Novo Nordisk."

...Verrrryy Interesting!
Gary

Cheers Tangerine

Blackpool I assume, too much to hope Oldham but please don't let it be Salford.

Closed Minds are the root of many problems, not least to understanding and finding a cure for primary headaches.

Two of the world's experts are currently bitching about the classification of a particular headache (Goadsby and Sjaastad) when all the customer wants is for the pain to stop.

I am familiar with egos outgrowing intellect in the scientific world but it is a little frustrating to come across it in victims of appalling headaches.

I honestly don't care if Batch thinks I'm a saboteur working for the Pharmas or have some sexual relationship with death. His views are not worth listening to. They are stupid.

Why? Because he has made up his mind about something about something that is not well understood by the experts and professionals in the field. He knows best without any scientific evidence. The reality is he doesn't have a clue.

His heroes (the Jeddi Masters) assist in selling Home Test Kits for Vit D Levels. Amongst their number they describe Vit D deficiency as an epidemic and pandemic.

If they managed to scare me I might buy one of their kits but the result wouldn't tell me anything worthwhile. These "Experts" are not experts or they would be solving problems and not making money out of the people with the problems. They are even recruiting gullible frightened people to take part in a screening exercise for $650 (of the frightened person's money) with add ons to better understand what their problem is.

And if you learnt that one of them was an ex psychiatrist in a prison you may assume he had picked up some pointers there.

Open Minds solve problems, closed ones cause them.

D3 appears to help in CH but no one knows why, certainly not Batch. Use of D3 at elevated levels, a major study has found, is associated with causing early death. Why? Its not known, it just does.

Repulse the messengers with slurs and abuse does not create knowledge, it holds back understanding, questioning and solutions.

nhs wrote on Mar 13^th, 2015 at 5:36pm:


I wonder what the average age of death is for people with CH? It could well be that it is below 82 given that CH is also known as suicide headaches.

There is also an argument around quality compared to quantity. I'm not sure I'd swap being CH pain free for a few extra years at the end of my life and not being CH pain free.

Mike NZ

Its a good point but what you have to consider is a stroke not killing you and not being able to fend for yourself, including choosing what meds you take.

CH is bad enough but if the stroke doesn't destroy the part of the brain thats causing the problem then the problems get a whole lot worse.

Its getting a bit like flogging a 

Hoppy.

I'll drink too that.

Hi Peter

Thank you for your interest in what makes me tick and your concerns over my suitability for membership of this group. I will try and assist.

I am currently being assessed for the correct diagnosis but I am pretty sure that I know what CHers go through. Last summer I was in constant pain with exacerbations of 10/10 for 20 - 80 mins at a time, 3 - 4 times a day. And then the pain levels of exacerbations got worse.

By the time I got here I was pretty desperate to find a solution, I could no longer rely on the doctors. With excellent input from here and some ramped up research I was able to find a short / medium term solution to the unbearable exacerbations; Indomethacin.

Indomethacin is not a preferred solution as it rots the gut, causes psychosis in older age and contributes towards heart failure. But I wouldn't let anyone take it from me until I have something to replace it. Hence my empathy with D3 users that find relief for their extreme headaches. But if D3 poses risks, which the evidence suggests it does then anyone embarking on an elevated regimen needs to be aware or the possible risks.

You might think I was happy when I found my "temporary cure", I wasn't. I was as mad as hell at the medical community entrusted to helping people like me and thousands of others allowing us to go years, sometimes decades without dispensing the proper treatment.

I have some sympathy for the GP's, when I used to go in, the doc had probably seen half a dozen more people that day complaining of headache.

But mad I was. And my madness did not improve when I discovered Goadsby and Sjaarstad bickering over a headache classification. The Doctors priority is to make a correct diagnosis, if this leaves the patient in pain so be it. I'm a bit more pragmatic than that, get rid of the pain first, then give it a name and say we don't know what causes it and therefore we can only treat the symptoms.

I wrote to Goadsby and Sjaarstad expressing my disappointment in their behaviour, I suggested they   create a new classification for the disputed headache as the patient couldn't care less what it is called and whatever they call it they don't know what's causing it. Neither responded.

My background is in Engineering, Rocket and Countermeasure Design. To take out a missile, torpedo or gun dish with a countermeasure you have to know how the threat works. Any intelligence gathered is important as it can be the difference between life and death. So when the new Danish study was so roundly rubbished I thought why? Why dismiss something as flawed in a particular area and draw fallacious conclusion that therefore the whole study is useless when in fact it may have extremely important implications.? It doesn't make sense scientifically. What does make sense, as the study conclusions recommends (as a hungry scientist might) is further studies are needed looking in specific areas.

My beef with Batch is he has rejected an extremely important study out of hand. Its not just this study there is a mountain of evidence that too high D levels cause all kinds of problems. If as he did with me, he is privately approaching other individuals with CH / CH type headaches and recommending the D3 regimen then he must not say it is perfectly safe; he doesn't know that and there is plenty of evidence to suggest the opposite.

But like me with Indomethacin, once you know the potential risks then you can make an informed choice when weighing up the benefits.
I am sorry you found the Stepford Wives remark condescending, it wasn't meant to be, I was just saying that there was a curious calm serenity in the group accepting the status quo. There shouldn't be, it is completely unacceptable that sufferers are allowed to go years without proper help. I was hoping for more anger just not of the Batch abusive variety.

ps Thanks to the experts I can be officially CH or Hemicrania Continua, possibly Cerviogenic and possibly a few more. It doesn't really matter, they don't know what causes any of them. My theory is different headaches can manifest from the same cause. When I have a firm diagnosis I will let you know. I not waiting on Goadsby and Sjaarstad for a diagnosis as I satisfy both their opinions on what it should be.

