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123 Days PF And I Think I know Why (Read 445107 times)
9thNerve
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Re: 123 Days PF And I Think I know Why
Reply #1275 - Feb 17th, 2013 at 12:14am
 
My Hero !

I will overcome this, come hell or fjord!

Thanks for the support and your infinite wisdom!
9th Nerve
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Re: 123 Days PF And I Think I know Why
Reply #1276 - Feb 18th, 2013 at 2:28pm
 
I was happy to finally get tested for 25(OH)D and found that my serum level is 96 ng/mL. Although, the lab doing the testing said that their "normal" range is 30-80. I have been taking 10,000 IU of D3 for almost a year now, and it's good to see this result.  I'm only a few weeks away from my regularly scheduled yearly episode, so this ought to be interesting. I have had a few random attacks with low pain levels over the last month, so it hasn't been 100% effective.  Still, I'll take it. 
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Re: 123 Days PF And I Think I know Why
Reply #1277 - Feb 18th, 2013 at 2:35pm
 
pattik wrote on Feb 18th, 2013 at 2:28pm:
I was happy to finally get tested for 25(OH)D and found that my serum level is 96 ng/mL. Although, the lab doing the testing said that their "normal" range is 30-80. I have been taking 10,000 IU of D3 for almost a year now, and it's good to see this result.  I'm only a few weeks away from my regularly scheduled yearly episode, so this ought to be interesting. I have had a few random attacks with low pain levels over the last month, so it hasn't been 100% effective.  Still, I'll take it. 

If you'll take it, so will I! Here's hoping...
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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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Great results from the D3 regimen!
Reply #1278 - Feb 18th, 2013 at 9:03pm
 
Hello everyone,

I'd like to share some wonderful news about successful results using the D3 anti-inflammatory regimen. The story takes a bit of telling, but I hope you'll find it worth your time.

I live in the US, but there is a young woman in Zambia who has earned such a significant place in my heart that I now consider her to be my "adopted" daughter. Helen is intelligent, kind, patient, honest, and hard-working. When I met her six years ago, she was living in miserable conditions and battling hunger every day with no hope of a better life.

Last June, Helen graduated from business college at the top of her class. It hadn't been an easy road. Viral meningitis had caused her to drop out of school halfway through her second year, which she then had had to repeat. During her final year of school, malaria almost took her life. After two months in the hospital, she was finally well enough to go home. Back in school, she attended classes during the day and studied all night, determined to catch up. Her refusal to accept defeat paid off and she graduated with honors.

In September, armed with top grades and a degree in human resource management, Helen began looking for a job. She landed a position in the human resource department of a large bank in Lusaka, the capital city. Her new life, one that she'd once never even dreamed of, was finally beginning. She was excited and happy - - - and then the headaches began.

She told me about it in a phone call, "Mom, I feel like it wants to kill me. The pain is like hell on earth. The thought of facing it every night is with me all day, and I'm afraid to go to sleep."

She cried. I cried. It was so incredibly unfair.

Tiredness, constant pain in her neck and shoulder and a general weakness all seemed to be related to the nightly headaches. Before long, it became impossible for Helen to work. She was granted a medical leave from her new job, but had no idea when - or if - she'd be able to go back.

From that first phone call, I'd immediately started searching for answers. I'd thought of cluster headaches, but hadn't known how extreme the pain was or how debilitating they can be. The Zambian doctor had never heard of cluster headaches so I sent text messages with information about prednisone and verapamil. Neither of these had any effect.

Then I found this board and told the doctor about oxygen. It was a tremendous help in limiting Helen's time of suffering each night, but she still wasn't able to lead a normal life. This sweet young woman, who had struggled so hard, and overcome so many obstacles, was becoming more and more depressed each day.

I went back to the internet and kept looking for anything that could possibly help. Fortunately, I happened to stumble onto this thread. (Perhaps it should have D3 in the subject line?) 

Everything I read here made sense and, at this point, we were willing to try anything. Helen started taking D3, omega 3 and calcium citrate with orange juice and a bit of honey. A blood test showed her D3 level was 28.8 ng/ml.