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

to be read in conjunction with correspondence at refs1 & 2 in above link.

Thanks Tangerine

In fact Indo does work for some CHers, also Migraine but is effective in pretty much all cases of HC and PHC and some cerviogenic.

Its not a preffered therapy for CH because of the side effects.

Believe me I am not lucky if I can be diagnosed with something else. Having layers of CH, HC and Migraine is not my definition of luck but that's the direction I seem to be taking.

Natural Levels of Vitamin D

Sunlight = Vitamin D: Humans make 90 percent of their vitamin D naturally through sun exposure to the skin (without sunscreen). In Canada‚ our northern climate means UVB levels in sunlight are too weak 4-6 months of the year to makeany vitamin D naturally.

What is the intended, natural level of vitamin D that the human body was designed to operate with?

Humans evolved in the horn of Africa, close to the Equator over 30,000 years ago. They spent their days out in the full sun, with no clothing, hunting and gathering food. Their skin pigment evolved and protected them from sun burns and allowed the production of vitamin D through the skin. Nature never intended for humans to live and work indoors, in cubicles, without sunshine exposure.

Non-Human Primates: 125 – 200 nmol/L
Vieth 2004 – Why the optimal requirement for Vitamin D3 is probably much higher than what is officially recommended for adults
 
Maasai and Hadzabe, Tanzania: 115 nmol/L
Luxwolda 2012 – Traditionally living populations in East Africa have a mean serum 25-hydroxyvitamin D concentration of 115 nmol/L

Outdoor Workers – Lifeguards: 163 nmol/L
Haddad 1971 – Competitive protein-binding radioassay for 25-hydroxycholecalciferol

Outdoor Workers – Puerto Rico Farmers:135 nmol/L
Haddock 1982 – 25(OH)D serum levels in normal Puerto Rican population and its subjects with tropical sprue and parathyroid disease

Outdoor Workers – Nebraska: 122 nmol/L
Barger-Lux, Heaney 2002 – Effects of above average summer sun exposure on serum 25-hydroxyvitamin D and calcium absorption

Indoor Tanners: 95 nmol/L
Schwalfenberg 2010 – Addressing vitamin D deficiency in Canada: A public health innovation whose time has come

Average Canadian: 68 nmol/L
Statistics Canada – Langlois 2010 – Vitamin D status of Canadians as measured in the 2007 to 2009 Canadian Health Measures Survey

Dermatologists: 35 nmol/L
Czarnecki 2009 – The vitamin D status of Australian Dermatologists

GrassrootsHealth and over 40 Vitamin D Scientists recommend achieving an optimal Vitamin D level for disease prevention of 100-150 nmol/L using a 25(OH)D blood test. This is the natural levels that the human body had as it evolved over thousands of years. Everyone should have their vitamin D 25(OH)D blood serum levels tested and make sure they are within these guidelines.

Michael F. Holick, Ph.D., M.D.
A summary of the health benefits and disease incidence prevention
that could be achieved by raising the public's vitamin D levels to 125 nmol/L:

• Rickets, reduced by 100%
•Osteomalacia, reduced by 100%
• Cancers, all combined, reduced by 75%
• Breast Cancer, reduced by 50%
• Ovarian Cancer, reduced by 25%
• Colon Cancer, reduced by 67%
• Non-Hodgkins, reduced by 30%
• Kidney Cancer, reduced by 67%
• Endometrial Cancer, reduced by 35%
• Type 1 Diabetes, reduced by 80%
• Type 2 Diabetes, reduced by 50%
• Fractures, all combined, reduced by 50%
• Falls, women reduced by 72%
• Multiple Sclerosis, reduced by 50%
• Heart Attack, men, reduced by 50%
• Peripheral Vascular Disease, reduced by 80%
• preeclampsia reduced by 50%
• Cesarean Section, reduced by 75%

nhs

To answer your question

The mechanisms of sunlight and popping pills are very different in raising D levels in humans. The marker 25HD can lead one to think they have identical influences.

This is not true.

The truth of D compexity in the human body is not known, not by Vit D Council, not by Grassroots, not by proper scientists, not by you.

Stop presenting the 125 nmol/L "science" as fact, its not and the Danish study points you in the right direction even if you don't want to go there.

125nmol/L appears to be dangerously high, from supplements not sunlight (again they are different). More research is needed and less hyperbole.

lancashire Lad wrote on Mar 14^th, 2015 at 2:36pm:


125 nmol/l appears to be a normal level for people spending a lot of time outdoors. Thats a fact and not rocket Science.

And since you conclude that mechanisms of sunlight and vitamin D3 pills are very different in raising D levels in humans, then you might be so kind to proof it, thanks. If you can´t, please stop your better knowing attitudes. 

tangerinearmy wrote,indo doesnt work for cluster headaches so if you have had relief from that drug you are lucky in the fact you do not have clusters.

Indo are used to treat TAC's (SUNCT) cluster headaches,
those of which I wouldn't wish on my worst enemy.

Hoppy.

I'm tending to think this thread has run its course with a
no win situation. Everyone seems to have his own opinion
including scientists as you read about or see on TV, to
much of this is bad for you, then a new study contradicts
this. Oh deary me, its time for more than two standard  today.

Cheers, Hoppy.