After exactly two weeks, with Helen taking 20,000 IU of D3 a day and an additional 50,000 once a week, my phone rang again - "Mom! The pain is no more! I am free! Oh! I am so very, very happy!"

I cried again, but this time for joy.

It's been four nights now and there have been no headaches, not even a twinge. Some people may say it's too soon to be certain, but I believe the beast has been vanquished. If there's any change, I'll let you know. Helen will have another blood test soon. I'll post the results when I get them.

"Thank you" doesn't begin to express my gratitude, but it will have to do.

Sir Batch, I salute you and offer you my most sincere thanks! You have rescued my daughter from the depths of pain and despair. You are truly our hero!
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Re: 123 Days PF And I Think I know Why
Reply #1279 - Feb 18th, 2013 at 10:47pm
 
I love when a post brings a tear to me eyes! Smiley Smiley Smiley

I hope there's no one left who is unclear on what this board is all about!

Batch? Smiley I thank you yet again sir.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Re: 123 Days PF And I Think I know Why
Reply #1280 - Feb 19th, 2013 at 9:24pm
 
Quick question...   I noticed some weird what I thought was shadowing ( so many define this differently ) / mild headache bi lateral (not my right side of norm)  when 1st starting the D3 treatment at the first of this month. It passed in a few days and I have slowly seen changes especially at night. These lingering dull headaches which Ibuprofen knocked out returned both times I did the 50K IU loading doses and same deal but they dissipated over the next day or so.  I assume many have different affects and was just curious. I have had just 2 hits now since feb 2nd compared to over 60 recorded the previous month. I was long overdue for a break but things are not the same in my head and am still plugging away and looking forward to seeing my levels next month.
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Re: 123 Days PF And I Think I know Why
Reply #1281 - Feb 21st, 2013 at 12:36pm
 
Into 4th week: D3 20,000 daily + 50,000 once a week, daily: fish oil 2800mg, caltrate, multivitamin and 8000iu vitamin A. Any changes needed to above?  Intend to stay with this for next month and see how we are doing then.

Things are a little different with CH's.  The good news is no Relpax in the last 3 nights.  Pain seems to have shifted from temple to area behind eye ball and is a very dull (bruised?) pain K3-4.  Still enough to wake me up but O2 and Goody's will let me get 4 or 5 hours of sleep before next episode. Have had 2 daytime headaches in last 2 weeks.  Both while away from home, imitrex shot for first one and took Goody's for second one. 

Really enjoy reading the success stories, looking forward to celebrating my own and becoming a devoted Batchloreite
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Re: 123 Days PF And I Think I know Why
Reply #1282 - Feb 21st, 2013 at 5:31pm
 
Just out of curiosity, is there any reference material/studies for sustained intake of high-dose D3 (say 5000IU+ daily) over a period of years?

I know that  the Institute of Medicine (IOM) states the tolerable upper limit (UL) is 4000 IU per day for adults.
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« Last Edit: Feb 21st, 2013 at 5:33pm by djphrenzy »  
 
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Re: 123 Days PF And I Think I know Why
Reply #1283 - Feb 21st, 2013 at 9:53pm
 
Hey Zillygoat,
    I've been on the d3 regimen  for 9 days now, and am having a similar experience as you. Kinda of like a shadow but not really, mine feel like a hangover headache. Luckily I've not had any attacks for 7 days, just this shadowy thing.  I really think the D3 stopped my cycle, cause I was only about a week into it. I am interested to know your D3 level when you get your results. I ordered a home testing kit yesterday. I've been searching the side effects of too much D3 and headache or dehydration are not listed. I'm taking 20,000IU.
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Re: 123 Days PF And I Think I know Why
Reply #1284 - Feb 21st, 2013 at 10:30pm
 
Just a note to folks who still need to have their 25(OH)D serum level checked. Even though your insurance might not pay for it, I found that the lab I use for all my other blood testing will only charge me their contracted rate for the test - not full retail price. It costs me $24.

But you have to ask.
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Re: 123 Days PF And I Think I know Why
Reply #1285 - Feb 22nd, 2013 at 11:06am
 
Although I'm not quite ready to stand on the rooftop and declaim Batch's vitamin regimen to the world as THE cure for The Beast... I must admit I've got the ladder out.

At the moment my head is totally quiet. Zero shadows, nuttin'. Normally during a cycle I always feel something, even a low level K2-3ish. I began the regimen a week ago today, and the last few nights have been characterized by: sleep.

Oh and when they drew blood to do some other tests a few weeks ago turns out it's still around so they're doing the D3 testing as we speak. I will post the results!

David
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Re: 123 Days PF And I Think I know Why
Reply #1286 - Feb 22nd, 2013 at 11:13am
 
DJP,

Great question.  For starters, 10,000 IU/day vitamin D3 is not a high-dose...  Some neurologists routinely prescribe 100,000 IU/day vitamin D3 for their Relapsing-Remitting Multiple Sclerosis (RRMS) patients.

The simple answer is there haven't been any studies completed taking sustained oral doses of vitamin D3 at 10,000 IU/day.  That said, we're out in front of the power curve and most neurologists with the anti-inflammatory regimen using a vitamin D3 dose of 10,000 IU/day as a cluster headache preventative.

There are several RCTs in progress calling for even higher doses for up to 90 days.  I might add however, that none of these RCTs are using any of the vitamin D3 cofactors.

For example, in one RCT, the dietary supplement: vitamin D3 (cholecalciferol) liquid vitamin D solution (vitamin D3 in ethanol) is being taken daily at one of three possible doses (400, 10,000, or 40,000 IU/d) for 4-6 weeks prior to radical prostatectomy. 

There's another study in progress comparing daily vitamin D3 intakes of 5,000 and 10,000 IU/day for patients suffering from RRMS.

I've spoken with several RRMS patients who have taken 100,000 IU/day vitamin D3 under their physician's supervision for up to a month to combat a flare up of their multiple sclerosis before getting tested for 25(OH)D and falling back to a maintenance dose of 10,000 IU/day.

Regarding the IOM recommendations on vitamin D3 intake... You've hit a nerve... and it isn't my left trigeminal ganglion either... 

If readers of this post are not up to a tutorial on what big government bureaucrats and dirt bag politicians are doing to our healthcare and how much regulating power big government should have to restrict your access to USP supplements like oxygen and vitamin D3...  please read no further...

A vitamin D3 Recommended Dietary Allowance (RDA) of 400 IU/day and Tolerable Upper Intake Level (UL) of 4,000 IU/day are two of the most absurd recommendations from the big government bureaucrats I've ever seen...

The first thing you need to understand is the Food and Nutrition Board (FNB) panel at Institute of Medicine (IOM), who made the initial recommendation for an RDA of 400 IU/day and a UL of 4000 IU/day was made up of four clueless bureaucrats...  not physicians.

In my humble opinion, knowing what I know now, were these practicing physicians making recommendations like this to their patients, they would be subject to malpractice...

Unfortunately, three of the "expert" members of the FNB panel who made this recommendation are tenured professors from academia... and the fourth is a long time government bureaucrat at DHHS. 

None of the four are practicing physicians or licensed nutritionists so have never treated someone with a vitamin D3 deficiency... yet when provided with the results of thousands of clinical observations attesting to the safety and efficacy of vitamin D3 at doses up to 10,000 IU/day and higher by practicing endocrinologists...  they ruled otherwise and opted for the present RDA and UL.

"Expert" panel members at the IOM from the US and Canada who reviewed the FNB recommendations appeared to have fallen into the grasp of the medical evidence mafia...  In other words, unless there are several concurring randomized, placebo controlled, double-blind clinical trials on the safety and efficacy of vitamin D3, the huge body of clinical evidence gathered over the last 20 years by practicing physicians attesting to the safety and efficacy of vitamin D3 therapy... means absolutely nothing...

The frightening part of all this is these are the same kind of big government bureaucrats who are already administrating obamacare... 

They are also among the same big government bureaucrats in healthcare who already ruled that there is insufficient medical evidence on the efficacy of oxygen therapy as an abortive for cluster headache...   

In this case, the big government bureaucrats at the Centers for Medicare and Medicaid Services (CMS) made a non-coverage determination that denies Medicare beneficiaries suffering from cluster headache (like me), coverage for oxygen therapy...  So much for covering the treatment of existing medical conditions...  Yet another lie... and these bureaucrats already administer obamacare so stand by for more non-coverage determinations...

If that's not bad enough...  the government doesn’t just want to discourage you from taking extra Vitamin D, they also want to prohibit you from taking it at higher doses above the RDA and UL.

Senator Dick Durban, D-Ill., in 2011 introduced a bill (innocuously labeled the “Supplement Labeling Act”) which would so over-regulate the supplement industry that they could no longer supply products such as Vitamin D3 at a cost affordable to the average consumer.

Here’s an example of the IOM’s logic. It recommended 600 IU of vitamin D3 for a pregnant woman. It then said that the moment the baby is born, it should have 400 IU while the mother continues to need 600 IU. On the face of it, this makes no sense at all.

The IOM committee was also apparently about to restate the safe upper intake level of vitamin D3 well above the previous 2,000 IU per day. Then, just before publication, and for no apparent reason—certainly no reason based on science—it reversed course and pulled a meager 4,000 IU out of thin air as the new upper limit.

Scientists such as John Cannell, MD, who have really studied vitamin D3, suggest that 4,000 IU would be a more reasonable recommended daily allowance, not an upper limit.

Don’t forget that the FDA in 1972 tried to ban any supplement dose higher than 400 IU unless taken under a doctor’s prescription.

What both the FDA and the Institute of Medicine have in common is that both agencies know very little about supplements... but are nevertheless deeply biased against them.

In the FDA’s case, this may be because of all the fees that the agency gets from the "big pharma" drug companies. Or because many of the agency’s outside panelists who make these determinations are paid by the drug companies.

In the IOM’s case, many of its experts of course also receive fees from drug companies. Yet these are the people whom Senator Durbin wants to give complete arbitrary power over supplements!

For example, under the senator’s bill...  that's been stalled in committee, but could emerge at any time...  the FDA could require warnings on supplement labels of any length that would say anything the government wants, no matter how unreasonable.

It would create lists of “bad” ingredients or “bad” dosages based on completely arbitrary or nonexistent standards. Whatever the FDA says would go. And once an ingredient or supplement is singled out for this treatment, there is no process to challenge the determination, not even if new or contradictory evidence comes to light.

This is really bad legislation...  just like obamacare...

Please don't take my assessment of the IOM recommendations as gospel...  Read for yourself what other experts in vitamin D therapy have stated then you decide:

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If that's not enough, Google "Reinhold Veith + IOM" or "Robert Heaney + IOM".

I should also point out again that it's not just the idiot big government bureaucrats that make these recommendations...  We also have a politburo full of elected idiots, quislings and RINOs signing legislation they didn't write or read that was prepared by special interest groups... that will eventually prevent us from taking 10,000 IU/day vitamin D3 to control our cluster headache.

These are the same kind of elected idiot dirt bag politicians who are presently using scare tactics and fear mongering to insult us... saying that the sequestration legislation proposed by Obama, passed in 2011 by both parties and signed into law by Obama, is now going to cause the mother of all financial catastrophes...   

These include among other things, massive layoffs, furlows, school closings, no fire or police response, 3-hour TSA delays at airports, and criminals released because there are no prosecuting attorneys...  What a crock of BS!!!

In order to understand the load of bull crap these dirt bags are trying to sell us, you only need to understand a few federal budget basics...

1. We haven't had a budget passed by Congress in 4 years so we've been operating on a series of continuing resolutions...

2.  Under a continuing resolution each year's budget is equal to last year's budget (the baseline) plus an additional amount equal to the rate of inflation times the increase in population times last year's budget...

3. This increase happens automatically with each continuing resolution passed and the amount added each year to the previous year "baseline" is approximately $100 Billion Dollars or an additional annual increase in the total federal budget of 4 to 5%.

Consider the following facts provided by the Congressional Budget Office on the United States federal budget over the last five years:

2009 United States federal budget - $3.1 trillion (submitted 2008 by President Bush) 

2010 United States federal budget - $3.6 trillion (submitted 2009 by President Obama)

2011 United States federal budget - $3.8 trillion (submitted 2010 by President Obama)

2012 United States federal budget - $3.7 trillion (submitted 2011 by President Obama)

2013 United States federal budget - $3.8 trillion (submitted 2012 by President Obama)

The upcoming series of sequestration cuts will cut $1.2 Trillion over the next ten years, with $85 billion kicking in for FY 2013 on March 1...

Here's where a little math comes in handy...  If the federal budget grows by $100 Billion a year and this year's part of the sequestration is $85 Billion Dollars...  Then next year's federal budget will grow by $15 Billion Dollars...

So where is this horrendous budget cut that will do all the terrible damage Obama claims will happen?  Another lie!

Please don't get me wrong...  The sequestration legislation is terrible on several counts...  For starters, too many people don't understand the word sequestration...  or how it is being applied...  If it was called what it really is, a cut in the rate of budget growth, most would understand it's reasonable and not the end of the world.

(1) There is no actual cut in the baseline budget...  The FY 2013 budget will be larger than last year... but the increase won't be as large as in previous years.

(2) The cuts are mandatory across the board on all accounts with no provisions to move money around between accounts...  A good manager could move funds around to minimize the impact of not getting the planned budget increases...  but Congress did not want to give Department managers this option...  they might cut funding to useless pet pork barrel projects mandated by Congress...

(3) Half of these cuts come disproportionally out of the Defense Budget... The Defense budget is roughly 17% of the total budget yet it is getting hit with half the sequestration cuts... What is really disturbing is the sequestration cuts come on top of the 10% Defense budget cut Obama has already imposed.

(4) The cuts in non-defense spending are not big enough...  We will still have another $1 Trillion Dollar deficit... on top of a $16.558 Trillion Dollar National Debt...  See: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

In closing here are a few things to ponder... there were over 6,100 new regulations issued by the obamanoids in the 90 days prior to the November election...  and an estimate 10,000 more due out on obamacare... 

Most of these regulations will increase the cost of living and all of them rob us of our freedoms one way or another.

More and more of the promised benefits of obamacare are turning out to be lies... just as the biggest fears about obamacare are coming true.

Finally... elections have consequences... 

If you want to keep your present access to vitamin D3 and the other supplements at doses that help prevent your cluster headaches... call, write or email your Senators and Congressional Representatives.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1287 - Feb 22nd, 2013 at 11:13am
 
Careful using the "c" word around here - If you take something once or twice and never suffer from the malady again, THAT would be a cure.

This is still just a treatment.
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Re: 123 Days PF And I Think I know Why
Reply #1288 - Feb 22nd, 2013 at 4:25pm
 
Word of caution: Long post (first time)

Have only recently found this site.  41 years old and have had CH since I was 16.  I was in much worse shape when I was younger because no doctors had a clue what was wrong.  Back then I would go 6 to 8 months at a time and only get a couple of months of a break.  About 10 years ago I finally found a doctor who diagnosed the cluster headaches and was able to knock them out.  Verapamil has been the most effective method, but they have also used antidepressants and anti-sezuire medicines depending on the doctor.  Since they diagnosed them I usually get breaks of 2 to 3 years between episodes.  I actually had been pain free for about 4 years until a couple a weeks ago.  I know this may sound crazy but I actually think I triggered this episode by drinking a powdered magnesium citrate drink for the first time (had my first one later that night kip 6 or 7).

Anyways, I recently had just started to get into vitamins and had already been taking D3 for about a month (5000 IU's).  Between the multivitamin, magnesium, fish oil and my vitamin C I think I take everything in this protocol except for the Boron (checked the multivitamin last night).  I did go to the doctor to get the Verapamil prescription last week, but I HATE VERAPAMIL (get heart flutters, etc.)  First few doses of Verapamil made it worse, so I stopped (they gave me 120 mg slow release to take twice a day).  Just yesterday I took 20,000 IU's of D3 and will do again today.  Last two nights were rough (constant headaches after about 1 hour of sleep),so I did take 240 mg last night (doubled up the dose) because I was having a rough night.  Today seems to be better (only a couple of light shadows) but I am not sure if it is the extra Vitamin D3 kicking in or the Verapamil. 

I will update as I figure out more.  I am still debating on going to find the calcium citrate because I think I get enoug already.  Also I am scared to get better magnesium after what I experienced.
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Re: 123 Days PF And I Think I know Why
Reply #1289 - Feb 22nd, 2013 at 5:31pm
 
Wmutim - welcome. You don't mention anything about oxygen. Have you looked into it?
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Re: 123 Days PF And I Think I know Why
Reply #1290 - Feb 22nd, 2013 at 5:36pm
 
You had me at "Big Government."  Say no more.  Those over-funded clowns aren't worth the paper they're printed on.

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« Last Edit: Feb 22nd, 2013 at 5:38pm by djphrenzy »  
 
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Re: 123 Days PF And I Think I know Why
Reply #1291 - Feb 23rd, 2013 at 3:30am
 
I re-read most of this thread and after digesting all of batch's information I mixed things up a bit - I reduced the D3 to 10,000iu, reduced the calcium by half, upped the zinc and magnesium and started eating nuts and seeds (to help with ph levels) - the results = no CH for over a week, just the occassional shadow.
For anyone sitting on the side lines, not sure whether to give this regime a go - what are you waiting for? I was struggling a bit because it wasn't working but Batch offered some suggestions and what can I say - this lovely guy certainly knows what he's talking about.  If the basic regime isn't working then let Batch know - it could be something as simple as elevating your ph levels by changing your diet.
For the record my ph levels have gone from 5.75 to 7.25 just by adding the nuts and seeds to my breakfast.
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Re: 123 Days PF And I Think I know Why
Reply #1292 - Feb 23rd, 2013 at 4:06am
 
Balanchine

No I haven't tried oxygen as of yet. Rough night tonight but I am going to keep up with the d3. Think the Verapamil might be helping because I was about 20 hours after my last dose when I got hit with a 10. I do have access to oxygen at work so may try to figure out how to do a hit at work if this episode keeps up
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Re: 123 Days PF And I Think I know Why
Reply #1293 - Feb 23rd, 2013 at 8:15am
 
Batch,
Please tell us what you REALLY think of BIG government and their attacks on individual rights and liberties.  It took me a year to convince neurologist to let me try oxygen and another year to get BC-BS to pay for some of it and now you say Medicare is not going to cover any of the cost for oxygen therapy?  Will be going on Medicare in December, is there anything I can do NOW to establish O2 as a viable treatment for CH attacks with the Medicare folks?  I did all the initial research on O2 for my neurologist, drafted a letter for him (which he edited and added appropriate medical verbiage) sent this along with a letter from me explaining the monetary benefits of oxygen over Imetrex shots and they eventually agreed to help with the cost.  Also had to have neurologist write a yearly letter for me to get 18 Relpax a month instead of the recommended 9 per month.  Was always denied initially and twice had to have attorney write a letter to BC-BS before they would agree to dosage. Educating big insurance to CH treatment was a constant battle, probably not even possible with big government.
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Re: 123 Days PF And I Think I know Why
Reply #1294 - Feb 26th, 2013 at 11:14am
 
Hi Batch,
Finally got the last 2 test results back - D3 is 300 - I knew it was going to he high and have knocked the dose back to 10,000 and the zinc was 10.1. Thanks again for all your help and advice
Sarah x
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Re: 123 Days PF And I Think I know Why
Reply #1295 - Feb 26th, 2013 at 9:05pm
 
300 what?

Furlongs per fortnight?
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Re: 123 Days PF And I Think I know Why
Reply #1296 - Feb 26th, 2013 at 9:47pm
 
New to the site a few weeks ago.  38 year old male.  This is only my second cycle.  The first was three years ago but was diagnosed as TN by my PCP.  The ol friend returned Jan 16 and started treatment as TN again.  After a few weeks was referred to a Neuro and was told I had cluster headaches.  Mine are during the day.  Usually three attacks and they usually last three hours or I'll have two with the second one lasting 5-6 hours.  Topamax lasted two days.  Side effects did me in quick, it was ugly. So I found this site and started the D3 regimen on 2/14.  I had to take it slow they were rough on the stomach for a couple days.  On 2\19 I was on the basic regimen  with a multi vitamin and magnesium.  On 2/22 I started the 20,000IU per day with the one day 50,000iu.  I also started Verapamil on 2/15 at 120mg and bumped it on 2/19 to 240mg.  Neuro and PCP have been pretty good but neither will give me oxygen.
Had the 25(oh)D test done yesterday.  Results today were 32ng/ml.  Also met with Internal Dr. yesterday.  Going to do enzyme testing to find out what else I am lacking and how I can fix any thyroid or other organ problems that may be contributing to the vita d deficiency.  i do have hyper thyroid and am hoping to correct that though proper nutrition.
So through all of that, tomorrow will be the end of six weeks on this cycle.  Things were different yesterday when I woke up.  The pain has dulled and moved toward the top of my fore head. The pain level and frequency were  way down.  Today was even better, only a dull 5 headache for a couple hours.  So either I'm ending the cycle, the D3 regimen is working or the Verapamil is kicking in or maybe all three.  Also all three doctors were ok with the regimen but all three are not in agreement on the level I want to be at.  I am going to go on a diet through my Internal Dr. but he's going to have to accept the therapeutic levels.  I will get levels checked in a month or two and report back.  Also I was given the sumatriptan air syringes but quickly found that the rebound headache the next day wasn't worth it.  Thanks Batch for all this info on here.  Hope all this info can be helpful to someone else too.
one2
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« Last Edit: Feb 26th, 2013 at 9:52pm by one2 »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1297 - Feb 26th, 2013 at 10:28pm
 
Enli, Oxyrunner,

Sorry to be so slow in responding... Some good weather over the last few days gave me an opportunity to buck up and split some windfall trees for fire wood...

Enli, what I said about big government stands... We're all getting screwed and we didn't even get a kiss... 

As far as the CMS non-coverage determination for oxygen therapy for Medicare beneficiaries suffering from cluster headache goes... there's little hope of having it overturned and I'm afraid we're going to be screwed again when obamacare kicks in and drives private medical insurance companies out of the market. 

The only saving grace is big government is so inefficient it could take a while for the droid bureaucrats to connect the dots.  When they do, plan on taking up welding... or buying your medical oxygen out of pocket.

I've fought the bureaucrats at CMS since 2009 with no satisfaction.  In March of 2010, the American Headache Society picked up the challenge and launched an official request to CMS to review their non-coverage determination.  Dr. Fred Sheftell, MD, who was President of AHS at the time, actually called me to discuss what I had been doing on this topic and indicated AHS had assembled a team of experts to have the non-coverage determination overturned.

I worked with Dr. Sheftell's team  for several weeks, but they didn't realize how diabolical the bureaucrats at CMS can be when they sink their teeth into a political agenda like this.

Unfortunately, CMS used the power of the bureaucratic pen and prevailed in October of 2010 reaffirming their non-coverage determination so the entire effort was a total loss. Dr Sheftell, a chronic migraineur, passed away in April 2011 after a four year battle with colon cancer.

Oxyrunner, I'm happy something worked for you.  A low arterial pH can lower the effectiveness of nearly all CH medications...  Adding seeds and nuts to your diet was a good move...

Take care and please keep me 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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Re: 123 Days PF And I Think I know Why
Reply #1298 - Feb 26th, 2013 at 10:29pm
 
I wonder if anyone has an idea why this treatment would help so many people,  and busting would help so many people.  What is the corrolation between the two methods?  They must be achieving the same results somehow, but how? Undecided
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christine neville weaver  
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1299 - Feb 27th, 2013 at 4:28am
 
Hmmm...  Interesting question... and I'm not sure we're going to get a good answer until some organization puts up a big chunk of coin to do all the research... 

We do know that both methods of preventing cluster headache work...  You'll need to talk with Bob Wold to get the busting numbers...

Dr. John Halpern's 2-bromo-LSD (BOL) also appears to be an effective CH preventative, although only a handful of CH'ers have had the opportunity to try it...

The only connection I know of between the anti-inflammatory regimen and busting is a bit thin...  and it deals only with shrooms... They're also high in ergocaciferol...  vitamin D2...

Take care,

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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